living a good life with arthritis

LIVING A GOOD LIFE WITH ARTHRITISMANAGING PERSONAL GOALS TO IMPROVE PSYCHOLOGICAL HEALTH

Roos Y. Arends

LIVIN

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LIFE W

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Rosa (Roos) Ymkje Arends holds a Master of Science in Psychology and com-

pleted her Ph.D. at the Department of Psychology, Health and Technology at the

University of Twente, The Netherlands. Her Ph.D. thesis focuses on the role of

goal management for the psychological health of people with arthritis.

The thesis describes the relationship between goal management and psycholo-

gical adaptation to arthritis and the development and evaluation of a goal ma-

nagement programme for people with arthritis and mild depressive symptoms.

Concept_Cover_Roos-Arends2.indd 1 29-08-16 13:53

LIVING A GOOD LIFE WITH ARTHRITIS

Managing personal goals to improve

psychological health

PROEFSCHRIFT_ROOS_ARENDS_def.indd 1 30-08-16 10:05

Thesis, University of Twente, 2016

ISBN: 978-94-91602-69-6

© R.Y. Arends, 2016

Cover design: Sinds 1961 Grafisch Ontwerp, Ede (www.sinds1961.nl )

Printed by: Printservice Ede, Ede, The Netherlands

The studies presented in this thesis were financially supported by Stichting Reumaonderzoek

Twente and the Institute of Behavioural Research of the University of Twente.

The printing of this thesis was financially supported by Sanofi Genzyme, NHL Hogeschool,

and Essenburgh Training & Consultancy.


LIVING A GOOD LIFE WITH ARTHRITIS

Managing personal goals to improve psychological health

PROEFSCHRIFT

ter verkrijging van

de graad van doctor aan de Universiteit Twente,

op gezag van de rector magnificus,

prof. dr. H. Brinksma,

volgens besluit van het College voor Promoties

in het openbaar te verdedigen

op donderdag 6 oktober 2016 om 16.45 uur

door

Rosa Ymkje Arends

geboren 24 oktober 1984

te Kollumerland en Nieuwkruisland


Dit proefschrift is goedgekeurd door:

Prof.dr. M.A.F.J. van de Laar, promotor

en

Dr. C. Bode en Dr. E. Taal, copromotoren

Samenstelling promotiecommissie

Promotor Prof. dr. M.A.F.J. van de Laar Universiteit Twente,

Medisch Spectrum Twente

Copromotoren Dr. C. Bode Universiteit Twente

Dr. E. Taal Universiteit Twente

Commissie Prof. dr. R. Geenen Universiteit Utrecht

Dr. M.S.E. van Hout Medisch Spectrum Twente

Prof. dr. A.V. Ranchor Rijksuniversiteit Groningen

Prof. dr. P.L.C.M. van Riel Radboud Universitair Medisch Centrum

Prof. dr. R. Sanderman Universiteit Twente,

Rijksuniversiteit Groningen

Prof. dr. G.J. Westerhof Universiteit Twente


Contents

1 General introduction 7

PART I 27

The relationship between goal management and psychological adaptation

to arthritis

2 The role of goal management for successful adaptation to arthritis 29

3 The longitudinal relationship between patterns of goal management and 53

psychological health in people with arthritis: The need for adaptive flexibility

4 Exploring preferences for domain-specific goal management in patients with 79

polyarthritis: What to do when an important goal becomes threatened?

PART II 103

The effect of a goal management programme on the psychological health of

people with arthritis and mild depressive symptoms

5 A goal management intervention for polyarthritis patients: Rationale and 105

design of a randomized controlled trial

6 A goal management intervention for patients with polyarthritis and mild 135

depressive symptoms: A quasi-experimental study

7 A mixed-methods process evaluation of a goal management intervention 157

for patients with polyarthritis

8 Summary and discussion 187

Dutch summary (Nederlandse samenvatting) 213

Acknowledgements (Dankwoord) 219

About the Author 225

List of publications 227


1


1General introduction



9

GENERAL INTRODUCTION

Introduction

A few years ago, Jeannette was diagnosed with rheumatoid arthritis. After some difficult

years, the inflammation finally went into remission due to proper medical treatment.

During this rough period, she abandoned her job as a secretary at an estate agency. Once

the arthritis went into medical remission, Jeannette’s energy finally returned, but not to her

former level. Since the beginning of her illness, Jeanette has worried about her husband

Jan and their two adolescent daughters. When the oldest daughter moved out to live with

her boyfriend, Jeannette could not resist calling her several times a day, checking to ensure

that she was all right or in need of help or advice. Jeannette’s controlling behaviour was

increasingly causing tension in the family.

For years, Jeannette and Jan had been playing tennis with friends every week and enjoying

coffee afterwards. Unfortunately, they had to more often cancel this engagement due to

Jeannette’s rheumatic disease. Jeannette became more unhappy after leaving her job, and

with the loss of this social activity and contact, she felt as if she were losing a grip on her life

and didn’t know how to stop it.

One day while running errands, Jeannette accidentally met her old tennis friends. During

the conversation that followed, she realised that they could plan less intensive activities

together such as taking a walk or visiting a museum. The friends responded with enthusiasm

to her suggestion and they immediately set a date for the following week. Back home,

Jeannette browsed the internet searching for suitable activities and by accident visited the

website of the town’s historical windmill. Seeing a call for new volunteers for their adjacent

shop, she at first hesitated – It might be too hard with her arthritis? – but then contacted

them and made an appointment.

A few weeks later, she now feels completely at home in the friendly group of volunteers at

the mill’s shop. Although being the youngest volunteer, she enjoys the new social contacts

and the chance she has to contribute. The atmosphere at home has significantly improved as

Jeannette’s need to control her family members has diminished. She has less time to spend

worrying and feels less need to track her husband and daughters all day. In addition, she has

her own stories to tell after a day at the shop. Her eldest daughter sometimes even calls her

to chat when she has not heard from Jeannette for some days.1

1 Adapted from: Arends, Bode, Taal & van de Laar, 2012. Doelbewust! Trainershandleiding & Deelnemers

materiaal [Right on Target. Trainer’s Guide and Participants’ Material]. Universiteit Twente & Reumacentrum

Twente.


10

CHAPTER 1

The World Health Organization [1] defines health as “a state of complete physical, mental

and social wellbeing, and not merely the absence of disease or infirmity.” This definition,

however, has received criticism for being too static, strengthening the medicalization of

society, neglecting the human capacity to cope, and hampering operationalisation and

hence health measurements [2-5]. Alternative definitions of health have been suggested,

including the one by Huber and colleagues [2] who view health as the ability to adapt and

to self-manage in the face of social, physical and emotional challenges. This description

explicitly emphasizes a more dynamic view, as it embraces resilience and the ability to cope

and maintain one’s integrity, equilibrium and sense of wellbeing [6]. The focus on resilience

and affiliated factors as supporting mechanisms to improve wellbeing originates from the

field of positive psychology. This scientific field stimulates research on two approaches, that

is, health as the ability to be resilient and the search for what makes a person flourish and

resilient [7-9]. These two approaches to wellbeing are becoming particularly necessary as

the number of persons with a chronic disease such as arthritis rapidly increases due to a

rise in aging populations and also because people with one or more chronic diseases are

living longer [10,11]. In turn, health care systems are facing different, long-term demands

as compared to the acute life-threatening diseases for which these systems were originally

designed and are still organized around [10]. For the most part, the patients themselves,

their family or their caregiver spend the majority of time and effort caring for the main

part of their illness [12]. While patients spend approximately 5,800 waking hours per year

caring for themselves and their condition, they will only spend few hours with health care

professionals. This implies that patients need the skills to care for themselves; they need the

confidence to deal with day-to-day decisions about their health; and above all, they need

the ability to live a healthy and satisfying life despite any chronic condition(s) they might

have.

Polyarthritis

Polyarthritis is collective term for a variety of chronic rheumatic disorders which typically

involve inflammation in five or more joints and an association with an auto-immune

pathology. Characteristic of many rheumatic diseases are periods of worsening disease

activity, unpredictable and sudden flares consisting of inflammation and swelling in the

joints, and unpredictable disease prognosis [13,14]. The predominant diagnoses are

rheumatoid arthritis, psoriatic arthritis and ankylosing spondylitis. Rheumatoid arthritis

(RA) has received the most research attention as it is a common form of polyarthritis, with

a prevalence of 0.5 - 1% in the adult population in industrialized countries [15]. In general,

patients experience sustained daily stressors, such as pain, fatigue, impaired physical

functioning, disability, deformity, distress and a reduced quality of life [16,17]. The efficacy

of pharmacological treatment has improved significantly in this century, moving the primary

focus of health care from care to cure. However, some patients never reach remission, and


11


the development of new pharmacological treatment is needed to help all patients.

Among other struggles, a chronic disease such as polyarthritis poses the challenge upon

an individual to achieve and maintain psychological health. Psychological health can be

described as the presence of wellbeing and the absence of distress [18,19]. Throughout this

thesis, a set of outcomes is used to provide a multicomponent view of psychological health.

These indicators of wellbeing are: the experience of a purpose in life, positive emotions,

and satisfaction with social participation. Furthermore, symptoms of depression and anxiety

are used to indicate distress. Earlier studies on the psychological health of persons with

polyarthritis have mostly focused on depression. Interest in the symptom anxiety in this

patient group has augmented in recent years while the presence of wellbeing has received

little research attention.

Research on distress has shown that persons with polyarthritis, when compared with

healthy controls, experience elevated levels of depressive mood and anxiety [20,21]. Studies

in RA populations indicate that 20 - 40% suffer from heightened depression and anxiety

levels [20,22-26]. Alongside treatment of physical symptoms, it is necessary to concentrate

on these symptoms of distress to improve overall wellbeing [27].

Based on the ‘classic’ biomedical framework, for decades research has focused on

identifying pathways between disease symptoms and resulting functional limitations, and

decreased psychological and social functioning. This focus has led to the understanding that

symptoms, uncertainties and consequences of the disease, together with pro-inflammatory

cytokines, are risk factors for the development and maintenance of mood disorders and

lower wellbeing [28,29]. A relatively recent improvement in treatment approach can be

found in personalized medicine, where individual profiles of genes, biomarkers or other

phenotype information inform pharmacological tailored treatment for an individual patient

[30,31].

In contrast to the biomedical approach, the biopsychosocial approach is holistic and

comprehensive, emphasizing and including social and psychological dimensions of the

illness [32]. Taking these dimensions into account enables a more complex but also more

comprehensive view of health and disease and their impact on the individual [33]. Studies

adopting the biopsychosocial approach show that suboptimal psychological and social

wellbeing is related to an increased impact of the disease. For example, in a large population

survey, psychological distress among arthritis patients was related to poorer physical health

[34]. Furthermore, psychological distress is known to increase health care utilization and

medical costs [35] and to negatively influence medication adherence and response to

treatment [36].

Person-centred care

The cautious shift from a biomedical to a biopsychosocial model of health has stimulated the

emergence of patient-centred care [37-39]. Patient-centred care is based on a deep respect


12

CHAPTER 1

for patients as unique living beings and the obligation to care for them on their conditions

[40]. As Epstein and Street (p. 100) [40] state: “Patients are known as persons in the context

of their own social worlds, listened to, informed, respected, and involved in their care – and

their wishes are honoured (but not mindlessly enacted) during their health care journey.”

Patient-centred care is an increasingly applied concept in the care for patients with chronic

diseases over the last decades. Although established as a whole-system approach in research

and theory, patient-centeredness is often limited to patient-professional interactions during

consultations [41,42]. This implies that components of the patient-centred approach that are

considered ‘useful’ are viewed as complementary to the biomedical model. Although health

professionals support person-focused values, care processes largely remain routinized and

ritualistic and lack opportunities for the formation of meaningful relationships between

patients and health professionals [43,30]. As a consequence, patient-centred care too often

becomes stripped down to a disease-oriented and visit-oriented approach [41]. Often,

the terms patient-centred care and person-centred care (or person-focused care) are used

interchangeably [37]. Throughout this thesis, the term person-centred care (as well as

person-focused care) refers to the whole package of principles and activities that forms

around the life of a person and functions in the biopsychosocial framework [44]. Thus,

person-centeredness does not refer to a biomedical disease-oriented framework, but to a

framework that includes prevention and management of the patient’s problems in multiple

domains over time [41,45,44,31,30].

The principles of person-focused care are highly applicable to the care of arthritis patients

(as well as for all patients with chronic diseases). Supporting self-management and shared

decision making are at the heart of person-centred care [46]. Patients should be equal

partners in the planning, development and evaluation of care in order to assure it is most

suitable for their needs [46]. By making the person more responsible for his or her own care,

self-efficacy and self-management can be enhanced and supported [47]. Care should be

focused on the problems or health concerns as they are experienced by a person in his or her

context (for example, pain, fatigue or disabilities in the workplace caused by the disease),

and treatment should be targeted accordingly [41]. Health services should promote control,

independence and autonomy for the patient, their caregivers and families [46].

Existing selfmanagement programmes

Self-management programmes are central in a person-focused approach to care and

indispensable to accomplishing effectiveness and efficiency by empowering patients.

However, benefits of self-management interventions for patients with arthritis in disease-

related terms and psychological outcomes are disappointing, especially in the long-term

[48-51]. Systematic reviews concerning self-management interventions for patients with

arthritis show small to moderate results on outcomes, that are, nevertheless, short-lived

[i.e. 52,53,49,48]. The necessary identification of effective ingredients is complicated by


13


the use of various and numerous outcomes and a lack of clarity about the contents of an

intervention [48,49]. One systematic review and meta-analysis has indicated that differing

results of self-management programmes can be traced back to theoretical underpinnings

or the lack thereof [54]. The most successful interventions in terms of a prolonged

increase of psychosocial and disease outcomes are based on social cognitive theory [55]

and systematically include more self-regulation techniques [54,56]. It follows that self-

management interventions should be built on a solid theoretical base in order to generate

prolonged differences in the lives of people.

Shifting from diseasecentred to personcentred selfmanagement

Self-management interventions need to be taken one step further, and this can be

accomplished by incorporating a person-centred view. Many existing self-management

interventions focus above all on the management of the disease and bodily symptoms of

the disease, while from a person-focused approach, the whole life of a person is the centre

of attention. Two common characteristics of self-management programmes - the focus on

disease management and the predetermination of content and goals in interventions - are

described below. This discussion is followed by an alternative approach that derives from

the person-centred view.

Concerning the focus on disease management, traditional self-management interventions

primarily focus on illness-related aspects. However, being diagnosed with arthritis implicates

changes in many, if not all, domains of life, as Jeannette’s story at the start of this Chapter

illustrates. Major pre-determined aims might be reducing pain and fatigue, but for most

patients, other aspects of life may be more important. For example, qualitative research

revealed arthritis patients as having difficulties with maintaining or attaining goals in several

other life domains, including work, leisure activities, social relationships and domestic tasks

[57,58]. Programmes aimed at self-managing arthritis should, therefore, broaden their

scope of life domains and recognize the interplay of all domains. In addition, programmes

should not only focus on optimization of (physical) functioning but also on aspects such

as motivation and meaning. To stimulate effective self-management, the current focus of

providing information on symptom management and lifestyle choices needs to shift to a

more collaborative model, in which patients are proactive in identifying areas that could be

improved for their own self-management [47,37].

Concerning the second common characteristic of traditional self-management programmes,

their aims are typically predefined according to treatment guidelines and, as such, do not

necessarily relate to the goals of the participants or their domains of personal importance.

It has repeatedly been demonstrated that only internalized goals produce considerable

effects in terms of life style changes, medication adherence and disease management

outcomes [59-61]. Despite this, traditional self-management programmes focus on goal

attainment and goal maintenance, for example, in the Arthritis Self-Management Program


14

CHAPTER 1

people are encouraged to perform physical exercises regularly [62]. Pursuing an unrealistic

or unattainable goal may result in reduced mental and physical health and wellbeing

[63-65]. While such advice might be logical and useful for most arthritis patients, it is not

person-focused when it is offered indiscriminately to all participants, as it is not based on

personal goals or needs, but instead on a clinical point of view. One of the four principles

of person-centred care is: “supporting people to recognize and develop their own strengths

and abilities to enable them to live an independent and fulfilling life” (p. 6) [37], from

which it follows that a self-management programme should be built on the principles of

resilience and empowerment. This implicates that a self-management course should provide

individuals with the methods to best influence their own lives, leaving the decision of what

to influence or change to the patients themselves.

Goal-based coping

In summary, the basic principles upon which self-management interventions should be built

are: a solid theoretical base in order to cause long-term effects, a focus on a collaborative

model to enhance resilience and empowerment, and methods to cope with personal goals.

Useful insights for designing interventions around personal goals stem from developmental

psychology and psychogerontology. Scientists have observed that people are able to

maintain a stable level of wellbeing and a sense of personal efficacy in old age, despite

the accumulation of aversive changes and deteriorating health [66]. This phenomenon

is referred to as the disability paradox [67], and it shows similarities with the process of

successful adaptation to a chronic disease, described as an ongoing process of finding

equilibrium in a situation that constantly changes [68]. Note also the similarities of these

findings to the new definition of ‘health’ as previously quoted [2]. Successful adaptation is

closely linked to resilience, a concept that is described in various ways [69], for example, as

achieving a positive outcome in the face of adversity [70], as an outcome or a process [71],

or as the ability to recover from stress or adversities [72]. In the case of chronically ill people,

the latter conceptualisation might be most appropriate. Coping processes and mechanisms

related to resilience can lead to a variety of developmental trajectories, i.e. more or less

successful outcomes of adaptation and health [73].

The perspective of self-regulation provides a useful framework for studying the mecha-

nisms underlying resilience and adaptation in the context of chronic disease and disability

[74,75]. Self-regulation models assume most human behaviour to be goal-directed, and

progress or failure in goal attainment has affective consequences [76,77,59]. Several theories

describe adaptive self-regulatory processes [78-80]. These processes commonly share the

human capacity to shape one’s development within the context of one’s own strengths and

limitations by means of balancing between the striving towards attainable goals and the

adjustment of goals that are no longer feasible [75].

Goals play a fundamental role in wellbeing as they imbue life with meaning and provide a


15


structure within which one can define life [76,80-83]. Maintaining and attaining achievable

goals can offer satisfaction, at least as long as goal attainment remains feasible. For various

reasons, goals may become increasingly difficult to pursue or an important goal may

become no longer feasible. In some instances people are able to resolve this incongruity by

exerting more effort towards reaching a goal or by increasing their commitment to the goal

[84]. But when a major goal is no longer feasible or when an unrealistic goal is pursued, a

negative influence on a person’s wellbeing can occur, ultimately leading to a reduction of

one’s wellbeing and mental and physical health [63-65].

Goal management strategies intend to minimize discrepancies between the actual

situation and a person’s goals. Therefore, such strategies can be seen as possible ways to

react to difficulties encountered along the path towards a goal. Two existing models of goal

management focus on several goal management strategies (see Table 1). The first is the dual-

process framework that incorporates both assimilative and accommodative modes of coping

[85,65,86]. In the assimilative coping mode (strategy of goal maintenance) active attempts to

alter unsatisfactory life circumstances and situational limitations are carried out to maintain

goals. A shift from the assimilative to accommodative process is thought to occur when

goals exceed available resources or become unattainable [75,87,88]. Accommodative coping

(strategy of goal adjustment), on the other hand, occurs when goals are adjusted to match

the personal boundaries of what remains possible. Self-evaluative standards and personal

goals are revised in accordance with perceived deficits and losses. The accommodative

coping mode helps to reduce feelings of helplessness and to preserve a sense of efficacy [75].

The second model focuses on goals that are experienced as no longer attainable; this

Table 1 The Dual Process Framework and Goal Adjustment Model: Authors, strategies and descriptions

Theory and description Authors Strategy Description

Dual-process framework: Brandtstädter & Goal maintenance Conscious actions aimed at adjusting

Two modes or self-regulation Rothermund, 2002; (assimilative coping undesirable situations so that

processes that are intended to Brandtstädter, 2009. mode) important goals can be retained.

decrease discrepancies between Goal adjustment Modifying or abandoning an

the actual situation and the (accommodative unattainable goal. This is achieved by

desired situation coping mode) adjusting expectations and

preferences.

Goal Adjustment Model: Wrosch, Scheier, Goal disengagement The ability of a person to let go of an

Two separate self-regulation Carver & Schulz, unattainable goal and decrease the

processes that play a role when 2003; perceived importance of that goal.

the maintenance of a goal is no Wrosch, Scheier, Reengagement in The identification of new, alternative

longer possible, i.e. a goal is Miller, Schulz, & new goal(s) goals and the initiation of activities

perceived as unattainable. Carver, 2003. aimed at these new goals.


16

CHAPTER 1

goal adjustment model involves two strategies [78,83]. The goal disengagement strategy is

defined as the withdrawing of effort and commitment from an unattainable goal. This may

help a person avoid accumulated experiences of failure [89]. In addition, it may help a person

redefine the goal as not necessary for life satisfaction, and thereby allow him or her to accept

the inability of reaching the goal [80,78]. Another more long-term benefit of the use of this

strategy is the release of personal resources that can be deployed for beneficial effects in

other areas of life, alternative actions and new goals [78]. The strategy of reengagement

in new goals consists of the identification of alternative goals, the assignment of value

to these goals, and the initiation of activities directed toward goal attainment [83]. Goal

reengagement can improve subjective wellbeing by engaging in personally meaningful

activities [82]. Also, new personal goals that assume the place of abandoned goals seem

appositively connected to a person’s sense of identity [83].

Goalbased coping in patients with chronic diseases

Chronic disease can cause various degrees of severe goal interference for patients and

their close friends and families. The strategies from both coping models shown in Table 1

have been found to play an important role in adjustment to chronic disease and disability.

Numerous observational studies have indicated the roles the various goal management

strategies play when used by persons adapting to a chronic disease [74,90-96]. Studies with

diverse patient groups showed that goal-based coping tends to relate more positively to the

patients’ quality of life, lessens symptoms of depression, and provides more positive affect

and general adjustment to the disability [97-99]. A study among patients with multiple

sclerosis showed that low goal disengagement in combination with low goal reengagement

was beneficial for preventing symptoms of depression, whereas a combination of high goal

disengagement and low goal reengagement related to heightened symptoms of depression

[95]. A study with patients of peripheral arterial disease revealed that the pursuit of new

goals was of great importance for psychological wellbeing [93]. Maintenance of unattainable

goals and disengaging from goals without reengaging in new realistic goals is seen as risky

with regard to mental health [65,100,78].

Thus, research supports the assumption that goal management strategies are essential

for the adaptation to a chronic disease. Goal-based coping can facilitate adaptation to the

circumstances of the chronic disease by recognizing threatened personal goals, finding

optimal ways to deal with threatened goals in different life domains, and ultimately re-

engaging in new goals to ensure a positive future perspective. The flexibility of persons

to adjust their behaviour to an ever-changing environment is called ‘coping flexibility.’

Coping flexibility has primarily been investigated in populations with mental health

problems or work stress [101-103]. This ability to flexibly respond and cope with changing

situations and fluctuating levels of functioning might be especially beneficial for people

with a chronic disease to maintain their psychological health. However, most of the current


17


knowledge regarding the applicability and usefulness of goal management strategies in

chronic disease populations, including those with polyarthritis, stems from cross-sectional

studies. Consequently, longitudinal studies are needed to gain more insight into the causal

relationships between goal interference, applied goal management strategies and their

effect on psychological health in persons with polyarthritis.

Adopting a self-regulation perspective that consists of multiple strategies that enable an

individual to cope with goal interference may be especially valuable in the context of a chronic

progressive disease like polyarthritis. It is likely that patients attribute a higher importance to

goals in one domain than in others (for example, Jeannette valued social activities as being

more important than tennis). Goals in some domains, i.e. prosocial goals and goals that

transcend the person, relate stronger to wellbeing than goals in other domains [104,105].

Authors have underlined the value of the assimilative and accommodative coping modes,

as they recognize the influence of contextual factors while also capturing their dynamic,

interactive quality [106,107]. As this complexity is difficult to assess with the standardized

self-reporting questionnaires commonly used in coping research, little knowledge of domain-

specific goal management actually exists [108]. In addition, measurement methods capable

of measuring domain-specific goal management are lacking. More insight into preferences

for goal management in specific domains may increase the knowledge base on effective

goal-based coping and interventions that aim to improve psychological health.

Aim and outline of this thesis

To conclude, the precise relationships between a range of goal management strategies and

adaptation to polyarthritis are unknown. Knowledge of effective goal-based coping can

help health care providers identify those patients with polyarthritis who are at risk of poor

psychological outcomes as well as guide the providers in how to best stimulate patients’

resilience. Person-centred interventions are needed to help persons with polyarthritis achieve

and maintain psychological health. Such a self-management intervention can be developed

based on goal-based coping. This thesis is organized around two research questions: The

first question focused on the relationship between goal management and psychological

adaptation to arthritis. The second question resulted in the design of a goal management

programme to stimulate adaptation to polyarthritis for people with depressive symptoms

and then studied the effects of this newly designed programme.

Question I: What is the relationship between goal management and psychological

adaptation to arthritis?

Part I of this thesis describes three studies that were conducted in order to answer this

first question. In Chapter 2, goal management was cross-sectionally related to adaptation

in a sample of persons with polyarthritis. An integrated model of goal management


18

CHAPTER 1

was presented that combines four goal management strategies: goal maintenance, goal

adjustment, goal disengagement, and goal reengagement. The objective of this study was to

examine how these goal management strategies related to psychological distress (symptoms

of depression and anxiety) and wellbeing (purpose in life, positive affect, and satisfaction

with social participation) in this patient group in an observational setting.

Chapter 3 describes the objective of the next study that aimed to identify patterns

consisting of various strategies of goal management among persons with polyarthritis. To

date, no studies have been performed on the relationship between goal-based coping and

outcomes in terms of psychological health over time. This gap in the scientific literature

was addressed with the researched conducted on the cross-sectional and longitudinal

relationships between the patterns of goal management and psychological health were

studied. Subsequently, the development of a method to measure preferences for goal

management in several domains of life is described. As previously discussed, generally goal

management has been studied as a personal characteristic or general tendency. Previous

studies have indicated that the relationship between wellbeing and the pursuit of a goal

might depend on the domain from which the goal originates [104,105]. Therefore, a domain-

specific measurement method can enable research on this topic. Furthermore, it is unknown

whether preferences for goal management of persons with polyarthritis depend on the

domain from which a goal originates. Preferences for specific strategies might differ across

domains and situations in which goal interference is experienced. To research these areas,

a questionnaire to study domain-specific goal management was developed and applied in

a sample of persons with polyarthritis. Described in Chapter 4, the questionnaire consisted

of arthritis-related vignettes – hypothetical stories – wherein arthritis interferes with a

valued goal, and respondents were asked to provide possible solutions for the goal-related

problem. The objective of this study was to gain insight into how patients preferred to cope

with a threatened goal in a specific domain. This questionnaire enabled a comparison with

other measurement methods that focus on general tendencies of goal-based coping, and it

provided more insight into domain-specific coping preferences of persons with polyarthritis.

Question II: What is the effect of a goal management programme on the psychological

health of people with arthritis and mild depressive symptoms?

In Part II, three studies are described that were conducted in order to answer the second

question of this thesis. Building on the studies described in Part I, a group programme

based on goal-based coping was developed from a person-centred perspective. In Chapter

5 the rationale behind this programme is described, as well as the design of a trial into the

effect of the programme. A multi-centre study was executed to examine the effect of the

goal management programme in increasing adaptation. Both outcomes in terms of distress

(symptoms of depression and anxiety) and wellbeing (purpose in life, positive affect and

social participation) were examined. In Chapter 6 the results of this quasi-experimental trial

are discussed. For this study, the goal management programme was offered in four clinics to


19


persons with polyarthritis with mild depressive symptoms. Participants were compared to a

reference group on indicators of distress and wellbeing, and strategies of goal management

were studied as assumed mediators. To complement the effect study, a thorough process-

evaluation into the newly developed programme was executed using triangulation of data

from different methods, as described in Chapter 7. This chapter recounts the key components

of the goal management programme from the perspective of the participants and the

fidelity of the programme. Implications for person-centred interventions are also discussed.

Finally, Chapter 8 summarises and provides a general discussion of the results of the previous

chapters, followed by recommendations for practice and future research.


20

CHAPTER 1

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j.1471-6712.2006.00418.x


The relationship between

goal management and

psychological adaptation

to arthritis

Part I


2


2The role of goal

management for

successful adaptation

to arthritis

R.Y. Arends

C. Bode

E. Taal

M.A.F.J. van de Laar

Patient Education and Counseling 2013, 93: 130138

DOI:10.1016/j.pec.2013.04.022


30

Abstract

Objectives

Persons with polyarthritis often experience difficulties in attaining personal goals due

to disease symptoms such as pain, fatigue and reduced mobility. This study examines the

relationship of goal management strategies - goal maintenance, goal adjustment, goal

disengagement, goal reengagement - with indicators of adaptation to polyarthritis, namely,

depression, anxiety, purpose in life, positive affect, participation, and work participation.

Methods

305 patients diagnosed with polyarthritis participated in a questionnaire study (62%

female, 29% employed, mean age: 62 years). Hierarchical multiple-regression-analyses

were conducted to examine the relative importance of the goal management strategies for

adaptation. Self-efficacy in relation to goal management was also studied.

Results

For all adaptation indicators, the goal management strategies added substantial explained

variance to the models (R2: .07 - .27). Goal maintenance and goal adjustment were significant

predictors of adaptation to polyarthritis. Self-efficacy partly mediated the influence of goal

management strategies.

Conclusions

Goal management strategies were found to be important predictors of successful adaptation

to polyarthritis. Overall, adjusting goals to personal ability and circumstances and striving

for goals proved to be the most beneficial strategies.

Practice implications

Designing interventions that focus on the effective management of goals may help people

to adapt to polyarthritis.

CHAPTER 2


31

Introduction

The current study focused on the adaptation of people with polyarthritis to their disease.

Polyarthritis encompasses a variety of disorders, including rheumatoid arthritis (RA),

ankylosing spondylitis and psoriatic arthritis. Disorders classified as polyarthritis are typically

involved with inflammation in five or more joints and associated with auto-immune

pathology. Inflammation generally causes pain, fatigue and swelling in multiple joints. In

spite of medical treatment that may alleviate polyarthritis, for many patients, pain, fatigue,

disability, deformity, and reduced quality of life persist [1,2]. Patients often face difficulties

with attaining or maintaining goals in several domains of life, including work, social

relationships, leisure activities and domestic tasks [3,4].

Five key elements of successful adaptation to a chronic disease have been identified [5]:

(1) the successful realization of adaptive tasks; (2) the absence of psychological disorders; (3)

the presence of low negative affect and high positive affect; (4) adequate work/functional

status; (5) and satisfaction and wellbeing in various life domains. It follows that both the

absence of psychological distress and the presence of well-being are important for successful

adaptation to arthritis. In the present study two negative (depression, anxiety) and three

positive (purpose in life, positive affect, participation) indicators of adaptation are used, as

these are thought to be important issues for polyarthritis patients.

As a result of its high prevalence compared to healthy controls [6], depressive mood in

RA patients has gained much attention in the scientific literature. Moreover, research has

shown that RA patients tend to have increased levels of anxiety [7]. Previous findings also

revealed lower levels of purpose in life in patients with RA in comparison with healthy

populations [8]. Purpose in life - a central aspect of wellbeing - means: “the feeling that

there is a purpose and meaning in life, (…) a clear comprehensibility of life’s purpose, a

sense of directedness, and intentionality” (p. 1071) [9]. Positive affect, another indicator

of wellbeing, lowered the increase in negative affect when levels of pain were elevated

in patients with arthritis [10,11]. The experienced level of participation in society is also

an essential indicator of adaptation to arthritis, referring to a person’s involvement in life

experiences, such as socializing and performing one’s role in the context of the family.

Polyarthritis has been shown to negatively affect participation and work ability [12-14].

Lowered work ability or work loss can imply financial costs for society. For the individual

patient, it can mean loss of status, family income and social support [12].

Polyarthritis demands specific competencies by patients for successful adaptation. Due to

the absence of a cure, lifelong self-management is essential for coping with polyarthritis.

The fluctuating course of polyarthritis and uncertain disease progression threaten patients’

feelings of autonomy. Therefore, a sense of regulatory efficacy is of major importance

for wellbeing [15]. Higher self-efficacy for coping with disease symptoms in RA patients is

correlated with less fatigue, increased physical ability, decreased pain, improved mood, and

THE ROLE OF GOAL MANAGEMENT FOR SUCCESSFUL ADAPTATION TO ARTHRITIS


32

CHAPTER 2

improved adherence to health recommendations [16-20].

However, maintaining life as it was before disease onset is often impossible for patients

with a progressive chronic disease [21]. Research should therefore not only focus on the

management of the disease, but also on how the patient adjusts to abandoning activities

and life goals that are no longer feasible. Research has shown that adjusting personal

standards and life goals is as important for wellbeing as pursuing personal goals [22].

Goal management strategies are intended to minimize discrepancies between the actual

situation and the goals a person has. These strategies can be seen as possible ways to react

to difficulties along the path towards a goal. The dual-process model [23-25] incorporates

both assimilative and accommodative modes of coping. The assimilative mode is directed

at maintaining goals by actively attempting to alter unsatisfactory life circumstances and

situational constraints in accordance with personal preferences. Maintaining goals that are

achievable gives people a purpose in life and can offer satisfaction. Accommodative coping

is directed towards a revision of self-evaluative standards and personal goals in accordance

with perceived deficits and losses—an approach that adjusts goals to the personal bounds

of what remains possible. In contrast, the goal adjustment model [26] focuses on goals that

are experienced as no longer attainable. This model combines goal disengagement with

goal reengagement. Goal disengagement consists of withdrawing effort and commitment

from an unattainable goal, with the benefit of releasing limited resources that can then be

deployed for alternative actions and new goals. Goal reengagement consists of identifying,

committing to and starting to pursue alternative goals. New personal goals seem important

for promoting a person’s sense of identity [27] and subjective wellbeing, which should be

improved by engaging in personally meaningful activities [28].

The models are partly complementary, and neither is comprehensive with regard to the

possible goal management strategies a polyarthritis sufferer – or indeed anyone – can adopt.

To be comprehensive but still straightforward, we hypothesized a model that integrates

the four strategies (see Fig. 1). This integrated model of goal management focuses on

goal maintenance, goal adjustment, and goal reengagement. The maintenance of goals is

considered to be the preferred strategy when a person still perceives opportunities to attain

a goal. Goal adjustment is more suitable for situations in which goals are under threat. Goal

reengagement seems an appropriate strategy at all times, to complement existing goals or

replace unattainable goals. We hypothesized that the strategy of disengaging from goals is

one facet of the broader strategy goal adjustment.


33


Figure 1 Integrated Model of Goal Management

To the best of our knowledge, there have been no previous studies that have combined

both models of goal management. However, several studies have explored the relationship

between goal management strategies and distress for various chronic diseases. Adjustment

of goals was found to have beneficial effects on depression and social dysfunction in vision-

impaired adults [29]. Among patients with chronic pain, the ability to adjust goals buffered

against the deteriorating effect of the pain experience on depression [25]. A study with

patients diagnosed with peripheral arterial disease suggested that, when patients applied the

strategy of engaging in new goals, this resulted in fewer depressive symptoms [30]. Another

study among patients with multiple sclerosis found that combining low disengagement and

low reengagement resulted in fewer depressive feelings [31]. To summarize, the relation

between the use of the goal management strategies and distress for patients with a chronic

disease is not completely clear yet. For facets of wellbeing in chronic disease, research has

shown positive associations with the use of various goal management strategies [29,31,32].

In the present research, both distress (anxiety and depression) and wellbeing (purpose in

life, positive affect and participation) as indicators of adaptation to a chronic disease were

studied.

The main research question was as follows: What is the role of various goal management

strategies (goal maintenance, goal adjustment, goal disengagement, and goal reengagement)

for adaptation to polyarthritis, as operationalized by the following indicators: anxiety,

depression, purpose in life, positive affect, and participation? Hypothesized was that the

use of goal management strategies relates positively to successful adaptation. Within

the integrated model of goal management, we hypothesized goal disengagement to be

a subcategory of goal adjustment, which would imply a strong relationship between the

two strategies. As said before, arthritis related self-efficacy is known to be an important

mechanism in adaptation to a rheumatic disease, therefore we studied main effects of self-

Goal threathened Goal unreachableSevere difficulties withattaining goal

• Instrumentalactivities• Self-correctiveactions• Compensatorymeasures

• Downgradingofaspirations• Disengagementfrombarren

goals• Positivereappraisalof

situation• Self-enhancingcomparisons

• Identifyingnew/alternative

goal

• Commitingtonewgoal

• Startingtopursuenewgoal

Maintain goal Adjust goal Reengage in new goal


34

CHAPTER 2

efficacy on adaptation. The self-efficacy a person perceives in managing disease symptoms

like pain and fatigue may also play a role in the effectiveness of different ways of goal

management a person can utilize. Therefore, we also examined the role of self-efficacy in

relation to goal management strategies and adaptation.

Methods

Sample

For this questionnaire study, participants were selected from an outpatient clinic for

rheumatology. Based on the following inclusion criteria, 803 patients were at random

selected from the electronic diagnosis registration system: (1) patient is diagnosed

with polyarthritis; (2) patient is receiving treatment for polyarthritis. Subsequently, the

rheumatologists checked the chart of every patient for the additional inclusion criteria: (3)

patient is 18 years or older; (4) patient is able to complete the questionnaire in Dutch, either

autonomously or with help. Out of 803 patients, 164 were not approached because they

did not meet the inclusion criteria. The internal review board of the Faculty of Behavioural

Sciences at the University of Twente approved the study.

Procedure

A total of 639 patients received an invitation letter, together with the questionnaire and

an informed consent form. In time, 305 questionnaires and signed informed consents (48%)

were received. Table 1 shows the demographic and clinical characteristics of the participants.

Measures

Questions were asked about sex, age, marital status, education and employment. Disease

duration was asked with the following question: ‘In which year did the complaints associated

with your arthritis start?’ All other questionnaires - including the measures for the goal

management strategies and the five indicators of adaptation - are described in Table 2.


35


Demographic characteristics

Sex, n (%)

Male 116 (38.0)

Female 189 (62.0)

Age (years), mean (SD), range 62.25 (13.3), 18-91

Marital status, n (%)

Not living with partner 76 (24.9)

Living with partner 223 (73.1)

Missing 6 (2)

Educational level, n (%)a

No/Lower 125(41.0)

Secondary 109 (35.7)

Higher 64 (21)

Missing 7 (2.3)

Work status, n (%)

No paid job 212 (69.5)

Full-time and part-time employment 88 (28.9)

Missing 5 (1.6)

Disease characteristics

Diagnosis, n (%)

Rheumatoid arthritis 168 (55.1)

Gout and other crystal diseases 32 (10.5)

Polymyalgia & Temporal Arteriitis 29 (9.5)

Spondylarthropathy 24 (7.9)

SLE and other systemic diseases 20 (6.6)

Other/non-classifiable 32(10.5)

Disease duration (years), mean (SD), range 14.78 (12.2), 1-71

Comorbidities, n (%)

Disease of the cardiac or circulatory system 52 (17)

Sensory disorder 47 (15)

Disorder of the skin 47 (15)

Disorder of the digestive system 43 (14)

Disorder of the respiratory tract 37 (12)

Disorder of urinary of genital 35 (11)

Metabolic disorder 31 (10)

Other (e.g. blood disease, malignancy, mental illness, allergy) 145 (48)

a Low: No education, primary school or lower vocational education; Middle: high school and middle vocational

education; High: high vocational education and university.

Table 1 Demographic and Clinical Characteristics of the Participants (n=305)


36

CHAPTER 2Ta

ble

2 Ch

arac

teris

tics

of th

e Q

uest

ionn

aire

s us

ed in

this

Stu

dy

Vari

able

Sc

ale

Aut

hor

Exam

ple

Item

s Re

spon

se o

ptio

ns

N

α Sc

ale

M

SD

ra

nge

Co m

orbi

dity

Ch

eckl

ist w

ith 1

5

Base

d on

the

Inte

r-

16

29

2

0-16

1.

43

1.5

ca

tego

ries

of

natio

nal C

lass

ifica

-

cond

ition

s a

tion o

f Dis

ease

s

(IC

D-10

: WHO

, 199

2)Fu

nctio

nal

HAQ

-DI

Frie

s, Sp

itz, K

rain

es,

Are

you

able

to d

ress

you

r- 20

w

ithou

t any

diffi

culty

30

3 .9

2 0-

3 .9

8 .7

6lim

itatio

ns

&

Hol

man

, 198

0 [3

3] s

elf,

incl

udin

g ty

ing

shoe

-

(0) -

unab

le to

do

(3)

la

ces

and

doin

g bu

ttons

?Pa

in

1 ite

m n

umer

ical

Amou

nt o

f pai

n in

the

1 no

pai

n at

all

(0) -

29

7 -

0-10

4.

05

2.46

ra

ting

scal

e

past

7 d

ays,

caus

ed b

y

un

bear

able

pai

n (1

0)

poly

arth

ritis.

Fatig

ue

100

mm

vis

ual

M

ean

amou

nt o

f fat

igue

1

no fa

tigue

(0) -

com

p-

296

- 0-

100

42.0

0 26

.47

an

alog

ue s

cale

in th

e pa

st 7

day

s.

lete

ly e

xhau

sted

(100

) G

oal

Tena

ciou

s G

oal

Bran

dtst

ädte

r &

Whe

n fa

ced

with

diffi

culti

es,

15

stro

ngly

dis

agre

e (1

) -

298

.73

15-7

5 46

.94

6.18

mai

nten

ance

Pu

rsui

t (TG

P)

Renn

er, 1

990

[34]

I u

sual

ly d

oubl

e m

y ef

fort

s.

stro

ngly

agr

ee (5

)

Goa

l Fl

exib

le G

oal

Bran

dtst

ädte

r &

I ada

pt q

uite

eas

ily to

15

st

rong

ly d

isag

ree

(1) -

29

9 .7

9 15

-75

51.9

0 6.

52ad

just

men

t Ad

just

men

t Sca

le

Renn

er, 1

990

chan

ges

in p

lans

or

st

rong

ly a

gree

(5)

(F

GA)

circ

umst

ance

s.

G

oal

Goa

l Adj

ustm

ent

Wro

sch,

Sch

eier

, If

I hav

e to

sto

p pu

rsui

ng a

n 4

stro

ngly

dis

agre

e (1

) -

297

.53

4-20

11

.68

2.31

dise

ngag

emen

t Sc

ale

Mill

er, e

t al.,

200

3

impo

rtan

t goa

l in

my

life,

stro

ngly

agr

ee (5

)

[2

6]

it’s

easy

for m

e to

redu

ce

my

effo

rt to

war

ds a

goa

l.

G

oal

Goa

l Adj

ustm

ent

Wro

sch,

Sch

eier

, If

I hav

e to

sto

p pu

rsui

ng

6 st

rong

ly d

isag

ree

(1) -

29

8 .8

8 6-

30

21.2

0 b

3.57

b

reen

gage

men

t Sc

ale

Mill

er, e

t al.,

200

3 an

impo

rtan

t goa

l in

my

life,

stro

ngly

agr

ee (5

)

I see

k ot

her m

eani

ngfu

l

goal

s.

Se

lf-ef

ficac

y

Arth

ritis

Lo

rig, e

t al.,

198

9 I a

m c

erta

in th

at I

can

keep

5

stro

ngly

dis

agre

e (1

) -

300

.83

1-5

3.24

.8

0pa

in

Self-

Effic

acy

Scal

e c

[18]

ar

thrit

is p

ain

from

stro

ngly

agr

ee (5

)

inte

rferin

g w

ith m

y sl

eep.


37


Self-

effic

acy

for

Arth

ritis

Lo

rig, e

t al.,

198

9 I a

m c

erta

in th

at I

can

6 st

rong

ly d

isag

ree

(1) -

29

5 .8

2 1-

5 3.

50

.65

othe

r sym

ptom

s

Self-

Effic

acy

Scal

e

cont

rol m

y fa

tigue

.

stro

ngly

agr

ee (5

) An

xiet

y

Hosp

ital A

nxie

ty

Zigm

ond

& S

naith

, I f

eel t

ense

or w

ound

up.

7

vario

us re

spon

se

302

.83

0-21

5.

24

3.69

an

d De

pres

sion

19

83 [3

5]

form

at (0

-3)

Sc

ale

(HAD

S)

Depr

essi

on

HADS

Zi

gmon

d &

Sna

ith,

I hav

e lo

st in

tere

st in

my

7 va

rious

resp

onse

30

2 .8

1 0-

21

4.73

3.

59

19

83

appe

aran

ce.

fo

rmat

(0-3

) Pu

rpos

e in

life

Pu

rpos

e In

Life

Ry

ff, 1

989

[9];

Ryff

My

daily

act

iviti

es o

ften

6 st

rong

ly d

isag

ree

(1) -

29

8 .8

2 6-

30

21.8

4 3.

85

scal

e (P

IL) d

& K

eyes

, 199

5 [3

6]

seem

triv

ial a

nd

st

rong

ly a

gree

(5)

un

impo

rtan

t to

me.

Po

sitiv

e af

fect

Po

sitiv

e sc

ale

of

Wat

son,

Cla

rk, &

Ra

te h

ow y

ou fe

lt du

ring

10

very

slig

htly

or n

ot a

t 30

2 .9

2 10

-50

34.2

9 6.

96

the

Posi

tive

and

Telle

gen,

198

8 [3

7]

the

past

wee

k: e

.g.

al

l (1)

- ve

ry m

uch

(5)

N

egat

ive

Affe

ct

at

tent

ive,

inte

rest

ed.

Sc

hedu

le (P

ANAS

)

Pa

rtic

ipat

ion

The

fam

ily ro

le,

Card

ol, D

e Ha

an,

Dom

ain

auto

nom

y 19

ve

ry g

ood

(0) -

30

0 .7

6 0-

4 1.

33

.65

au

tono

my

outd

oors

, De

Jong

, Van

den

ou

tdoo

rs: T

he p

ossi

bilit

y to

very

poo

r (4

)

soci

al re

latio

ns

Bos,

& D

e G

root

, sp

end

my

(spa

re) t

ime

like

su

bsca

les

of th

e

2001

[38]

I w

ant i

t, is

…

Impa

ct o

n

Part

icip

atio

n an

d

Auto

nom

y (IP

A)

qu

estio

nnai

re e

Wor

k

The

wor

k an

d Ca

rdol

, et a

l., 2

001

The

poss

ibili

ty to

do

the

6 ve

ry g

ood

(0) -

11

4 .8

8 0-

4 1.

35

.78

part

icip

atio

n ed

ucat

ion

subs

cale

job

or v

olun

tary

wor

k th

at

ve

ry p

oor

(4)

of

the

(IPA)

f

I wan

t is

…

a Re

spon

dent

s co

uld

also

indi

cate

‘oth

er c

ondi

tions

not

list

ed ’;

b O

rigin

al v

aria

ble

show

n fo

r com

preh

ensi

vene

ss re

ason

s; c

Dutc

h tr

ansl

atio

n [3

9]; d

One

que

stio

n ab

out

ever

yday

pur

pose

in li

fe w

as a

dded

to th

e PI

L: ‘D

oing

the

thin

gs I

do e

very

-day

is a

sour

ce o

f dee

p pl

easu

re a

nd sa

tisfa

ctio

n.’;

e Th

e th

ree

part

icip

atio

n su

bsca

les

wer

e ad

d up

and

div

ided

by

thre

e, to

mak

e up

one

indi

cato

r of p

erce

ived

par

ticip

atio

n. W

ith th

ese

19 it

ems

a re

stric

ted-

to-o

ne-fa

ctor

prin

cipa

l com

pone

nts

anal

ysis

was

car

ried

out

to c

heck

the

one

fact

or s

truc

ture

of t

he IP

A. In

vest

igat

ion

of th

e sc

ree

plot

and

eig

enva

lues

val

idat

ed a

one

fact

or s

olut

ion

(eig

enva

lue

9.13

, 48.

03%

of t

he to

tal v

aria

nce

expl

aine

d); f

The

subs

cale

wor

k an

d ed

ucat

ion

was

onl

y ap

plic

able

to 3

7% o

f the

par

ticip

ants

and

is, t

here

fore

, not

sum

med

up

with

the

othe

r par

ticip

atio

n sc

ales

.


38

CHAPTER 2

Analyses

For the goal management, self-efficacy and adaptation scales, we tolerated a maximum of

25% of missing answers per scale. Missing values for these scales were replaced by the mean

score of the person for the completed items of the scale. For the statistical analyses, version

18 of the Statistical Package for the Social Sciences was used. Means, standard deviations

and ranges of scores were calculated for all studied variables. The normal distribution was

checked by inspection of the histograms and skewness and kurtosis values. A square root

transformation [40] was carried out for goal reengagement, as a result of non-normal

distribution. The resulting transformed variable was used in all analyses. The variables living

situation, education and disease duration were left out of the following analyses because

no significant correlations were found with the indicators of adaptation. The IPA subscale

entitled work and education was only completed by 37% of the participants and was,

therefore, not summed up with the other participation scales.

To test against the main research question regarding the relation of the goal management

strategies with the indicators of adaptation, separate hierarchical multiple regression

analyses that predicted each of the outcomes were conducted. Data met the requirements

of normality, linearity, multicollinearity and homoscedasticity. In the individual regression

analyses, outliers were studied [40]. For the variable purpose in life, one outlier was removed

(standardized residual: -4.0, Cook’s distance: .43).

In the first model, the demographic variables of sex, age and work situation were entered

to control for their predictive value on the indicators of adaptation. The disease related

variables—functional limitations, pain, fatigue and co-morbidity—were entered in the

second model, followed by the goal management strategies in the third model. The self-

efficacy variables were entered in the fourth model. The results of this analysis indicated

possible mediation effects, as some of the beta values of goal management strategies

decreased after entering the self-efficacy variables into the analysis. Therefore, additional

analyses to test possible mediation were performed. The significance of any mediation was

tested by use of the conservative Sobel test [41].

Additional analyses were carried out to investigate possible interactions using centred

scores, calculated by subtracting the mean score from respondents’ raw scores [42]. The

interactions of goal maintenance with goal adjustment and goal disengagement with goal

reengagement, as well as the interactions of functional limitations with goal maintenance

and with goal disengagement, were entered in the model as a fifth step.


39


Results

Preliminary analyses

Means, minimum and maximum scores, standard deviations and the Cronbach’s alpha of the

scales can be found in Table 2.

Correlations

For goal maintenance, we found weak but significant relations with depression, participation

and work participation; moderate relations with purpose in life and positive affect; and no

significant relation with anxiety (all correlations are shown in Table 3). Both goal adjustment

and goal reengagement showed significant negative correlations with anxiety, depression,

participation and work participation with weak to moderate associations, and weak to

moderate positive correlations with purpose in life and positive affect. Goal disengagement

only had significant but weak negative relations with anxiety and depression. Goal

adjustment had significant moderate relations with self-efficacy pain and self-efficacy

for other symptoms. Goal maintenance and goal reengagement had significant but weak

relations with both self-efficacy variables, and goal disengagement showed no significant

relations with self-efficacy. Both self-efficacy variables correlated moderate to strong with

all six indicators of adaptation. Finally, the disease variables functional limitations, pain

as well as fatigue, had significant moderate to strong relations with anxiety, depression,

participation and work participation, and low to moderate but still significant relations with

purpose in life and positive affect.

Multivariate relationships between goal management and adaptation

Six separate hierarchical multiple regression analyses were conducted to examine the

relative importance of the four goal management strategies and self-efficacy for the six

indicators of adaptation (see Table 4).

Anxiety

The goal management strategies together explained 13% of the variance in anxiety, and goal

adjustment was found to be the greatest predictor of anxiety. The disease-related variables

added 28% to the explanation of anxiety, of which fatigue was the greatest predictor.

Depression

Goal maintenance, goal adjustment and goal reengagement were meaningful predictors for

the variance in depression. The goal management strategies added 19% to the explanation

of variance in depression. None of the demographic variables had predictive value for

depression in the final model. Functional limitations, pain, fatigue and co-morbidity

explained 24% of the variance.


40

CHAPTER 2

Vari

able

1.

2.

3.

4.

5.

6.

7.

8.

9.

10

. 11

. 12

. 13

. 14

. 15

. 16

. 17

. 18

. 19

. 20

. 21

.1.

Sex

a -

2. A

ge

-.05

-

3. L

ivin

g si

tuat

ion

b -.2

0**

-.16*

* -

4. E

duca

tion

c .0

2 -.2

9**

-.02

-

5. W

ork

situ

atio

n d

-.18*

* -.5

0**

.11

.30*

* -

6.Di

seas

e du

ratio

n .0

2 .1

8**

-.04

.01

.15*

-

7. H

AQ-S

DI

.30*

* .2

4**

-.17*

* -.2

2**

-.35*

* .2

7**

-

8. P

ain

.20*

* .0

8 -.1

0 -.1

4*

-.22*

* .1

2*

.64*

* -

9. F

atig

ue

.15*

* -.0

6 -.0

5 -.0

1 -.0

8 .1

1 .5

6**

.66*

* -

10. C

o m

orbi

dity

.0

9 .1

7**

-.10

.06

-.16*

* .1

0 .4

0**

.30*

* .3

8**

-

11. G

oal m

aint

enan

ce

.00

-.31*

* .0

5 .2

0**

.25*

* -.0

1 -.1

5**

-.09

-.05

-.07

-

12. G

oal a

djus

tmen

t -.0

1 -.0

2 .0

1 .1

2*

.15*

.1

2*

-.13*

-.1

9**

-.25*

* -.1

4*

.16*

* -

13. G

oal d

iseng

agem

ent

.03

.16*

* -.0

0 -.1

3*

-.05

.10*

.0

3 .0

1 -.1

0 -.0

1 -.3

2**

.29*

* -

14. G

oal r

eeng

agem

ent

.08

-.14*

-.0

0 .1

4*

.18*

* .0

9 -.0

4 -.0

4 -.0

2 -.0

4 .0

3 .4

1**

.29*

* -

15. S

elf-e

ffica

cy p

ain

-.13*

-.0

2 .0

9 .0

8 .1

7**

-.05

-.52*

* -.5

5**

-.49*

* -.2

3**

.12*

.3

3**

.05

.13*

-

16. S

elf-e

ffica

cy o

ther

-.1

5**

.01

.09

.02

.09

.04

-.42*

* -.4

8**

-.52*

* -.2

8**

.16*

* .4

1**

.11

.25*

* .7

6**

-

17. A

nxie

ty

.03

.02

-.05

-.06

-.12*

-.0

4 .3

8**

.42*

* .5

1**

.33*

* -.0

9 -.4

3**

-.23*

* -.2

5**

-.36*

* -.7

8**

-

18. D

epre

ssio

n .0

2 .1

7**

-.08

-.19*

* -.2

8**

.07

.46*

* .3

7**

.46*

* .3

4**

-.27*

* -.5

0**

-.12*

-.3

2**

-.36*

* -.4

9**

.68*

* -

19. P

urpo

se in

life

-.0

8 -.1

0 .0

3 .1

1 .2

5**

.09

-.27*

* -.1

9**

-.29*

* -.1

5**

.33*

* .4

7**

.02

.32*

* .3

2**

.51*

* -.4

5**

-.60*

* -

20. P

ositi

ve a

ffect

-.1

0 -.0

4 .0

7 .1

0 .2

0**

.01

-.29*

* -.2

5**

-.37*

* -.1

8**

.33*

* .4

7**

-.03

.22*

* .3

4**

.48*

* -.4

4**

-.65*

* .6

2**

-

21. P

artic

ipat

ion

.08

.15*

-.0

9 -.1

6**

-.33*

* .0

4 .6

4**

.51*

* .5

6**

.37*

* -.2

0**

-.37*

* -.0

9 -.2

5**

-.52*

* -.5

5**

.52*

* .6

2**

-.51*

-.5

4**

-

22. W

ork

Part

icip

atio

n -.0

2 .1

3 .0

2 .0

3 -.1

3 -.1

0 .5

1**

.50*

* .5

1**

.34*

-.2

3*

-.43*

* -.0

9 -.1

7 -.5

4**

-.52*

* .5

3**

.56*

* -.4

8**

-.57*

* .7

4**

Not

e.

n= 1

84-3

05 fo

r all

varia

bles

, exc

ept W

ork

part

icip

atio

n, n

= 1

12-1

14. a 1

= m

ale,

2=

fem

ale;

b 0=

not

livi

ng w

ith p

artn

er, 1

= li

ving

with

par

tner

; c 1=

no/

low

er

educ

atio

n, 2

=se

cond

ary

educ

atio

n, 3

= h

ighe

r edu

catio

n; d 0

=no

pai

d jo

b, 1

= fu

ll-tim

e an

d pa

rt-t

ime

empl

oym

ent.

* C

orre

latio

n is

sig

nific

ant a

t the

.05

leve

l (2-

taile

d). *

* Co

rrel

atio

n is

sig

nific

ant a

t the

.01

leve

l (2-

taile

d).

Tabl

e 3

Pear

son

Corr

elat

ions

for a

ll St

udy

Varia

bles


41


Vari

able

A

nxie

ty (n

=27

2)

Dep

ress

ion

(n=

272)

Pu

rpos

e in

life

Po

siti

ve a

ffec

t Pa

rtic

ipat

ion

Wor

k pa

rtic

ipat

ion

ß

ß (n

=26

9)a

(n=

272)

(n

=27

1)

(n=

110)

ß

ß ß

ßDe

mog

raph

ic v

aria

bles

ΔR2

.0

2

.08*

**

.07*

**

.05*

*

.13*

**

.0

2

Sex

b

-.09

-.1

2*

.0

2

.01

-.1

1**

-.1

5

Age

-.0

4

-.04

.1

2*

.1

1

-.10*

.11

W

ork

situ

atio

n c

-.0

1

-.11*

.15*

.11

-.1

8***

.08

Dise

ase

rela

ted

ΔR

2

.28*

**

.24*

**

.07*

**

.13*

**

.3

9***

.39*

**

Func

tiona

l lim

itatio

ns

.1

5*

.2

8***

-.10

-.1

1

.43*

**

.2

6*

Pain

.06

-.0

4

.04

.0

9

-.04

.1

1

Fatig

ue

.2

0**

.1

6*

-.0

3

-.18*

.16*

*

.16

Co

mor

bidi

ty

.1

4**

.0

9

.02

.0

1

.08

.0

7G

oal m

anag

emen

t

ΔR2

.1

3***

.1

9***

.2

7***

.2

0***

.07*

**

.1

4***

G

oal m

aint

enan

ce

-.0

0

-.13*

.22*

**

.2

3***

-.05

.2

1**

G

oal a

djus

tmen

t

-.21*

**

-.2

9***

.28*

**

.2

8***

-.11*

-.24*

G

oal d

isen

gage

men

t

-.11*

-.04

.0

1

-.04

-.0

2

-.14

G

oal r

eeng

agem

ent

-.0

7

-.11*

.13*

.05

-.1

1*

.0

6Se

lf-ef

ficac

y m

edia

tion

ΔR

2

.03*

*

.03*

*

.05*

**

.03*

*

.02*

*

.03

Se

lf-ef

ficac

y pa

in

.1

7*

.2

1**

-.1

4

-.12

-.0

0

-.16

Se

lf-ef

ficac

y ot

her

-.2

9***

-.29*

**

.3

7***

.30*

**

-.2

0**

-.0

7To

tal m

odel

= R

2

.45*

**

.5

3***

.46*

**

.4

1***

.61*

**

.5

7***

a O

ne o

utlie

r was

rem

oved

; b 1=

mal

e, 2

= w

omen

; c 0=

no p

aid

job,

1=

full-

time

and

part

-tim

e em

ploy

men

t. *p

<.0

5. *

*p<

.01.

***

p<.0

01.

Tabl

e 4

Resu

lts H

iera

rchi

cal R

egre

ssio

n An

alys

is fo

r Ada

ptat

ion

Out

com

es


42

CHAPTER 2

Ada

ptat

ion

G

oal a

djus

tmen

t

G

oal m

aint

enan

ce

Goa

l ree

ngag

emen

t

ß

wit

hout

SE

ß w

ith

SE

Sobe

l (p)

ß

wit

hout

SE

ß w

ith

SE

Sobe

l (p)

ß

wit

hout

SE

ß w

ith

SE

Sobe

l (p)

Anxi

ety

-.24*

**

-.21*

**

-2.7

2 (.0

07)

De

pres

sion

-.3

1***

-.2

9***

-2

.87

(.004

) -.1

6**

-.13*

-2

.47

(.013

) -.1

4**

-.11*

-3

.23

(.001

)Pu

rpos

e in

life

.26*

**

.22*

**

2.62

(.00

9)

.18*

* .1

3*

3.95

(.00

0)Po

sitiv

e af

fect

.3

2***

.2

8***

3.

38 (.

000)

.2

6***

.2

3***

2.

50 (.

012)

Pa

rtic

ipat

ion

-.16*

* -.1

1*

-3.5

6 (.0

00)

-.1

3**

-.11*

-3

.40

(.000

)

Not

e. Δ

R2 =

.02

- .05

. *p

<.0

5. *

*p<

.01.

***

p<.0

01.

Tabl

e 5

Sign

ifica

nt M

edia

tion

of S

elf-e

ffica

cy fo

r oth

er s

ympt

oms

(SE)

on

Adap

tatio

n O

utco

mes


43


Purpose in life

Goal maintenance, goal adjustment and goal reengagement were found to be important

predictors of purpose in life, the four goal management strategies together explained 27%

of the variance. The disease related variables explained 7% of the variance.

Positive affect

In the regression model for positive affect, goal adjustment and goal maintenance were the

main predictors, and the four goal management variables explained 20% of the variance.

Of the disease-related variables (added explained variance was 13%), fatigue was the only

predictor that showed a significant contribution.

Participation

Of the goal management strategies, both goal adjustment and goal reengagement were

found to predict participation. Goal management added 7% to the explanation of variance

of participation. Functional limitations was the main predictor of the satisfaction with

participation. The disease variables together explained 39%. Work situation, sex and age

together explained 13%; all three were significant predictors of participation.

Work participation

For the satisfaction with work participation, goal adjustment was the main predictor

together with goal maintenance. The four goal management variables explained 14% of

the variance. The disease-related variables together explained 39%, but only functional

limitations was a significant predictor.

Arthritis related self-efficacy

Self-efficacy pain is a significant predictor for anxiety and depression, and self-efficacy for

other symptoms predicted all indicators of adaptation except work participation. The self-

efficacy variables added between 2 and 5% of explained variance to the model. Beta-values

of some of the goal management strategies decreased after entering self-efficacy for other

symptoms in the analyses (Table 5). Sobel tests showed significant partial mediation effects

of self-efficacy for other symptoms on these goal management strategies.

Analysis of interactions between combinations of predictor variables

The extension of the model with parameters for interactions of goal maintenance with goal

adjustment and goal disengagement with goal reengagement, as well as the interactions

of functional limitations with goal maintenance and with goal disengagement, explained

0-3% (n.s.) of the variance of the indicators of adaptation. The ß values for the interaction

parameters were between .00 and .15, and so are non-significant.


44

CHAPTER 2

Discussion and Conclusion

This study has shown that the tendency to adjust goals to personal abilities and circumstances

had the strongest relationship with all indicators of adaptation. People who reported a lower

tendency to adjust their goals scored higher on anxiety and depression. In line with this result,

people who reported a higher tendency to adjust their goals to changed circumstances,

experienced more purpose in life, more positive affect, and were more satisfied with their

participation in daily life and their participation in work and education. Without jumping to

causal assumptions, to be inclined to adjust threatened goals seemed to be associated with

successful adaptation. Besides adjusting personal goals, the tendency to maintain to strive

for goals also seemed to benefit adaptation to a chronic disease. Patients who have a higher

tendency to keep fighting for their goals experienced fewer depressive symptoms and

experienced more purpose in life, positive affect, and satisfaction with their participation

in the world of work. This finding highlighted the importance of pursuing personal goals

for wellbeing and adaptation. A higher tendency to disengage from goals was related to

lower levels of anxiety. Furthermore, a higher tendency to engage in new goals correlated

negatively with depression, but positively with satisfaction with participation and purpose

in life. This latter finding is in line with earlier research that indicated that patients who

actively search and pursue new goals experienced a more meaningful life, more satisfaction

with their participation and lower levels of depression [26].

The wide spectrum of adaptation that this study focused on is a differentiating feature,

especially because goal management has not been previously studied specifically in relation

to adaptation to polyarthritis. For patients, the absence of psychological distress and the

presence of positive affect, as well as the experience of a purpose in life and satisfaction

with participation are assumed to be important for their quality of life. Higher tendencies

to adjust goals when they become threatened due to chronic disease, maintain goals that

are within reach, and search for new goals clearly have positive relations with adaptation

to polyarthritis. Although these findings should not be interpreted causally due to the

nature of the study design, the results pointed to important processes in the process of

adaptation to arthritis. In the Introduction of this paper, we argued for an integrated model

of goal management, in which disengagement is hypothesized to be one of the facets of

the adjustment of goals. The data revealed a moderate positive correlation between goal

adjustment and goal disengagement and showed that the strategy of goal disengagement

explained almost no variance of adaptation, which could point to a high level of shared

variance with the strategy of goal adjustment. This finding supports the idea that goal

disengagement is an element of goal adjustment and not an independent goal management

strategy, thus supporting the integrated model of goal management described earlier in this

paper. As discussed in the next paragraph, the reliability of the subscale disengagement

is low and therefore caution is appropriate in interpreting the results. Furthermore,


45


longitudinal studies are needed to clarify the relations between the strategies adjustment

and disengagement of goals and to validate the integrated model of goal management.

The strategy disengagement of goals could explain little of the variance of the adaptation

outcomes in this study, which is in common with earlier findings [31]. However, the low

reliability of the disengagement subscale in the present study, despite careful forward/

backward translation of the items, might have partly influenced the results. Although the

scale consists of only four items, in earlier research sufficient alphas of .76 - .84 were found

[31,26]. Inspection of the items of the scale revealed some inconsistency about the meaning

of disengagement. Two items reflected the reduction of effort towards a goal (behaviour)

and two other items the relinquishment of commitment towards a goal (mental acceptance)

[26]. We believe the acceptance of surrendering a goal to be necessary for wellbeing and

adaptation. However, when the reduction of goal-directed behaviour is not accompanied by

acceptance, there can be a negative influence on both wellbeing and adaptation. Additional

analyses including the omission of one or more items could not increase the reliability.

Also, the regression analyses showed no other results with the use of a subset of the items.

However, the interpretation of the items could have caused the low reliability of the scale,

the results should therefore be interpreted carefully.

The tendency to engage in new goals showed less association with adaptation than

expected; in the final model, reengagement only had small relations with the indicators

of adaptation. A possible explanation for the small role of reengagement might be the

relatively high age of the participants. Reengagement may be of decreasing importance for

wellbeing when people grow older, due to fewer opportunities, failing physical health and

a shorter future perspective in comparison with younger or middle-aged adults [43]. More

research is needed to clarify the relation between age, reengagement and wellbeing.

Since adaptation and the use of goal management strategies may be related to the

seriousness of disease symptoms, co-morbidities, and demographic characteristics, we

included these variables in the regression analyses. The mean scores on functional limitations

and levels of pain and fatigue showed that patients did experience limitations and adverse

symptoms caused by their polyarthritis. The disease-related features contributed to the

explanation of the adaptation of arthritis. But still, the goal management strategies that we

studied revealed a meaningful independent contribution to the outcome measures.

Self-efficacy added 2 - 5% to the explained variance of the outcome measures. Furthermore,

self-efficacy only partly mediated some relationships between goal management strategies

and adaptation, showing that both concepts are to a large degree distinct. Earlier research

pointed to the essential role of arthritis related self-efficacy for study outcomes of arthritis

[44,17,45]. However, the results of the current study revealed that, at least for the outcomes

examined here, goal management strategies accounted for a high proportion of the

explained variance (7-27%).

There were no associations between adaptation outcomes and the combination of


46

CHAPTER 2

functional limitations with specific goal management strategies, indicating that for people

with various disease impact the tendency to use goal management has similar outcomes

for adaptation. Nor were specific combinations of goal management strategies related

to adaptation. As there were no meaningful interaction effects for the combinations of

goal management strategies nor for the combinations of functional limitations with goal

management strategies, we decided to not discuss the interactions at length.

Some remarks have to be made regarding the measurement of constructs. As a result of

the use of generic measures for the goal management strategies, there is no knowledge

about specific goals participants had in mind. Further research could complement the

present research by the use of other methods such as interviews, to clarify the complex goal

management constructs.

Pain and fatigue were each measured with one item in VAS or NRS format. Although

not multidimensional assessment methods, those were chosen to limit the length of the

questionnaire and for their frequent use in rheumatology research [46]. Moreover, pain and

fatigue are not key outcomes in this study and use of the questions satisfactory serves the

purpose for our examination.

The indicators of adaptation differ in their association with the disease-related variables,

thereby indicating the necessity of focusing on both distress and wellbeing, as mentioned

in Section 1. Fatigue and functional limitations showed relations with anxiety, depression

and participation in the regression analysis, thus displaying the negative influence that

rheumatic symptoms can have on successful adaptation to polyarthritis. The four disease

variables together explained a great deal of the variance in anxiety and depression, and could

almost explain 40% of the variance in participation and work participation. Participation

thus seemed to have the same pattern of relations with the disease related variables as the

key indicators of distress: anxiety and depression. As positive affect and purpose in life are

weaker related to the severity of pain, fatigue and functional limitations, those indicators

can probably have a buffering effect against adverse disease symptoms. This hypothesis for

positive affect is already supported by earlier research [47,11].

In the current study, pain could not explain any of the variance of the adaptation

indicators. This was in line with earlier research that showed that pain was not the most

important stressor for patients with arthritis [48,20]. By contrast, fatigue had a strongly

negative relation with adaptation. The relations between fatigue, severity of polyarthritis

and wellbeing seem both intertwined and complex [49,50]. The findings in the present

study highlight fatigue once more as an important symptom and stressor for patients with

polyarthritis, and therefore one that should receive sufficient attention and monitoring in

treatment [51,52].


47


Conclusions

The tendency to adjust threatened personal goals came out as especially important, followed

by the tendency to maintain striving for goals that are perceived as attainable. Subsequently,

if a goal should demand too much precious energy, searching and striving for an alternative

goal can alleviate the sense of loss. We conclude that flexibility in the management of goals

came out as especially important, by which we mean the competencies to adjust threatened

goals downward and to substitute goals that are clearly unattainable with those personally

vital goals that one wishes to continue pursuing. Future longitudinal studies will further

clarify the causal connection between goal management and adaptation, and give input to

psychosocial intervention programs.

Practice implications

This study highlighted the importance of effective goal management for people who

experience difficulties attaining their goals as a result of polyarthritis. Most intervention

programs aimed at improving the adaptation of patients to polyarthritis have focused

on increasing self-efficacy. In contrast, this study demonstrated the importance of goal

management for successful adaptation. Therefore, designing interventions that focus on

the effective management of goals may help people to adapt successfully to polyarthritis.

Acknowledgements

We highly appreciate the patients for their time and energy spent in voluntarily participation

of this study. We thank Dr. K.W. Drossaers-Bakker, Dr. M.N. Hettema, Dr. H.H. Kuper and Dr.

H.E. Vonkeman, who carefully checked all charts of participants. Moreover, we thank our

two patient partners, Lynn Packwood and Klaas Sikkel, who added the patient perspective

to this project.


48

CHAPTER 2

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rheumatology/ken399


3


3The longitudinal relation

between patterns of

goal management and

psychological health in

people with arthritis:

The need for adaptive

fl exibility

R.Y. Arends

C. Bode

E. Taal


British Journal of Health Psychology 2016, 21: 469489

DOI:10.1111/bjhp.12182


54

CHAPTER 3

Abstract

Objectives

Due to their disease, patients with polyarthritis face the task of reconciling their threatened

personal goals with their capabilities. Previous cross-sectional research on patients with

chronic disease related higher levels of goal management strategies to lower levels of

distress and higher levels of well-being. This study was the first to focus longitudinally

on goal management patterns that combined strategies originating from different goal

management theories. Our first study objective was to identify patterns that consisted of

various strategies of goal management among patients with polyarthritis. Subsequently, the

cross-sectional and longitudinal relationships between these patterns and the psychological

health of the patients were studied.

Methods

A longitudinal questionnaire study with three measurements of goal management and

psychological health was conducted among 331 patients with polyarthritis. Stability of goal

management over time was analysed with ANOVAs. Patterns were identified using cluster

analysis at baseline, based on the following strategies: Goal maintenance, goal adjustment,

goal disengagement, and goal reengagement. Longitudinal relationships between the

patterns and psychological health (specifically: Depression, anxiety, purpose in life, positive

affect, and social participation) were analysed using a generalized estimating equations

analysis.

Results

Three goal management patterns were found: ‘Moderate Engagement,’ ‘Broad goal

management repertoire,’ and ‘Holding on.’ Patients with the ‘Broad goal management

repertoire’ pattern had the highest level of psychological health. The ‘Holding on’ pattern

was identified as the most unfavourable in terms of psychological health. Over time, stable

differences in levels of psychological health between the patterns were found.

Conclusions

This study was the first to reveal patterns of several goal management strategies and their

longitudinal relationship to psychological health. Psychosocial support for arthritis patients

with lower psychological health should focus on helping patients to become familiar with a

broad range of goal management strategies when dealing with threatened goals.


55

THE LONGITUDINAL RELATION BETWEEN GOAL MANAGEMENT AND PSYCHOLOGICAL HEALTH

Introduction

Polyarthritis is a collective term for a variety of disorders associated with autoimmune

pathologies including rheumatoid arthritis (RA), ankylosing spondylitis and psoriatic arthritis.

The chronic conditions are characterized by systemic inflammation, swelling, disability,

chronic pain and fatigue that affect an individual’s life on all fronts. Individual prognosis is

unpredictable [1], and characteristics of many rheumatic diseases are unpredictable flares

and/or periods of worsening disease activity [2]. These diseases may affect all aspects of a

patient’s physical, psychological and social functioning [3]. In addition, patients often face

difficulties with attaining and maintaining goals in several domains of life [4,5].

The everyday management of chronic diseases occurs mostly outside the health care system

and becomes an extensive responsibility when people have to balance conflicting roles

and tasks [6,7]. The psychological component of this adjustment process to the disease is

described by De Ridder, Geenen, Kuijer, and van Middendorp [8] as ‘the healthy rebalancing

[of patients’ lives] to their new circumstances’ (p. 246). Often people with chronic illness

need to find a balance between their desires and constraints [9,10].

Pursuing goals is important for identity, purpose in life, satisfaction, and well-being

and can give structure to one’s life [11-13]. However, the positive influence of striving for

goals to achieve well-being can become negative when goals become unattainable or

no progress is made towards the desired goal [14,15]. When the attainment of cherished

goals is threatened, the focus shifts from striving towards goals to trying to sustain what

is achievable. This focus can continue to shift towards the scaling down of unachievable

goals and even to the disengagement of goals that are perceived as unattainable [16,17].

Goal management strategies refer to the ways patients minimize the disparity they perceive

between their actual and preferred situation with regard to their personal goals.

Circumstances and the experienced level of hindrance towards a goal determine how

applicable a goal management strategy is. The Integrated Model of Goal Management

is a comprehensive model of goal management which combines two established models

[18]. This working model, which proposes four goal management strategies, was based

on the understanding that the derived strategies were from two models that appeared to

be partly complementary. The two models combined in this previous study were the dual

process model of assimilative and accommodative coping [19,11] and the Goal adjustment

model [20]. While the dual process model is comprehensive in itself, its operationalization

in two continua makes it impossible to distinguish between lower level goal competencies

or strategies. The Goal adjustment model on the other hand, contains two defined lower

level strategies applicable when a goal is no longer available, but neglects the preceding

processes. By combining the strategies from the two models, an effort was made to assemble

a heuristic model that included the following four goal management strategies. Firstly,

assimilation is operationalized by the maintenance of goals, which implies active attempts


56

CHAPTER 3

to alter unsatisfactory life circumstances and situational constraints in accordance with

personal preferences. Secondly, accommodation is operationalized by the adjustment of

goals, which implies a revision of self-evaluative standards and personal goals in accordance

with perceived deficits and losses, thereby adjusting goals to the personal bounds of what

remains possible. The third strategy of goal disengagement is theorized to be one facet of

the broader strategy towards goal adjustment, as well as the ultimate form of adjusting

goals [18]. Goal disengagement implies the withdrawing of effort and commitment from a

goal that is perceived as no longer attainable. Finally, goal reengagement implies identifying

and then committing to and starting the pursuit of alternative goals.

In this study, possessing multiple goal management competencies was hypothesized to be

beneficial for psychological health (PH). Therefore, our first aim was to identify patterns of

goal management among patients with polyarthritis. We also hypothesized that patients

with several goal management competencies at their disposal might react in a flexible

way to difficulties they encountered in goal attainment [21]. Past research has shown that

higher levels of competence in individual goal management strategies relate to higher

levels of psychological health in patients with polyarthritis [18] and in other patient groups,

such as those with vision loss, limb amputation, myocardial infarction, chronic pain and

cancer as well [22-27]. However, no studies are known to have examined patterns of goal

management in patients with a chronic disease. Also, there are only cross-sectional studies

on the relationship between goal management and psychological health in patients with

polyarthritis, and very little research exists on the relationship between goal management

and psychological health over a longer time period in patients living with a chronic disease.

Four longitudinal studies among diverse patient groups have found higher levels of various

goal management strategies to be related to a higher quality of life and less depressive

symptoms [28-31]. These findings suggest that longitudinally a higher competence in

multiple goal management strategies can promote psychological health.

Psychological health, also described as adaptation to a chronic disease, includes various

concepts, such as low levels of depression and anxiety and high levels of purpose in life,

positive affect and satisfaction with participation [10]. These five concepts have been studied

before in relation to patients with arthritis and were chosen to give a multidimensional

display of psychological health in the present study. Of particular importance to this study

is that research exploring these concepts has shown that heterogeneity exists between

individuals and across the course of the disease [32]. Depression and anxiety are well-studied

components of psychological distress and affect a significant number of patients with

arthritis [33,34]. Findings indicate individual variability in levels of depressive symptoms over

time in patients with polyarthritis [35,36,34]. Anxiety has received increasing attention in

research during the last decade [37,38], and this focus seems appropriate given that research

indicates 20-30% of RA patients suffer from increased levels of anxiety [35]. In addition to

the absence of psychological distress, the presence of well-being is part of psychological


57


health of patients with arthritis [8,18]. Along these line, purpose in life – the endeavour

to find meaning in efforts and challenges – was found to add to the quality of life in

patients with arthritis [39]. Positive emotions can reduce the negative influence of pain on

well-being and even help to prevent clinical depression [40-42]. In addition, the level of a

patient’s participation in society is often negatively affected by polyarthritis, whereas social

limitations are related to psychological distress [43-45].

The second aim of this study was to relate the patterns of goal management to

psychological health in patients with polyarthritis, both cross-sectional and longitudinal.

Based on an earlier study [18], it was hypothesized that a pattern that includes high levels of

goal adjustment, but also high or moderate levels of goal maintenance, goal disengagement

and goal reengagement is beneficial for psychological health. Consequently, less effective

patterns of goal management could put individuals at risk of poor psychological health. We

assumed that less effective patterns of goal management would involve the absence of high

levels of multiple strategies or consist of a predominant use of only one strategy.

Method

A questionnaire study with three measurement points for goal management strategies and

psychological health (PH) was employed 6 months apart. A study describing the data and

analysis of the first measurement point has been published elsewhere [18]. Ethical approval for

the study was obtained from the internal review board of the Faculty of Behavioural Sciences

at the University of Twente, The Netherlands. All participants gave written informed consent.

Sample

Participants were randomly selected from the electronic diagnosis registration system from

a rheumatology outpatient clinic. The following inclusion criteria were applied to select

eligible patients: (1) diagnosis of polyarthritis and (2) receiving treatment for polyarthritis.

Next, a rheumatologist checked the individual charts for the additional inclusion criteria: (3)

18 years or older and (4) sufficient proficiency in Dutch to fill in the questionnaire, either

autonomously or with the help of a relative. Of the 803 initial patients, 639 met all inclusion

criteria and received an invitation letter, informed consent form, and the first questionnaire.

Informed consent was returned by 331 patients (52%), who were then included in the study.

Instruments

A Dutch validated version of the Hospital Anxiety and Depression Scale [46,47] was used to

measure depressive and anxiety symptoms. Higher scores indicate more depressive/anxiety

symptoms (range of both subscales 0-21). Internal consistency at baseline for depression was

α = .80 and for anxiety α = .83. The Purpose In Life Scale [PIL; 48,49] was used to measure


58

CHAPTER 3

the extent to which participants experience a meaningful life. One question about everyday

purpose in life was added to the PIL: ‘Doing the things I do every day is a source of deep

pleasure and satisfaction’. Higher scores indicate more purpose in life (range 6-30). Internal

consistency at baseline was α = .82. The positive subscale of the Positive and Negative Affect

Schedule [50,51] was used for the measurement of positive affect. Higher scores indicate

more positive affect in the past week (range 10-50). Internal consistency at baseline was

α = .92. The subscales family role, autonomy outdoors, and social relations of the Impact

on Participation and Autonomy [52] were used to assess participants’ social participation.

Higher scores indicate more satisfaction with social participation (range 0-4). Internal

consistency in this study was at baseline α = .94.

Maintenance of goals and adjustment of goals were measured using two scales: Tenacious

Goal Pursuit and Flexible Goal Adjustment [53]. High scores on these two scales indicate

a tendency to maintain goals (Tenacious Goal Pursuit example item: ‘When faced with

difficulties, I usually double my efforts’), and a tendency to adjust goals (Flexible Goal

Adjustment example item: ‘I adapt quite easily to changes in plans or circumstances’).

Internal consistency at baseline was α = .73 for goal maintenance (range 15-75) and α = .81

for goal adjustment (range 15-75). Cronbach’s α over time was .86 for goal maintenance

and .88 for goal adjustment. For this study, an original Dutch translation was derived

using both the original German scales and existing English translations. Back-and-forward

translations were made by native speakers. This procedure was also used to translate the

Goal Adjustment Scale discussed below.

Goal disengagement and goal reengagement were measured with the Goal Adjustment

Scale [20]. The two subscales measure how respondents usually react if they have to stop

pursuing an important goal (e.g., ‘If I have to stop pursuing an important goal in my life… it’s

easy for me to reduce my effort towards a goal. / … I seek other meaningful goals’). Higher

scores indicate a tendency to disengage from unattainable goals (goal disengagement,

range 4-20) and a tendency to reengage with new goals (goal reengagement, range 6-30).

Internal consistency at baseline was α = .51 and α = .88, respectively. Over time, Cronbach’s

alpha was .76 for goal disengagement and .74 for goal reengagement.

Respondents were asked to indicate the amount of pain (1-item numerical scale: No

pain at all [0] – unbearable pain [10]) and the severity of fatigue (100 mm visual analogue

scale: No fatigue [0] – completely exhausted [100]) in the past week. For comorbidity, a

checklist with 15 categories of conditions was used and the number of comorbidities was

summed up (range 0-15). Functional limitations were measured with the Health Assessment

Questionnaire-Disability Index [HAQ-DI; 54,55], which was developed to measure basic

physical function among persons with arthritis, such as mobility and self-care. Higher scores

indicate the worse basic physical functioning (range 0-3). Internal consistency at baseline

was α = .92.


59


Data analysis

Data were analysed using version 18 of the Statistical Package for the Social Sciences.

Descriptive statistics were calculated for all study variables. Univariate repeated-measures

ANOVAs were used to analyse the stability of the four goal management strategies (goal

maintenance, goal adjustment, goal disengagement and goal reengagement) over time. In

the case of significant sphericity, the Greenhouse-Geisser statistic was reported. Repeated

contrasts were used to test the significance of changes between measurement points.

Pearson correlations were given for relations between goal-management variables.

Cluster analysis

Cluster analysis was used to identify distinct subgroups based on the similarity of their

pattern of goal management variables at baseline. Goal management variables were

standardized prior to their cluster analyses [56]. Firstly, Ward’s hierarchical cluster analysis

was used to identify cluster centroids and identify the best possible number of clusters, then

the squared Euclidean distance was used as a similarity measure. To identify the number of

clusters for the K-means analysis, the dendrogram was then searched for an inconsistent

jump in the similarity measure. A 3-cluster solution was selected based on theoretical

relevance, interpretability, cluster size and an assessment of cluster differences with respect

to concurrently measured variables [57]. Subsequently, a K-means analysis was conducted.

To validate the obtained cluster solution through replication, the study sample was

randomly split into two groups, and each group was analysed using identical clustering

procedures. To assess the stability of the 3-cluster solution over time, cluster analyses were

repeated on the second and third measurement points. Then to determine whether the

cluster solutions in the three waves matched, clustering factors and outcome variables were

compared. The intra class coefficient (ICC) was used to evaluate the stability of individual

cluster membership over time. Subsequently, descriptive statistics were computed for the

three clusters on the first measurement point. Using the clusters formed with baseline data,

descriptive statistics were also computed for the three clusters on the second and third

measurement points. Multivariate and univariate ANOVAs with Bonferroni-adjusted post-

hoc comparisons were used to test group differences in clustering factors. Furthermore,

analyses of cluster differences in concurrently measured demographic variables, disease-

related variables and PH outcome variables were conducted, using ANOVAs and chi-square

test. In case of non-normality of variances, Welch’s F was used for the univariate approach.

Generalized estimating equations

To analyse the longitudinal relationship between patterns (clusters) of goal management,

on the one hand, and PH outcomes on the other, generalized estimating equations (GEE)

analyses were used. To adjust for the repeated measurements within a person, a working

correlation structure was specified a priori [58]. The exchangeable working correlation


60

CHAPTER 3

structure was deemed most appropriate. First, to assess their independent contribution

to depression, anxiety, purpose in life, positive affect, and participation in separate GEE

analyses, patterns of goal management were treated as categorical levels of a fixed variable

(with one pattern as the reference group). Baseline demographic variables (sex and age) and

disease-related variables (functional limitations, pain, fatigue, and comorbidity) were added

into the analyses to control for the variables’ contribution. Secondly, to assess a possible

linear course over time, time was added as a continuous variable. In addition, interaction

terms between time and patterns of goal management were added to assess differences

in course over time between the patterns of goal management for PH outcomes [58]. Two

patterns were used alternately as the reference group to study differences in course over

time between all three patterns (referred to as the interaction effect).

Results

Sample characteristics

Table 1 shows the demographic and clinical characteristics of the participants at the

respective measurement points. The majority of participants lived with a partner (72.8 %),

had either no education or up to a secondary education (75.9 %) and had no paid job (69.2

%). A slight majority of the participants was female (61 %). The mean age at baseline was

62.5 years and mean disease duration was 14.7 years. The most common diagnosis (58 % of

the sample) was RA.


61


a No/Lower:Noeducation,primaryschoolorlowervocationaleducation;Secondary:highschoolandmiddlevocationaleducation; Higher: high vocational education and university.Notes: T1= first measurement, T2= second measurement, T3= third measurement.

Sample attrition

At the first measurement point, 331 participants were included in the study (see Fig. 1 for

a flow chart that displays participant attrition over the year). At the second measurement

point, 290 questionnaires were returned (88 %) and at the third measurement point, 262

questionnaires (79 %). A total of 255 participants returned questionnaires for all three

measurement points. Three participants deceased during the term of the study. Other

reasons for dropout were comorbid disease (n = 4, e.g., cerebrovascular accident, dementia)

and personal circumstances (n = 2). However, the reasons for the remaining participants

dropping out are unknown (n = 60). Analyses of baseline measures comparing participants

Table 1 Characteristics of the participants on T1, T2 & T3 measured at baseline.

Demographic characteristics T1 T2 T3Number of participants (%) 331 (100) 290 (87.6) 262 (79.2) Sex, n (%) Male 129 (39.0) 114 (39.3) 105 (40.1) Female 202 (61.0) 176 (60.7) 157 (59.9) Age (years), mean (SD), range 62.49 (12.7), 24-91 61.7 (12.1), 28-89 62.07 (11.7), 32-89 Marital status, n (%) Not living with partner 83 (25.1) 64 (22.1) 61 (23.3) Living with partner 241 (72.8) 219 (75.5) 196 (74.8) Missing 7 (2.1) 7 (2.4) 5 (1.9) Educational level, n (%)a No/Lower 128(38.7) 105(36.2) 96(36.6) Secondary 123 (37.2) 108 (37.2) 96 (36.6) Higher 72 (21.8) 69 (23.8) 64 (24.4) Missing 8 (2.4) 8 (2.8) 6 (2.3) Work status, n (%) No paid job 229 (69.2) 198 (68.3) 179 (68.3) Full-time and part-time employment 96 (29) 86 (29.7) 79 (30.2) Missing 6 (1.8) 6 (2.1) 4 (1.5)Disease characteristics Diagnosis, n (%) Rheumatoid arthritis 192 (58.0) 170 (58.6) 159 (60.7) Gout and other crystal diseases 34 (10.3) 27 (9.3) 24 (9.2) Polymyalgia & Temporal Arteriitis 33 (10.0) 27 (9.3) 24 (9.2) Spondylarthropathy 25 (7.6) 24 (8.3) 20 (7.6) SLE and other systemic diseases 20 (6.0) 17 (5.9) 14 (5.3) Other/non-classifiable 27(8.2) 25(8.6) 21(8.0) Disease duration (years), mean (SD), range 14.67 (12.3), 1-71 14.72 (12.3), 1-71 14.90 (12.2), 1-71


62

CHAPTER 3

who dropped out of the study with those who remained revealed no statistically significant

differences with respect to demographic characteristics, disease-related variables, and most

of the goal management or PH variables. However, participants who dropped out had

significantly higher goal disengagement, lower purpose in life and less satisfaction with

participation in society than participants who remained in the study. No differences were

found in dropout rate between the clusters, χ2 (2) = 4.27, ns.

Randomly selected sample: 803

Information letter, informed consent and first questionnaire sent to: 639

Questionnaires returned with informed consent: 331

Excluded based on the application of inclusion and exclusion criteria: 164

Questionnaires returned:Time 2: 290Time 3: 262

Reasons for dropout:60 unknown

4 comorbid disease3 deceased

2 personal circumstances

Figure 1 Flow chart of participants’ attrition during one year.


63


Patterns of goal management at baseline

Descriptive statistics for all study variables at the three measurement points are shown in

Table 2. The mean levels of goal management mainly remained stable throughout the study.

An exception was the strategy of goal maintenance; its mean levels changed significantly over

time, F(2, 486) = 5.07, p = .007. Contrasts showed a significant decrease in goal maintenance

between the first and second measurement point, T1 mean: 46.93, T2 mean: 46.05, F(1, 243)

= 8.11, p = .005. Levels of goal adjustment did not change over time, F(2, 486) = 0.06, ns, nor

did levels of goal disengagement, F(1.89, 454.06) = 0.67, ns, or levels of goal reengagement,

F(2, 480) = 0.28, ns. Given the relative stability of the goal management variables over time,

the baseline values were used for the identification of patterns. The correlation of goal

maintenance with goal adjustment was r = .14, with goal disengagement r = .32, and with

goal reengagement r = -.00. The following correlations were found: goal adjustment with

goal disengagement was r = .32, goal adjustment with goal reengagement r = .43, and goal

disengagement related with goal reengagement r = .30.

First Second Third measurement measurement measurement N T1 N T2 N T3 M (SD) M (SD) M (SD)Goal management Goal maintenance 324 284 254 46.95 (6.23) 46.05 (6.21) 46.10 (6.27) Goal adjustment 325 285 253 51.81 (6.67) 51.67 (6.13) 51.60 (6.44) Goal disengagement 323 284 255 11.63 (2.28) 11.63 (2.32) 11.67 (2.37) Goal reengagement 324 283 255 21.26 (3.62) 21.72 ( 3.30) 21.56 (3.38)Psychological health Depression 328 286 253 4.75 (3.55) 4.74 (3.59) 4.49 (3.52) Anxiety 328 287 253 5.31 (3.73) 5.32 (3.59) 5.05 (3.61) Purpose in life 324 286 257 21.81 (3.81) 21.78 (3.57) 21.69 (3.44) Positive affect 328 286 254 34.17 (7.04) 34.63 (6.70) 34.56 (6.79) Participation 326 284 259 2.67 (.66) 2.64 (.64) 2.68 (.63)Disease related Functional limitations 329 290 262 0.98 (.76) 0.94 (.74) 0.97 (.73) Pain 322 286 255 4.12 (2.47) 4.01 (2.38) 4.11 (2.38) Fatigue 322 274 249 42.17 (26.28) 43.06 (27.14) 43.25 (25.91) Comorbidity 331 na 262 1.49 (1.52) na na 1.24 (1.50)

Notes: N = number of respondents, T1 = first measurement, T2 = second measurement, T3 = third measurement, M = mean, SD = standard deviation, na = not applicable.

Table 2 Means and standard deviations of all study variables and number of respondents on the three

measurements.


64

CHAPTER 3Ta

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11.7

1)

59.1

1b (11

.60)

60

.88b (

14.1

1)

F (2

, 316

) = 8

.76*

**Li

ving

with

par

tner

, % (n

) 72

.8 (2

41)

75.2

(106

) 71

.8 (7

9)

73.5

(50)

N

SFu

ll-tim

e/pa

rt-t

ime

empl

oym

ent,

%(n

) 29

(96)

19

.1 (2

7)

40.9

(45)

32

.8 (2

2)

χ2 (2

) = 1

4.67

**Di

agno

sis

rheu

mat

oid

arth

ritis,

% (n

) 58

(192

) 61

.7 (8

7)

56.4

(62)

57

.4 (3

9)

NS

Dise

ase

dura

tion

in y

ears

, mea

n (S

D)

14.6

7 (1

2.3)

16

.26a (

12.8

9)

14.8

1 (1

2.32

) 10

.92b (

12.9

2)

F (2

, 302

) = 4

.31*

Func

tiona

l lim

itatio

ns, m

ean

(SD)

0.

98 (.

76)

1.06

(.71

) .8

4 (.7

3)

1.02

(.87

) N

SPa

in ra

ting,

mea

n (S

D)

4.12

(2.4

7)

4.21

(2.3

7)

3.92

(2.5

1)

4.39

(2.5

2)

NS

Fatig

ue ra

ting,

mea

n (S

D)

42.1

7 (2

6.28

) 39

.96

(24.

12)

39.9

0a (26

.45)

51

.24b (

27.2

1)

F (2

, 308

) = 5

.39*

*Co

mor

bidi

ties,

mea

n (S

D)

1.49

(1.5

2)

1.40

a (1.

44)

1.35

a (1.

57)

1.96

b (1.

54)

F (2

, 316

) = 3

.96*

Psyc

holo

gica

l hea

lth

– m

ean

(SD)

M

ultiv

aria

te F

(10,

608

) = 9

.10*

**De

pres

sion

4.

75 (3

.55)

5.

30a (

3.32

) 2.

90b (

2.42

) 6.

58c (

4.10

) F

(2, 3

14) =

30.

73**

*An

xiet

y 5.

31 (3

.73)

5.

33a (

3.31

) 4.

05b (

2.79

) 7.

57c (

4.80

) F

(2, 3

14) =

20.

99**

*Pu

rpos

e in

life

21

.81

(3.8

1)

21.2

3a (2.

82)

23.8

3b (3.

80)

19.8

8c (4.

21)

F (2

, 316

) = 1

59.3

7***

Posi

tive

affe

ct

34.1

7 (7

.04)

32

.67a (

6.27

) 37

.96b (

5.79

) 31

.09a (

7.63

) F

(2, 2

14) =

30.

47**

*Pa

rtic

ipat

ion

2.

67 (.

66)

2.59

a (.6

0)

2.90

b (.6

1)

2.45

a (.7

5)

F (2

, 313

) = 1

1.7*

**

Not

es: *

** =

p <

.001

, **

= p

<.0

1, *

= p

< .0

5. M

eans

that

do

not s

hare

the

sam

e su

bscr

ipt d

iffer

p <

.05

in th

e Bo

nfer

roni

-adj

uste

d po

st-h

oc c

ompa

rison

.


65


Results of the cluster analysis are presented in Table 3. At baseline, 319 participants had the

required data for the cluster analysis. Three distinctive patterns of goal management were

identified. Individuals in Cluster 1 (‘Moderate engagement’) comprised 44.20% of the sample.

In this cluster, a low level of goal maintenance coincided with the average reengagement of

goals, slightly lower than average goal adjustment and high goal disengagement. Cluster

2 participants (‘Broad goal management repertoire’) represented 34.48% of the sample.

In this cluster, high scores on goal maintenance, goal adjustment, and goal reengagement

were accompanied with an average level of goal disengagement. Cluster 3 (‘Holding on’)

constituted 21.32% of the sample. In the third cluster, high goal maintenance was accompanied

by low scores on the other three strategies: Goal adjustment, goal disengagement and goal

reengagement. The split half replication led to an identical number of clusters with essentially

identical configurations, thus confirming the 3-cluster solution (cluster 1: n = 79 and n = 70;

cluster 2: n = 64 and n = 49; and cluster 3: n = 25 and n = 32).

As indicated at Time 1, analyses suggested that three clusters were also a good solution for

Time 2 and Time 3. Similarly, these three clusters differed in the level of goal management

strategies. Noteworthy was the fact that identical patterns to those found at Time 1 were

not reproduced, especially not at Time 3. The ICC between the repeated cluster analysis on

the first, second, and third measurement points was .54 (95% CI 0.43 – 0.63; df = 232, 464;

p < .001). Additional analyses using 3 x 3 contingency tables (not shown) revealed that from

Time 1 to Time 2, 60-70% maintained cluster membership to the same cluster. From Time

2 to Time 3, 55-65% stayed in the same cluster. However, the clusters at Time 2 and Time 3

were not identical in content (i.e., levels of goal management and outcome variables) to the

clusters at Time 1, so little can be said about the stability of individuals in clusters over time.

Demographic and disease-related variables differed significantly between the three

clusters (Table 3). The ‘Moderate engagement’ pattern of goal management was more

prevalent among older, unemployed, and/or retired participants compared to both other

clusters, and mean disease duration in this cluster was longer than for participants in the

‘Holding on’ cluster. At baseline, the ‘Holding on’ cluster was significantly associated with

higher average fatigue compared to the ‘Broad goal management repertoire’ cluster. In

addition, participants in the ‘Holding on’ cluster had, on average, more comorbidities

compared to both other clusters.

There were significant differences between clusters with respect to the PH outcomes

at baseline (Table 3). Participants with a ‘Broad goal management repertoire’ scored

significantly lower on depression and anxiety and higher on purpose in life, positive affect

and participation compared to participants in the ‘Moderate engagement’ and the ‘Holding

on’ clusters. Participants in the ‘Moderate engagement’ cluster also scored significantly

lower on depression and anxiety and had more purpose in life compared to the ‘Holding

on’ cluster.


66

CHAPTER 3Ta

ble

4 M

ean

leve

ls o

f psy

chol

ogic

al h

ealth

out

com

es o

ver t

ime

per c

lust

er.

Cl

uste

r 1

‘Mod

erat

e en

gage

men

t’

Clus

ter

2 ‘B

road

goa

l man

agem

ent

repe

rtoi

re’

Clus

ter

3 ‘H

oldi

ng o

n’M

easu

rem

ent p

oint

(n)

T1 (

141)

T2

(125

) T3

(111

) T1

(110

) T2

(95)

T3

(89)

T1

(68)

T2

(60)

T3

(56)

Depr

essi

on –

mea

n (S

D)

5.30

(3.3

2)

5.09

(3.4

8)

4.93

(3.3

6)

2.90

(2.4

2)

3.12

(2.5

0)

3.07

(2.7

4)

6.58

(4.1

0)

6.57

(4.0

8)

6.08

(4.0

7)An

xiet

y

5.33

(3.3

1)

5.40

(3.0

1)

5.30

(3.0

1)

4.05

(2.7

9)

4.34

(3.2

6)

4.15

(3.2

0)

7.57

(4.8

0)

6.98

(4.5

2)

6.27

(4.7

5)Pu

rpos

e in

life

21

.23

(2.8

2)

21.2

8 (3

.07)

21

.05

(3.0

8)

23.8

3 (3

.80)

23

.29

(3.3

4)

23.2

6 (3

.26)

19

.88

(4.2

1)

20.4

2 (4

.09)

20

.47

(3.6

7)Po

sitiv

e af

fect

32

.67

(6.2

7)

32.9

9 (6

.13)

33

.22

(5.9

8)

37.9

6 (5

.79)

37

.91

(6.1

2)

37.5

6 (6

.41)

31

.09

(7.6

3)

32.3

7 (6

.38)

32

.45

(7.6

0)Pa

rtic

ipat

ion

2.

59 (.

60)

2.60

(.57

) 2.

68 (.

60)

2.90

(.61

) 2.

83 (.

60)

2.83

(.56

) 2.

45 (.

75)

2.46

(.77

) 2.

46 (.

74)


67

THE LONGITUDINAL RELATION BETWEEN GOAL MANAGEMENT AND PSYCHOLOGICAL HEALTHTa

ble

5 Re

latio

ns b

etw

een

patt

erns

of g

oal m

anag

emen

t and

PH

(dep

ress

ion,

anx

iety

, pur

pose

in li

fe, p

ositi

ve a

ffect

, and

par

ticip

atio

n) o

ver a

one

-yea

r per

iod.

D

epre

ssio

n

Anx

iety

Purp

ose

in li

fe

Po

siti

ve a

ffec

t

Part

icip

atio

n

B (9

5% C

I) p

B (9

5% C

I) p

B (9

5% C

I) p

B (9

5% C

I) p

B (9

5% C

I) p

Dem

ogra

phic

fact

ors

Sex

(fem

ale)

a -.5

9 (-1

.17,

-.01

) .0

5 -.3

5 (-.

96, .

26)

.26

.16

(-.48

, .80

) .6

3 -.2

5 (-1

.43,

.93)

.6

8 .0

8 (-.

02, .

18)

.13

Age

.02

(-.01

, .05

) .1

7 .0

0 (-.

03, .

03)

.85

-.02

(-.05

, .01

) .1

5 -.0

2 (-.

08, .

03)

.39

.00

(-.00

, .01

) .3

7D

isea

se-r

elat

ed fa

ctor

sFu

nctio

nal l

imita

tions

1.

12 (.

52, 1

.72)

<

.001

.5

6 (-.

10, 1

.22)

.1

0 -.6

8 (-1

.37,

.02)

.0

6 -.8

2 (-2

.06,

.43)

.2

0 -.3

6 (-.

46, -

.26)

<

.001

Pain

.0

5 (-.

23, .

13)

.58

.10

(-.09

, .28

) .3

0 .1

0 (-.

16, .

37)

.44

.18

(-.20

, .56

) .3

6 .0

0 (-.

03, .

03)

.95

Fatig

ue

.04

(.02,

.05)

<

.001

.0

4 (.0

3, .0

6)

< .0

01

-.04

(-.06

, -.0

1)

< .0

1 -.0

8 (-.

11, -

.04)

<

.001

-.0

1 (-.

01, -

.00)

<

.001

Com

orbi

dity

.1

1 (-.

13, .

35)

.36

.23

(.01,

.46)

.0

6 .0

7 (-.

17, .

31)

.57

-.07

(-.51

, .37

) .7

5 -.0

5, (-

.09,

-.01

) .0

1G

oal m

anag

emen

t pa

tter

n (v

s cl

uste

r 1:

Mod

erat

e en

gage

men

t)

Cl

uste

r 2: B

road

goa

l -1

.93

(-2.5

4, -1

.32)

< .0

01

-1.1

9 (-1

.82,

-.56

) <

.001

2.

08 (1

.33,

2.8

3)

< .0

01

4.78

(3.4

, 6.1

5)

< .0

01

.19

(.08,

.30)

<

.01

man

agem

ent r

eper

toire

Clus

ter 3

: Hol

ding

on

.96

(.06,

1.8

7)

.04

1.17

(.21

, 2.1

2)

.02

-.86

(-1.8

1, .1

0)

.08

-.41

(-2.0

3, 1

.21)

.6

2 -.0

6 (-.

20, .

09)

.43

Inte

ract

ion

(vs

clus

ter 1

)Ti

me

-.07

(-.31

, .16

) .5

5 .1

1 (-.

14, .

35)

.40

-.10

(-.33

, .14

) .4

3 .2

0 (-.

29, .

69)

.42

.01

(-.03

, .05

) .5

4Cl

uste

r 2 *

tim

e .2

1 (-.

10, .

52)

.18

-.05

(-.41

, .31

) .7

7 -.2

8 (-.

65, 1

0)

.15

-.55

(-1.3

0, 2

.08)

.1

5 -.0

5 (-.

11, -

.00)

.0

4Cl

uste

r 3 *

tim

e -.1

7 (-.

68, .

33)

.50

-.58

(-.11

, -.0

4)

.03

.29

(-.28

, .87

) .3

2 .4

5 (-.

73, 1

.64)

.4

5 -.0

1 (-.

09, .

07)

.84

Inte

ract

ion

(vs

clus

ter 3

)Ti

me

-.25

(-.69

, .20

) .2

8 -.4

8 (-.

96, .

00)

.05

.20

(-.33

, .72

) .4

6 .6

5 (-.

43, 1

.73)

.2

4 .0

0 (-.

07, .

08)

.94

Clus

ter 2

* ti

me

.38

(-.10

, .87

) .1

2 .5

3 (-.

02, 1

.08)

.0

6 -.5

7 (-1

.17,

.03)

.0

6 -1

.00

(-2.2

2, .2

2)

.11

-.05

(-.13

, 04)

.2

7

Not

e: T

he M

oder

ate

Enga

gem

ent p

atte

rns

and

the

Hold

ing

on p

atte

rn w

ere

used

alte

rnat

ely

as re

fere

nce

grou

p to

stu

dy in

tera

ctio

n ef

fect

s.a M

ale

= re

fere

nce

grou

p


68

CHAPTER 3

The longitudinal relation between goal management patterns and PH

The results of the longitudinal GEE analyses showed relative stability over time in outcomes

of PH in the three clusters (mean levels over time are presented in Table 4 and the GEE

analyses in Table 5). To assess differences in the course of PH between patients with different

patterns of goal management over time, the interactions between time and cluster of goal

management were studied. Anxiety in the ‘Holding on’ cluster significantly decreased

compared to the ‘Moderate engagement’ cluster (‘Holding on’: β = -0.58, CI = -0.11, -0.04,

p = .03). For patients with a ‘Broad goal management repertoire’, their satisfaction with

participation in society decreased significantly as compared to patients in the ‘Moderate

engagement’ cluster; however, this was a very weak relationship (‘Broad goal management

repertoire’: β = -0.05, CI = -0.11, -0.00, p = .04). All other relationships between cluster and

PH outcomes were stable over time.

There were significant differences between the clusters of goal management concerning

mean levels of PH over time (Table 5). Patients in the ‘Broad goal management repertoire’

cluster had significantly more preferable levels of PH on all five outcomes as compared

to both other clusters. Levels of depressive and anxiety symptoms in this cluster remained

significantly lower over time compared to the ‘Holding on’ and the ‘Moderate engagement’

clusters (compared to the reference group ‘Moderate engagement’: Depression β = -1.93,

p < .001, and anxiety β = -1.19, p < .001). Levels of purpose in life, positive affect, and

participation stayed significantly higher over time in the ‘Broad goal management repertoire’

cluster compared to both other clusters of goal management (PH levels respectively: β = 2.08,

p < .001; β = 4.78, p < .001; and β = 0.19, p < .01, as compared to the ‘Moderate engagement’

cluster). Patients in the ‘Holding on’ cluster had significantly higher levels of depression and

anxiety over time than patients in both other clusters (compared to ‘Moderate engagement’:

Depression β = 0.96, p = .04, and anxiety β = 1.17, p = .02). The ‘Moderate engagement’ and

the ‘Holding on’ clusters did not differ significantly in levels of purpose in life, positive affect

and participation over time.

Discussion

The current study was the first to focus on the relationship between specific patterns of goal

management and psychological health in chronically ill patients. Three distinctive patterns

of goal management were identified among 331 patients with polyarthritis. Most striking

were the differences in levels of psychological health between the three goal management

patterns. At baseline, a broad repertoire of goal management strategies was linked to

higher levels of various indicators of psychological health while the inability to use several

strategies was linked to lower levels of psychological health. The three patterns of goal

management were associated with differing and stable levels of psychological health over


69


time after controlling for demographic and disease-related factors. Patients characterized by

the ‘Broad goal management repertoire’ pattern at baseline had significantly higher levels

of psychological health over time when compared to patients with the other two patterns of

goal management. This finding corresponds to the cross-sectional analyses on the baseline

data that highlighted the strong relationship between the strategy of goal adjustment and

psychological health [18]. In addition to earlier results, these findings also underline the

necessity to possess a combination of goal management strategies for a healthy level of

psychological health.

In contrast, patients characterized by the ‘Holding on’ pattern at baseline were found to

have stable lower levels of psychological health over time. Earlier studies have indicated that

striving for meaningful goals is related to better psychological health [18,30,23]. The present

study, however, revealed the added value of combinations of goal management capabilities.

When an individual lacks the adaptive flexibility to switch between strategies as needed,

holding onto unattainable goals may be a great source of stress and frustration. Levels of

fatigue and the average number of comorbidities of people with the ‘Holding on’ pattern

were substantially higher when compared to the other two groups. In contrast, mean pain

levels and limitations in functioning due to arthritis for the ‘Holding on’ pattern did not differ

when compared to the other groups. It seems people with the ‘Holding on’ pattern struggled

with limited resources and a high disease burden. An explanation for these observations

might be that people with merely a high preference for goal maintenance might not be able

to respond appropriately to varying circumstances. Repeatedly experiencing the resultant

failure to achieve goals might enlarge the negative impact of polyarthritis on one’s quality of

life. Personality traits of individuals characterized by the ‘Holding on’ pattern might propel

the focus on unattainable goals, eventually provoking frustration and distress [14,15]. This

hypothesis, however, needs further investigation. Nevertheless, people with a ‘Holding on’

pattern of goal management might benefit from additional support and guidance that

would help them to become more flexible when dealing with their threatened goals.

This study showed that a portion of the patients had elevated levels of anxiety over time,

in accordance with the literature [37], as well as elevated levels of depressive symptoms

over time. There were only minimal changes over one year in levels of psychological health,

indicating that arthritis might be experienced by people as an enduring stressor [31]. This

suggests that successful adaptation to a chronic disease does not come naturally with time

for everyone. Therefore, despite having a greater variety of goal management strategies

when compared to patients with the ‘Holding on’ pattern, patients with the ‘Moderate

engagement’ pattern might also profit from additional guidance to strengthen and deploy

various strategies and react in more flexible ways to threatened goal attainment.

The possible negative consequence of clinging to threatened goals does not completely

correspond to the ideas underlying many current interventions for chronic diseases. For

example, self-management interventions are primarily focused on achieving goals by


70

CHAPTER 3

increasing self-efficacy [59], and these interventions are motivated by the desire to control

and manage illness and its consequences [60-62]. Designed to only control disease, such self-

management interventions might overlook the goals of maximizing psychological health

and social functioning [63]. The (implicit) focus on holding onto goals might not fit many

patients’ reality nor their capabilities.

Through the use of the Integrated Model of Goal Management in the present study,

the interplay between various goal management strategies has become somewhat

clearer. However, many questions remain unanswered with regard to the relationships

between the strategies. Currently, the research literature lacks empirical evidence as to

whether it is necessary or preferable to step through a range of strategies in a specific

sequence. Nevertheless, an optimal order of application of strategies is assumed in the

literature [64,53,16]. The order of strategies ranges from striving to maintain a threatened

goal, through adjusting the goal, and finally ending by disengaging from the goal and

simultaneously or subsequently reengaging in a new goal. Empirically, endorsement of both

the maintenance of goals and adjustment of goals at the same time was found to relate

negatively to psychological health outcomes, possibly reflecting a regulatory dilemma [65,9].

Boerner et al. [9] assumed the dynamic interplay between those strategies might depend on

the nature of the coping challenge, in other words, the goal(s) at stake. The disengagement

of goals and the reengagement in new goals are considered distinct processes that can

occur simultaneously or in sequence, and have positive implications in both situations [20].

People dealing with chronic health conditions may especially require the simultaneous use

of different strategies, rather than a shift from one to another [11].

Also, individual differences in personal and social support resources might influence a

person’s psychological health and the adaptive value of a pattern of goal management.

Other approaches on internal processes may bring more insight into the simultaneous use of

different strategies. For example, appropriate designs, such as single-case research designs

studies that follow individuals over an extended period of time [66,21] with a focus on the

interplay between personal circumstances, goal management and its effects on psychological

health are needed. Also, future studies that focus on examining goal management in

response to a discrete stressor might prove particularly valuable, as such studies would

allow for the observation of how patients’ modify their strategies when managing current

threatened goals [31].

Some limitations must be noted in the present study. Firstly, the scales on goal management

have applied different kinds of operationalization. The Tenacious Goal Pursuit and Flexible

Goal Adjustment scales are considered to measure dimensions of coping tendencies in

relation to goals in general [53]. These measurements are different from the subscales of the

Goal Adjustment Scale, which measure general tendencies of managing unattainable goals

and particularly focus on the situation in which a goal is perceived as unattainable [20].

Furthermore, due to the low internal consistency of the subscale measuring disengagement,


71


related results should be interpreted with caution. However, it was demonstrated that the

four strategies differentiated clearly between groups of patients and related to psychological

health, supporting the inclusion of this range of strategies.

Secondly, in the Integrated Model of Goal Management, disengagement from goals that

are perceived as no longer attainable is considered to be a facet of the broader strategy

of the adjustment of goals and consistent with previous theoretical work [64]. A possible

indication of the accuracy of this hypothesis is the agreement in the direction of both

strategies in the current study. However, the current analyses are not suited for extended

theory testing, and the complex relations between the strategies were not the focus of this

article.

The third limitation of this study lies in the observational character and the lack of clinical

lab data on disease activity. Furthermore, clinical assessment of anxiety or depressive

symptoms was not available in our sample. Moreover, one-fifth of the participants could

not be retained during this longitudinal study, which hampered replication of the cluster

solution over the three measurement points. Due to participants’ attrition, changes in cluster

membership have not been captured in the analysis. Thus, limitations generically associated

with the methods used must be taken into account when considering the findings. These

limitations include biases that are inherent in self-reported data, such as differences in recall

and motivational biases.

Fourthly, being part of the labour force is important for many patients with arthritis as it

relates to family income, status, the availability of social support, and quality of life [67,68].

Unfortunately, it was not possible to include satisfaction with participation in the work

domain in the analyses since the employment status among the population greatly differed

(almost 70% had no paid job or were retired).

Despite these limitations, identifying patterns of goal management strategies has

proved to be an excellent way to study goal management in relationship to psychological

health. The resulting three patterns of goal management are straightforward and well

interpretable, and our study results provide a valuable indication for the development of

interventions promoting psychological health. Furthermore, studying patterns enabled us

to identify common combinations of the four goal management strategies and how these

combinations relate to psychological health. This is a unique finding, and other methods,

for example, using 4-way interactions in regression analysis, would not have revealed

such clear information. Studying patterns of behaviour is also more nuanced and holds

more external validity than examining isolated strategies as conducted in earlier studies.

Clearly future research should replicate these patterns in other populations with different

characteristics and resources that might influence the patterns and their relationship to

patients’ psychological health. Future research should also focus on the effects that support

for using several goal management strategies has on patients’ levels of psychological health.


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Conclusions

People with arthritis who possessed a broad repertoire of goal management strategies at

the start of the study maintained better mental health over the course of a year. Meanwhile,

patients who lacked multiple goal management strategies at their disposal appeared to have

difficulties with adapting to their chronic disease over time. The three goal management

patterns identified in this study are a clear starting point for intervention and support of

patients, as people who exhibit a pattern related to lower levels of psychological health

can be identified and possibly profit from support that helps them to stimulate new or

other ways to manage their goals. Psychosocial support for such patients could then

focus on helping them to become familiar and practiced in using a broader range of goal

management strategies when dealing with their threatened goals, and thereby increase

their quality of life and psychological well-being.

Acknowledgements

The authors are very grateful to all who participated in this research. In addition, we wish

to thank the participating psychology students for their practical help during this study. We

also thank our two patient partners, Lynn Packwood and Klaas Sikkel, for their additional

perspectives. Furthermore, we are grateful to Peter ten Klooster for his advice on the

statistical analyses and Pim Valentijn for his helpful comments on earlier versions of this

work.


73


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4


4Exploring preferences

for domain-specifi c

goal management in

patients with polyarthritis:

What to do when an

important goal becomes

threatened?

R.Y. Arends

C. Bode

E. Taal


Rheumatology International 2015, 35: 18951907

DOI 10.1007/s0029601533368


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Abstract

Usually priorities in goal management – intended to minimize discrepancies between

a given and desired situation – are studied as person characteristics, neglecting possible

domain-specific aspects. However, people may make different decisions in different

situations depending on the importance of the personal issues at stake. Aim of the present

study therefore was to develop arthritis-related vignettes to examine domain-specific goal

management and to explore patients’ preferences.

Based on interviews and literature situation-specific hypothetical stories were developed

in which the main character encounters a problem with a valued goal due to arthritis.

Thirty-one patients (61 % female, mean age 60 years) evaluated the face-validity of the

newly developed vignettes. Secondly, 262 patients (60 % female, mean age: 63 years) were

asked to come up with possible solutions for the problems with attaining a goal described

in a subset of the vignettes. Goal management strategies within the responses and the

preference for the various strategies were identified.

The 11 developed vignettes in three domains were found to be face-valid. In 90 % of the

responses, goal management strategies were identified (31 % goal maintenance, 29 % goal

adjustment, 21 % goal disengagement, and 10 % goal re-engagement). Strategy preference

was related to domains. Solutions containing goal disengagement were the least preferred.

Using vignettes for measuring domain-specific goal management appears as valuable

addition to the existing questionnaires. The vignettes can be used to study how patients

with arthritis cope with threatened goals in specific domains from a patient’s perspective.

Domain-specific strategy preference emphasizes the importance of a situation-specific

instrument.


81

EXPLORING PREFERENCES FOR DOMAIN-SPECIFIC GOAL MANAGEMENT

Introduction

Chronic conditions present a set of challenges to patients and their families who must

endure behavioral and psychological changes. Patients have to deal with disease symptoms,

increasing disability, emotional impact, complex medical regimens, lifestyle adjustments,

and securing helpful medical care [1]. As a result of the changes that the disease entails,

important personal goals may be threatened or even unachievable [2-4]. In addition to the

emotional impact of the disease and associated challenges, unreachable or threatened goals

may have a negative influence on well-being. Although lower levels of well-being are found

in patients, not all patients experience lower well-being, and, in fact, a substantial number

of patients evaluate their life as meaningful [5-7]. As coping can improve adaptation to

the above mentioned challenges and, consequently, increase well-being, knowledge of

appropriate coping strategies facilitates well-being for those who struggle with finding a

(new) balance in living with a chronic condition.

A way to cope with threatened personal goals is by using goal management which

attempts to minimize discrepancies between the goals of a person and the actual situation

[8,9]. However, the distinction between coping from a dispositional perspective as

opposed to a contextual perspective is a dichotomy among coping theorists [10,11]. These

perspectives contain contrasting underlying determinants of the coping process. Applying

the dispositional and contextual perspectives to goal management, the difference is

whether the applied mode of goal management is determined by stable trait characteristics

of a person or by situation-specific factors. A useful integration of both perspectives can be

found in the model of Moos and Holahan [10], which emphasizes that individuals are active

agents who can shape the outcomes of stressful life circumstances and, in turn, be shaped

by them.

Existing questionnaires about goal management are designed to measure general

tendencies. A series of statements is presented to participants, who are asked to indicate

to what degree a statement describes their typical reaction pattern. As the questionnaires

measure dispositional goal management, they gather information on how a person judges

his or her own behavior in general. However, reflecting the contextual perspective on

coping, people may make different decisions in different situations depending on the

importance of the personal issues at stake. Little is known about the choices that people

make when confronted with limitations and declining ability to perform valued activities in

specific domains. A domain-specific measurement method can be applied for this purpose.

Additionally, the use of questionnaires can raise ambiguity as respondents are asked to

make decisions and judgments from abstract and limited information [12]. It remains, for

example, unclear if a respondent was thinking of a particular goal, occurrence, or time

period when responding to the statements.

Hypothetical scenarios or vignettes that describe arthritis-specific situations might be a


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promising method to collect information on goal management in polyarthritis patients.

Vignettes are valued as a method to measure attitudes, beliefs, and values, especially

about abstract concepts related to health and illness [13,14]. The use of vignettes helps to

standardize stimuli across respondents [12], making it a convenient and expedient method

for collecting extensive amounts of data from large samples [13]. Vignettes should contain

valid and typical situations that are recognizable by the majority of respondents. In that

way, the reaction to the vignette is more comparable with natural daily situations.

Almost two million adults in the Netherlands are diagnosed with a rheumatic disease. In

this group, 420,000 people have a form of inflammatory arthritis [15]. Medical management

may alleviate inflammation and part of the pain, but for many patients fluctuating pain,

fatigue, disability, deformity, and reduced quality of life persists [16,17]. Disease symptoms

like pain, fatigue and functional limitations can make it difficult and even impossible to

attain goals in important life domains [18].

Studies from two different but complementary approaches offer insights into the life

domains that are influenced by arthritis. One approach includes studies that researched

domains from a professional/caregiver, decision-maker, and/or epidemiological perspective

(e.g. [19-24]. Limitations in physical and mental functioning, activities, and participation were

reported [23], and domains influenced by arthritis were specified as: work and remunerative

employment; recreation and leisure, family and social or intimate relationships [23,19,21,25-

27]. Limitations in one domain can have significant impact in other domains of life. For

example, polyarthritis has been demonstrated to negatively influence participation and

work ability [28,21,25], possibly resulting in loss of family income, status and social support

[28].

The second approach is reflected in studies that researched the patient perspective of the

impact of the disease on daily life. Research methodologies are diverse, ranging from: clinical

case reports [29], interview studies using (life) stories of patients [30-32], the use of focus

groups [33], cohort studies using structured interviews [34,35,18], and literature reviews [36].

Some of these patient perspective studies, revealed problems with attaining or maintaining

goals in both private and public domains of life, including work, social relationships, leisure

activities and domestic tasks [2,37]. Most of the previous mentioned studies, however,

focused on what patients reported as important concepts, general outcomes of treatment,

or adjustments made to life. Examples of such reports are: “feeling well in myself,” “being

normal again,” “fatigue,” and “emotional consequences” [33,36]. From studies based on

both the approaches of professional perspective and the patient perspective studies, one

can conclude that arthritis has an influence on a wide variety of life domains of patients

which, therefore, might be useful to distinguish.

Changes in life domains caused by a chronic disease can have psychological and social

consequences for patients and can affect their identity [38]. To have and strive for personal

goals is important for well-being [39,40], while the inability to achieve goals can cause


83


frustration and depression. The loss of activities in some domains appears to be more closely

linked to an increase in depressive symptoms than the loss of activities in other domains

[41]. For example, declines in the ability to perform recreational activities and engage in

social interactions were found in the longitudinal study of Katz et al. [41] to be linked to

the onset of depressive symptoms. In particular, when the goals are closely linked to the

identity of a person, unattainable goals can have a negative influence on well-being. Several

studies showed that among rheumatoid arthritis (RA) patients, there is a higher prevalence

of anxiety and depressive symptoms and lower levels of purpose in life than in healthy

controls [42-44]. Psychosocial problems, in turn, can have an adverse influence on disease

burden. Patients experiencing psychosocial problems report higher disease scores and more

pain, even though they do not have higher disease activity or lower functional ability than

other patients [45].

To find an equilibrium between which goals to maintain and which to disengage from may

be a beneficial process to sustain well-being. This implies being flexible and able to react to

obstacles to personal goals in various ways [4,46,47]. People can use several strategies when

they encounter an obstacle on their path to a goal. These goal management strategies are

intended to minimize discrepancies between the given situation and the desired situation.

Ideally, patients would weigh possible strategies against their own potential and constraints

from the environment. Individuals require a repertoire of strategies and skills to successfully

choose and apply the strategies in every particular case of a threat to a goal.

Several goal management strategies are described in the literature. The integrated

model of goal management [4] combines four strategies from the dual process model of

assimilative and accommodative coping [9,8,48] and the goal adjustment model [49]. The

strategies in this model are as follows: (1) Goal maintenance, implying active attempts to

alter unsatisfactory life circumstances and situational constraints in a way that fits personal

preferences. (2) Goal adjustment, the revision of self-evaluative standards and personal goals

in accordance with perceived deficits and losses to make the situation appear less negative

or more acceptable. (3) Goal disengagement, the withdrawing of effort and commitment

from a goal that is perceived as unattainable. (4) Goal re-engagement, the identification,

commitment to and pursuing of new goals, in addition to or instead of other goals.

The overall objective of our study was to examine domain-specific goal management in

arthritis patients. To reach this objective we conducted two studies. The first was to develop

vignettes that reflect a realistic situation in which a valued goal of an arthritis patient is

threatened. The vignette instrument – consisting of situation-specific hypothetical stories

– examines contextual or domain-specific goal management in polyarthritis patients and

expands existing questionnaires. Use of both measures in future research may facilitate the

understanding of how adaptive coping moderates the influence of stressors on well-being.

Our second objective was to use the vignettes to study the goal management strategies that

patients create and prefer when presented the arthritis-specific situations in the vignettes.


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To study the applicability of the integrated model of goal management in practice, the

strategies from this model were used to categorize the answers provided by respondents

and to investigate whether these strategies capture the provided reactions.

Methods

Our objective was to develop a pool of vignettes that could be applied to several situations

and populations (Part 1). The vignettes should contain threatened goals of arthritis

patients specific to domains that may be affected by arthritis. Arthritis patients should

assess the vignettes as recognizable and realistic. After the vignettes were composed and

evaluated, a subset of vignettes was chosen to study patients’ reactions to the vignettes

(Part 2). Our interest in this second part was mainly the applicability of the vignettes to

study goal management strategies of arthritis patients. For this purpose, we chose the most

generic vignettes for our subset, as not all vignettes were relevant and applicable for this

sample of arthritis patients. In Part 2, we had the following questions: (1) Are the four goal

management strategies; goal maintenance, goal adjustment, goal disengagement, and goal

re-engagement, recognizable in the answers? (2) Are the four strategies exhaustive? (3) Do

the strategies that the respondents mention and prefer differ between the domains? In

addition, we added an “open vignette”, in which respondents were asked to describe one of

their own situations in which a goal was threatened due to arthritis. This additional vignette

was used to study, in an explorative way, the themes and domains people mentioned. The

study was approved by the internal review board of the Faculty of Behavioural Sciences at

the University of Twente.

Part 1: development of vignettes

To identify the vignette topics, interviews with patients with rheumatoid arthritis (RA) about

coping with arthritis and with threatened personal goals [50] and literature on limitations

and threatened domains experienced by arthritis patients were used. Eleven hypothetical

stories in which the main character encounters a problem with a valued goal due to arthritis

were formulated. The wording and use of language of the vignettes was initially tested

in a small pilot study. There were no difficulties regarding the wording, language and

understanding of the vignettes. Only small adjustments were made in sentence structure.

Sample

Participants of the “Arthritis Research Partners” forum of the Arthritis Centre Twente

were invited to participate in testing the feasibility of the vignettes. This forum consists of

voluntary participants who have a rheumatic condition for at least two years and are willing

to cooperate in research. Invitation letters were sent to 40 forum participants, and after a


85


week, people were contacted by telephone. Thirty-two persons were willing to participate

(response rate 80 %).

Participants

Thirty-one persons with RA participated in a questionnaire study (61% female, mean age:

59.5 years). Demographics of the participants are shown in Table 1 (Part 1). One person was

excluded due to too much missing data.

Table 1 Demographic characteristics of the participants

Demographic characteristics Part 1: Development Part 2: Goal management strategiesSex, n (%) 31 262 Male 12 (38.7) 105 (40.1) Female 19 (61.3) 157 (59.9)Age (years), mean (SD), range 59.5 (13.2), 33-83 62.8 (11.7), 33-90Marital status, n (%) Notlivingwithpartner/nopartner 7(22.6) 61(23.3) Living with partner 24 (77.4) 196 (74.8) Missing data 0 5 (1.9)Educational level, n (%) a No/Lower 4(12.9) 96(36.7) Secondary 19 (61.3) 109 (41.6) Higher 8 (25.8) 51 (19.4) Missing data 0 6 (2.3)Work status, n (%) No paid job 18 (58.1) 179 (68.3) Full-time and part-time employment 13 (41.9) 79 (30.1) Missing data 4 (1.5)Disease duration (years), mean (SD) 13.3 (11.1) 15.9 (12.2)Comorbidities, n(%)/mean (SD) b 17 (54.8) 1.6 (1.5)Pain, mean (SD) c N/A 4.11(2.4)HAQ-DI d , mean (SD) N/A 0.97(0.7)

a Low: No education, primary school or lower vocational education; Middle: high school and middle vocational education; High: high vocational education and university. b Comorbidities were measured in different ways in the two studies. c Amount of pain in the past week: 1=not at all – 10= unbearable. d HAQ-DI: measures functional limitations in arthritis patients [51]

Procedure and questionnaire

Participants could participate in the study either at home or at the university, in the

presence of a student-assistant. Participants were asked to read and answer the vignettes


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and subsequently answer seven written questions regarding the vignettes regarding the

face validity and understandability of the vignettes. Examples include whether participants

had understood the vignettes, whether they found the vignettes realistic, and whether

the impact of RA on their life as portrayed in the vignettes was personally recognizable

(questions appear in Table 4). A five-point Likert-scale was used, with 1 = totally disagree

and 5 = totally agree. Also the spontaneous reactions of participants after reading the

vignettes were collected and content-analyzed.

Part 2: goal management strategies in response to a subset of vignettes

Sample and recruitment

For the second study, the vignettes were included in a larger questionnaire study. For

more details on design and methods, see Arends et al. [4]. The study consisted of three

measurement waves. Participants were randomly selected from the electronic diagnosis

registration system of an outpatient clinic for rheumatology. The following inclusion criteria

were applied to select participants: (1) patient is diagnosed with polyarthritis and (2) patient

is receiving treatment for polyarthritis. After initial selection, the rheumatologists checked

the charts for the additional inclusion criteria: (3) patient is 18 years or older and (4) patient

is able to complete the questionnaire in Dutch, either autonomously or with help from

a relative. Out of 803 patients, 636 patients met the inclusion criteria and received an

invitation letter, questionnaire and informed consent form. Information on demographics,

goal management, indicators of adaptation to a chronic disease, and disease characteristics

was collected. In the third measurement wave that contained the vignettes, 262 patients

participated (59.9 % female, mean age 62.8 years). Demographic and clinical characteristics

of respondents are shown in Table 1 (Part 2).

Vignettes

The vignettes were included at the end of the questionnaire. The exact (translated) wording

of the introduction for the vignettes appears in Fig. 1. First an example vignette was given

along with possible answer options for that particular vignette. The example vignette was

specifically written for this purpose and does not stem from the earlier described study on

the development of the vignettes. Subsequently, three vignettes from different life domains

are presented (Fig. 2). The first vignette is from the social domain - the main character

experiences problems with participating in the annual Family Day games and sports due

to physical pain. (In the Netherlands, a Family Day is usually a day where activities are

organized for the extended family to strengthen their relationships). The second vignette

deals with problems in the leisure activities domain. Due to the unavailability of adjustments

and facilities, the main character experiences problems during vacation with the caravan.

The third vignette deals with the domain of independent functioning. Due to physical pain,


87


the main character has difficulties working in the garden. In addition, we asked people to

describe one of their own (current or past) situations in which they experienced problems

in attaining a personal goal. For every vignette, participants were asked to answer the

following two questions: (1) What possible solutions can you come up with for the problem

described above? (to a maximum of six solutions) and (2) How likely is it that you would try

this solution? Participants were then asked to rate their own described solutions on a scale

from 1 (I would absolutely try this) to 5 (I would never try this).

Figure 1 Introduction and example vignette

Analysis of responses

A detailed codebook was developed in discussion rounds between two authors (ET and

RYA). The codebook contained a description of the strategies and examples of answers per

vignette (see Table 2 for examples). The same two authors separately coded 10 % of the

answers for every vignette. For two vignettes, a sufficient degree of agreement was reached

after the first coding round. Based on the consensus of the authors, the encodings of the

Explanation: Here you find three stories of problems that people with arthritis may encounter. Imagine that due to your arthritis, you experience the following situations. How would you react? What possible solutions can you think of? Describe a number of possible solutions below every story. Please indicate next to your solutions how likely it is that you would opt for that solution. Write down the solutions that spontaneously come to mind. You do not have to be exhaustive and there are no wrong answers!The stories may not match your life or the things that you deem valuable. Or it may be that, in contrast to the character in the story, you experience few limitations from your arthritis. In any case, would you try to empathize with the situation and respond as if it could happen to you?Here is an example of a story like those on the following page.

Example vignette: Nienke is a 17-year-old girl, who has been diagnosed with juvenile arthritis at 10 years of age. For a few years now she is grooming a horse that she loves to pamper, care and ride. Lately, however, she has problems with mounting the horse and holding the reins, due to problems with her hands. Also, the horseback riding lessons have become more and more tiring, and Nienke finds it difficult to keep up with the other girls in class.

Examples of solutions:A. Stop riding and find another hobby in which my arthritis is not a limitation.B. Use aids, such as a stool for mounting and just keep on enjoying horseback riding. C. Continue to care for the horse but quit the horseback riding lessons. D. Continue the horseback riding lessons until it has become impossible. Horseback riding is very important

for me; I will not give it up!


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remaining vignette (Family Day) were discussed again and the codebook was clarified.

Another 10 % of the responses on this vignette were coded by the same two authors and

then a sufficient degree of agreement was reached for this vignette as well (see Table 2).

The open vignette was content-analyzed to study, in an explorative way, the themes and

domains people mentioned.

Figure 2 The subset of vignettes about Family Day, Caravan holiday and Gardening.

Family Day You have a large family. Once a year, all gather for a Family Day. Every one engages in games and sporting activities all day and, towards the evening, gathers to enjoy a cozy meal together. You have always very much enjoyed the family day because of its coziness and warm atmosphere. Moreover, you were always keen on the games and tried hard to be the winner. Since you have arthritis, your passion for the day’s activities has decreased. The games and sporting activities are often physical and you are less able to participate because of your arthritis.

Caravan Holiday Each year you go on a two-week caravan holiday. Since you have arthritis, you notice that these holidays are becoming a strain. Life in a caravan levies a heavy toll on you, since it does not provide you with the adjustments and conveniences available to you at home.

Gardening You live in a house with a large garden. You have always enjoyed working in the garden. You always did things yourself, from mowing the lawn and planting the flower bulbs to pruning the trees and clipping the hedges. Since a while, you can no longer work in the garden as you used to. You can’t, for example, bend as easily as you used to in order to remove weeds. It certainly is no longer possible to work in the garden for hours and hours. Especially on cold days, you suffer more than usual after having worked in the garden.


89


Table 2 Definitions of strategies, examples of answers and degree of similarity per vignette.

a Cohen’s kappa.

Results

Part 1: results of vignette development

Content of the vignettes

The 11 vignettes all have a main character that is diagnosed with RA. In each situation, the

impact of the disease on daily life is described as the main character always encounters a

limitation or difficulty. The stories are set in three different domains: the social domain,

the leisure activities domain, and the independent functioning domain (Table 3). Topics of

the vignettes in the social domain are activities with partner, children, family, and friends.

In the leisure activities domain, the topics are sports, holidays, hobby, and volunteering.

In the independent functioning domain, the topics are gardening, household tasks, and

running errands. Seven vignettes are formulated in the same way for men and women,

except the name of the main character is entered to match the gender of the respondent.

Four vignettes contain various activities focused on more typical female or male activities.

Vignette 1: Vignette 2: Vignette 3: Family Day Caravan Holiday Gardening Description Example of Kappa a Example of Kappa Example of Kappa solution solution solutionMaintenance Active attempts Try to join all .59 Raise the bed .72 Spread the work .91of goals to adjust the day and accept by using a over several environment so the setback I higher mattress. days. that your goal get later. is attainable.Adjustment of Adjust the goal Participate in .79 Sell the caravan .79 Ask someone .71goals to what is everything but and spend the else to do the feasible, given less fanatically. holidays in a heavy work. the situation. hotel.Disengagement Withdrawing Be present, but .70 Going on 1.00 Consider moving .76of goals of effort and no longer vacation is too to an apartment. commitment participate in strenuous, from a goal. the activities. efforts outweigh the pleasure.Re-engagement Identification, Start taking .79 Make day trips. 1.00 Eventually let the 1.00of goals committing to pictures instead. garden run wild and starting to and make a pursue new photo diary of it goal(s). until I die.


90

CHAPTER 4

Table 3 Overview vignettes

Face validity

Seven questions were used in order to assess whether people understood the vignettes

and whether they were face-valid (Table 4). The median scores were four or five, which

means that on average the participants agreed or totally agreed with the statements. All

participants understood the stories and 97 % agreed or totally agreed with the statement

that the stories were easy to understand. Another 83 % could empathize with the main

character, while 13 % responded neutrally to that question. Over 90 % agreed or totally

agreed with the statement, “I found the stories realistic / recognizable.” The impact of RA

was recognizable to 94 % of the participants and another 87 % found the impact of RA

realistic.

Domain Vignette Short description Limitation because of RASocial Partner Day walking with partner. Fatigue Children (men) Mountain biking every Sunday Physical pain morning with sons. Children (woman) Day of shopping with daughters. Fatigue and problems with fine motor skills Family Day# Family Day with games and sports. Physical pain Friends Weekend away with friends. Fatigue Cycling one day during the weekend. Leisure activities Sports Twice weekly tennis. Physical pain Caravan holiday# Two weeks a year on vacation Unavailability of adjustments with a caravan. Hobby (men) Model trains Problems with fine motor skills Hobby (woman) Create your own gift cards. Problems with fine motor skills Volunteering Assist two mornings in a nursing Physical pain, fatigue home. Independent Gardening# Working in the garden. Always do Physical painfunctioning everything yourself. Household tasks Major activities in the household, Physical pain, heavy work such as window cleaning. Running errands Twice weekly errands. Physical pain, fatigue

# Vignette used in Part 2


91


Table 4 Vignette face validity and comprehensibility: median, SD and frequencies.

Median 1 2 3 4 5I have understood the stories. 5 5 26The stories were easy to understand. 5 1 6 24IwasabletoempathizewithPieter/Karin. 4 1 4 13 13I found the stories realistic. 4 3 16 12I found the stories recognizable. 5 2 13 16I found the impact of RA recognizable. 4 1 1 14 15I found the impact of RA realistic. 4 4 17 10

1 = totally disagree, 2= disagree, 3= neutral, 4= agree, 5= totally agree

The spontaneous reactions to the vignettes supported the general picture that respondents

found the vignettes clear and recognizable. Some stories were more in line with the patient’s

own life than others. Few participants (n = 5) disliked the stories because the main topic was

about the disease. For example, spontaneous reactions of participants were: “No, not fun

to read if you empathize with the main character, as she experiences increasing limitations

due to RA. It is recognizable though” and “I think it’s never fun to read because it is about

a disease. I’d rather not read it”. Some participants (n = 7) did not reflect on their own

situation as they read the stories, for example: “No, I am too down to earth for that” and

“No, as my own situation is already adjusted.” In general, respondents liked reading the

stories.

Part 2: goal management strategies in response to arthritis specific vignettes

Solutions given in response to the problems described in the vignettes

A total of 262 respondents completed the questionnaire, of which 194 provided one or more

solutions to the problems described in the vignettes (74 %). In total 1221 responses were

given to the three vignettes (Table 5). One third of the solutions submitted in response to

the vignettes could be coded as the strategy maintenance of goals (30 %), closely followed

by the strategy adjustment of goals (29 %). Another 21 % of the solutions were coded as

disengagement of goals, where only 10 % involved the strategy reengagement of goals.

Another 10 % of the answers were unclassifiable, mostly ranging from comments on the

applicability of the vignette (for example, “I am still able to do this,” and “I have no garden”)

to answers showing that the instructions were not well understood (for example: “I would

maybe try this,” and “Yes, a lot of pain”). In a minority of the unclassifiable responses, two

themes were recognizable, i.e., stigma and positive recommendations, that did not relate to

threatened goals, though they are related to arthritis.


92

CHAPTER 4Ta

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93


Preference of the goal management strategies

In general, participants would absolutely or probably try the solutions that they named. Only

solutions that involved the disengagement of goals were less preferred, and, on average,

participants indicated that they would only maybe execute such disengagement solutions.

Strategies per domain

In the social domain (vignette 1), almost one-third of solutions suggested adjustment of

the goal by participating less fanatically in the games and activities during Family Day

(Table 5). Solutions coded as re-engagement were mentioned in 26 % of the answers;

most people thought of joining the Family Day organization or becoming game judges.

Maintenance of goals could be recognized in one-fifth of the answers, for example, when

people suggested devices and tools that would facilitate participation in the games or that

they would participate despite problems or pain later. Solutions coded as disengagement

of goals contained, for example, skipping the day activities and only going for dinner and

being there all day, but not taking part in the games. Solutions that involved the adjustment

of goals, the re-engagement of goals and the maintenance of goals were highly preferred.

Solutions that entailed the disengagement of goals were less preferred.

In the leisure activities domain (vignette 2), solutions coded as maintenance of goals were

mentioned most frequently. For example, most people mentioned the use of assistive devices

or other adaptations to the environment to facilitate their stay in the caravan. Maintenance

of goals was closely followed by the adjustment of goals, where people suggested arranging

their holiday in a different way, for example, by staying in a holiday house or hotel instead

of a caravan. Examples of solutions involving the disengagement of goals were: staying at

home and selling the caravan. A small portion of the solutions involved the re-engagement

of goals. For example, one solution was to take day trips instead of going on a two-week

holiday. In this leisure activity domain, the solutions that involved the maintenance of goals

were the highest preferred, followed by adjustment of goals and then re-engagement of

goals. Solutions coded as disengagement once again had the lowest preference score.

In the domain independent functioning (vignette 3), most solutions that people provided

were coded as maintenance of goals. Solutions were, for example, to use assistive devices or

to spread the gardening work over several days. The disengagement of goals was reflected

in almost one-third of the solutions, for example, when respondents suggested having the

garden completely maintained by a gardener or moving to an apartment. In one-fourth

of the solutions, adjustment of goals was recognized, for example, when respondents

suggested hiring a gardener or asking for help from family members for larger gardening

tasks. Only one solution could be coded as containing re-engagement of goals, namely to

“eventually let the garden run wild and make a photo diary of it until I die.” The solutions

coded as maintenance of goals were the highest preferred, followed by adjustment of goals

and disengagement of goals.


94

CHAPTER 4

Themes and domains mentioned in the open vignette

A number of themes could be identified in the open vignette. In the vast majority of

the answers, people reported about their own limitations (e.g., pain, fatigue, functional

limitations, or activities that they are no longer able to perform), personal goals that

are threatened (e.g., an abandoned or threatened hobby or the personal solution for a

threatened hobby), and their course of disease (adjustments already performed, thoughts

about the future, precise disease course). In addition, two minor themes were recognized

that not directly related to threatened goals. Firstly people described the stigma they

experienced (specific experiences or, in general, a lack of understanding from others).

Secondly respondents described positive recommendations (e.g., ways to stay positive,

advice for functioning or how to stay independent). In a none-of-the-above category,

descriptions of problems that were not directly related to arthritis or answers that expressed

no problems with arthritis were grouped together.

Discussion and conclusion

Our overall objective was to study domain-specific goal management in arthritis patients. In

the first part of the study, 11 vignettes – situation-specific hypothetical stories in which the

main character encounters a problem with a valued goal due to arthritis – were developed.

The vignettes were found to be face-valid, that is, respondents found the situations and the

impact of arthritis described in the vignettes understandable, realistic, and recognizable.

The second part of the study focused on the solutions given by patients with polyarthritis

to resolve situations described in a subset of the vignettes. The goal management strategies,

including goal maintenance, goal adjustment, goal disengagement, and goal re-engagement,

were recognized in a large majority of the solutions. Only 10 % of the solutions could not be

coded as one of the four pre-defined strategies. No new or other goal management strategy

could be recognized in these unclassifiable answers, however, two types of responses clearly

emerged. The first type consisted of comments on the applicability of the vignettes, and the

second type was composed of comments showing that respondents did not understand the

instructions. From these results, it can be concluded that the four strategies are exhaustive

in response to the vignettes. This outcome supports the use of the integrated model of goal

management in examining goal management in arthritis patients.

Overall, the strategies of goal maintenance, goal adjustment, and goal disengagement

were frequently mentioned in all three domains. However, some differences in mentioned

and preferred goal management strategies could be identified between the domains. While

goal reengagement was mentioned as a solution in a quarter of the responses to the social

vignette, this strategy was rarely mentioned in response to the other two vignettes. The

most popular strategies in the social domain were goal adjustment, i.e., still participating


95


but less fanatically, and reengagement, i.e., assuming another role in the event, for example

by joining the organizing committee. On the other hand, maintenance of goals was less

often mentioned in the social vignette in comparison with the other two vignettes, perhaps

because adjusting goals and reengaging in new goals were seen as acceptable alternatives

in this particular vignette. Limitations in the social domain can provoke an increase in

depressive symptoms [41] which may explain why people devise many different ways in

order to remain involved in a social activity like a Family Day, either by scaling down or

by searching for alternative social goals. In contrast, both in the leisure domain and the

independent functioning domain, maintaining goals by customizing the environment and

using assistive devices was most popular. Goal disengagement was mentioned in all three

vignettes, but overall less preferred than the other strategies. One possible explanation

for the unpopularity of disengagement is that the striving for personal goals is important

for well-being and identity [39,40]. It seems that people would rather try to adapt their

personal goals than disengage from them despite serious limitations or problems that they

might face when attempting to achieve the goal.

Earlier research revealed positive relations of adjusting threatened goals with the well-

being of patients with arthritis [4]. Also for maintaining goals and re-engagement in

goals, clear positive relations to successful adaptation were found [4, see also 49]. The

main conclusion of the study of Arends et al. [4] was the importance of flexibility in the

management of goals. The present study showed that people could come up with various

strategies in their solutions. Future studies should reveal how people who experience

threatened goals due to arthritis select and apply goal management strategies and how

effective those strategies are for them.

An additional open vignette was used to study in an explorative way the themes and

domains people might mention. An open vignette can also be seen as a way to receive

feedback on the completeness of the domains in the set of vignettes developed in Part 1

of this study. From the analysis of the topics mentioned in the open vignettes, it appeared

that people did not find any specific domain lacking from the developed vignettes. In

fact, the functional limitations and domains mentioned by the participants corresponded

to the content of the complete set of vignettes developed in the first part of this study.

Therefore we concluded that our set of vignettes is exhaustive. Two minor themes that were

mentioned were similar to themes found in other studies, that is, firstly some respondents

described experienced stigma by others [2,52,53], and secondly, respondents mentioned

keeping positive as a recommendation to other patients [54,30]. Those two themes also

appeared in the unclassifiable answers to the first three vignettes. Obviously, these themes

are important for a number of respondents.

Some critical comments can be given on the study. First is the absence of the work domain

in the present set of vignettes. Clearly the (in)ability to work can be an important factor for

arthritis patients, as problems with work due to arthritis can negatively influence quality


96

CHAPTER 4

of life [55], family income, status, and the availability of social support [28]. However, since

employment status among polyarthritis patients greatly differs, it was difficult to develop a

work-related vignette that would be recognizable to the majority of intended respondents.

It would be worthwhile in future research to develop a vignette on full-time work for the

subgroup of respondents that are working fulltime.

During the development of the codebook, it became clear that precision of recognition

of goal management strategies was closely related to a clearly defined goal. For example,

in the Family Day vignette, the threatened goal was ambiguous, and therefore, some

answers were difficult to interpret and code. This shows that despite the use of vignettes,

some lack of clarity unfortunately still exists with regard to the goals people had in mind

when answering. Consequently, future studies should clearly define the threatened goal

in the vignette and ask respondents already in the development process – for example, via

cognitive interviewing techniques – for their interpretation of the threatened goal in the

story.

In addition, the content of the Family Day vignette may not be representative of all

social situations. The presented threatened goal in this vignette was not the quality of

social relations, but rather the participation in a social activity. This should be kept in mind

when interpreting the results of this study. Also, a selection of three vignettes was used to

study their applicability with a large sample of patients. It is possible, therefore, that some

respondents could not identify with the chosen selection. Future studies could use all the

vignettes, in order to study more domain-specific goal management in patient populations.

We chose not to analyze the given solutions per person, but to study the general patterns

of strategies named by all the respondents. The responses of people who provided the

maximum of six solutions thus counted more heavily than those who reported a smaller

set. However, we were interested in general patterns and not in preferences for goal

management strategies per individual.

Further research could offer more insight into the roles that both personal traits and

characteristics of the situation play in the deployment of goal management strategies. Also,

one can imagine that people in one life stage are rather more inclined to release goals in

certain domains than people in other life stages. Similarly, people with severe functional

limitations possibly make different choices than people who experience less limitations or

disease severity. The vignettes can be a useful method for future research into differences

in domain-specific goal management between groups of respondents. Further studies

should focus on the predictive value of the vignettes for successful adaptation. Likewise,

a comparison between dispositional questionnaires and domain-specific vignettes will give

insight into the construct validity.

The developed vignettes can be used to study how arthritis patients cope with threatened

goals in specific domains from a patient’s perspective. The vignettes were found to be

face-valid and the replies to the vignettes could be coded using a codebook. The use of a


97


detailed codebook made it possible to apply the vignettes to a large sample of respondents.

Responses to the developed vignettes provided valuable information about domain-specific

goal management. Results showed that the preferences for goal management strategies

differ per domain, emphasizing the importance of the addition of a situation-specific

instrument. Finally, this study showed that using vignettes for measuring domain-specific

goal management is a valuable addition to the existing questionnaires that measure

dispositional goal management.

Acknowledgements

The authors are very grateful to all the participants in the study. We also thank psychology

students Nikki Boerrigter and Irina Lehmann for their practical help in this study.


98

CHAPTER 4

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The effect of a goal

management programme

on the psychological

health of people with

arthritis and mild

depressive symptoms

Part II


5


5A goal management

intervention for

polyarthritis patients:

Rationale and design

of a randomized

controlled trial

R.Y. Arends

C. Bode

E. Taal


BMC Musculoskeletal Disorders 2013, 14:239

DOI: 10.1186/1471247414239.


106

CHAPTER 5

Abstract

Background

A health promotion intervention was developed for inflammatory arthritis patients, based

on goal management. Elevated levels of depression and anxiety symptoms, which indicate

maladjustment, are found in such patients. Other indicators of adaptation to chronic disease

are positive affect, purpose in life and social participation. The new intervention focuses on

to improving adaptation by increasing psychological and social well-being and decreasing

symptoms of affective disorders. Content includes how patients can cope with activities

and life goals that are threatened or have become impossible to attain due to arthritis.

The four goal management strategies used are: goal maintenance, goal adjustment, goal

disengagement and reengagement. Ability to use various goal management strategies,

coping versatility and self-efficacy are hypothesized to mediate the intervention’s effect on

primary and secondary outcomes. The primary outcome is depressive symptoms. Secondary

outcomes are anxiety symptoms, positive affect, purpose in life, social participation, pain,

fatigue and physical functioning. A cost-effectiveness analysis and stakeholders’ analysis are

planned.

Methods / Design

The protocol-based psycho-educational program consists of six group-based meetings

and homework assignments, led by a trained nurse. Participants are introduced to goal

management strategies and learn to use these strategies to cope with threatened personal

goals. Four general hospitals participate in a randomized controlled trial with one

intervention group and a waiting list control condition.

Discussion

The purpose of this study is to evaluate the effectiveness of a goal management intervention.

The study has a holistic focus as both the absence of psychological distress and presence of

well-being are assessed. In the intervention, applicable goal management competencies are

learned that assist people in their choice of behaviors to sustain and enhance their quality

of life.


107

RATIONALE AND DESIGN OF A GOAL MANAGEMENT INTERVENTION

Background

The World Health Organization’s definition of health was first stated in 1948 as: ‘a state of

complete physical, mental and social wellbeing and not merely the absence of disease or

infirmity’ [1]. Current health systems are still, to a large extent, organized around treatment

and cure of specific diseases, reflecting only the second part of the WHO’s definition of

health. This results in a focus on disease instead of on health and well-being. We believe

that, particularly in the case of chronic diseases, the focus needs to shift to stimulate

adaptation to disease and to achieve well-being. We introduce an intervention aimed

at people with a chronic condition, based on the capacities and needs of the individual

person. The new intervention is based on goal management and is designed to improve

peoples’ adaptation to their condition of polyarthritis. Therefore, the intervention focuses

on increasing psychological and social well-being and decreasing symptoms of affective

disorders. In this article, the theoretical background and the content of the intervention

are described. Furthermore, we describe the design of a randomized controlled trial on the

effectiveness of the intervention for increasing adaptation to polyarthritis.

Adaptation to chronic disease

Suffering a chronic disease increases the risk for the development of secondary conditions

and disabilities that often lead to further declines in health status, independence, functional

status, life satisfaction, and overall quality of life [2]. Aside from the physical effects and

requirements concerning lifestyle changes, a chronic disease often has major psychological

and social consequences for patients. Instead of being seen as a ‘distinct biological entity

existing alone and apart from the person’ [3], a chronic disease often becomes part of

the identity of a person. In essence, all chronic diseases present a similar set of challenges

to the patients and their families including dealing with symptoms, disability, emotional

impact, complex medical regimens, difficult lifestyle adjustments, and securing helpful

medical care [4]. According to the International Classification of Functioning, Disability and

Health (ICF), individuals with chronic and disabling conditions are fully capable of being

healthy and experiencing a satisfying subjective quality of life [5,2]. Notwithstanding this

perspective, psychological distress is common in persons with polyarthritis [6], indicating

that adaptation to the disease is not necessarily natural. For example, patients with

rheumatoid arthritis (RA), one of the most common forms of polyarthritis, experience

elevated levels of depressive mood and anxiety in comparison with healthy controls [7,8].

Research indicates 20 to 40% of RA patients suffer from heightened depression and

anxiety levels [7,9-12], and depressive and anxiety symptoms are seen as key indicators of

unsuccessful adaptation to polyarthritis. However, the absence of psychological distress is

not the only essential outcome of adaptation; well-being is similarly essential [12,5,13]. For

example, emotional well-being is found to predict long-term prognosis of physical illness;


108

CHAPTER 5

higher levels of emotional well-being tend to benefit recovery and survival rates [14].

The inclusion of the following three constructs reflects a comprehensive view on

adaptation: positive affect, purpose in life and social participation. Studies have shown

that, when levels of pain are elevated in patients with arthritis, positive affect was able to

prevent an increase in negative affect [15,16]. Furthermore, the level of purpose in life of

people with RA was found to be lower in comparison with healthy persons [17] and other

studies showed that polyarthritis had a negative influence on the social participation and

the work ability of the people affected [18-20]. We hope to capture the full effect of the

goal management intervention by taking into account the influence the intervention has on

both negative and positive indicators of adaptation to polyarthritis.

Self-management versus health promotion

The management of most chronic diseases is an extensive responsibility that takes place

mostly outside the healthcare system, as people have to manage a chronic disease everyday

in combination with possibly conflicting roles and tasks [21]. In fact, the patient, family and

community have become active participants in managing chronic disease [22]. Therefore,

active self-management and interventions supporting patients in the acquisition of skills

and techniques to that help patients learn to live with their disease are seen as essential [23].

A wide variety of self-management interventions has been developed for several chronic

conditions. Self-management is ‘the individuals’ ability to manage the symptoms, treatment,

physical and psychosocial consequences and lifestyle changes inherent in living with a

chronic condition’ [24]. Reasonable evidence exists that self-management interventions are

beneficial for a wide population of people with chronic diseases, for example, persons with

diabetes, hypertension, heart disease and macular degeneration [25,26].

Despite receiving substantial attention in the literature, fewer benefits attained by persons

with inflammatory arthritis have been reported [25]. Usually the effects of self-management

interventions found for people with inflammatory arthritis are negligible to small [27,23].

Also, improvements are rarely sustained over a longer time (e.g., 9 to 14 months follow-up)

[27-29]. The aforementioned term ‘self-management’ is used in literature to describe both

health-oriented and disease management interventions [26], and this may cause confusion

regarding the content and focus of interventions. The most frequently offered and studied

self-management program for people with arthritis is the Arthritis Self-Management Course

[30,31], in which common problems with day-to-day care of arthritis patients are central.

Most self-management interventions deal with the medical and behavioral management

of a chronic disease, but changing roles and emotional distress due to the disease are not

systematically incorporated into intervention programs [26]. Health protection or disease

management interventions are motivated by the desire to control and manage illness and its

consequences [32] and accommodate the unilateral focus on disease and disability. Health

promotion, in contrast, is not disease or illness specific, but has illness or disability as context


109


[33]. Moreover, health promotion interventions are intended to promote health and well-

being, reflecting the aforementioned perspective of the ICF [5] that individuals with chronic

and disabling conditions are fully capable of being healthy and experiencing a satisfying

quality of life. Although both health promotion interventions and disease management

interventions may focus on similar behaviors (e.g., exercise and medication adherence for

persons with arthritis), there is a critical difference in the key outcomes assessed. Studies on

disease management interventions usually do not include positive psychological and social

well-being measures as outcomes. As opposed to common outcome measures of disease-

specific self-management interventions (e.g., pain and disability), the outcomes of health

promotion interventions should reflect the broad perspective of the WHO on adaptation

to a chronic disease [5]: the experience of quality of life and being healthy in psychological

and social terms.

This article introduces a health promotion intervention based on goal management theory

developed for people with polyarthritis. Instead of a focus on the management of the

disease (as, for example, delivered by the Arthritis Self-management Course), attention is

given to how the patient can cope with activities and life goals that have become impossible

to attain or are threatened due to arthritis [12]. We will explain the theory upon which the

intervention is based in the next sections.

A health promotion intervention based on goal management: A different approach

The key features of the goal management intervention arise from the characteristics of a

health promotion intervention (Table 1). Although these key features are interrelated, we

briefly discuss them individually. Firstly, the aim of the intervention is to improve psychological

health as well as social and physical functioning. These concepts are intertwined and the

intervention is, therefore, aimed to all three concepts. Secondly, the aim of the intervention

follows the idea that a holistic approach comprises all aspects of the patient’s life. Thirdly,

the perspective is person-focused as opposed to an orientation towards a patient-centered

disease held by most self-management interventions. In a person-focused view, body systems

are seen as interrelated [34] and the illness as experienced by the patient becomes central.

This perspective is opposed to a disease or outsiders’ viewpoint. In a disease perspective, the

focus is placed on a set of symptoms that together form a disease, which implies a particular

treatment. Multimorbidity or psychosocial problems play no explicit role in this perspective.

The fourth point is that the content of the goal management intervention centers around

capabilities and personal potential, and, therefore, can be applied in different disease

populations.

Fifth, patients give substance to their own personal trajectory, in contrast to self-

management interventions with a predetermined course content [26]. The sixth distinctive

feature is that patients learn general applicable goal management competencies that are

not disease or problem specific, but can be used in daily life for various difficult situations.


110

CHAPTER 5

Acquiring these goal management competencies aptly complements the health promotion

tradition as these competencies assist people in the choice of behaviors that sustain and

enhance quality of life within the context of living with a chronic disease [2]. Also, as the

focus is on using the existing possibilities and social network of a person and one’s own

abilities to solve problems, the goal management intervention will promote resilience.

Although the intervention described in this article is, in the first instance, developed for

people with polyarthritis, due to all the intervention’s key features, it can easily be adapted

for other chronic diseases or disabilities.

Table 1 Goal management intervention versus disease-specific self-management interventions

Difference in: Disease-specific self-management Goal management intervention intervention Aim of intervention Control and management of disease Maximizing psychological health, social and physical functioningFocus/approach Reductionist HolisticPerspective Patient-centered (disease-specific orienta- Person-focused (body systems are tion) | Outsiders’ perspective (disease) interrelated) | Insider’s perspective (illness)Content Disease-specific Multiple-related diseases | Not disease-specificSubject-matter Predetermination of course content Room for personal problems and difficulties Acquisition of Specific competencies for predetermined General multi-deployable competencies assumed problems

Based on: Starfield, 2011 [34]; Lorig & Holman, 2003 [26]; and Stuifbergen et al., 2010 [2].

Goal management

The intervention was developed based on theories of goal management. Having and striving

for personal goals can give structure and meaning to life and keep a person engaged

in meaningful activities [35,36]. Striving for personal goals may, however, also produce

negative psychological effects when people are unable to progress to a desired goal [37,38].

Goal management strategies (possible ways to react to difficulties along the path towards a

goal) are intended to minimize discrepancies between the actual situation and the goals a

person has [12]. The Integrated Model of Goal Management [12] combines strategies from

two different theories, namely the dual process model of assimilative and accommodative

coping [39-41] and the Goal adjustment model [42]. The resulting four goal management

strategies can be applied in different situations. Firstly, the strategy goal maintenance which

implies active attempts to alter unsatisfactory life circumstances and situational constraints

in accordance with personal preferences [40]. Secondly, the strategy goal adjustment is an

approach to adjust personal goals to the personal limit of what remains possible when facing


111


difficulties on the path to a goal [40]. Goal adjustment is the revision of self-evaluative

standards and personal goals in accordance with perceived deficits and losses. Thirdly,

the strategy goal disengagement is theorized to be one of the poles of the continuum of

goal adjustment, as disengagement is an ultimate form of adjusting goals, namely, letting

go of goals. Goal disengagement is applied when goals are experienced as no longer

attainable [42,35]. This strategy implies the withdrawing of effort and commitment from an

unattainable goal, having the benefit of releasing limited resources that can be deployed

for engaging in new goals and alternative goals. Finally, the strategy goal reengagement

implies identifying, committing to and starting to pursue new goals [42]. New goals can fill

the space created by the release of unattainable goals.

Polyarthritis

For patients with polyarthritis, maintaining one’s life goals from before disease onset

is often impossible [43]. The term polyarthritis is used to indicate a variety of disorders,

including rheumatoid arthritis (RA), psoriatic arthritis and ankylosing spondylitis. People

with polyarthritis generally experience inflammation and swelling in joints, and despite

improved medical treatment in the last decades, persisting pain, fatigue, disability, deformity,

distress and reduced quality of life are daily stressors that patients have to cope with [44,45].

As a consequence, patients often face difficulties with attaining or maintaining goals in

several domains of life, including work, social relationships, leisure activities and domestic

tasks [46,47]. The loss of valued life activities, in particular declines in the ability to perform

recreational activities and engage in social interactions, is found to be a predictor of the

development of depressive symptoms [48].

Goal management and adaptation to polyarthritis

Both striving for goals (the strategies of goal maintenance and goal reengagement), as well

as accepting a given situation and the scaling down of goals (goal disengagement and goal

adjustment) are of great value for adaptation. A previous study indicates that the tendency

to use these strategies is associated with adaptation to arthritis [12]. Especially for people

with inflammatory arthritis, who must deal with the disease’s unpredictable and fluctuating

course, being able to use different approaches across situations can be beneficial [49]. An

intervention based on the flexible use of goal management strategies could be promising as

it can teach persons to respond to the demands of any situation in an appropriate way. The

ability to use a variety of strategies across different situations is denoted by coping flexibility

[50]. Despite its possible benefits for adjustment, coping flexibility is rarely studied in the

context of chronic disease [51]. One study showed that an increase in coping flexibility was

associated with a decreased depressed mood in patients with arthritis [52].


112

CHAPTER 5

Aims of the current study

For methodological reasons we have chosen one primary outcome and several secondary

outcomes. Because of its comparability with other research, depressive symptoms are the

main focus in this study. Firstly, depression in patients with arthritis is a well-researched

and documented phenomenon [53,54,48,55]. The second reason is that most research

on goal management in other patient groups also focused on depression as (one of the)

main outcome measure(s) [56,41,57,58]. Our main hypothesis is that the goal management

intervention leads to a significant reduction of depressive symptoms in polyarthritis patients

compared to the control condition. In addition, we hypothesize a significant reduction in

anxiety symptoms, and a significant improvement in positive affect, purpose in life and

satisfaction with participation in patients receiving the intervention as compared to the

control condition. We further explore the effect of the intervention on the disease-related

outcomes of pain, fatigue and physical functioning.

Moreover, we hypothesize that the ability to use all four goal management strategies

and to choose between them depending on the situation mediates the intervention’s

effect on depression. Goal management competencies are also hypothesized to mediate

the intervention’s effect on the secondary outcomes of anxiety, positive affect, purpose in

life and satisfaction with participation. Traditionally, self-efficacy for coping with disease

symptoms is found to be correlated with the effect of disease-specific self-management

interventions for arthritis patients [30]. Although the goal management intervention is not

explicitly designed to increase self-efficacy, we plan to study self-efficacy as an additional

putative mediator on the primary and secondary outcomes. Finally, the cost-effectiveness

of the intervention is analyzed in terms of medical and non-medical costs. It is conceivable

that, in the long run, non-medical costs might decrease because of more realistic planning

behavior and decreased absenteeism from work. Additionally, a stakeholders’ analysis of

the goal management intervention is executed in order to support and promote future

implementation.

Methods and design

Participants

The study has been approved by the medical ethics committee Twente, number NL40257.044.12.

Participants are recruited via arthritis clinics in four general hospitals in The Netherlands,

located in the East and Southeast areas of the country. Moreover, people from existing

databases of research participants are invited to participate. Also local newspapers and

contacts with patient organizations are used to reach potential participants. The process

for obtaining participant informed consent is in accordance with all applicable regulatory

requirements.


113


The research population consists of people with polyarthritis (as defined by the DBC

classification system) with a psychological risk profile. The specific inclusion criteria are: 1)

age of 18 years or over, 2) diagnosis of polyarthritis, and 3) score of four or higher on the

depression subscale of the Hospital Anxiety and Depression Scale (HADS). People with severe

distress are excluded and the treating rheumatologist is informed. Severe distress is measured

as a total score on the HADS (the total of both the depression and anxiety subscales) of 22

or higher. The cut-off score is based on literature [59,60]. In addition, insufficient Dutch

language skills and actual enrolment in psychotherapeutic treatment at the moment of

study are exclusion criteria.

Randomization

The participants are assigned in a 1:1 ratio to either the experimental group or the control

group. Patient allocation is be done by means of blocked stratified randomisation per site in

random block sizes of 2 and 4 to make sure that both conditions are equally distributed in

each participating hospital. The study is open label, as it is impossible, due to the nature of

the program, to blind the staff and participants involved to the condition which the patient

is allocated.

Experimental condition

The program consists of six group-based meetings with 8 to 10 participants and individual

homework assignments. “Doelbewust!” is a protocol-based psychosocial educational program.

Doelbewust is the Dutch word for “purposefully” and we have translated this program name

into English as “Right On Target”. The program is led by a trained nurse. Participants are

introduced to different goal management strategies and learn to use these strategies to

cope in a flexible way with threatened personal goals. The goal management strategies that

are covered in the program are: goal maintenance, goal adjustment, goal disengagement,

and goal reengagement [39-42].

Table 2 lists the topics, goals, and applied techniques for each meeting of the program.

The general structure of each meeting is as follows: a short review of the contents of the

previous meeting; introducing the topics of the current meeting; elaborating the topics by

group discussions and by practicing in individual, dual and group exercises; and explaining

homework assignments for the next meeting. A pilot was executed to test the feasibility of

the program protocol.


114

CHAPTER 5

Tabl

e 2

Cont

ents

of t

he g

oal m

anag

emen

t pro

gram

Mee

ting

To

pic

Mai

n go

als

mee

ting

A

pplie

d te

chni

ques

# 1

Arth

ritis

in d

aily

life

Be

com

e aw

are

of th

e in

fluen

ce o

f In

form

atio

n (g

ener

al),

inst

ruct

ion,

pro

blem

iden

tifica

tion,

beh

avio

ral i

nfor

mat

ion

poly

arth

ritis

in th

e di

ffere

nt d

omai

ns o

f (n

arra

tives

), m

odel

ing

(by

narr

ativ

es),

vica

rious

rein

forc

emen

t (na

rrat

ives

),

lif

e.

com

paris

on (w

ith n

arra

tives

and

oth

er p

artic

ipan

ts),

emot

iona

l soc

ial s

uppo

rt (b

y

othe

r par

ticip

ants

), se

t hom

ewor

k ta

sks,

prom

pt (e

mai

l afte

r mee

ting

to d

o ho

mew

ork)

.2

Impo

rtan

t per

sona

l goa

ls L

ink

activ

ities

that

are

thre

aten

ed b

y

Info

rmat

ion

(goa

ls, p

yram

id a

nd h

iera

rchy

of g

oals

), re

fram

ing

(hie

rarc

hy o

f

po

lyar

thrit

isw

ithth

eas

soci

ated

hig

her

low

er/h

ighe

rord

erg

oals

),in

stru

ctio

n,p

robl

emid

entifi

catio

n(g

oalh

iera

rchy

and

goal

s. m

ain

goal

s), b

ehav

iora

l inf

orm

atio

n (g

oal m

anag

emen

t str

ateg

ies)

, rec

ord

Dist

ingu

ish

betw

een

low

er o

rder

and

an

tece

dent

s an

d co

nseq

uenc

es o

f beh

avio

r (di

scus

sion

of g

oal m

anag

emen

t

hi

gher

ord

er g

oals.

st

rate

gies

), m

odel

ing

(by

othe

r par

ticip

ants

), co

gniti

ve re

stru

ctur

ing

(dis

cuss

ion

of

Di

scus

s th

e fo

ur g

oal m

anag

emen

t go

al m

anag

emen

t str

ateg

ies)

, em

otio

nal s

ocia

l sup

port

, set

hom

ewor

k ta

sks,

prob

lem

stra

tegi

es a

nd th

eir p

ros

and

cons

and

id

entifi

catio

n (h

omew

ork:

defi

ne th

reat

ened

act

ivity

)

ac

com

pany

ing

emot

ions

.

3 De

alin

g w

ith g

oals

Fo

rmul

ate

the

first

thre

aten

ed a

ctiv

ity

Info

rmat

ion

(gen

eral

), fe

edba

ck (g

roup

dis

cuss

ion

on th

reat

ened

act

ivity

), so

cial

for t

he p

erso

nal t

raje

ctor

y. co

mpa

rison

(gro

up d

iscu

ssio

n), v

icar

ious

rein

forc

emen

t (gr

oup

disc

ussi

on),

gene

ral

Expl

ore

the

feas

ibili

ty o

f goa

l pr

oble

m s

olvi

ng, r

ecor

d an

tece

dent

s an

d co

nseq

uenc

es o

f beh

avio

r (m

enta

l

m

anag

emen

t str

ateg

ies

for r

esol

ving

si

mul

atio

n), i

mag

ery

(men

tal s

imul

atio

n), m

enta

l reh

ears

al (m

enta

l sim

ulat

ion)

,

th

reat

ened

act

ivity

. de

cisi

on m

akin

g (m

enta

l sim

ulat

ion)

refra

min

g (o

f goa

l man

agem

ent s

trat

egie

s by

m

enta

l sim

ulat

ion)

, set

hom

ewor

k ta

sks,

plan

ning

(hom

ewor

k: w

rite

actio

n pl

an)

4 Em

otio

ns &

Act

ion

plan

De

sign

act

ion

plan

for t

he p

erso

nal

Feed

back

(gro

up d

iscu

ssio

n on

act

ion

plan

), so

cial

com

paris

on (g

roup

dis

cuss

ion)

,

tr

ajec

tory

. vi

cario

us re

info

rcem

ent (

grou

p di

scus

sion

), pl

anni

ng (a

ctio

n pl

an),

copi

ng p

lann

ing

Antic

ipat

e re

sist

ance

for c

hang

e fro

m

(act

ion

plan

), in

form

atio

n (e

mot

ions

and

resi

stan

ce),

mod

elin

g (b

y pe

rson

al ro

le

se

lf an

d so

cial

env

ironm

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el),

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rious

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forc

emen

ts (r

ole

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set h

omew

ork

task

s, pr

actic

e be

havi

or

(goa

l man

agem

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trat

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by a

ctio

n pl

an),

prom

pt (e

mai

l afte

r mee

ting

to e

xecu

te

actio

n pl

an)


115

RATIONALE AND DESIGN OF A GOAL MANAGEMENT INTERVENTION5

Alte

rnat

ive

goal

Ev

alua

te a

ctio

n pl

an a

nd th

e go

al

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l rev

iew

(eva

luat

ion

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utio

n ac

tion

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), fe

edba

ck, s

ocia

l com

paris

on (g

roup

m

anag

emen

t str

ateg

y

man

agem

ent s

trat

egy

used

. di

scus

sion

), ge

nera

l pro

blem

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ving

, rec

ord

ante

cede

nts

and

cons

eque

nces

of

&

Eva

luat

ion

Choo

se n

ew a

ctiv

ity fo

r per

sona

l be

havi

or (m

enta

l sim

ulat

ion)

, im

ager

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enta

l sim

ulat

ion)

, men

tal r

ehea

rsal

(men

tal

traj

ecto

ry a

nd p

ract

ice

alte

rnat

ive

goal

si

mul

atio

n), d

ecis

ion

mak

ing

(men

tal s

imul

atio

n) re

fram

ing

(of g

oal m

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t

m

anag

emen

t str

ateg

y to

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ve p

robl

ems

stra

tegi

es b

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enta

l sim

ulat

ion)

, cog

nitiv

e re

stru

ctur

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(of g

oal m

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t

w

ith th

e pa

rtic

ular

act

ivity

. st

rate

gies

), pl

anni

ng (a

ctio

n pl

an),

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ng p

lann

ing

(act

ion

plan

), se

t hom

ewor

k ta

sks,

pr

actic

e be

havi

or (e

xecu

tion

of a

ctio

n pl

an a

nd g

oal m

anag

emen

t str

ateg

y), r

elap

se

prev

entio

n (p

erso

nal w

arni

ng s

igns

)6

Look

ing

back

and

ahe

ad

Eval

uate

act

ion

plan

and

use

d go

al

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l rev

iew

(eva

luat

ion

exec

utio

n ac

tion

plan

), fe

edba

ck, s

ocia

l com

paris

on (g

roup

man

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ent s

trat

egie

s. di

scus

sion

), re

laps

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even

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(per

sona

l war

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ns),

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ng p

lann

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(per

sona

l

Co

nsol

idat

e le

arne

d sk

ills

and

w

arni

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igns

), co

gniti

ve re

stru

ctur

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(of g

oal m

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t str

ateg

ies)

, pla

nnin

g

co

mpe

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(pla

n ac

tions

for f

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opin

g pl

anni

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lan

actio

ns fo

r fut

ure)

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uate

pro

gres

s du

ring

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ram

.

Not

es. #

Adap

ted

from

Mic

hie

et a

l., 2

008

[61]

; Abr

aham

& M

ichi

e, 2

008

[62]

; and

Vrie

zeko

lk e

t al.,

201

3 [5

2]. B

ehav

iora

l inf

orm

atio

n: p

rovi

de in

form

atio

n ab

out

ante

cede

nts

or c

onse

quen

ces

of th

e be

havi

or, o

r con

sequ

ence

s be

twee

n th

em, o

r beh

avio

r cha

nge

tech

niqu

es; C

ogni

tive

res

truc

turi

ng: c

hang

ing

cogn

ition

s ab

out

caus

es a

nd c

onse

quen

ces

of b

ehav

ior;

Com

pari

son:

pro

vide

com

para

tive

data

(cf.

stan

dard

, per

son’

s ow

n pa

st b

ehav

ior,

othe

rs’ b

ehav

ior);

Cop

ing

plan

ning

: ide

ntify

an

d pl

an w

ays

of o

verc

omin

g ba

rrie

rs; D

ecis

ion

mak

ing:

gen

erat

e al

tern

ativ

e co

urse

s of

act

ion,

and

pro

s an

d co

ns o

f eac

h, a

nd w

eigh

them

aga

inst

eac

h ot

her;

Emot

iona

l soc

ial s

uppo

rt: o

ther

par

ticip

ants

and

trai

ner l

iste

n, p

rovi

de e

mpa

thy

and

give

gen

eral

ized

pos

itive

feed

back

; Fee

dbac

k: o

f (se

lf-) m

onito

red

beha

vior

; G

oal r

evie

w: a

sses

s ex

tent

to w

hich

the

targ

et b

ehav

ior i

s ac

hiev

ed, i

dent

ify fa

ctor

s in

fluen

cing

this

ach

ieve

men

t and

am

end

targ

et if

app

ropr

iate

; Im

ager

y: u

se

plan

ned

imag

es to

impl

emen

t beh

avio

r cha

nge

tech

niqu

es; M

odel

ing:

obs

erve

the

beha

vior

of o

ther

s; Pl

anni

ng: i

dent

ify c

ompo

nent

par

ts o

f beh

avio

r and

mak

e a

plan

to

exe

cute

eac

hon

eor

con

side

rwhe

nan

d/or

whe

rea

beh

avio

rwill

be

perfo

rmed

,i.e

.sch

edul

ebe

havi

ors;

Prom

pt: s

timul

us th

at e

licits

beh

avio

r (in

cl. t

elep

hone

cal

ls o

r em

ail r

emin

ders

des

igne

d to

pro

mpt

the

beha

vior

); Re

cord

ant

eced

ents

and

con

sequ

ence

s of

beh

avio

r: so

cial

and

env

ironm

enta

l situ

atio

ns a

nd e

vent

s, em

otio

ns,

cogn

ition

s; Re

laps

e pr

even

tion

: ide

ntify

situ

atio

ns th

at in

crea

se th

e lik

elih

ood

of re

turn

ing

to a

risk

beh

avio

r or f

ailin

g to

per

form

a n

ew b

ehav

ior a

nd h

elp

to p

lan

how

to

avo

id o

r man

age

the

situ

atio

n, s

o th

at n

ew b

ehav

iora

l rou

tines

are

mai

ntai

ned;

Soc

ial c

ompa

riso

n: p

rovi

de o

ppor

tuni

ties

for s

ocia

l com

paris

on e

.g.,

grou

p le

arni

ng;

Vica

riou

s re

info

rcem

ent:

obse

rve

the

cons

eque

nces

of o

ther

’s be

havi

or. N

o de

finiti

on a

vaila

ble:

Gen

eral

pro

blem

sol

ving

; Inf

orm

atio

n; In

stru

ctio

n; M

enta

l re

hear

sal;

Prac

tice

beh

avio

r; Pr

oble

m id

enti

ficat

ion;

Ref

ram

ing;

Set

hom

ewor

k ta

sks.


116

CHAPTER 5

Topics

In the first meeting participants are encouraged to think about the influence arthritis has

on their lives. Four narratives of fictive patients are introduced that are used throughout

the whole program to discuss adaptation and the use of goal management strategies.

Themes presented in the narratives are threatened personal goals, the goal management

strategies, the role of the social environment, and accompanying emotions. Central in the

first meeting is recognition, accomplished through comparison of the participant’s own

situation with the aforementioned narratives and through the exchange of experiences with

other participants. Topics in the second meeting are identifying threatened personal goals

and becoming acquainted with the various goal management strategies. Participants are

encouraged to explore attitudes, behaviors and emotions related to the goal management

strategies, using figures that depict the various strategies (Figure 1).

By formulating lower and higher order goals and discussing the goal management

strategies, participants gain insights into their own behavior and preferences for strategies

regarding vital threatened goals. In addition, by using the goal hierarchy pyramid (see

Figure 2) to differentiate between higher order and lower order goals, participants will be

helped to choose suitable goal management strategies for threatened goals at a later stage.

During the next meetings, participants choose a threatened activity and a suitable goal

management strategy, and formulate and execute a personal action plan for the activity

(meetings 3, 4 and 5). Every step in this process is evaluated individually by homework

exercises and discussed in a group setting. In the fourth meeting, resistance to change

and support from the social environment are also addressed. Central in the fifth and sixth

meetings is the execution of alternative goal management strategies. In the sixth meeting,

the consolidation of learned skills and competencies and the prevention of relapse in

unbeneficial behavior are also addressed. Personal warning signs are used to anticipate a

relapse into undesired behavior and also the use of support from the social environment is

stimulated to prevent relapse.


117


A. Maintenance of goals

B. Adjustment of goals

C. Disengagement of goals

D. Reengagement in new goals

Figure 1 Figures representing the four goal management strategies (A-D)#

# Copyright: 2012 R.Y. Arends, C. Bode, E. Taal, M.A.F.J. van de Laar.


118

CHAPTER 5

Figure 2 Example of the Goal hierarchy pyramid#

#Note. Instructions: Choose an activity that you care about and that is threatened by your rheumatic condition. Write the activity on the bottom layer of the pyramid. Consider whether there is a ‘higher’ goal you can put on the level above. It may help to ask yourself the following questions: Why is this important for me? What is it about the activity that appeals to me? Not all levels in the pyramid always need to be filled, just try to work your way up the pyramid as far as you can.

Behavior change techniques

Many health psychologists have argued for a more precise description of intervention

content, including specifying techniques used to accomplish behavior change [61]. The

explicit communication of intervention content is necessary to study effective ingredients

and to further improve the effectiveness of interventions in the future. In the context of

these developments, the techniques used in the program are listed for each meeting in

Table 2. A couple of techniques that originated from cognitive behavior therapy are used

to stimulate the flexible use of the goal management strategies. Those techniques are used

regularly in psychosocial interventions: group discussions, personal feedback, planning,

self-examination and mental simulation (see Table 2 for a complete list). In particular, the

technique of mental simulation is used to stimulate people to apply a new, and until now

not preferred, goal management strategy. Progress to achieve goals is reached through the

mental simulation of the initiation and maintenance of activities that help to reach a goal

[63]. This technique has shown its feasibility and effectiveness in other studies [64,65].


119


Trainers

Specialized nurses in rheumatology care train and support the groups. Participants have

the same trainer during the entire intervention period. Before the start of the program,

the nurses received a full day ‘train-the-trainer’ course. In this training, the nurses worked

through the entire program as a participant and completed the homework assignments

to experience the techniques used in the program. In a second phase, the nurses gave the

exercises themselves and received detailed feedback on their performance. At the end of

the train-the-trainer course, trainers’ knowledge and skills concerning goal management

and learned intervention techniques were evaluated. During the study period, trainers

receive monitoring and regular supervision by a psychologist.

Control condition

Participants in the waiting list condition do not receive the “Right On Target” program

immediately. Eight months after entry into the study, which is directly after the last follow-

up measurement, participants on the waiting list are invited to follow the program.

Measurements

Table 3 gives an overview of the properties of the measurement instruments used. Participants

are asked to complete six questionnaires including: intake, baseline (T0), directly after the

end of the program (T1), 2 months after the end of the program (T2), 4 months after the

end of the program (T3), and 6 months after the end of the program (T4). Nearly all the

instruments listed in Table 3 were applied in a previous study with polyarthritis patients

[12], and, when available, Cronbach’s alphas from that previous study also appear in Table 3.


120

CHAPTER 5Ta

ble

3 St

udy

para

met

ers,

prop

ertie

s of

the

corr

espo

ndin

g in

stru

men

ts a

nd th

eir m

easu

rem

ent p

oint

(s)

Cont

ent

Mea

sure

men

t Sc

ale

Refe

renc

e Ex

ampl

e ite

m

Scal

e Cr

onba

ch’s

Item

s Re

spon

se o

ptio

ns

po

int

ra

nge

alph

a a

Depr

essi

on

Inta

ke, T

0, T

1,

Hosp

ital A

nxie

ty a

nd

Zigm

ond

& S

naith

, I h

ave

lost

inte

rest

in

0-21

.8

1 7

vario

us re

spon

se fo

rmat

(0-3

)

T4

Depr

essi

on S

cale

(HAD

S)

1983

[60]

m

y ap

pear

ance

.

Anxi

ety

In

take

, T0,

T1,

HA

DS

Zigm

ond

& S

naith

, 198

3 I f

eel t

ense

or w

ound

up.

0-

21

.83

7 va

rious

resp

onse

form

at (0

-3)

T4

Po

sitiv

e T0

, T1,

T4

Posi

tive

subs

cale

of t

he

Wat

son,

Cla

rk, &

Ra

te h

ow y

ou fe

lt du

ring

10-5

0 .9

2 10

ve

ry s

light

ly o

r not

at a

ll (1

) -af

fect

Posi

tive

and

Neg

ativ

e

Telle

gen,

198

8 [6

6]

the

past

wee

k: e

.g.,

ve

ry m

uch

(5)

Affe

ct S

ched

ule

(PAN

AS)

at

tent

ive,

inte

rest

ed.

Pu

rpos

e

T0, T

1, T

4 Pu

rpos

e In

Life

sca

le (P

IL)

Ryff,

198

9 [6

7]; R

yff &

M

y da

ily a

ctiv

ities

ofte

n 6-

30

.82

6 st

rong

ly d

isag

ree

(1) -

in li

fe

Keye

s, 19

95 [6

8]

seem

triv

ial a

nd

st

rong

ly a

gree

(5)

unim

port

ant t

o m

e.So

cial

par

ti-

T0, T

1, T

4ci

patio

n

Fam

ily ro

le, a

uton

omy

Ca

rdol

, De

Haan

, Do

mai

n au

tono

my

0-4

.76

25

very

goo

d (0

) -

ou

tdoo

rs, s

ocia

l rel

atio

ns

De Jo

ng, V

an d

en B

os,

outd

oors

: The

very

poo

r (4

)

an

d w

ork

and

educ

atio

n

& D

e G

root

, 200

1 [6

9]

poss

ibili

ty to

spe

nd

su

bsca

les

of th

e Im

pact

my

(spa

re) t

ime

like

on P

artic

ipat

ion

and

I wan

t to

is…

Auto

nom

y (IP

A)

ques

tionn

aire

Pain

T0

, T1,

T4

1 ite

m w

ith 1

00 m

m

- Pl

ease

indi

cate

how

0-

100

- 1

no p

ain

at a

ll (0

) -

vi

sual

ana

logu

e sc

ale

m

uch

pain

you

had

in

un

bear

able

pai

n (1

00)

the

last

7 d

ays

due

to

your

con

ditio

n?

Fatig

ue

T0, T

1, T

4 1

item

with

100

mm

-

Plea

se in

dica

te y

our

0-10

0 -

1 no

fatig

ue (0

) -

vi

sual

ana

logu

e sc

ale

le

vel o

f fat

igue

com

plet

ely

exha

uste

d (1

00)

aver

aged

ove

r the

pa

st 7

day

s?


121

RATIONALE AND DESIGN OF A GOAL MANAGEMENT INTERVENTIONPh

ysic

al

T0, T

1, T

4 RA

ND-

36 p

hysi

cal

War

e &

She

rbou

rne,

Do

es y

our h

ealth

lim

it

10-3

0 -

10

Yes,

limite

d a

lot (

1) –

func

tioni

ng

fu

nctio

n su

bsca

le

1992

[70]

; Van

der

Zee

yo

u in

thes

e ac

tiviti

es?

No,

not

lim

ited

at a

ll (3

)

& S

ande

rman

, 201

2 [7

1]

If so

, how

muc

h?

E.

g., W

alki

ng a

hal

f mile

.G

oal m

ain-

T0

, T1,

T4

Tena

ciou

s G

oal

Bran

dtst

ädte

r & R

enne

r, W

hen

face

d w

ith

15-7

5 .7

3 15

st

rong

ly d

isag

ree

(1) -

tena

nce

Pu

rsui

t (TG

P)

199

0 [7

2]

diffi

culti

es, I

usu

ally

stro

ngly

agr

ee (5

)

do

uble

my

effo

rts.

Goa

l T0

, T1,

T4

Flex

ible

Goa

l Br

andt

städ

ter &

Ren

ner,

I ada

pt q

uite

eas

ily

15-7

5 .7

9 15

st

rong

ly d

isag

ree

(1) -

adju

stm

ent

Ad

just

men

t Sca

le (F

GA)

19

90

to c

hang

es in

pla

ns

st

rong

ly a

gree

(5)

or c

ircum

stan

ces.

Goa

l dis

- T0

, T1,

T4

Goa

l Adj

ustm

ent S

cale

W

rosc

h, S

chei

er, M

iller

, If

I hav

e to

sto

p

4-20

.5

3 4

stro

ngly

dis

agre

e (1

) -en

gage

men

t

et

al.,

200

3 [4

2]

purs

uing

an

impo

rtan

t

stro

ngly

agr

ee (5

)

go

al in

my

life,

it’s

easy

fo

r me

to re

duce

my

effo

rt to

war

ds a

goa

l. G

oal r

e-

T0, T

1, T

4 G

oal A

djus

tmen

t Sca

le

Wro

sch,

Sch

eier

, If

I hav

e to

sto

p 6-

30

.88

6 st

rong

ly d

isag

ree

(1) -

enga

gem

ent

Mill

er, e

t al.,

200

3 pu

rsui

ng a

n im

port

ant

st

rong

ly a

gree

(5)

goal

in m

y lif

e, I

seek

othe

r mea

ning

ful g

oals.

Goa

l man

a-

T0, T

1, T

4 G

oal M

anag

emen

t

See

artic

le’s

text

-

- -

Ope

n en

ded

gem

ent

St

rate

gy V

igne

ttes

stra

tegi

es

(G

MSV

)Co

ping

T0

, T1,

T4

Copi

ng F

lexi

bilit

y Vr

ieze

kolk

, Van

I c

an e

asily

cha

nge

9-36

-

9 ra

rely

or n

ever

(1) –

ve

rsat

ility

Que

stio

nnai

re

Lank

veld

, Eijs

bout

s, m

y ap

proa

ch if

alm

ost a

lway

s (4

)

(C

OFL

EX)

Van

Helm

ond,

Gee

nen,

ne

cess

ary.

&

Van

den

End

e, 2

012

[5

1]Se

lf-ef

ficac

y T

0, T

1, T

4 Ar

thrit

is S

elf-E

ffica

cy

Lorig

, et a

l., 1

989

[30]

I a

m c

erta

in th

at I

can

1-5

.83

5 st

rong

ly d

isag

ree

(1) -

pain

Scal

e

keep

art

hriti

s pa

in fr

om

st

rong

ly a

gree

(5)

inte

rferin

g w

ith m

y sl

eep.

Se

lf-ef

ficac

y T

0, T

1, T

4 Ar

thrit

is S

elf-E

ffica

cy

Lorig

, et a

l., 1

989

I am

cer

tain

that

I ca

n 1-

5 .8

2 6

stro

ngly

dis

agre

e (1

) -fo

r oth

er

Sc

ale

co

ntro

l my

fatig

ue.

st

rong

ly a

gree

(5)

sym

ptom

s


122

CHAPTER 5

Cont

ent

Mea

sure

men

t Sc

ale

Refe

renc

e Ex

ampl

e ite

m

Scal

e Cr

onba

ch’s

Item

s Re

spon

se o

ptio

ns

po

int

ra

nge

alph

a a

Dem

o-

T0

Sex,

age

, mar

ital s

tatu

s,

- -

- N.

A.

6 va

rious

resp

onse

form

atgr

aphi

cs

ed

ucat

ion

and

curr

ent

stat

e of

em

ploy

men

tDi

seas

e ch

a- T

0 Di

agno

sis

and

dise

ase

-

- -

N.A.

2

Vario

us re

spon

se fo

rmat

ract

eris

tics

du

ratio

nCo

-mor

bidi

- T0

Ch

eckl

ist w

ith 1

5

Base

d on

the

Inte

rnat

iona

l -

0-16

N.

A.

16

-tie

s

cate

gorie

s of

con

ditio

ns b

Clas

sific

atio

n of

Dis

ease

s

(ICD-

10: W

HO, 1

992)

M

edic

atio

n T0

, T1,

T2,

T3,

-

- Se

e ar

ticle

’s te

xt

N.A.

N.

A.

2 Se

e te

xtus

e T4

U

tiliti

es

T0, T

1, T

4 EQ

-5D

Broo

ks, 1

996

[73]

; Lam

ers,

I ha

ve n

o pr

oble

ms

in

1-3

- 15

N

o pr

oble

m (1

) -

M

cDon

nell,

Sta

lmei

er,

wal

king

abo

ut.

ex

trem

e pr

oble

ms

(3)

Kr

abbe

, & B

ussc

hbac

h,

2006

[74]

Dire

ct m

edi-

T0, T

1, T

2, T

3,

- -

See

artic

le’s

text

N.

A.

N.A.

3

Ope

n en

ded

cal c

osts

T4

Indi

rect

non

- T0

, T1,

T2,

T3,

-

- Se

e ar

ticle

’s te

xt

N.A.

N.

A.

7 O

pen

ende

dm

edic

al c

osts

T4Pr

ice e

stim

ate T

1 -

- Se

e ar

ticle

’s te

xt

N.A.

N.

A.

1 In

eur

os fo

r de

com

plet

e co

urse

a Are

nds

et a

l., 2

013;

b Res

pond

ents

cou

ld a

lso

indi

cate

‘oth

er c

ondi

tions

not

list

ed’.

Tabl

e 3

cont

’d


123


Primary outcome measure

Depressive symptoms

The depression subscale of the Hospital Anxiety and Depression Scale (HADS) [60] is used.

The HADS was chosen because the scale is designed to measure the presence and severity of

depressive and anxiety symptoms whilst limiting any confounding effects of physical illness

symptoms by excluding somatic items. The HADS is used both in earlier studies with arthritis

patients [e.g., 54] and in studies on goal management [57]), which facilitates comparison of

study results. The HADS is also used in other interventions intended to influence depressive

symptoms [75]. Concurrent validity of the HADS is very satisfactory and the measure has

sufficient internal consistencies [60,59].

Secondary outcome measures

Anxiety

The anxiety subscale of the HADS [60] is used to measure anxiety symptoms.

Positive affect

The positive subscale of the Positive and Negative Affect Schedule (PANAS) [66] is used for

the measurement of positive affect.

Purpose in life

To assess the extent wherein participants experience a meaningful life, the Purpose In Life

Scale (PIL) [67,68] is used. This scale is comprised of 5 items about a person’s experience with

respect to the presence or absence of life goals. One question about everyday purpose in

life is added to the PIL: ‘Doing the things I do everyday is a source of deep pleasure and

satisfaction’.

Participation

The Impact on Participation and Autonomy (IPA) [69] questionnaire assesses the participants’

satisfaction with social participation. We use the subscales family role, autonomy outdoors,

social relations, and work and education to quantify impediments in participation and

autonomy.

Pain

The severity of pain in the past week is measured by a 1-item visual analogue scale.

Fatigue

The severity of fatigue in the past week is measured by a 1-item visual analogue scale.


124

CHAPTER 5

Physical functioning

The physical functioning subscale of the RAND-36 [70,76,71] is selected to measure physical

functioning.

Measures of mediation variables

To measure the use of goal management strategies, we use three generic disease

questionnaires, and one disease-specific instrument especially designed to measure goal

management in arthritis patients.

Maintenance of goals and adjustment of goals

The tendencies to use the strategies maintaining goals and adjusting goals are measured

by the Tenacious Goal Pursuit and Flexible Goal Adjustment scales (FLEXTEN: TGP & FGA

subscales) [72].

Goal disengagement and goal reengagement

The tendencies to use the strategies goal disengagement and goal reengagement are

measured with the Goal Adjustment Scale (GAS) [42].

Goal management strategy vignettes

We have developed vignettes for explorative purposes in this program called Goal

Management Strategy Vignettes (GMSV). Three vignettes are used to measure the extent in

which a person is flexible in thinking about goal management. The vignettes are short stories

of a person with arthritis who struggles with threatened personal goals in the domains of

social relationships, leisure time and autonomy. To respond, the participant writes down

possible ways in which the vignette character can react to the situation described. To analyze

the answers, deductive coding for similarity with pre-defined strategies is used. To measure

flexibility in thinking of goal management, the increase in the number of strategies that are

mentioned per time point is used.

Coping versatility

The versatility subscale of the Coping Flexibility Questionnaire (COFLEX) [51] is used to

measure coping versatility.

Selfefficacy

To measure self-efficacy for coping with disease symptoms, the Arthritis Self-efficacy Scale

(ASES) [30,77] pain and other symptoms subscales are used.


125


Demographics and disease related measures

Demographics

Baseline measurement includes demographic variables, including sex, age, marital status,

education and current state of employment.

Disease characteristics

Diagnosis, disease duration (in years since diagnosis) and number of co-morbidities are

asked. The diagnosis is checked by a rheumatologist.

Medication use and change of medication

Use of medication is asked with an open-ended question: ‘What medications do you currently

use, as prescribed by your rheumatologist?’ Furthermore, changes in medication are asked

with the question: ‘Has anything changed in your medication in the past two months?’

Response options are: ‘No’ and ‘Yes, I started a new drug. / I stopped a drug. / The dose of a

drug is increased. / The dose of a drug has been reduced.’

Measures for the economic evaluation

Utilities

The EuroQol-5D (EQ-5D) [73,74] is used to assess utilities. The EQ-5D descriptive system

consists of five dimensions: mobility, self-care, usual activities, pain/discomfort and anxiety/

depression [74]. Furthermore, the ‘thermometer’ is asked; patients rate their health status

on a scale from 0 (worst possible health) to 100 (best possible health).

Direct medical costs

Medical costs are collected on a bimonthly basis. Patients are asked the number of telephone

consultations they have with their GP, as well as their number of visits to the GP, medical

specialist, other paramedical and alternative therapists, and hospital days.

Indirect nonmedical costs

Indirect non-medical costs are collected at the same frequency as the direct medical costs.

Patients are asked about their absenteeism from work, domestic care, domestic help, and

informal care.

Price estimate

Participants in the program group are asked at the post-intervention T1 measurement how

many euros they would spend for participation in this program if no health insurance would

pay the costs.


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Measures for the process evaluation

A brief questionnaire about the general evaluation of the session, the content, material,

exercises and the presentation of the trainer is completed by the participants after each

session. The trainers also fill in a short evaluation form at the end of each session and a

comprehensive evaluation sheet at the end of each program.

Measures for the competence of group trainers

During the first two courses, the trainers receive one-hour supervision after every session,

and afterwards supervision occurs less frequently, but on a regular basis. Random sessions

are recorded with a voice recorder and checked for correct delivery of the protocol.

Stakeholders’ analysis measures

At the end of a program, two participants per group are randomly chosen and interviewed

to evaluate the program with the use of a structured interview scheme. At the end of the

study, all the trainers and one person of the management team of the participating clinics

are asked during a structured interview to evaluate the program and give suggestions for

implementation.

Sample size

The sample size calculation is based on depressive symptoms as a primary objective. In order

to demonstrate a medium-sized effect (Cohen’s d = 0.40), 100 participants in each condition

are required, based on a statistical power (1-beta) of 0.80, a two-sided test and an alpha of

0.05 (power calculation with G-power).

Analysis

Preliminary analysis

A flow chart of participation during the total study will be drawn. Reasons for dropout will

be summarized. Percentages of missing values and dropout will be displayed. Background

variables and summarized scores on questionnaires will be given. One-way ANOVA’s and

χ2-tests will be performed to check for differences between the two conditions at baseline

for any of the demographic variables and/or outcome measures. Intention to treat-analyzes

will be conducted with use of baseline (T0) or post-intervention (T1) data depending on the

last present measurement data.

Effectiveness analysis on primary and secondary outcome measures

To examine differences between the two conditions on all outcome measures, analysis of

variance for repeated measures (group x time) will be used. If demographic or outcome

measures differ significantly between the groups at baseline, these measures will be


127


incorporated into the analysis as covariate(s). Planned polynomial contrasts are used to

analyze differences in effect of the program post-intervention and after the follow-up in

the experimental group. Effect sizes of the experimental group in primary and secondary

outcomes at post-intervention and follow-up will be calculated with Cohen’s D using the

means and pooled standard deviations of the measurements of the conditions. Effect sizes

are considered according to Cohen [78] as follows: small d=0.2, medium d=0.5, and large

d=0.8. To see if subgroups (e.g., high/low age, gender, disease severity) respond better to the

program, subgroup analyzes will be calculated using independent t-tests or Mann-Whitney

tests.

Analysis of mediation

Multiple mediation analysis will be performed to analyze whether the tendencies to use

goal management strategies and coping versatility mediate the effects in the intervention.

Primary and secondary outcomes used are the measures of depression, anxiety, purpose in

life, positive affect and participation. Baseline and post-intervention measurements of both

intervention and waiting list group will be used. A change score for tendencies to use goal

management strategies and coping versatility will be computed with scores from baseline and

post-intervention measurement. Multiple mediation analysis with bootstrapping procedures

(n = 5000 bootstrap re-samples) will be used to assess the indirect effect of the mediation

pattern, as recommended by Preacher and Hayes [79]. An indirect effect will be considered

significant in the case when zero is not contained in the 95% bias-corrected confidence

interval. Self-efficacy pain and self-efficacy for other symptoms will be incorporated in the

multiple mediation analyzes as putative mediators. To analyze whether the GSMV mediate

the effects of the intervention on the primary and secondary outcome measures, dummy

variables will be used to indicate whether or not a strategy is named.

Economic evaluation

Results will be expressed as quality-adjusted life years (QALYs). The time-integrated summary

score, which is the area under the curve (AUC) of the utilities, will be calculated to define

the quality of life per time period (0-2 months and 0-8 months). Between-group differences

in QALYs will be analyzed per period using t-test for unpaired observations. The costs will

be presented as an arithmetic mean (+- SD) per patient per group. The between-group

differences in resource use will be analyzed per period using the Mann-Whitney U test.

For every patient and study period, the mean incremental costs will be calculated, and,

using double-sided bootstrapping, 95% confidence intervals (95%CI) will be estimated. The

incremental cost utility ratio (ICER) will be calculated by dividing the extra costs for the

goal management intervention by the extra QALYs derived from the goal management

intervention. The ICER will be expressed as costs per QALY gained. The 95% confidence

intervals of the ratios will be estimated with bootstrapping. Cost evaluations will be


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CHAPTER 5

conducted from the societal perspective and with a time-horizon of less than one year. Due

to this short time-horizon, costs and effects will not be discounted.

Discussion

The purpose of the presented study protocol is to evaluate the effectiveness of the “Right

On Target” program, a newly developed goal management intervention. We predict that

the experimental condition will show positive effects compared with usual care in reducing

depressive and anxiety symptoms and in improving positive affect, purpose in life and social

participation, and will be cost effective. Both the program itself and its evaluation are likely

to add to the existing body of knowledge in several ways, as described below.

Strengths and limitations of the goal management intervention

To the best of our knowledge “Right On Target” is the first program that focuses on the four

goal management strategies of goal maintenance, goal adjustment, goal disengagement

and goal reengagement to support improvement of adaptation to a chronic disease. The

possibility to tailor the program to the personal needs of participants is expected to increase

its effectiveness and participants’ commitment to the program.

We provided a detailed description of the ingredients of the intervention, in accordance

with the argument of Michie et al. [61], in order to communicate applied techniques that

support the development of effective interventions and to improve knowledge regarding

effective behavior change techniques. We hope to be able to identify the active ingredients

in our intervention by clearly stating the underlying theory and assumed mechanisms of

behavioral change.

Furthermore, the present study incorporates a holistic focus on adaptation, as the

outcomes assessed are both the absence of psychological distress and the presence of well-

being. Hence, this research focuses not only on the difficulties that people may experience

due to a chronic disease, but also on personal sources of resilience.

As stated earlier in this paper, the goal management program focuses on dealing with

threatened personal goals, rather than a pre-defined focus on disease-related goals.

This program may ask for different competencies than health professionals are used to

deploying in their daily practice. The specialized nurses in rheumatology care who provide

the program have undergone extensive training. During the study period, the nurses receive

regular guidance and supervision. Nevertheless, it is possible that nurses find it difficult

to “sit on their hands” and not provide immediate solutions. This program might be less

suitable without the extensive training and guidance of the nurses.


129


Strengths and limitations of the randomized controlled trial

Our study will hopefully answer questions regarding the effectiveness of the goal manage-

ment intervention for patients with a rheumatic disease. We try to understand the pathways

that are responsible for successful adaptation in persons dealing with a rheumatic disease

and investigate who benefits most. In addition, we have included an economic evaluation.

However, these additional analyzes cannot be conducted in absence of an effect of the goal

management intervention compared to the waiting list group.

As the “Right On Target” program is a newly developed intervention, we execute a stakeholders’

analysis. Experiences of participants, trainers and the management of the participating clinics

provides insight into the feasibility regarding the intervention. The information from the

stakeholders’ analysis supports future implementation of the intervention.

Conclusion

To test the effectiveness of the “Right On Target” program to increase adaptation to

polyarthritis, a randomized controlled trial is needed and a design for this study is presented.

Results from this trial will test the effectiveness of the “Right On Target” program in improving

the adaptation of patients to polyarthritis in terms of the absence of psychological distress

and the presence of well-being. The protocol for the randomized controlled trial reflects a

comprehensive view both on adaptation and on goal management. The presented study

will add to the existing body of knowledge of health promotion interventions.

Trial registration

Nederlands Trial Register = NTR3606, registration date 11-09-2012.

Acknowledgements

We thank our two patient partners, Lynn Packwood and Klaas Sikkel, who added the patient

perspective to this project. We thank Riëtte Leemreize-Mol for her valuable contribution to

the intervention from her nursing perspective. The project is financially supported by the

Stichting Reumaonderzoek Twente, a foundation for research in rheumatology.


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6


6A goal management

intervention for patients

with polyarthritis and

mild depressive symptoms:

A quasi-experimental

study

R.Y. Arends

C. Bode

E. Taal


Submitted for publication


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CHAPTER 6

Abstract

Objectives

Goal was to establish whether an intervention that aims to increase goal management

competencies is effective in decreasing symptoms of depression and increasing wellbeing in

patients with polyarthritis with elevated levels of depressive symptoms.

Methods

Eighty-five persons with polyarthritis and mild depressive symptoms participated in the goal

management intervention consisting of six group-based meetings. A quasi-experimental

design with baseline measurement, follow-up at 6 months and a reference group of

151 patients from an observational study was applied. Primary outcome was depression;

secondary outcomes were anxiety, purpose in life, positive affect, satisfaction with

participation, goal management strategies, and arthritis self-efficacy. A linear mixed model

procedure was applied to evaluate changes in outcomes.

Results

No improvement was found for depressive symptoms and no changes were found for the

secondary outcomes, except for positive affect that improved in the intervention group. This

increase was mediated by an increase in goal adjustment. Furthermore, goal maintenance

decreased and self-efficacy for other symptoms increased in the intervention group.

Conclusions

This study indicates that interventions designed to aid patients with arthritis with goal

management skills are potentially helpful for increasing wellbeing, although further studies

are needed.


137

QUASI-EXPERIMENTAL STUDY OF A GOAL MANAGEMENT INTERVENTION

Introduction

Chronic diseases, such as polyarthritis, present a number of challenges to patients in several

life domains [1]. People with a chronic disease have to manage their disease in combination

with possibly conflicting roles and tasks, and this daily management takes place mostly

outside the healthcare system [2,1]. Interventions that help participants acquire skills and

techniques are seen as essential to supporting patients to achieve self-management [3].

Adaptation to chronic disease is an ongoing process of finding equilibrium in a situation

that can constantly change [4]. The psychological component of this process of adaptation

to a chronic disease has been described as healthy rebalancing to new circumstances [5].

In the present study, the effect of a health promotion intervention that focused on coping

with threatened activities and life goals due to arthritis was evaluated. The intervention,

called Right on Target, aimed at helping people with polyarthritis and elevated levels of

depressive symptoms to increase their goal management competencies and thereby increase

their adaptation. This intervention was designed based on theories of goal management [6].

Having personal goals and striving towards them gives individuals structure and meaning

to their lives and is essential for wellbeing, identity, purpose in life and satisfaction [7-9].

However, pursuing personal goals may also produce negative psychological effects when

they become unattainable or no progress is made [10,11]. Goal management strategies refer

to the various strategies that can be applied to minimize discrepancies between the actual

situation and the goals of an individual.

The intervention derives from the comprehensive Integrated Model of Goal Management,

which combines four strategies from two established models [12]: (1) the maintenance of

goals and adjustment of goals [13,9] and (2) the disengagement of goals and reengagement in

new goals [14]. The first strategy, goal maintenance, involves attempts to alter unsatisfactory

life circumstances and situational constraints in accordance with personal preferences. Goal

adjustment covers the adjustment of personal goals, which involves the revision of self-

evaluative standards and personal goals in accordance with perceived benefits and losses.

Thirdly, goal disengagement is theorized to be a facet of the broader strategy of goal

adjustment as it conceptualizes the ultimate form of adjusting goals [12]. Goal disengagement

occurs when a goal is perceived as no longer attainable, and the individual withdraws any

effort and commitment to that goal. Finally, the fourth strategy is goal reengagement, which

includes identifying, committing to and starting to pursue new goals. In an earlier study,

patients referred to and saw these four strategies as behavioural options [15].

Earlier studies linked the goal management strategies to levels of distress and wellbeing

in patients with polyarthritis [12,16]. The inability to use several strategies – low coping

flexibility [17] – was linked to lower levels of adaptation, while a broad repertoire of goal

management strategies was related to higher levels of adaptation. Being capable of using

different approaches in different situations can be especially beneficial for people with


138

CHAPTER 6

inflammatory arthritis, as they must deal with the disease’s unpredictable inflammatory and

fluctuating course [18]. To facilitate participants’ coping flexibility general applicable goal

management competencies that can be used in daily life for various situations are learned

during the intervention. Right on Target assumes a person-focused perspective in which all

aspects of a patient’s life are included [6].

The present study investigated whether the intervention was effective in improving

depressed mood (primary outcome) and anxiety, purpose in life, positive affect and satisfaction

with social participation (secondary outcomes) in people with polyarthritis. The outcomes

were chosen in order to formulate a multi-dimensional display of successful adaptation that

includes the absence of psychological distress, and the presence of wellbeing [4,12,5,16].

Symptoms of depression were chosen as a primary outcome since it is the most studied

outcome in relationship to goal management in chronic diseases [19-22] and particularly

well-researched and documented among patients with arthritis [23-26]. Depression and

anxiety are components of psychological distress that affect 20 to 40 % of the patients

[27,28,24,29-32]. Several positive concepts can prevent psychopathology and promote a

satisfying life with polyarthritis. Firstly, the sense of a purpose in life is largely derived from

having valued activities in which to engage [8]. Purpose in life was found related to quality

of life in arthritis patients [33] and in another study, goal maintenance, goal adjustment

and goal reengagement related to purpose in life [12]. Secondly, the experience of positive

affect is considered an indicator of adaptation and psychological health. [4]. Positive affect

can reduce the negative influence of pain on wellbeing and prevent clinical depression [34-

36,4]. In addition, the participation in society of persons with arthritis is often negatively

affected by symptoms and limitations caused by the disease [37,38]. The assessment of social

roles is largely subjective as they are carried out from a sense of personal value or necessity

[39]. The subjective nature of participation was considered of particular interest since Right

on Target focused on the management of personal goals.

Perceived self-efficacy – the confidence that one can accomplish a particular goal – is

considered a key mechanism through which existing self-management programmes increase

health behaviour and health status [40,41]. The goal management intervention contains

some of the behaviour change techniques that are considered to enhance the self-efficacy

process [42,41]. Therefore, self-efficacy for coping with symptoms of arthritis was included

as a putative mediator.

Methods

Trial design

For a full description of this study’s design, as initially planned, please refer to Arends et al. [6].

Originally, the study was planned as a randomized controlled trial. However, changes were


139


made to the design, due to the initial small number of applicants. All eligible participants were

assigned to the intervention group after enrolment, resulting in a quasi-experimental study

design. The reference group consisted of selected polyarthritis patients who participated in

a longitudinal observational study that ran from October 2010 to June 2012 [12,16]. Ethical

approval for this study was granted by the Medical Ethics Committee Twente.

Procedure of recruitment and data collection

Intervention group. Participants were recruited by: inviting participants from four arthritis

clinics in The Netherlands, contacting participants of previous studies, listing news items

in local newspapers, and placing announcements in local patient organization bulletins.

Recruitment ran from October 2012 to October 2013. Applicants received information by

post along with an application form, an informed consent, and a screening questionnaire.

Inclusion criteria were: age ≥ 18 years, a diagnosis of polyarthritis, and a score of ≥ 4 on the

depression subscale of the Hospital Anxiety and Depression scale (HADS-D). Exclusion criteria

were severe psychological distress (indicated by a score of ≥ 22 on the HADS), insufficient

Dutch language skills, and/or enrolment in psychotherapeutic treatment at the time of entry

into the study.

Reference group. Participants for the longitudinal observational study were randomly

selected from the electronic diagnosis registration system of a rheumatology clinic and

subsequently received an invitation for the questionnaire study. The same criteria used

to select the current intervention group were applied to the 331 participants in the

observational study, ultimately leading to a selection of 160 eligible patients for the reference

group. Subsequently, data of nine persons were removed due to their participation in the

intervention, resulting in 151 persons in the reference group.

Data collection procedure. Data were collected through questionnaires sent home at

baseline, at post-intervention (2 months, only intervention group), and at follow-up (6

months).

Intervention

Content. The content of the psycho-educational programme Right on Target [6] was as

follows. First, awareness of the impact of arthritis on participants’ life was increased, and

goals at risk were analysed. Second, participants’ usual ways of dealing with such difficulties

(e.g. valued activities threatened by arthritis) were examined, and goal management

strategies were discussed and compared. Subsequently, participants selected a threatened

activity to focus on in their personal trajectory. In order to experience and practice multiple

goal management strategies, participants were stimulated to try out various behavioural

options. During the group meetings, the experiences in their personal trajectory were

evaluated and discussed, and participants were encouraged to help and stimulate each

other’s new behaviour.


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The programme consisted of six group-based meetings with 6-8 participants, led by a

nurse specialized in arthritis care. Trainers followed a one-day training course and received

supervision and monitoring by a psychologist during their execution of the intervention. The

first four meetings were weekly, the fifth and sixth meetings were bi-weekly. The duration

of every meeting was 2 hours. In total, thirteen groups were held at four rheumatology

clinics.

Enrolment, treatment adherence and retention. In total, 206 patients expressed an interest

in participating in the intervention (Figure 1). After screening, eligible applicants were

contacted by a trainer in their region to plan the patient’s participation in the intervention.

Participants that attended at least one intervention meeting were included in the analysis.

In the intervention group, 83.5% of the participants returned the questionnaires at all

measurement times and 62.9% attended all meetings. Participants that missed one or two

group meetings received additional information from their trainer, allowing participants to

prepare for their next meeting. Participants that withdrew were asked to state their reasons.

Participants in the intervention group were significantly more likely woman, younger,

diagnosed with RA, reported higher levels of fatigue and had shorter disease duration

compared to participants in the reference group, see also Table 1.

Figure 1 Participant flow within the intervention group

Assessed for eligibility (n = 206)

Allocated to intervention (n = 111)

Excluded (n = 95) Not meeting inclusion criteria (n = 95) •  Depression score < 4 (n = 67) •  Severe distress HADS ≥ 22 (n = 15) •  Psychotherapeutic treatment (n = 9) •  Other diagnosis (n = 4)

Received allocated intervention (n = 70) •  Attended all meetings (n = 44) •  Missed 1 meeting (n = 21) •  Missed 2 meetings (n = 5)

Discontinued intervention (n = 15) •  Content does not fit expectations (n = 5) •  Already able to cope with arthrits (n = 3) •  Personal circumstances (n = 4) •  Due to arthritis and/or illness (n = 3)

Measures available (n = 85) •  Completed baseline assessment (n = 83) •  Completed post-intervention assessment (n

= 77) •  Completed follow-up assessment (n = 75)

Did not start intervention (n = 26) •  No longer interested (n = 7) •  Unattainable (n = 3) •  Not available at scheduled dates (n = 16)


141


Table 1 Baseline demographics and disease characteristics of participants in the intervention and the reference

group.

Demographic characteristics Intervention n = 85 References n = 151 Differences on baseline a

N (%) Sex, n (%) χ2 (1) = 5.08, p < .05

Male 24 (28.2) 65 (43) Female 61(71.8) 86 (57) Age (years), mean (SD), range 57.34 (11.63), 23-82 64.99 (12.39), 22-91 t(234) = -4.65, p < .001

Marital status, n (%) χ2 (1) = .69, ns. Not living with partner 19 (22.4) 42 (27.8) Living with partner 63 (74.1) 107 (70.9) Missing 3 (3.5) 2 (1.5) Educational level, n (%)b χ2 (2) = 5.37, ns. No/Lower 27(31.8) 72(47.7) Secondary 40 (47.1) 54 (35.8) Higher 15 (16.6) 22 (14.6) Missing 3 (3.5) 3 (2.0) Work status, n (%) χ2 (1) = 2.08, ns. No paid job 55 (64.7) 115 (76.2) Full-time and part-time employment 26 (30.6) 35 (23.2) Missing 4 (4.7) 1 (0.7) Anti-depressive medication use, yes (%) 19 (21.1) 35 (23.2) χ2 (1) = .56, ns.Disease characteristics Diagnosis, n (%) χ2 (5) = 12.52, p < .05 Rheumatoid arthritis 65 (76.5) 84 (55.6) Gout and other crystal diseases 2 (2.4) 13 (8.6) Polymyalgia and Temporal Arteriitis 6 (7.1) 21 (13.9) Spondylarthropathy 6 (7.1) 11 (7.3) SLE and other systemic diseases 1 (1.2) 8 (5.3) Other/non-classifiable 5(5.9) 14(9.3) Disease duration (years), mean (SD), range 7.81 (8.30), 0-41 16.21 (14.03), 0-71 t(232.53) = -5.6, p < .001

Comorbidities c, n (SD) 1.40 (1.27) 1.64 (1.56) t(234) = -1.22, ns

Fatigue d, mean (SD) 60.42 (22.07) 47.97 (24.37) t(228) = 3.85, p < .001

Pain e, mean (SD) 45.22 (22.78) 4.49 (2.36)

Note: SD = standard deviation. a Independent sample t test and Pearson’s Chi-square were used. b Low: No education, primary school or lower vocational education; Middle: high school and middle vocational education; High: high vocational education and university. c Checklist with 15 conditions. d Fatigue in the past week was asked using a visual analogue scale: 0 (no fatigue) – 100 (completely exhausted). e Pain was measured using a visual analogue scale in the intervention group (range 0 – 100) and with a numerical rating scale in the reference group (0 – 10). Therefore, no test for differences at baseline could be performed.


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Measures

The depression subscale of the Hospital Anxiety and Depression Scale (HADS-D) measures

presence and severity of depressive symptoms [43]. Higher scores indicate more depressive

symptoms (range 0-21). Internal consistency at baseline was in the intervention group α = .66

and in the reference group α = .31. (Note that internal consistency for depression was α = .80

in the whole sample of the observational study, which might indicate that the low internal

consistency in the subgroup is related to the applied inclusion criterion of HADS-D ≥ 4).

Anxiety symptoms were measured with the HADS anxiety subscale, with higher scores

indicating more anxiety symptoms (range 0-21, α = .75). The extent wherein participants

experienced a meaningful life (i.e. purpose in life) was measured with the Purpose In Life

Scale (PIL) [44,45], with one added question [12]: “Doing the things I do every day is a source

of deep pleasure and satisfaction”. Higher scores indicate more purpose in life (range 6-30,

α = .77). The positive subscale of the Positive and Negative Affect Schedule, which consists of

ten positive mood descriptors, was used for the measurement of positive affect [46]. Higher

scores indicate more positive affect in the past week (range 10-50, α = .89). Participants’

satisfaction with social participation was measured with the Impact on Participation and

Autonomy (IPA) [47]. Higher scores indicate more satisfaction (range 0-4, α = .89). The

following domains were used: family, autonomy outdoors, and social relations.

The Tenacious Goal Pursuit and Flexible Goal Adjustment scales [48] were used to measure

assimilative tenacity (maintenance of goals) and accommodative flexibility (adjustment

of goals), respectively. High scores on these scales indicate high assimilative tenacity and

high accommodative flexibility, respectively (range 15-75, goal maintenance α = .73, goal

adjustment α = .78). Goal disengagement and goal reengagement were measured with the

Goal Adjustment Scale [14]. This scale measures how respondents usually react if they have

to stop pursuing an important goal. Higher scores indicate a tendency to disengage from

unattainable goals (goal disengagement, range 4-20, α = .56) and a tendency to reengage

with new goals (goal reengagement, range 6-30, α = .86). Two subscales of the Arthritis Self-

efficacy Scale were used (range 1-5) to measure selfefficacy for pain (α = .82) and selfefficacy

for other arthritis symptoms (α = .79) [49,50]. Higher scores indicate greater perceived ability

to control aspects of arthritis. At baseline, demographic variables and diagnosis, disease

duration, pain, fatigue, and amount of comorbidities were assessed.

Statistical methods

In order to demonstrate a medium sized effect d = 0.40, 100 participants in each condition

were required, based on a statistical power of 80% and a significance level of 0.05. All

statistical analyses were performed using SPSS version 21 for Windows (IBM Statistics).

Independent samples T-tests and χ2 tests were used to examine significant differences at

baseline between the conditions.

Differences in scores between the intervention group and the reference group on


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outcomes and possible mediators were studied using the linear mixed model procedure

(LMM). Outcomes at baseline and 6 months follow-up were used as repeated measures, with

group (2 levels: intervention/reference group), time (2 levels) and their first order interactions

as fixed factors. The estimation method used was Restricted Maximum Likelihood (REML)

and the covariance structure unstructured. Sex, age, diagnosis (dummy coded) and disease

duration were sequentially added to the model in order to control for their influence, and

then removed when the model did not become more explanatory. For significant differences

in changes in outcomes over time 95% confidence intervals were calculated. Taking into

account the differing sample sizes and differences on baseline values, the effect size dcorr is

reported for significant differing outcomes (small d = 0.2, medium d = 0.5, and large d = 0.8),

calculated with an online calculator [51].

Separate analyses with three time moments were carried out using only intervention

group data. The course of primary and secondary outcomes using time as fixed factor (3

levels: baseline/ post-intervention/ follow-up) was analysed using the linear mixed model

procedure, with the unstructured covariance structure, and controlling for relevant patient

characteristics as described above.

To examine whether improvement in possible mediators would mediate the effect of the

intervention on outcome variables, separate mediational analyses with linear regression

and bias-corrected bootstrapping procedures (n = 5000 bootstrap resamples) were used

[52]. An indirect effect was considered significant when zero was not contained in the 95%

confidence interval.

Results

With regard to the primary outcome, no significant improvement was present on the

depression subscale of the HADS in the intervention group compared to the reference group

(group* time [95% CI] -.20 [-.99, .59], p = .624), see Table 2. For the secondary outcomes

of anxiety, purpose in life and participation, no significant improvement was present in

the intervention group compared to the reference group. With regard to positive affect,

significant improvement was present in favour of the intervention group when compared

to the reference group (2.01 [.43, 3.59], p = .013, dcorr = .25). Goal maintenance decreased

significantly in the intervention group compared to the reference group (-1.89 [-3.48, -.30],

p = .020, dcorr = -.32). Significant improvement was present in goal adjustment in favour of

the intervention group compared to the reference group (2.34 [.93, 3.74], p = .001, dcorr =

.31). For goal disengagement, goal reengagement and self-efficacy for pain, no treatment

effect was found. Self-efficacy for other symptoms significantly increased in the intervention

group when compared to the reference group (.22 [.06, .38], p = .008, dcorr = .35).


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Table 2 Means and standard deviations on outcome baseline measurements and follow-up measurements,

estimated effects and effect sizes of the intervention group compared to the reference group.

Intervention group Reference group Group * time p value dcorr

Mean (SD) Mean (SD) (95% CI) Depression -.20 (-.99 to .59) .624 Baseline 6.28 (3.10) 6.69 (2.32) Follow-up 5.76 (3.60) 6.22 (3.18) Anxiety -.72 (-1.56 to .11) .088 Baseline 6.59 (3.51) 5.96 (2.89) Follow-up 5.92 (3.36) 6.00 (3.09) Purpose in life .47 (-.42 to 1.35) .300 Baseline 20.40 (3.81) 20.71 (3.49) Follow-up 20.73 (3.79) 20.66 (3.18) Positive affect 2.01 (.43 to 3.59) .013 .251 Baseline 31.03 (6.83) 31.77 (6.47) Follow-up 33.35 (6.64) 32.46 (6.27) Participation -.03 (-.16 to .11) .674 Baseline 2.43 (0.49) 2.41 (0.55) Follow-up 2.37 (0.61) 2.44 (0.61) Goal maintenance -1.89 (-3.48 to -.30) .020 -.322 Baseline 46.38 (6.36) 45.00 (5.89) Follow-up 44.21 (6.18) 44.77 (5.82) Goal adjustment 2.34 (.93 to 3.74) .001 .311 Baseline 47.77 (8.05) 50.30 (5.40) Follow-up 49.53 (5.62) 49.96 (5.23) Goal disengagement .02 (-.68 to .73) .947 Baseline 11.55 (2.51) 11.61 (2.26) Follow-up 11.55 (2.28) 11.49 (2.24) Goal reengagement .30 (-.70 to 1.30) .556 Baseline 20.93 (3.44) 20.97 (3.40) Follow-up 21.43 (3.39) 21.18 (3.48) Self-efficacy pain .12 (-.07 to .29) .238 Baseline 2.69 (0.82) 3.06 (0.75) Follow-up 2.92 (0.80) 3.19 (0.74) Self-efficacy other .22 (.06 to .38) .008 .345 Baseline 2.95 (0.71) 3.36 (0.58) Follow-up 3.18 (0.66) 3.38 (0.65)

Notes: Number of respondents with complete data per sub questionnaire for intervention group on baseline = 78-83, and follow-up = 72-75; and for the reference group on baseline = 146-151, and follow-up =127-130.


145


The analysis with three measurement moments with the intervention group showed that

positive affect significantly increased over time (time [95% CI] 1.26 [.54, 1.97], p = .001,

means: t0 = 31.03, t1 = 33.64, t2 = 33.35), which supports the previous analysis that included

the reference group. No significant changes in the course over time of depression were

found in the intervention group (-.23 [-.63, .17], p = .261, means: t0 = 6.28, t1 = 5.93, t2 =

5.76). Similarly, no significant changes for anxiety, purpose in life, or participation over time

were found (data not shown).

Mediation analyses were executed with positive affect on follow-up as an outcome,

controlling for baseline positive affect and the mediator variable at baseline. Levels of goal

maintenance, goal adjustment and self-efficacy for symptoms other than pain significantly

changed in the hypothesized direction between baseline and follow-up and, therefore, were

assessed as possible mediators of the treatment effect on positive affect. Change in goal

maintenance and self-efficacy for other symptoms did not mediate the relation between

group and positive affect (data not shown). The relationship between group and positive

affect was significantly mediated by goal adjustment (b = 0.49 [.05, 1.18], p < .05). Controlled

for positive affect and goal adjustment at baseline, the intervention group showed a stronger

increase in positive affect at follow-up than did the reference group (Step 1 in Table 3). Step

2 in Table 3 shows that the improvement in goal adjustment significantly predicted positive

affect at follow-up (see also Figure 2). The group effect became non-significant.


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Table 3 Mediation analysis of improvement of goal adjustment on positive affect at follow-up

Positive affect follow-up (T3) Step 1 Step 2n = 198 (B, SE, 95% CI) (B, SE, 95% CI)Group a 1.54* .75 .06, 3.02 1.05 .72 -38, 2.47Baseline Positive affect (T0) .64*** .06 .53, .76 .61*** .06 .50, .72Baseline Goal adjustment (T0) -.07 .06 -.19, 05 .11 .07 -.02, .25Improvement in Goal adjustment .39*** .08 .22, .55(T3-T0)Explained variance (adjusted R2) .40 .46 Indirect effect, bootstrap SE, .49* .28 .05, 1.18 bootstrap 95% CI

Note: * p < .05; ** p < .01; *** p <.001. a intervention group versus reference group.

* p < .05; ** p < .01; *** p < .001

Figure 2 Standardized regression coefficients for the relationship between group and positive affect as mediated

by goal adjustment. The indirect effect via goal adjustment is between parentheses.

Discussion and Conclusion

Objective of this study was to examine whether an intervention aimed at increasing

goal management competencies decreased depressive symptoms and improved levels of

adaptation in people with polyarthritis and elevated levels of depressive symptoms. Contrary

to our hypothesis, there was no decrease in levels of depressive symptoms in Right on Target

participants when compared to the reference group. Levels of anxiety symptoms, also, did

not decrease for participants that received the intervention, nor did their purpose in life


147


or satisfaction with social participation increase significantly as compared to the reference

group at follow-up. Participants, nevertheless, did experience an increase in positive affect

during and after the goal management intervention, and this increase in positive affect

continued at follow-up. An increase in goal adjustment significantly mediated the increase

in positive affect in the intervention group. The other three goal management strategies did

not relate to the increase in positive affect.

The finding that an increase in goal adjustment mediated the stable increase in positive

affect is promising, as it indicates that the intervention can be applied to increase the

goal management skills of people with polyarthritis and this enhanced ability can, in

turn, stimulate positive adaptation. The association between increased adaptive (coping)

strategies and increased positive affect is in line with previous research [12,53,54,16].

Results for the other secondary outcomes (anxiety symptoms, purpose in life and

satisfaction with participation) and the primary outcome depression were disappointing.

The time needed for visible changes to occur in positive affect is expected to be shorter

than for anxiety, depression, purpose in life and satisfaction with participation. Therefore, a

longer follow-up might have provided more insight into possible changes in these outcomes.

However, the intervention may also have no effect on these outcomes, even when a longer

follow-up is applied.

The strategy of goal adjustment proved to be the most valuable, in accordance with

previous research among patients with polyarthritis and populations with other chronic

diseases or disabilities [12,20,19,16]. With regard to the other three strategies the findings

are mixed. The tendency to maintain goals decreased among participants, but was not

found to mediate the increase in positive affect. Through participating in the intervention,

participants might have realized that some goals no longer matched with their personal

capacities and compensatory activities at disposal. While the experience of an irreversible

loss of goals during the programme might evoke negative feelings, it can also accelerate

the processes of adaptation, which can, in the long run, increase wellbeing [13]. In this way,

the absence of improvement on the adaptation outcomes (except for positive affect) in this

study could be due to the fact that accepting the unattainability of goals needs time, and

that an increase of positive affect is the first sign of the adaption process.

Despite our expectations, participants did not increase their tendency to search for and

commit to new goals. Possibly a first step in adapting to the disease is to downscale the

importance of certain goals. Searching for new goals might actually be a step beyond

the timeframe in which this study took place. In addition, the ability to disengage from

goals did not increase in the intervention group. Apart from theoretical explanations, the

measurement performance indicators of the related subscale for the strategy disengagement

of goals might have contributed to the (lack of) results found for the ability to disengage

from goals.

Participants increased their efficacy in coping with the influence that arthritis symptoms


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have in their daily lives. One explanation for this result is that the behavioural change

techniques applied in the programme to increase goal management competencies [6] are

usually also applied to increase self-efficacy [41,42]. Although self-efficacy did not mediate

the relation between the intervention and the increase in positive affect, the increase of

self-efficacy is a valuable result given its role in the improvement of health behaviour and

health status [40].

Parallel to the present study, an in-depth process evaluation of Right on Target was

executed [55]. Adherence to the protocol was found to be satisfying, indicating that

the intervention was executed as intended. Several behavioural change techniques and

components were appointed as effective ingredients by participants, while participants

differed in their preference for exercises and other elements of the programme. While the

use of various components has increased the attractiveness for a broad audience, for some

participants it might also have resulted in a low intensity of some of the effective elements.

Another question raised was whether the programme contained sufficient support for all

participants to become more flexible in their goal management and sufficient guidance on

when to apply which goal management strategy, as some participants felt that the duration

of the programme was not sufficient to internalise their newly learned behaviours or

address their problems. These insights can further inform improvement of the programme

and the choice of effective behavioural change techniques and their operationalization in

intervention development.

Inherent limitations of the present study, such as lack of randomization and the absence

of a cost-effectiveness analysis, can be attributed to the changes made to the design of the

study which were required due to the initial small number of applicants. As a result, only

a comparison of the follow-up measurements could occur between the intervention and

reference groups. And although the same inclusion and exclusion criteria were applied to

both groups, they differed with regard to some demographic and disease characteristics,

which might have been less likely if participants were randomly assigned to a condition.

Nevertheless, there is an advantage to having participants in the reference group not placed

on a waiting list or with expectations of joining an intervention after the measurements; the

reference group now reflects a natural course of adaptation. Reasons why people were less

interested than expected are unknown, but may have had to do with the characteristics of

the intervention. Offering the intervention in local community centres, reimbursement for

travel expenses by the health insurance, or providing online modules might reach a larger

group of participants.

Strong features were the considerable differences between the participants in the

intervention in disease and demographic characteristics and, furthermore, that the

programme was available in both city and regional hospitals of various sizes. Nevertheless,

two remarks are worth mentioning with regard to the generalizability of the findings to

other persons with polyarthritis. Firstly, despite wide-ranging recruitment, vast majority of


149


the applicants entered the study through their clinic, and the sample, therefore, might be

less representative for the population of patients that are not under treatment at a clinic.

Secondly, the mean duration of disease was almost 8 years in the intervention group as

compared to 16 years in the reference group, which might suggest that people who are

more recently diagnosed are more willing to participate in an intervention or seek help.

Reaching patients with a relatively short duration of disease is suggested to be beneficial [<

2-8 years; 56,57-60]. Yet, conclusions of this study might be less applicable for people with

longer disease duration.

Other limitations relate to the measures applied. Although established and validated

measures previously applied in other studies of polyarthritis were used, low reliability

of the goal disengagement subscale and HADS-D in the reference group complicated

interpretation of the findings. The few studies that have been done on the responsiveness of

the HADS for changes over time, report it to be moderate [61-63], although it is considered

a valid screening instrument for depression and anxiety in persons with rheumatic diseases

[64,63,65]. Also, the applied inclusion criterion of at least a score of four on the depression

subscale of the HADS and exclusion criterion of ≥ 22 on the HADS (considered indicative of

severe psychological distress) can possibly have caused floor and ceiling effects that have

reduced the changes to detect an effect on the primary outcome measure. Lastly, measured

as “general experienced meaningfulness in life,” the measurement of purpose in life has

its limitations, as it might be difficult to determine progression or regression with this

instrument [8,45].

Conclusion

The goal management program was designed for people with mild depressive symptoms,

with the idea that threats to personal goals caused by arthritis and its symptoms can evoke

psychological distress and lower well-being. Right on Target was not effective in improving

depression and no change was observed in anxiety symptoms, purpose in life, and satisfaction

with participation. The goal management programme seemed to be effective in increasing

flexible goal adjustment and self-efficacy and decreasing tenacious goal pursuit. In addition,

the increase in the ability to adjust goals mediated a significant increase in positive affect

in the group that participated in the programme. In conclusion, the results of this study

provided preliminary evidence for the value for psychological health of an intervention

based on goal management for people with arthritis. Flexible goal adjustment and goal

tenacity are potentially helpful when designing interventions aimed to support people in

coping with threatened goals. Undoubtedly, more research is needed to provide a deeper

understanding of the complex relations between the management of personal goals and

well-being among the chronically ill population [66]. The goal management intervention was

developed with a person-focused perspective and is based on personal preferences, needs

and values with an emphasis on the personal meaning of an illness. The implementation of a


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person-focused intervention in secondary care poses a challenge for those involved, yet the

present study provides a small but promising direction towards greater wellbeing.

Other information

Registration and protocol. The study protocol was registered at www.trialregister.nl, under

number NTR3606, and published [6]. After the trial commenced, substantial changes were

made to the study design that were not described in the publication. Changes are described

briefly in the Methods section of this paper and have been fully listed in the trial register. In

addition to the changes described in the Method section, changes were made to facilitate

data comparison. Firstly, the cost-effectiveness measurements were disregarded as no data

on costs and use of health services were measured in the cohort where the reference group

was drawn from. Secondly, the follow-up of eight months for the intervention group was

brought forward to six months to correspond to the data available in the observational

cohort. Thirdly, a number of questionnaires did not match between the two surveys and,

therefore, were not addressed in the current study.

Ethical approval. Multicentre research ethics committee approval from the Medical Ethics

Review Committee Twente (protocol ID: NL40257.044.12). Local research ethics committee

approval was obtained at all four sites where patients were recruited for the trial.

Acknowledgements

We wish to thank the patients who participated in this study. We thank our patient partners,

Lynn Packwood and Klaas Sikkel, who added the patient perspective to this project.

Many thanks to the nurses involved as trainers; Diana Boerema-Evers, Rianka Hek, Riëtte

Leemreize-Mol, Rudin Peters and Elsbeth Veldhuis. Our gratitude also goes to all nurses and

rheumatologists, including, in particular, the local researchers and the rheumatology hospital

departments of the Gelderse Vallei Ziekenhuis (Ede), Medisch Spectrum Twente (Enschede),

St. Elisabeth Ziekenhuis (Tilburg) and Streekziekenhuis Koningin Beatrix (Winterswijk) for

their support and assistance. Thanks to prof. dr. J.A.M. van der Palen and dr. P. ten Klooster

for statistical advice.


151


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7


7A mixed-methods

process evaluation of

a goal management

intervention for

patients with

polyarthritis

R.Y. Arends

C. Bode

E. Taal


Submitted for publication


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Abstract

Process evaluations of newly developed interventions are necessary to identify effective and

less effective intervention components. First aim of this study was to identify key components

of a psychosocial goal management intervention from the perspective of participants, and

second aim was to evaluate the intervention’s fidelity.

A mixed-methods approach was applied to 24 interviews with participants post-

intervention and 16 audio recordings of random training sessions.

Participants experienced three key components: 1) the content, in which specific exercises

helped to raise awareness and (intention to) change goal management behaviour, 2)

person-focused approach, specifically, the nurse as trainer and personal fit of the approach,

and 3) social mechanisms, including facilitating group processes and interpersonal processes.

Adherence to the protocol by the trainers was high, while differences were found in

the degree to which they were able to apply the intended collaborative approach and

psychological communication skills.

The applied design provided valuable insights into the processes that took place. Both

the effects experienced by participants in relationship to the content, approach and

social mechanisms as well as the strengths and weaknesses found with regard to fidelity

provide insights that can inform the development and implementation of person-focused

interventions.


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A MIXED-METHODS PROCESS EVALUATION OF A GOAL MANAGEMENT INTERVENTION

Introduction

Evaluating interventions in terms of the processes that have taken place has become more

vital for developers and evaluators of complex healthcare interventions [1]. Such evaluations

are necessary because they identify the effective and less effective components, and these

findings can, in turn, inform future theories, intervention designs and methods [2-4] as well

as ascertain the pathways by which an intervention’s key components produce the desired

benefits [5,1,6]. A sound process evaluation also determines under which conditions the

intervention is effective, for whom it is effective, and how it can be optimized [1,2]. Especially

in multicentre trials, where the same intervention may be implemented and received in

different ways, process evaluations can help to distinguish between implementation failure

and failure of the concept or theory [7]. Knowledge of the fidelity of an intervention

is required for understanding its effects or the lack of it. Fidelity represents the quality

and integrity of an intervention as perceived by the developers, and includes whether an

intervention was carried out according to a predefined protocol and in the manner and the

spirit intended [2].

This study evaluated a self-management intervention for people with polyarthritis from

the perspective of the participants and assessed the quality of the programme’s execution.

Polyarthritis includes a variety of disorders associated with autoimmune pathologies that

typically result in the inflammation of five or more joints, for example, rheumatoid arthritis,

ankylosing spondylitis and psoriatic arthritis. Persisting pain, fatigue, disability, deformity,

distress and reduced quality of life can be daily stressors for patients with polyarthritis [8,9].

Interventions that provide patients with the skills and techniques to live with and manage

their disease in daily life are essential, as most of the time people have to manage a chronic

disease outside of the healthcare system [10]. The diverse range of interventions concerning

patients’ management of chronic illness are commonly referred to as self-management

interventions, and they aim to increase patients’ involvement and control in their treatment

and the disease’s subsequent effects on their lives [11].

However, self-management interventions for patients with inflammatory arthritis usually

show limited long-term effects [10,12]. One reason for this might be that current self-

management initiatives are often developed from a problem-oriented point of view, as they

originate from health systems that are organized around treatment and cure of disease. In

contrast, the limitations patients face are not only in the medical domain but also in their

social and psychological domains. Therefore self-management from a medical approach does

not necessarily fit all needs of patients with a chronic disease [13]. Making the patient more

responsible for his or her own care enhances self-efficacy and supports self-management

[14]. According to Lawn and Schoo [15], persons with chronic conditions need (besides

ongoing support) a person-centred approach to foster: a greater focus on self-management

by the individual person, partnerships between patient and health professionals, and


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collaboration between healthcare providers. To stimulate effective self-management, the

focus needs to shift from providing information on symptom management and lifestyle

choices to a more collaborative model, in which patients are proactive in identifying areas

that could be improved for their own self-management [14,16].

One intervention that integrates the polyarthritis patients’ perspective is Right On

Target, a nurse-led group intervention based on goal management theory [17]. This goal-

management intervention can be called holistic, as it aims to match patients’ experiences in

all aspects of their life. Right On Target focuses on how the patient can cope with activities

and life goals that have become threatened or impossible to attain due to arthritis. While

having and striving for personal goals gives direction and meaning to life [18-20], the pursuit

of goals may also produce negative psychological effects when goals become unattainable

or no progress is made towards a desired goal [21,22]. Previous studies linked higher levels of

various goal management competencies to lower levels of mental distress and higher levels

of well-being in chronic disease populations [23-30]. The ability to flexibly use several goal

management competencies is needed to cope with the changing circumstances prompted

by a chronic disease [31]; as living with it is an ongoing process of finding equilibrium in

situations that may constantly change [32].

For this purpose, Right On Target allows participants to learn general applicable goal

management competencies that are not disease specific, but can be applied to various difficult

disease-related situations in daily life in which personal goals are threatened. Underlying the

programme is the belief that participants need a broad behavioural repertoire and increased

self-awareness to make appropriate choices about dealing with threatened personal goals.

The four strategies that receive attention in the intervention are: goal maintenance,

goal adjustment, goal disengagement and goal re-engagement [18,29,33]. These four

strategies were found comprehensive from a patient’s perspective [34]. To developed and

stimulate goal management competencies psychological and behaviour change techniques

mainly rooted in learning theory and social cognition theories, such as the use of problem

identification, goal setting, modelling and the evaluation of behaviour were applied in the

intervention. The assumption that participants are experts of their own personal situation

is reflected in the personal trajectory of the programme (see Method section). The personal

trajectory is intended to improve the fit of the goal management strategy and the situation

of a participant and increase resilience during and after the programme by adapting the

intervention to the needs and social environment of the participants [17].

The relationship between the trainer and the participants is best described as collaborative,

in contrast to patient-expert whereby the trainer knows what is best for the participant

[16,35]. The trainer is mainly responsible for creating a safe atmosphere in which participants

are stimulated to experiment with different goal management strategies for coping with

a threatened goal of personal importance. This role is emphasized during the training of

the trainers and elaborated in the intervention manual. For example, trainers are advised


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to encourage the group to help individual participants to identify problems and raise

awareness. The use of appropriate psychological communication skills plays an essential

role in the creation of a safe atmosphere and supports the above described collaborative

approach [36].

The first aim of this study was to identify key components of the intervention from the

perspective of participants. To answer this question, the elements of the intervention

that were regarded as key components by participants were examined. The focus on key

components was chosen to gain insights into the perceived processes that took place during

participation in the programme and which elements of the programme were seen as

responsible for these processes. There were several reasons for focusing on the perspective

of participants. Firstly, as the intervention is intended to relate to the perspective of arthritis

patients, their perception on the effectiveness of the components is indispensable in order

to identify key components and techniques. Secondly, participants are not passive receivers

of an intervention but interact with it and are influenced by their circumstances, attitudes,

beliefs, social norms and resources [6]. Thirdly, evaluating the needs, wishes and concerns of

the intended users provides key information for broader implementation.

The second aim of this study was to evaluate whether the intervention was executed as

intended, often referred to as the fidelity of an intervention. The focus in the present study

was on the approach and atmosphere the trainers deployed during the group meetings, the

psychological communication skills of the trainers and the adherence to the protocol with

regard to the sequence of information and exercises during the meetings. This focus was

chosen because the specific person-focused character of the intervention is conceptualized

as an essential component of the intervention, with the trainers playing a vital role in its

implementation. In the current study, nurses specialized in rheumatology care were trained

to give the goal management intervention. By placing the intervention in an ambulatory

clinical healthcare setting, we hoped to further develop or strengthen the ongoing patient-

provider partnership that might promote self-management in the participants’ medical care

[37].

Method

A mixed-methods approach was used to guarantee a comprehensive evaluation of the

complexity of the intervention. Our methodology included semi-structured in-depth

interviews with a subset of participants and voice recordings of programme meetings.

Different perspectives were combined to gain an understanding of the processes in the

intervention and to increase validity of the findings [5]. The approach of a mixed-methods

process evaluation is new in research on goal management in chronic disease. Our aims

of deploying multiple data collection methods were to mutually corroborate findings


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(triangulation) and bring together a more comprehensive account of the research aims

(completeness) [38].

Approval for the study was obtained from a medical ethics review committee under number

NL40257.044.12, and written informed consent was obtained from all the participants.

Intervention

Right On Target is a protocol-based psychosocial educational programme for patients with

polyarthritis. Right On Target was delivered in six group meetings (four weekly and two

bi-weekly) in a recent multicentre intervention study. The goal management programme

consisted of six group-based meetings with six to ten participants and individual homework

assignments. Arends et al. [17] structured the intervention as follows. First, participants

became aware of the influence of arthritis on their life (e.g. the valued activities threatened

by arthritis) and the higher goals that were at stake. Subsequently, the participants’

standard behaviour and reaction pattern to deal with such difficulties were examined and

different behavioural options discussed. In the personal trajectory, participants then choose

a threatened activity and were stimulated to try out different behavioural options during

the intervention in order to experience and practice multiple goal management strategies.

The experiences of the personal trajectory were evaluated and discussed during the group

meetings, and participants were encouraged to help and stimulate each other’s new

behaviour. The topics and objectives for each meeting appear in Additional Information 1.

Trainers

Four hospitals were approached for participation and interested nurses who specialized in

rheumatology care were invited to participate. Four female nurses led two or more groups.

The mean age of the nurses was 47.6 years (SD: 10.21, range: 33-56), with mean experience

as a nurse of 25.4 years (SD: 10.41, range: 11-35), and mean experience as specialized

rheumatology nurse of five years (SD: 1, range: 4-6).

None of the nurses had experience as a trainer in psychological programmes. Two had

previous teaching experience. The nurses attended a one-day training prior to the start of the

programme. In the first phase of this training, nurses worked through the entire programme

in the role of participant to experience the techniques employed. Subsequently, the nurses

practiced the trainer role, with other nurses as simulation participants. The nurses received

detailed feedback on their performance from two psychologists. Trainers’ teaching skills and

knowledge concerning intervention techniques and the goal management strategies were

evaluated at the end of the training. The trained nurses were also monitored and supervised

by a psychologist during their execution of the intervention with participants.


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Intervention participants

Inclusion criteria for patients to participate in the goal management programme were

a diagnosis of polyarthritis, age 18 years or over, and a score of four or higher on the

depression subscale of the Hospital Anxiety and Depression Scale (HADS). People with

severe pathological distress (total HADS ≥ 22) were excluded. Exclusion criteria were actual

enrolment in psychotherapeutic treatment and insufficient Dutch language skills. More

details on recruitment strategy and the detailed study design can be found in Arends et

al. [17]. Table 1 shows an overview of the groups, participants, and number of recorded

meetings per site.

Table 1 Overview per site of the number of groups, participants and recorded meetings

Site Groups Participants Recorded meetingsA 6 40 5B 3 17 5C 2 13 3D 2 15 3Total 13 85 16

Interview participants. Two participants per intervention group were interviewed once

the programme ended. Participants were selected on the basis of stratified purposeful

sampling in order to illustrate subgroups of interest [39]. The purpose was to compose a

sample that differed in age, sex, origin (e.g. Dutch or foreign), work status, diagnosis, and

disease duration. Characteristics of the participants can be found in Table 2. To prevent the

overrepresentation of Site A, no participants from Groups A3 and A4 were interviewed.


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Table 2 Demographic and clinical characteristics of participants in the intervention (n = 85) and the interviewed

participants (n = 24)

Intervention participants Interview participantsSex, n (%) Male 24 (28) 6 (25) Female 61 (71.8) 18 (75)Foreign origin unknown 3 (13)Age, mean (SD), range 57.34 (11.63), 23-82 54 (13.77), 24-73Marital status, n (%) Not living with partner 19 (22.4) 7 (29) Living with partner 63 (74.1) 17 (71) Missing 3 (3.5) Educational level a None/Low 27(31.8) 4(17) Middle 40 (47.1) 13 (54) Higher 15 (16.6) 7 (29) Missing 3 (3.5) Work status, n (%) No paid job 55 (64.7) 13 (54) Full-time/part-timeemployment 26(30.6) 11(46) Missing 4 (4.7) Diagnosis, n (%) Rheumatoid arthritis 65 (76.5) 18 (75) Gout and other crystal diseases 2 (2.4) 0 (0) Polymyalgia and Temporal Arteriitis 6 (7.1) 2 (8) Spondylarthropathy 6 (7.1) 3 (13) SLE and other systemic diseases 1 (1.2) 1 (4) Other/non-classifiable 5(5.9) 0(0)Disease duration, mean (SD), range 7.81 (8.30), 0-41 7.78 (9.02), 1-41

a Low: no education, primary school or lower vocational education; Middle: high school and middle vocational education; High: high vocational education and university.

Data collection

Interviews were conducted by the first author (n = 18) and a research assistant (n = 6) and were

held at the preferred location of the participant, either at home, at the research university

or at the hospital. A semi-structured interview scheme was used (see Additional Information

2). The interviews were recorded using a voice recorder and subsequently transcribed

verbatim. Sixteen random meetings of the intervention were audio taped in order to check

for correct delivery of the protocol and other trainer-related aspects regarding the fidelity

of the intervention, such as psychological communication skills.


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Analysis

A thematic analysis of content, driven by the first research aim, was employed for the

interviews, and this analysis facilitated a theory-informed approach in the identification of

important assertions and themes [40]. Analysis started as a top-down process with an initial

code scheme consisting of a priori codes based on the research aim and later combined

with codes emerging from a subset of interviews. Codes were added during encoding until

no new codes emerged during analysis of new data, and then previous interviews were

re-analysed using the complemented code scheme. The interviews were analysed by one

researcher (Author 1) with a subset of 10% analysed by two additional researchers (Authors

2 & 3). During this process, the code scheme was discussed several times by the researchers

(Authors 1, 2 & 3) and adjusted until agreement was reached between them. The interview

data were coded using Atlas.ti 7 qualitative data analysis software.

For the second research aim, recordings of meetings were analysed. The recorded meetings

were intensively listened to and coded by the first author and a research assistant using a

code scheme (a concise version of the code scheme can be found in Additional Information

3). With regard to adherence to the protocol, the following themes were coded: the

coverage of all content, the correct sequence, and the correct explanation by the trainer. For

the intended atmosphere, both interactions between participants and between trainer and

participants were coded, as well as mutual support provided by participants, the instructions

and structure monitoring provided by trainers, and the degree to which trainers emphasized

collaboration with participants. Several psychological communication skills were seen as

relevant for the creation of a safe atmosphere and supportive of a collaborative atmosphere

[36,41]. Codes for psychological communication skills of the trainers included counselling

skills (e.g. showing understanding, open-ended questions and small encouragements),

dividing attention between all participants, attention given to the needs of the participants,

and response to subjects beyond the scope of the training.

Results

First we discuss the results that correspond to the first research aim concerning the key

components of the intervention as experienced by participants. Then the results of the

second aim with regard to the fidelity are provided. Regarding subsequent testimonies, A

to D indicate the four sites and the abbreviations M1 to M6 indicate a particular meeting.

P followed by a number indicates a specific participant, followed by their sex, age, and the

last letters indicate his or her diagnosis. Disease diagnoses were abbreviated as follows;

rheumatoid arthritis (RA), spondylarthropathy (SA), polymyalgia (Po), and arthritis psoriatica

(AP).


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Key components as perceived by participants

Three key components arose from the interviews: content, the person-focused approach and

social mechanisms. (Table 3 provides an overview). These key components include multiple

topics, which are discussed in detail below. (Topics are denoted in italics.)

Table 3 The participants’ experience of key components of a goal management programme: key components

and related topics, facilitators and processes

Key component Topics Facilitators / ProcessesContent of the programme Raised awareness of: •Writing exercises •Ownbehaviour •Exercises involving role models •Possibilitiesandlimitations •Mental simulation caused by arthritis •Acceptingarthritis Change in goal management behaviour: •Personal trajectory •Learningandpracticing •Graphic figures depicting four alternative strategies goal management strategies •Statingone’sownlimitationsand boundaries Person-focused approach Nurse as trainer Personal fit of the approach Social mechanisms Facilitating group processes •Peer support •Bonding Interpersonal processes •Social comparison •Modelling

Note. Key components are composed of topics (in italics).

The content

The first key component dealt with the content of the programme. Two major topics that

related to this key component were: raised awareness and change in goal management

behaviour. Raised awareness was perceived in several areas and linked to writing exercises,

exercises that involved role models and the technique of mental simulation. Change in goal

management behavioural was constituted by learning and practicing alternative strategies

than one’s own ‘preferred’ approach and stating one’s own limitations and boundaries.

Elements linked to change in goal management behaviour by participants were the

personal trajectory and the graphic figures depicting the four goal management strategies.

Some participants wished for ongoing support after the intervention, to sustain or achieve

behavioural change. Each participant had his or her own preferences for elements of the

training and specific exercises.


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Raised awareness. Many participants indicated that they were influenced by the training

to become more aware and reflective of their behaviour, including awareness and reflections

on the possibilities and limitations caused by arthritis, and acknowledging and accepting

arthritis. “Now with this [training], it’s not so bad at all that there is something you can’t do.

Sure, it’s not nice and even feels like a farewell, but still you can also try to do something else

instead” (P3, A, female, 41y, RA). Participants mentioned the programme had increased their

acceptance of arthritis as well as quality of life and that they learned specific competencies

and tools for dealing with arthritis. “The course aims to give our disease a place in our lives,

along with tools that will help us to do that” (P5, A, male, 57y, RA). Some participants came

closer to accepting their arthritis and planned to continue working in this way, despite the

challenges.

[Awareness of alternative ways to manage personal goals] helps me now, you know.

Sometimes I wonder why I didn’t think of it before, for it does make life easier. On the

other hand, I can take on an attitude like “this is the way I am” and “this is the way I

want to be.” So, one moment it helps and the other moment I put it aside. That’s my

stubbornness again. Yet it does help. It helps, because you have to deal with it in a

conscious way. (P21, A, female, 38y, AP)

With regard to personal goals, becoming aware of one’s own higher level goals and new

and alternative behavioural options emerged.

[The course] also provided me with real insight that allowed me to look at goals in a

different way. The [goal hierarchy] pyramid was particularly useful for this. For indeed, it

can be one’s goal to do sports, but not in the way I first looked at it: “It has to be hockey,

it has to be tennis, it has to be this.” I can no longer do such things and have to let go of

them… For me, it is not about holding a hockey stick or a tennis racket, but about being

with other people. That is the insight [the course] gave me. (P24, A, female 36y, RA)

Participants often intended to change their behaviour (see also the following topic) after

gaining more awareness.

I now stay alert to the fact that I no longer want to always just move forward. I now very

deliberately think: that is what I am still able to do, and that is what I am going to aim

at. (P3, A, female, 41y, RA)

Participants considered several exercises as helpful for raising their awareness; mostly the

writing exercises, exercises involving role models and the technique of mental simulation.

For example, participants stated that writing down limitations caused by arthritis and the

accompanying emotions was confronting but very useful. The goal hierarchy pyramid (used

for linking threatened activities to associated higher goals) was another example of a

writing exercise that participants mentioned as helpful for achieving awareness of personal

goals. “Those pyramids, so to speak, with the aid of which you set goals – I think they are

really important” (P8, B, female, 24y, RA). Other frequently mentioned helpful exercises

were related to role models, including exercises that used narratives of fictitious patients.


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I found [the stories] very clear for myself. Sometimes I completely identified with them.

I found them very good, indeed, because there I read about the restrictions people

actually live with. Above all, I found it important to see how different people deal with

such limitations and what effect this has on family members, friends and acquaintances.

(P18, D, female, 65y, RA)

Participants evaluated the technique of mental simulation in a variety of ways. This

technique was applied in the training to stimulate people to apply a new, until then not

preferred, goal management strategy. The following three quotes show the disunity among

participants, who evaluated the exercise as either personally ineffective, challenging but

helpful, or self-revealing.

That whole simulation thing – I’m perhaps a little too down-to-earth and pragmatic for

it to work. (P5, A, male, 57y, RA)

In itself I did find it practical, which I had not expected. I thought it was going to be

really woolly, but, in itself, it was fine. It made you think about things. (P8, B, female,

24y, RA)

The exercise that made us listen to the [trainer] with our eyes closed worked very well.

Yes, I could see right before me all that she said. And her tone was … yes, it was very

good. (P13, D, female, 70y, SA)

Change in goal management behaviour. Participants talked about a change in goal

management behaviour as one of the major effects of the training. Participants saw

becoming more flexible in their behaviour and learning how to use other goal management

strategies as aims of the intervention.

When the moment is there, try to step out of your beaten tracks… There are certain

things one is used to doing, and when they are no longer possible, you start doing

something else… And now, all those different stories, like the little figures, point to

different strategies and that makes one think. Try to solve the issue in a different way.

(P12, C, female, 60y, RA)

Also within this topic, increasing self-knowledge with regard to personal goals was mentioned.

I think the course intended, in particular, to show people that they can make choices

for themselves, to help them make as smart a choice as possible, instead of continuing

the patterns in which they were stuck, and then to see if together they can find new

possibilities. (P20, B, female, 55y, RA)

One part of the programme that participants felt as key for changing goal management

behaviour was the individual’s personal trajectory, which among other exercises included a

detailed action plan.

The aim was to get people moving, specifically to see whether – with the disease one

has – is it possible to develop an initiative and not discard it and push it away. To just do

it! With a plan of action, you really have to get going. (P14, D, male, 55y, RA)

With regard to the personal trajectory, participants had to choose a threatened activity,


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execute a preferred strategy to deal with the threatened activity and, subsequently, try out

an alternative strategy. “It feels like you quickly choose the strategy that suits you best.

And then, when you apply a different strategy, you think, Darn, this works better than

the [strategy] I would have chosen myself!” (P11, C, female, 49y, AP). Purposeful behaviour

was new for some participants. For others trying out alternative ways of goal management

offered new insights and produced the greatest changes.

What I hear others say makes me say to myself, “Don’t keep droning on like that! Hang

in there and don’t immediately say you can’t do it!” That is what I learned from it. (P13,

D, female, 70y, SA)

The last two times I had to carry out those tasks – really setting myself a target and first

following the strategy that I always choose, but then deciding on a different strategy

and finding out: “Hey, this actually works a lot better.” (P11, C, female, 49y, AP)

In particular, participants noted one behavioural change that involved expressing and/or

setting one’s own boundaries and limitations. Some participants used the programme to

start discussing their arthritis-related issues at the workplace or within the family.

For me it was about sooner saying “no.” I am the kind of person that simply says “yes”

to everything. I have learned now to also think about myself. And that is really very

pleasant, especially for someone who suffers from arthritis, a disease that no one is

aware of … To bring this forward in one’s family, now that the course is over – I realize

that not everyone is always thinking of doing that. But now one hesitates less to say, “I

am sorry, but I am having a bad day today” and take a break … Just as it is easier now to

ask someone, “Would you mind giving me a hand?” (P22, A, female, 64y, RA)

After participating in the program, people intended to maintain their new goal management

behaviour, mainly supported by their increased awareness of alternative behavioural options

to manage personal goals and the benefits of using such options. The graphic figure cards

were specifically mentioned as one practical tool used in the programme which helped in

sustaining behavioural change. At the end of the training, participants received small cards

with graphic figures that depicted the four goal management strategies covered in the

programme. These “figures” were often mentioned as a useful and easy way to refer to the

four goal management strategies in the future.

When I am busy with something, I think I will indeed make use of those [figures] in the

future. At moments that I believe something is not going right or think, “What am I

doing?” – at such moments I think I will indeed take those figures. (P18, D, female, 65y,

RA)

Two participants did not feel confident enough in their capabilities to perpetuate any new

behaviour and felt that they needed someone who could act as a personal supervisor or coach.

Furthermore, three participants felt that the duration of the programme was not sufficient

to address their problems or to internalize their newly learned behaviours. According to

these participants, one or more booster meetings would be sufficient to address this matter.


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Maybe [we could meet] again in three months and then check: Is he now able to do

it by himself? Are these ladies now able to do it by themselves, sometimes going out

together for a cup of coffee or for a walk? (P24, A, female, 36y, RA)

The personfocused approach

Implicit in the programme was the belief that, while participants can benefit from learning

general applicable goal management competencies and increase their self-awareness to

make appropriate choices, they know best how to manage their own situation. This belief

originated from a person-focused approach. The second key component related to this

approach and its operationalisation in the programme included: a) the nurse in the role

as trainer as experienced and appreciated by participants, and b) the degree to which the

personfocused approach fitted the participants. Many participants assessed these topics

very positively and as being a major value for the programme. Some participants were more

critical, stating that the person-focused approach did not fit them personally and, therefore,

had less impact. One participant stated that he would have preferred receiving other types

of information, such as dietary guidelines and how to manage physical pain, rather than

how to change his behaviour.

Nurse as trainer. In general, the participants that were interviewed were very positive

about the deployment of specialized rheumatology nurses as trainers. Some participants

found it convenient that their trainer was a nurse, and some had previously been in

consultation with the nurse.

Also with the help of [the trainer], who can offer the necessary support and motivation,

who can sometimes help you get a grip on situations in which you get stranded,

financially as well as physically. This may not be dealt with in depth during the course,

but at least it is clear where you can turn to for further support (P14, D, male, 55y, RA).

Some participants had difficulties understanding parts of the training. One of the

interviewees reported that her trainer did not sufficiently master the content of the training

to make everything understandable for all participants.

A lot of people did not understand that pyramid … She [the trainer] actually had some

trouble taking advantage of it. The best thing really was to read it carefully oneself. But

still, many took it in a different way. (P23, A, female, 46y, RA)

Although some participants initially had negative comments about their trainer, they

subsequently showed a great deal of understanding and defended their trainer. For example,

some participants defended their trainer by saying that she had given the programme for

the first time or that she had to follow a schedule. In general, however, the participants felt

that their trainer gave very good explanations. Other positive points mentioned were that

the trainer was a good listener, empathic and offered personal attention, for example:

And if one out of five did not understand it, she [the trainer] tried to explain it in a

different way. It all really went very well. (P13, D, female, 70y, SA)


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But [the trainer] is just a wonderful, wonderful woman. She really does a great job. Yes,

she did really well. Calm, with a laugh, really – and that is how it should be. (P22, A,

female, 64y, RA)

Personal fit of the personfocused approach. As stated above, the person-focused approach

was at the heart of the programme. This implies that the content of the programme focused

on becoming aware of personal goals and practicing several goal management strategies in

contrast to a disease-focused approach. The majority of participants evaluated the approach

positively and reported a positive influence as a result of the training. There were also

signals that the training did not meet the expectations of all participants. For instance,

nine participants had expected to passively receive practical and medical information

during the training. They apparently were comfortable relying on their health providers

and preferred to give responsibility to their rheumatologist, the trainer of the programme

or the developers of the training. It became evident that most of them were satisfied with

the content and the form of the training afterwards, but one would still have preferred to

receive clear instructions (e.g. do’s and don’ts) instead of working with personal goals and

priorities.

I have learned certain things, but only in a general sense; nothing was specifically

tailored for arthritis. I found that somewhat disappointing … I would have liked to have

certain handles that enable me to better deal with it … I expected to be told specific

things to do and not to do with regard to this disease … Do I dress warmly or rather not?

Should I go biking or rather avoid movement? (P6, B, male, 62y, Po)

The social mechanisms

The third key component that arose from the interviews concerned the social processes that

took place in the groups, including: facilitating group processes and interpersonal processes.

Facilitating group processes were perceived to increase the effect of the intervention;

including peer support and bonding. Also named were several interpersonal processes that

took place during participation in the intervention, including: social comparison with other

participants and modelling.

Facilitating group processes. All participants perceived the contact with peer participants as

of great value. Tips and tricks to deal with arthritis were exchanged in the group. The group

also provided help to its members for dealing with difficult exercises and encouragement to

perform alternative or new behaviours.

“And when you are part of a group, you really have to show results: then there is that

threshold you are pushed over in order to develop an initiative and bring it to an end”

(P14, D, male, 55y, RA).

Most participants described the group as a safe place to open up personally and experienced

a strong mutual bond. Compassion and support were provided within the group and

participants understood each other’s situation as they could often identify with each other.


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“There you could also just cry, which was seen as normal. There was no judgment about it.

There we actually heard others say, ‘Oh, we too recognize [what you are going through].’

It really felt like being recognized” (P24, A, female, 36y, RA). Identifying with and receiving

compassion and support from the other group members was an essential premise for sharing

personal experiences, as the following quote illustrates.

In the beginning, [the group was] very scary, because I am really not a person who

speaks well in groups, and my attitude is like: just let me be. But as we progressed, it

went better, and you actually allowed yourself to become more open. (P3, A, female,

41y, RA)

In line with this, we found a reluctance to share personal experiences in one group due to

the inconsistent attendance of participants.

Because the group was small and we only saw each other six times, usually with a few

new participants, this made me somewhat cautious. I know it can work, but such a

degree of familiarity and trust is not easily reached. (P20, B, female, 55y, RA)

Interpersonal processes. Social comparison was an important topic on a personal level.

Most participants could identify with some of the others and valued the experienced

heterogeneous composition of the group. A minority of the participants could not identify

with the others, as they perceived differences between themselves and the majority of the

group with regard to their phase of life, experience or other limitations. For some of these

people, it was difficult to fully participate.

I still hoped, and I actually still hope now, that I will overcome [the rheumatism], while

the whole [programme] was focused on the fact that one has arthritis and has to accept

it and learn how to handle it. In that respect, I was an exception. I also think that I was

the one who had the fewest physical problems. (P6, B, male, 62y, Po)

However, most participants highly valued their group and its heterogeneity.

“Of course, I cannot compare myself with their situation, because they all have a job or

do volunteer work … But it’s really nice that the group is so mixed, because you can see

what the future might bring” (P8, B, female, 24y, RA).

Participants compared themselves with others regarding severity of arthritis, extent of

limitations and level of adaptation. This could be confronting for the person who felt he or

she was the worse for the comparison. The following testimony shows that a participant also

tried to see the positive side of this topic.

You also become aware of your ranking in, let’s say, the severity of the arthritis, which was

a picture you did not see for yourself. You usually see [your arthritis] more optimistically

than it perhaps is in reality … It is good for oneself to know how severe it really is or how

much discomfort one has in comparison to someone else… You then recognize a lot of

things… which is more like a reassurance. (P15, C, male, 60y, SA)

On the other hand, participants with the severest arthritis were often seen as the most

experienced by other participants, and some functioned as role models.


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There are also people who have a much worse degree [of arthritis] than you, who have

been ill all their lives and are bound to a wheelchair. They have an advantage of a kind,

since they know how it all is. (P14, D, male, 55y, RA)

Fidelity

The second research question covered the evaluation of the execution of the intervention,

and the trainer is central to this discussion. The question addressed whether the trainers

followed the protocol, to what extent they were able to create the intended atmosphere

during the meetings, whether they followed the collaborative approach, and their skills

in psychological communication. Several psychological communication skills were seen as

relevant for creating a safe atmosphere and supporting a collaborative atmosphere. The

atmosphere and trainer skills are presented together, as they mutually affected each other,

and were often linked in the recordings.

Overall, the meetings recordings indicated that the adherence to the protocol was very high

and all the different parts were covered in the meetings as scheduled. It seemed the trainers

were able to create an atmosphere in which participants felt safe to talk about personal

experiences and to attempt new behaviours. Generally, participants appeared to listen to

each other during meetings and share different opinions. The recordings of meetings also

revealed that the trainers differed in the degree to which they were able to abstain from

offering suggestions for participants’ behaviour (i.e. the expert role). Some trainers seemed

to have difficulties with assuming a coaching role, which emphasized the participants’ own

responsibility for managing their arthritis. In agreement with this observation, differences

with regard to the psychological communication skills of the trainers were also found.

Adherence to the protocol

All trainers were able to give direct instructions and maintain the meetings’ structure. In

general the four trainers followed the manual during the meetings, and the content of the

manual was presented in the correct sequence. Once a trainer unintentionally skipped a part

of a meeting’s content, but soon realized this oversight and covered the missed part later in

the meeting. In general, the exercises were explained well, and some trainers provided extra

examples to help participants understand the material.

Personfocused approach, atmosphere and trainer skills

The trainers seemed to approach the participants with respect, interest, patience and

understanding. The trainers praised participants for their efforts and appeared interested in

the personal experiences of the participants, as the following fragment shows.

Trainer: “One thing I would still like to know is what it meant to you [not to reach the

goal you had established for yourself].” Participant: “Well, I have mixed feelings about

it. On the one hand… [elaborates on those feelings.]”


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Trainers appeared to give participants the feeling that they were taken seriously by expressing

understanding for the participants’ situation, giving adequate time to everyone to relate

their personal experiences, and offering encouragement. In the following fragment, the

trainer showed interest and understanding by using reflective listening to stimulate the

participant to elaborate on her feelings and experience.

[Participant talks about experiencing increasing pressure at work, and then becomes

emotional.] Trainer: “I see that it really affects you a lot. You find it quite annoying.”

[Participant elaborates more about what disturbs her most about the situation.]

All four trainers appeared to divide their attention and interest amongst the participants

and continually try to involve all of them. Nevertheless, recordings of meetings showed

considerable differences between the levels of the four trainers with regard to psychological

communication skills. Two of the trainers had seemed to have difficulties asking open-

ended questions and leaving room for participants to talk, what appeared to result in

participants being less motivated to disclose themselves. These conversations became

unidirectional through the use of many closed questions. The use of closed questions

and giving advice (or filling in for participants) undermined the collaborative approach.

For example, during an activity, one trainer seemed to impose her own opinion on a

participant who was hesitating to complete a personal response to an exercise question.

This trainer did not ask open questions, but instead said things like: “I suggest you do

this” and “I think that this for you is [the activity you need to fill in the exercise with].” In

response, the participant was observed as occasionally interjecting: “Yes, yes.” Once the

participant agreed with her, the trainer changed the topic. In contrast, the trainer in the

conversation below stimulated a participant to formulate her own solution by asking an

open-ended question.

[The threatened goal of a participant has been discussed extensively and the

problem is made more concrete. Multiple solutions are put forward by the group and

trainer.] Participant: “I’m going to put it to work.” Trainer: “How can we elaborate on

that? (…) When you say, ‘I’m going to work on the threatened activity?’” Participant:

“I…uh, I actually know that I can call the President and say I want to talk with him.”

One of the trainers sounded occasionally impatient and interrupted a participant to impose

her own answer. Recordings revealed that some trainers possibly had difficulties with

silences, for example, when participants did not respond immediately to a question. In order

to avoid silences, often a closed question was asked successively probably in order to quickly

receive a response. For example, one trainer actually answered her own question that she

posed to a participant, preventing the participant the time needed to discover her own

solution:

Trainer: “And have you considered a different arrangement for walks every week?”

Participant [hesitantly]: “Yes, I have indeed…” Trainer [interrupts]: “Yes, as it was (walks)

for three days in a row, so probably it is better to change the arrangement?”


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In contrast, two of the four trainers appeared to master the psychological communication

skills (e.g. asking open-ended questions, continual questioning/supplementary questions,

summarizing, giving time/allowing for silence). Moreover, these trainers also encouraged

participants to try new behaviours to realize set goals. The following fragment from an initial

meeting shows how the trainer, by asking open-ended questions, was able to stimulate a

participant to open up.

Trainer: “What do you (Participant X) think of the way in which they deal with things

in the story?” Participant X: “I recognize a lot in it. I too have the greatest difficulty in

talking about it with others. (…) In my family, I sometimes feel like they do not want

to hear it, about me being ill. (…) That they do not like me to talk about it sometimes

– that is what I feel.”

Discussion

The aim of this study was to evaluate a goal management programme from the perspective

of the participants and to assess the fidelity of the intervention. With regard to the first

research aim, three key components for the effect of the programme from the perspective of

participants became evident: the content of the programme, the person-focused approach

and the social mechanisms of the programme. Firstly, the component content included

1) writing exercises, role models, and mental simulation that led to raised awareness of

one’s own behaviour, personal goals, and possibilities and limitations caused by arthritis;

and 2) the personal trajectory and graphic figures that led to a (intention to) change in

goal management behaviour, including using new goal management strategies and clearly

stating one’s own boundaries and limitations. Secondly, the component personfocused

approach covered the role of nurses as trainers and the personal fit of the person-focused

approach. Thirdly, the component social mechanisms included 1) facilitating group processes,

including peer support and bonding; and 2) the interpersonal processes, including social

comparison and modelling. With regard to the second research question about the fidelity

of the intervention, adherence to the protocol by the trainers was high. The trainers differed

in the degree to which they were able to fully apply the intended coaching and supporting

approach to participants. Differences were also found with regard to the psychological

communication skills of the trainers.

The goal management programme was developed to help participants to become aware

of their own goals and preferred reactions to goal blockage, followed by learning other

goal management strategies and practicing these new strategies during the personal

trajectory [17]. In fact, the effective components of the programme as experienced by the

participants in this study correspond to these programme aims. Generally, all components of

the programme and specific exercises were highly valued, although participants’ individual


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preferences differed considerably. This finding advocates the use of various components

(e.g. use of role models, writing exercises, and a combination of group training and an

individual trajectory) to create an intervention that is attractive for a broad audience. The

use of several behaviour change techniques is also supported by recent studies showing

amplifying effects of combinations of behaviour change techniques [42,43].

Some of our findings were confirmed in previous studies, for example, the sharing of

experiences in group interventions and the stimulating effect of the group can make

participants feel understood, increase self-efficacy and foster changes in self-management

behaviour [44,45].The majority of the interviewees in the present study spoke very positively

about their group experience. The diversity of participants in disease duration, age, type of

arthritis, and level of adaptation also promoted upwards and downwards social comparison

[46,47].

With regard to the second key component, the person-focused approach, most participants

were satisfied with the deployment of nurses as trainers. Strengthening the partnership

between patient and health professional was one of the main reasons for this approach.

Participants’ experiences confirmed this intent, as the contact with the nurse during the

programme was assessed as convenient and said to lower the threshold for subsequent

consultations. Furthermore, the results indicated that not all participants were prepared for

the intended collaborative approach. A substantial number of the interviewed participants

had expected to receive practical and medical information although the recruitment

information highlighted the active role of participants. In hindsight, this misunderstanding

might have been anticipated for a number of reasons. Firstly, the structural features of

the healthcare organizations involved were not necessarily prepared or equipped for

self-management and person-centred care. Secondly, there was no specific focus on self-

management support in the clinics where the intervention was given, nor any recent

history of other programmes with similar aims. Underneath this is the culture in which

healthcare providers are seen as experts, while patients are not addressed as experts in

self-management. Although the majority of participants was satisfied with the content of

the programme and its emphasis on personal responsibility afterwards, a few would have

preferred more directive support of care providers. This latter theme can be related to the

passivity of participants or a need for medical paternalism as found in other studies [48].

Some participants seemed to lack the self-confidence that they needed to rely on their own

judgment in daily life self-management. In line with the above mentioned culture, one

participant directly indicated a preference for medical paternalism, similar to the study of

Rogers et al. [49]. These findings highlight that matching the need, stage of change and

experience with self-management of an individual patient is necessary in order to add value

for the individual [15,50].

As the current intervention is aimed at alleviating the impact a chronic disease can have

on the medical, social and psychological domains from the patient’s perspective, it is also


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a relatively new approach for healthcare providers. With regard to the second aim of the

study, which was the fidelity of the intervention, the discrepancy between the traditional

medical approach and the collaborative approach of the intervention became visible. The

results indicate that healthcare providers might need more training and assistance to fully

enable the intended collaborative approach. The recordings of the meetings suggested that

some trainers found it difficult not to be suggestive and directive. This is in line with previous

research that showed that sometimes, unintentionally, nurses’ language and efforts to be

helpful and responsive to patients can impair patients’ independence and engagement [51].

Substantial efforts were made in the supervision during the course of the study to support the

trainers to adopt a non-directive attitude and improve their psychological communication

skills. In retrospect, in addition to specific intervention-related knowledge and skills, the

initial training for the nurses should have included general psychological communication

skills, such as asking open-ended questions and using silences.

Both trainers and participants might need more time to adjust to this different approach

and more support to understand its implications for their roles and responsibilities in the

management of a chronic disease. Moreover, before a care system for chronic conditions can

truly become person-centred, effective, and efficient, the patient, health professionals and

health service all have to assume new roles [16,52].

The strength of this study is its use of a mixed-methods design with information from

the various sources, enabling the three functions of triangulation mentioned by Treharne

and Riggs [53]: exploring convergences, complementarities and dissonances. The meeting

recordings proved useful in revealing dissonant information that was not found in the

interviews. In addition, data was available from all sites, adding to the validity of findings

and the quality of answers to the research aims.

This study has clear implications both for the improvement of the current intervention

as well as for developers of self-management programmes. Firstly, the study has provided

insights into the components that participants consider key and the ingredients of the

intervention that were supportive for these key components. These insights can further

inform intervention development and the application of effective behaviour change

techniques and their operationalization [3]. Also, it has become clear that deploying nurses

for this type of training requires extended training and support in self-management and

a person-centred approach before the nurses are fully adept in leading groups of patients

[54,51].

Furthermore, this analysis provides insight into experiences of participants with regard

to group processes. The participants of Right On Target evaluated the interactive group

meetings as a highly effective key component. Several processes that can occur in groups were

considered important, which can inform developers and facilitators of similar interventions.

Some participants foresaw difficulties in sustaining the behavioural changes achieved in

the training. Barlow et al. [44] suggest a buddy system for enhancing the maintenance of


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behavioural changes post-intervention, which might be a feasible and accessible addition

to this type of intervention. Such additions could be particularly useful for interventions

aimed at strengthening empowerment and self-reliance of patients with a chronic disease,

as patients’ daily challenges mostly occur outside of the healthcare system.

Some limitations of this study have to be discussed in addition to its previously mentioned

strengths. Firstly, only participants who attended at least four meetings were interviewed.

This raises the potential for sampling bias due to potentially different experiences and

views of non-completers. Therefore, future research might also focus on non-completers

and explore reasons for their dropping out. Secondly, the choice of the mixed-methods

design required working with clearly defined research aims; therefore, in-depth analysis

of emerging themes outside the research aims was not appropriate. Thirdly, although

participants and trainers evaluated the goal management training as effective and useful,

a study on the effect should prove this. The current analysis of key components, facilitators

and hindrances to the intervention would help the interpretation of future findings on the

effect of the intervention.

A few previous comparable studies provided useful information on the patient perspective

[44,55]. The present study has added the use of mixed-methods. Little has been written

about how to design and conduct a process evaluation [6], therefore, despite its limitations,

the current study can be seen as an example for multi-method based process evaluations.

Conclusions

This study from a patient-perspective evaluated a holistic goal management intervention

intended to support people with polyarthritis to cope with their disease and its

consequences. One methodological implication of this study is that it showed how data

collected with multiple sources enables triangulation which, in turn, provides value when

evaluating intervention processes. In addition, participants identified key components of

the intervention’s design and content that can inform future intervention development. Our

findings showed that the content, the person-focused approach and the social mechanisms

were seen as key components of the programme by participants. The trainers had a vital role

in facilitating the open and safe atmosphere that helped participants to share experiences

and try out new behaviours.

Self-management is an ongoing process in which healthcare providers are not consistently

involved. Therefore, patients should be confident enough to rely on their own judgment and

need to learn the necessary skills to do so. The goal management programme is intended to

stimulate self-reliance and empowerment of participants to improve their adaptation and

well-being. This study showed that both participants and health professionals are not always

fully prepared for nor at ease with these new roles. This observation might be applicable

for all patients with chronic conditions, in the same way that the principles underlying the

goal management intervention are generally applicable for coping with a chronic disease.


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As patients are confronted with the disease for the rest of their lives, they need to be able to

cope with the consequences and not rely on health professionals for all their daily decisions.

In that light, our work shows that while the new role as expert can be challenging, most

participants were ready for it and just needed some guidance, tools and support.

Acknowledgements

The authors are very grateful to all the participants and trainers in this study. Our gratitude

also goes to all nurses and rheumatologists, including, in particular, the local researchers

and the rheumatology hospital departments of Gelderse Vallei Ziekenhuis (Ede), Medisch

Spectrum Twente (Enschede), St. Elisabeth Ziekenhuis (Tilburg) and Streekziekenhuis

Koningin Beatrix (Winterswijk) for their support and assistance. We also thank psychology

students Hannah Kling, Jana Petermann and Marleen Perdok for their enthusiastic efforts

and Pim Valentijn for his useful comments. This work was financially supported by the

Stichting Reumaonderzoek Twente, a foundation for research in rheumatology.


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empowerment. J Adv Nurs 70 (2):383-394. doi:10.1111/jan.12203



53 Treharne GJ, Riggs DW (eds) (2014) Ensuring Quality in Qualitative Research. Qualitative research in

clinical and health psychology. Palgrave Macmillan, London

54 Lake AJ, Staiger PK (2010) Seeking the views of health professionals on translating chronic disease

self-management models into practice. Patient Educ Couns 79 (1):62-68

55 Dures E, Kitchen K, Almeida C, Ambler N, Cliss A, Hammond A, Knops B, Morris M, Swinkels A,

Hewlett S (2012) “They didn’t tell us, they made us work it out ourselves”: Patient perspectives of

a cognitive-behavioral program for rheumatoid arthritis fatigue. Arthritis Care Res 64 (4):494-501.

doi:10.1002/acr.21562

56 Petermann J (2014) Een kwalitatief onderzoek naar afzonderlijke groepsbijeenkomsten van de

cursus ‘Doelbewust!’. Graduate, University Twente, Enschede


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Additional information 1 Topics and objectives of the goal management programme per meeting

Meeting Topic The meeting’s main objectives1 Arthritis in daily life Become aware of the influence of polyarthritis in the different domains of life. 2 Important personal goals Link activities that are threatened by polyarthritis with the associated higher goals. Distinguish between lower order and higher order goals. Discuss the four goal management strategies and their pros and cons and accompanying emotions. 3 Dealing with goals Formulate the first threatened activity for the personal trajectory. Explore the feasibility of goal management strategies for resolving the threatened activity.4 Emotions & Action plan Design action plan for the personal trajectory. Anticipate resistance for change from personal self and social environment.5 Alternative goal Evaluate action plan and the goal management strategy used. Choose management strategy & new activity for personal trajectory and practice alternative goal management Evaluation strategy to solve problems with the particular activity.6 Looking back and ahead Evaluate action plan and used goal management strategies. Consolidate learned skills and competencies. Evaluate progress during programme.

Note. Adapted from Arends et al. [17].

Additional information 2 Interview Scheme

General questions 1 Did the programme meet your expectations?2 What was or were the reason(s) for your participation? 3 Would you have applied for the programme if you had known about its specific content? Why or why not?4 How do you assess the programme’s delivery in a group?Learning objectives 5 According to you, what was the aim of the programme?6 According to you, what were the most important components of the programme?Methodology 7 Whatdidyouthinkofthesetupoftheprogramme?(E.g.duration,numberofmeetings,group/trainer,etc.)8 What did you think of the exercises used in the programme?Effectiveness 9 Are there parts of the programme that you did not like very much?10 Were there other things (apart from the contents of the workbook) that you did not like very much in the programme?11 Was the programme helpful for you? How?12 Are there specific parts or exercises that were helpful to you?13 Are there any exercises or parts that you expect to be helpful to you in the future?


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Additional information 3 Code scheme for recorded meetings

Question Sub question Topic Code2a.i Trainer Approach and interactions between respectful* – disrespectfulrole atmosphere participants patient* – impatient interested* – uninterested make fun – serious frank – restrained interactions between trainer respectful* – disrespectful and participants patient* – impatient interested* – uninterested frank – restrained calm* understanding* suggestive mutual support participants not present motivating each other* appreciation* reassuring* share tips* instructions and structure not at all monitoring by trainers direct instructions compliance to the schedule* address private conversations during the break* trainers emphasizing not at all collaboration with inviting input of participants* participants not authoritarian or dominant*2a.ii Trainer Psychological communication skills showing understanding*role communication summarizing* skills small encouragements* allowing and using silence* continualquestioning/supplementaryquestions* open-ended questions* explaining approach and components of training* correcting* stimulating new behaviours* dividing attention between pay attention to everyone* participants let everyone tell story* let everyone tell experiences, homework, etc.* invite more quiet or shy participants* attention given to needs of not at all participants focus on one participant refer irrelevant questions to the break* ignores the need


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Additional information 3 cont’d

response to away-from-the- ignores the question subject questions answers the question shows understanding and explains purpose of programme2b.Adherence coverageofallcontent yes/no,withthemanualasaguidelinetoprotocol correctsequence yes/no,withthemanualasguideline correctexplanation yes/no,dividedinexplanationofexercisesand questions from participants

Notes: The desired behaviours and skills are indicated by an asterisk (*). Where no preference is specifi ed, the behaviour of the trainer should be an appropriate mix. However, clearly the correct application of behaviour and skills depends on the situation and must be assessed in context. A full version of the coding scheme can be found in Petermann [56]. Sources: Lang and Van der Molen [36]; Miller and Rollnick [41]. 8


8Summary and discussion



189

SUMMARY AND DISCUSSION

Introduction

This thesis focused on the role that goal-based coping plays for the psychological adaptation

of people with arthritis. People with polyarthritis experience elevated levels of distress and

lower levels of wellbeing compared with the general population [1-3]. These results have

a negative effect on disease symptoms and treatment adherence which influences people’s

quality of life [4-6]. Effective use of goal-based coping is considered to increase adaptation

to a chronic disease and lead to a higher level of psychological health [7-10]. In this thesis,

goal-based coping was studied in its role as a facilitator of adjustment and as a starting

point for the support of persons with arthritis. This thesis was divided into two parts to

address the following research questions:

Part I: What is the relationship between goal management and psychological adaptation

to arthritis?

Part II: What is the effect of a goal management programme on the psychological health

of people with arthritis and mild depressive symptoms?

In Part I, the relationship between four goal management strategies and five outcomes of

psychological health were explored and a domain-specific measurement instrument for goal

management was presented. In Part II, the development and effect of a goal management

programme for persons with arthritis and mild depressive symptoms was discussed. Also,

key components of the programme from the participants’ perspective and its fidelity were

evaluated. In this general discussion, the main findings with regard to the research questions

are summarized. Subsequently, the theoretical and methodological considerations of this

thesis are explored and finally, recommendations for research and practice are given.

Main findings

Part I: What is the relationship between goal management and psychological adaptation to

arthritis?

Symptoms of polyarthritis, such as pain, fatigue and reduced mobility, interfere with

personal goals in all domains of a person’s life [11-14]. Patients, therefore, face the task

of reconciling their threatened goals with their capabilities. Effective use of goal-based

coping is considered to be related to successful adaptation to living with a chronic

disease and better psychological health [7,9,8,10]. In Chapter 2, the relationship between

goal management and psychological adaptation to arthritis was studied. An integrated

model of goal management was presented as a working model that combines four goal

management strategies: goal maintenance, goal adjustment, goal disengagement, and

goal reengagement. Successful psychological adaptation was represented by the absence

of distress (depression and anxiety) and the presence of wellbeing (purpose in life, positive


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affect and satisfaction with social participation). Together these five concepts presented

a broad spectrum of psychological health. Five hierarchical regression analyses revealed

relations between goal management and the indicators of psychological adaptation. In

general, higher levels of goal management strategies related to lower levels of distress and

higher levels of wellbeing. Adjusting goals to personal abilities and circumstances (goal

adjustment) and striving for goals (goal maintenance) proved to be the most beneficial

strategies for achieving psychological health while goal reengagement also related positively

to psychological health. Arthritis-related self-efficacy for symptoms other than pain, known

to be an important mechanism in adaptation to a rheumatic disease, partly mediated the

relationship between the goal management strategies and psychological adaptation.

While this cross-sectional study provided insight into relations between goal-based

coping and psychological health, (inter)relations over time between these concepts were

still unknown. Longitudinal studies of goal management were lacking and cross-sectional

studies typically included only two goal management strategies. Following from the study

described in Chapter 2, a broad repertoire of strategies in the case of goal-interference

was hypothesized to be beneficial for the psychological health of persons with arthritis.

Therefore, in Chapter 3, relations between patterns of goal management tendencies and

psychological health were studied over a one-year period among people with polyarthritis.

Results showed that people could be divided into three groups, each with a different

pattern, based on their levels of four goal management strategies at baseline. The first

pattern ‘Moderate engagement,’ constituted 44.20 % of the sample and was characterized

by a low level of goal maintenance, average reengagement of goals, slightly lower than

average goal adjustment and high goal disengagement. The second pattern – ‘Broad goal

management repertoire’ – represented 34.48 % of the sample. In this pattern, high levels

of goal maintenance, goal adjustment and goal reengagement coexisted with an average

level of goal disengagement. Thirdly, the pattern ‘Holding on’ represented 21.32 % of the

sample and was comprised of a high level of goal maintenance accompanied by low levels of

the other three strategies: goal adjustment, goal disengagement and goal reengagement.

Longitudinal analyses affirmed the hypothesis that having multiple goal management

strategies at one’s disposal is beneficial for psychological health, as people characterized by

the ‘Broad goal management repertoire’ showed significantly higher levels of psychological

health over time. In addition, it was hypothesized that holding on to unattainable goals

may be a source of stress and frustration when an individual lacks the adaptive flexibility

to switch between strategies as necessary. This was supported by the finding that stable

lower levels of psychological health over time were found in persons characterized by the

‘Holding on’ pattern. For people with the ‘Holding on’ pattern, support and guidance to

become familiar with a broad range of strategies and to become more flexible when dealing

with threatened goals might be beneficial in order to increase their psychological health.

Persons with the ‘Moderate engagement’ pattern scored in between both other patterns


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with regard to their levels of psychological health. These persons, despite having a greater

variety of goal management strategies when compared to persons with the ‘Holding on’

pattern, might also profit from additional support to strengthen and deploy the various

strategies.

Symptoms of arthritis interfere with goals in all domains of a person’s life and this has an

impact on the psychological health of people [11-14]. Goal interference might have more

impact depending on the domain and the personal importance assigned to that domain

[15]. For example, one study showed that declines in the ability to engage in recreational

activities and social interactions increased the risk of new depressive symptoms [16].

Following this, it was hypothesized that the preferred goal management strategies of

persons with arthritis differ per domain. Little was known about the choices that people

make when confronted with limitations and a declining ability to perform valued activities

in specific domains. Therefore, in Chapter 4, a measurement method for domain-specific

goal management was developed and evaluated. Eleven hypothetical stories – vignettes –

were developed, in which the main character experiences goal interference in a particular

domain. The vignettes referred to the following three domains: the social domain, leisure

activities and independent functioning. Thirty-one persons with rheumatoid arthritis judged

the situations and the impact of arthritis as described in the vignettes as being realistic and

recognizable. Subsequently, domain-specific goal management was examined in 262 persons

with polyarthritis using the newly developed measurement method. Participants described

options to resolve the goal interference in a subset of the vignettes (one per domain) and

ranked their own solutions on preference. A large majority (90 %) of the solutions could be

categorized either as goal maintenance (32 %), goal adjustment (29 %), goal disengagement

(21 %) or goal reengagement (10 %). Preferences for particular strategies differed per

domain, indicating that patients cope with goal interference differently depending on the

affected domain. Among the domains of independent functioning and leisure activities,

the goal maintenance strategy was preferred followed by the goal adjustment strategy.

By contrast, in the social domain, goal adjustment was the most preferred followed by

goal reengagement. Goal disengagement was the least preferred strategy across the

studied domains. No new or other strategies were found in response to the vignettes,

which indicated that the four strategies of the integrated model of goal management

were exhaustive in response to the vignettes. Also a pattern of strategies emerged in which

persons with arthritis mostly preferred goal maintenance and goal adjustment, while goal

disengagement was consistently the least preferred strategy across domains. Results of this

study emphasized the need for a domain-specific instrument, as the preferred strategy to

cope with goal interference differed across domains. This study showed that the vignettes

can be used to investigate how persons with arthritis cope with goal interference in specific

life domains from a patient’s perspective.


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Part II: What is the effect of a goal management programme on the psychological health of

people with arthritis and mild depressive symptoms?

The results of Part I led to the development of a group programme for goal-based coping that

aimed at increasing psychological health of persons with arthritis. This psycho-educational

programme Right on Target, as described in Chapter 5, was developed from a person-centred

view, an approach which centres around the experienced impact of the disease on a patient’s

life. This is in contrast to traditional self-management programmes that are developed

from a disease-centred or problem-oriented point of view. The person-centred approach

asserts that patients are persons and should not be reduced to their disease alone, and,

furthermore, that their subjectivity and situation within their environment, their strengths,

future plans and rights, should be taken into account [17,18]. Beside this approach, the

group-based programme Right on Target was developed using psychological and behaviour

change techniques that are mainly rooted in learning theory and social cognition theories,

such as the use of problem identification, goal setting, modelling and the evaluation of

behaviour. Two patient partners and a specialized rheumatology nurse participated in

the design process. Underlying the programme is the belief that, while participants know

best how to manage their own situation, they still need a broad behavioural repertoire

and increased self-awareness to make appropriate choices. Therefore, participants in the

programme learned general applicable goal management competencies that are not specific

for predetermined disease problems – as in traditional disease-centred self-management

programmes – but that can be applied to various situations of goal interference in daily life.

The goal management competencies focused on are the four strategies of the integrated

model of goal management (goal maintenance, goal adjustment, goal disengagement,

and goal reengagement), as these were proven to be related to adaptation to polyarthritis

(Chapter 2 and Chapter 3), and found to be exhaustive according to persons with polyarthritis,

as described in Chapter 4. The programme consisted of four weekly and two bi-weekly

group meetings led by a trained nurse, homework exercises and a personal trajectory in

which participants were encouraged to try out several strategies to deal with threatened

personal goals.

Subsequently, a study evaluated the goal management programme Right on Target

concerning its aim to increase goal management competencies and thereby decrease

symptoms of depression and increase wellbeing. Although the study was planned as a

randomized controlled trial (the study design is described in Chapter 5), design changes were

made due to the initially small number of applicants. This resulted in a quasi-experimental

design, in which all eligible participants were assigned to the group that received the

intervention. Eighty-five persons with polyarthritis and mild depressive symptoms were

included. In Chapter 6, the changes in level of depressive and anxiety symptoms, purpose

in life, positive affect and satisfaction with participation were compared between persons

that participated in the programme and persons in a longitudinal observatory study who


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received the usual care. This reference group consisted of 151 participants from the studies

that are described in Chapters 2 and 3, who were selected with the same criteria as were

applied to the intervention participants. Measurements were at baseline and 6-month

follow-up for both groups and a post-intervention measurement (2 months after baseline

measurement) for the intervention group only. Results showed no significant differences

in changes over time in level of the primary outcome depression, nor secondary outcomes

of anxiety, purpose in life, and satisfaction with participation. However, immediately after

the intervention and at follow-up after 6 months, positive affect had significantly increased

in the intervention group compared to the reference group. Moreover, this increase was

mediated by an increase in goal adjustment, confirming the hypothesis that improving

goal management competencies can increase the emotion-related aspect of wellbeing in

persons with polyarthritis over long periods of time. Among participants, the tendency to

maintain goals decreased and self-efficacy expectations for arthritis symptoms other than

pain increased.

In addition to the effect study, a process evaluation was executed in order to identify key

components of the intervention from the perspective of the participants and to evaluate

the intervention’s fidelity. In this study, described in Chapter 7, 24 in-depth semi-structured

interviews with participants post-intervention and audio recordings of 16 random training

sessions were analysed using a qualitative approach. The interviews with participants were

used to achieve the first aim of the study. From the perspective of participants, three key

components relating to the effect of the programme became evident: the content of

the programme, the person-focused approach and the social mechanisms. The first key

component, content of the programme, included: a) writing exercises, role models, and

mental simulation that led to raised awareness of one’s own behaviour, personal goals,

and possibilities and limitations caused by arthritis; and b) the personal trajectory and

graphic figures that led to an (intention to) change goal management behaviour, including

performing new goal management strategies and stating one’s boundaries and limitations.

The second key component, personfocused approach, covered the role of nurses as trainers

and the personal fit of the person-focused approach. Lastly, the third key component, social

mechanisms, included: a) facilitating group processes, such as peer support and bonding;

and b) interpersonal processes, such as social comparison and modelling.

To reach the second aim – that is, to determine whether the programme was delivered

as intended – the meeting recordings were analysed. The adherence of the trainers to

the protocol was high. Concurrently, trainers appeared to differ in the degree to which

they were able to fully apply the coaching and supporting approach as was intended. The

recordings also revealed that trainers differed in the degree that they mastered psychological

communication skills. From this study, it can be concluded that the effective components

of the programme as experienced by the participants correspond to the programme aims.

Furthermore, the study showed that both trainers and participants are not always fully


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prepared for, nor at ease with, the new roles that a person-focused programme requires.

Nevertheless, this study showed that while patients might find their new role as an ‘expert’

challenging, most were ready to meet that challenge with the aid of additional guidance,

tools and support.

Theoretical considerations

This theoretical discussion is divided into Part I and Part II, with Part I discussing the theoretical

considerations regarding goal management and its role in maintaining the psychological

health in persons with polyarthritis. Part II addresses the theoretical considerations in

relation to the goal management programme Right on Target.

Part I: Considerations of the role of goal management for adaptation

This thesis adds important insights to the scientific knowledge about the role of goal-

based coping for adaptation to a chronic disease. A self-regulatory perspective proved

both useful and meaningful for describing and improving psychological health in persons

with polyarthritis. In Chapter 2, goal-based coping was related to outcomes of distress

and wellbeing. The first longitudinal study into the relation between goal-based coping

and psychological health in people with arthritis revealed three distinct patterns of goal

management and their relationship with psychological health over time (Chapter 3).

Subsequently, a method to study domain-specific goal management was developed,

allowing the investigation of domain-specific preferences for goal management of persons

with arthritis.

Usability of the integrated model of goal management

The integrated model of goal management (IMGM), which is a working model based on

two theories of goal-based coping as discussed in Chapter 1, was applied in this thesis.

The operationalisation of the IMGM in four distinctive goal management strategies has

proven to be face valid. For example, these four strategies were used to categorize the vast

majority of behavioural options suggested by persons with arthritis in response to domain-

specific goal interference (see Chapter 4). Also, certain strategies (goal disengagement and

goal reengagement) were named and valued as preferred behavioural options in some

domains only (also discussed in Chapter 4). Furthermore, the material derived from the

goal management strategies that was used in the goal management programme (i.e. four

illustrations that depict the goal management strategies) received a very positive assessment

by participants (see Chapter 7) and was reported as having been helpful in sustaining

behavioural change. These results highlight the practical value of the IMGM.

Despite the face validity of the model, the interrelations between the strategies need


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to be considered. Conceptual differences between the two models that were combined

in the IMGM and their associated measurement instruments have hampered conclusions

about the theoretical value of the model. Namely, the first model, the Dual-process Model

[19,20] is defined as two higher level continua (assimilative and accommodative) that both

consist of a range of processes possibly representing lower level strategies. On the other

hand, the second model, the Goal Adjustment Model [21,22] is operationalized as two

defined strategies. Thus, the two models differ in how goal management is described and

the extent to which separate strategies (in particular lower level strategies or processes)

can be distinguished with the used measurement scales. As a result, although the goal

disengagement strategy was hypothesized as a facet of goal adjustment processes in

Chapter 2, the precise relationship could not be determined with the studies performed in

this thesis. The same applies to the goal reengagement strategy; although this strategy was

conceptually considered as a combination of processes stemming from both the continua of

goal maintenance and goal adjustment, these possible relationships could not be explored.

The IMGM did, however, made it possible to study a range of strategies and combinations

of strategies and, therefore, served as a useful working model. To improve the application

of goal-based coping in a chronic disease population, the focus of further research should

be the identification and operationalization of lower level strategies and processes covered

by the accommodative and assimilative continua. After the development of a measurement

method for the lower level strategies and processes, the study of the position of the

strategies goal disengagement and goal reengagement in relation to these continua might

be further explored.

Goal management in relation to psychological health

Results of the longitudinal study into patterns of goal management showed that a broad

repertoire of goal management is beneficial for psychological health. This is in line with

other studies that showed the importance of coping flexibility for psychological health

[10]. In this thesis, coping flexibility was conceptualised as having several strategies at one’s

disposal that can be deployed as required by one’s circumstances and the environment.

Results of this study align with the conclusions of the review of Cheng and colleagues [10]

that a broad repertoire of goal management strategies is related to better psychological

health.

Individual goal management strategies appeared to differ in their relationship with

psychological health. Goal adjustment proved to be the most beneficial strategy for people

with polyarthritis, as higher levels of this strategy were consistently found to be related to

better psychological health. Goal maintenance was also related to psychological health in

the observational studies, although it appears that high levels of goal maintenance must be

combined with high levels of goal adjustment and goal reengagement to be beneficial for

psychological health (Chapter 3). Reengagement in new, feasible goals seems less important


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for persons with polyarthritis, where in other studies this strategy related to less depression,

for example in people with peripheral arterial disease [23]. While higher levels of goal

adjustment were found to relate to a lower impact and severity of fatigue and a higher level

of coping with fatigue in persons with polyarthritis, the strategy of reengagement was not

found to be related to fatigue [24]. Clearly, people must have the capability and sufficient

energy under situational limitations to commit to and exert effort into new goals. These

necessary conditions become apparent in Chapter 3, where people who are characterized

by the ‘Holding on’ pattern had the lowest tendency to pursue new goals, possibly related

to their high disease burden. A higher tendency to disengage from goals related to lower

levels of anxiety, as discussed in Chapter 2, and levels of goal disengagement differed

between the three patterns, as shown in Chapter 3. However, conclusions regarding this

strategy should take into account the consistently low internal reliability of the measure

for goal disengagement across all performed studies. North American and Canadian

studies found the internal consistency to be satisfying [25,26,22]. As discussed in Chapter

2, the low reliability of the scale could be caused by the interpretation of the items of the

disengagement measure, as two items of the scale reflect the reduction of effort to reach

a goal (behaviour) and two items the relinquishment of commitment to a goal (mental

acceptance) [22]. However, this is not a satisfactory explanation. If one assumes that the

inconsistency about the meaning of disengagement caused the low reliability in the Dutch

version of the scale, the reliability of the scale in other languages should also be affected by

the same cause. More research is necessary to develop a scale for goal disengagement that

shows better psychometric indicators across languages and populations. For example, it is

advisable to recheck the translation of the items, but also to add more items to the scale. To

improve the scale’s reliability and better understand the performance of the current items,

future researchers should apply cognitive interview testing to revise the Dutch items or use

item response theory to develop a new or revised questionnaire [27,28].

Switching from holding on to letting go

Of particular interest for future studies is the ‘Holding on’ pattern of goal management

identified in Chapter 3 as having a relationship to a low level of psychological health. Some

of the people characterized by the ‘Holding on’ pattern might be caught in the last phase

of assimilation characterized by compensatory efforts [19]. In this phase, goals and self-

standards no longer match personal capacities and compensatory reserves (reserve capacities

and behaviours that can be deployed for tenacious goal attainment when initial efforts prove

insufficient). Maintained commitment to such goals may result in a feeling of helplessness

and depression. Eventually, lower goal-related control beliefs and experiences of irreversible

loss should set the stage for more accommodative processes. More detailed insight into

lower-level processes which are part of the continua of assimilative and accommodative

coping is needed to study the complex interplay between both continua. Insights into the


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role that both continua simultaneously play can be increased by developing a measurement

instrument that allows differentiation between the several lower-level processes of the

continua. The development of such an instrument could be informed by single-case research

designs that have an in-depth focus on a small number of persons with arthritis, ideally

following them for an extended period from disease onset. Such a project could clarify the

influence of these processes on a person’s mood and wellbeing. Other studies have shown

the utility of single-case studies for testing theories [29,30].

Domainspecific goal management

This thesis showed the preferences for goal management strategies of persons with arthritis

differed between domains, thereby confirming the relevance and usefulness of domain-

specific measurements of goal-based coping for a chronic disease population. A number

of studies recently conducted provide insight into the utilisation of goal management

strategies in specific situations, such as specific goals, or in certain domains, among diverse

patient populations [31-36]. In addition, the study described in Chapter 4 adds knowledge

about domain-specific goal management of persons with polyarthritis. Four domains that

are influenced by arthritis were identified from the literature and from interviews with

patients. These domains are: work and remunerative employment, leisure and recreation

activities, independent functioning, and family and social relationships. The domain of work

and remunerative employment was excluded from further study due to the diversity of

work status of our research participants. People with polyarthritis preferred certain goal

management strategies over others within a given domain, emphasising the relevance of a

domain-specific measurement. For example, in the vignette study, the goal reengagement

strategy was mentioned in a quarter of the responses to the vignette that described a

problem in the social domain, while this strategy was rarely mentioned in response to the

vignettes concerning problems in other domains.

Domain-specific or contextual goal management has never been measured during

intervention studies – and the studies in this thesis are no exception – although such a

study could provide more insight into effective strategy use. Unfortunately, a practical

measurement tool that would enable us to monitor the management of one particular goal

of a participant is lacking. This lack might have influenced the ability to detect changes and

effects of goal management on the effect of the programme Right on Target (see Chapter

6). Specific goal management strategies might be more effective when applied for goals in

one domain than in another domain.

Comparison of theories of goalbased coping and of selfefficacy

In this thesis, self-efficacy was measured repeatedly together with goal-based coping. Both

concepts were compared in order to explore their value for the psychological health of people

with arthritis. The concept of self-efficacy is derived from social cognitive theory, where self-


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efficacy beliefs influence goal-related behaviour through outcome expectancies and social

cultural factors [37]. The application of the concept of self-efficacy is often restricted to

health-related goals, for example, healthy eating habits, maintaining or achieving a healthy

weight and managing disease symptoms. In general, outcomes for psychological health can

be identical regardless of which model is used to explain and guide behaviour. However,

when the pursuit of a major personal goal becomes threatened or interferes with health-

related goals, people can turn to goal-based coping, making counterintuitive choices which

can result in an increased level of psychological health. For example, when someone finds

that his or her profession becomes increasingly exhausting to perform due to a chronic

condition, leaving the job or reducing their work hours could be designated as the healthiest

option. However, when the job touches upon core-values of the self and self-identity, his or

her decision to keep working will probably be based on balancing the gain (e.g. sense of

meaning to life) and costs (e.g. stress and fatigue). Goal-based coping takes into account the

entire person and not only the goals that are directly related to the health domain. Aiming

to be comprehensive, realistic and corresponding to the real life of a person with a chronic

disease, goal-based coping should be used to study wellbeing and distress in persons with

chronic disease. Measurement of self-efficacy can be added where appropriate, for example,

researchers might measure arthritis-related self-efficacy when studying health-related goals.

Part II: Considerations of the goal management programme Right on Target

The prevalence of anxiety and depression for people with polyarthritis described in this

thesis correspond with other research that showed that at least 20 % of the people with

rheumatoid arthritis suffer heightened levels of anxiety and depression [38,39,3,40].

Moreover, this thesis states that the prevalence of distress in people with inflammatory

rheumatic diseases other than rheumatoid arthritis also deserves attention, where most

studies focus only on the latter. For all people with rheumatic diseases, targeted interventions

for increasing psychosocial health are needed [41]. Furthermore, to support resilience and

thereby increase psychological health, a shift from the leading disease-specific paradigm

to a person-focused holistic approach is also needed (Chapter 5). Consequently, goal-based

coping was used to design an innovative person-focused intervention called Right on

Target. The value of the goal management programme Right on Target for the wellbeing

of persons with arthritis (Chapter 6) is discussed in the next section. From the perspective of

participants, the application of goal-based coping has proven to be a useful and effective

approach (Chapter 7).

Goal management programme Right on Target

The goal management programme Right on Target was designed to decrease distress and

increase wellbeing by helping participants to learn and improve their goal management

competencies. The hypothesis was that the ability to use four goal management strategies


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and choose between them depending on the situation would improve the psychological

health of participants with polyarthritis and mild depressive symptoms. Results of this quasi-

experimental study showed that the tendency to adjust goals increased in participants,

while their tendency to maintain goals decreased. In accordance with other studies, the

strategy of adjusting goals proved to be the most valuable for psychological health [42,43].

Namely, the increase of the level of goal adjustment mediated an improvement in positive

affect over time in the group that participated in Right on Target.

The study did not show an effect of the programme on the other concepts of psychological

health that were included as outcomes: depressive and anxiety symptoms, purpose in life

and satisfaction with social participation. Although, with the current knowledge, no aspect

can be designated as the cause for this lack of effect, several reasons can be hypothesized.

The study design might not have been appropriate to detect a change in the primary and

secondary outcomes. For example, as discussed in Chapter 6, changes in these outcomes

might need more time to become evident than a change in positive affect and, therefore,

might be detected after a longer follow-up. Another possibility is that the changes in goal

management strategies do not relate to the outcomes of distress and wellbeing. However,

this is unlikely since the observational studies in Chapter 2 and 3 showed a clear relationship

between the goal management strategies and the outcomes of distress and wellbeing.

These observational findings imply that the choices made in the design of the study might

have influenced the ability to detect changes in the primary outcome. Although the Hospital

Anxiety and Depression Scale (HADS) is considered to be a valid screening instrument

for depression in persons with rheumatic diseases [44-46], few studies exist that report a

moderate responsiveness of the scale for changes over time [45,47,48]. In addition, the

applied inclusion criterion of at least a score of four on the depression subscale of the HADS

and exclusion criterion of ≥ 22 on the HADS (considered indicative of severe psychological

distress) may have caused floor and ceiling effects that reduced the chances in this study to

detect an effect on the primary outcome measure.

Findings in Chapter 7 may shed more light on the limited effect in most of the outcomes.

Participants differed in their preferences for exercises and other elements of the programme,

such as the duration of six meetings. An exercise such as the goal hierarchy pyramid (used

for linking threatened activities to associated goals) might have been too abstract for some

participants, as was mentioned by one interview participant. The participants differed also

in their preferences for writing exercises or exercises related to role models, and in their

appreciation of the technique of mental simulation. As concluded in Chapter 6, the use of

various components created an intervention that is attractive for a broad audience, but for

some participants this may have led to a low intensity of some of the effective elements.

Furthermore, some participants felt that the duration of the programme was not sufficient

to internalise their newly learned behaviours or address their problems. This raises the

question whether the programme contained sufficient support for participants to become


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more flexible in their goal management and offered sufficient guidance on the choice of

the right strategy at the right moment. Booster meetings or a buddy system might enhance

the implementation of the newly learned behaviour [49].

While the trainers accurately followed the training protocol, their ability to apply the

intended coaching and supporting approach to participants differed as well as their

competencies with regard to psychological communication skills. As a result, some trainers

may have appeared as more suggestive and directive than intended [cf., 50] and may have

negatively influenced the benefits that individual participants experienced. A non-directive

attitude of the trainer was named as a key asset of the programme as discussed in Chapter

5, but it could also be an obstacle as the programme possibly asks health professionals to

use competencies that they are not familiar with in their daily practice. Combining this

observation with results of other studies, health professionals, including nurses, need

additional training to ensure patients’ self-management competencies can be maintained

and fostered and to fully support the patient’s role as an expert in clinical settings [cf.,

51,52].

Another related finding from the process evaluation as described in Chapter 7 was that

patients may need extra support to take full advantage of the program’s collaborative

approach. For example, a substantial number of participants had expectations at the start of

the programme that did not align with the programme’s set-up. Though their expectations

differed from their actual experience, participants highly valued the focus and content

of the programme after their participation. This underscores the importance of language

in recruitment (e.g. ‘training’ or ‘course’ rather than ‘class’) [53]. But more importantly, it

implies that to benefit fully from person-centred programmes, patients may need extra

support to make the transition from relying on medical experts to being in equal partnership

in conversation and, ultimately, to making independent decisions in their day-to-day lives.

Role of goal management in the care relationship

In a collaborative person-focused care model, goal management can help patient and health

professional to discuss a patient’s goals (both in life and in relationship to his or her health)

and to set goals that are considered to be the most important [54]. A considerable paradigm

shift is needed to accomplish this in the upcoming years [17]. The empowerment of patients

can enable such a paradigm shift [55,56]. Some patients already have achieved a certain

degree of independent decision-making by using the abundance of health information

available on the internet. Nevertheless, the health professional plays an important role in

changing the approach of persons with chronic diseases [55,57]. The core of every effective

treatment is to see the patient as an equal partner in care planning and to focus on problems,

health concerns, and goals as defined by the patient [58,59]. This implies a switch from self-

management as a support for disease management, to self-management as a support for

the overall health of the individual with a chronic disease. The health professional provides


201


information about the disease and disease management and helps the patient to make

informed choices among the available strategies enabling the patient to deal with his or

her goals [60]. Interventions departing from goal-based coping such as Right on Target can

support patients to define their important and threatened personal goals and teach them

effective problem solving skills. Moreover, eHealth and medical technology hold a promise

for the development of information technology solutions that stimulate and enable person-

centred care [18]. Right on Target could, for example, help persons with arthritis to identify

domains and aspects of life in which improvement is desired. Instead of asking patients with

a chronic disease “What is the matter?”, a person-focused perspective encourages health

professionals to ask patients, “What matters the most?”

Methodological considerations

This section addresses the general methodological considerations of this thesis and provides

suggestions for future studies. The studies in this thesis focus on a relatively unexplored area,

namely the role of goal-based coping in successful psychological adaptation to polyarthritis.

The empirical studies are built on a solid theoretical basis regarding goal-based coping,

using two complementary theories of goal management. Also, both domain-specific and

general tendencies of goal management received attention in this thesis, hereby combining

two perspectives on goal-based coping [cf. 10]. The measurement of goal management

is not without challenges. This thesis provides new insights and a new method to study

preferences for domain-specific goal management, however, it also evokes new questions

that remain unanswered. Other approaches of studying goal management will have to

extend the knowledge gained in this thesis. For example, single-case research designs that

follow one person for an extended period can provide external validated information on an

individual level when focusing on specific goals, domains, differences in goal management

strategy use, and on the influence on wellbeing. Such in-depth knowledge would help

to interpret and to explain cross-sectional and longitudinal results that are obtained by

applying questionnaires that measure general tendencies of goal management. These

methods, however, have their own disadvantages such as limited generalizability of

individual trajectories of goal management and adaptation.

Measuring multiple indicators of distress and wellbeing has proven to be a key-point of

the studies in this thesis. Until now, self-management programmes did not show an increase

in positive outcomes such as positive affect [61]. Also, in many cases positive outcomes are

overlooked. This thesis confirms that positive outcomes must be included when studying

(interventions for improving) adaptation and resilience [62] since they are part of a persons’

health [63] and can be improved by an intervention aimed at increasing adaptation.

A general limitation of this study relates to the exclusive use of self-reporting questionnaires


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in the studies described in Chapters 2, 3 and 6 and the lack of clinical data, except disease

diagnosis that was retrieved from the hospital registry system. Inherent drawbacks of self-

reporting questionnaires are socially-desirable answers and response bias, which may have

influenced the answers given.

Another limitation that concerns the relationship between goal management and

self-efficacy is that mediation analysis does not imply a causal relationship. The precise

relationship between the concepts remains unclear due to the cross-sectional character of

the study in Chapter 2. This relationship deserves further study.

The studies described in Chapters 2, 3 and 4 included patients from the Arthritis Centre

Twente. Strengths of these samples are their size, the diverse representation of persons

with polyarthritis, and the low attrition rate over time. Despite the fact that the sample

corresponds to samples used in research conducted in other hospitals, the origin (i.e. one

region in The Netherlands) should be kept in mind when generalizing the results. Similarly,

but to a lesser extent, the studies described in Chapter 6 and 7 included participants that were

recruited mainly through four clinics and patient organizations located in the Southeast and

East regions of The Netherlands.

A randomised controlled trial (RCT) is considered the gold standard for the evaluation of

an intervention both in the fields of health psychology and medicine. From that perspective,

one clear limitation is the impossibility to study the effect of the goal management

programme Right on Target using a RCT design. This thesis, however, can provide a new

light on this perspective. The goal management programme is a complex intervention made

up of several potentially active components, challenging any evaluation more than a single

intervention such as administering a drug [64]. Scholars have raised the question whether a

RCT is the appropriate study design to evaluate a complex health intervention such as Right

on Target [65,66]. The applied quasi-experimental design and the appointment of nurses

as trainers have provided helpful information in case of further application because the

study actually resembled a real implementation. Also, the mixed-method design applied,

as discussed in Chapter 7, provided better insight into this matter, because it considers

the environment in which the intervention operates (i.e. a secondary care institution) and

provides insights into the perspective of participants as well as trainers. These observations

led to the conclusion that an intervention cannot be considered separate from the context

in which it is implemented, while an RCT demands a highly controlled environment. Future

studies could take advantage of new fields of science such as improvement science – which

aims to design pragmatic trials that make use of rigorous and credible assessment methods

while also justifying the often complicated and heterogeneous real-life situations [67]. In

the development of methods for evaluating a complex intervention such as Right on Target,

which cannot be seen in isolation from its context, uncontrollability should be acknowledged

and accounted for [68,67].

In addition to the limitations concerning the lack of randomization and a cost-effectiveness


203


evaluation as discussed in Chapter 6, the reference group in the quasi-experimental study

emanated from an observational longitudinal study and received the usual care. In contrast

to a waiting-list control condition, participants in the observational study did not expect to

join the programme after the study period, making this quasi-experimental design a more

naturalistic comparison. However, there was no comparison with another group programme

to control for non-specific effects such as attention and social interaction.

The combination of an effect study and a process evaluation of the goal management

programme proved to be highly valuable. The process evaluation provided a better

understanding of the barriers and obstacles that this type of programme can experience

[69,65] and showed the effective ingredients of the programme as perceived by the

participants. Designers of future programmes must take into account the knowledge and

experience that patients, professionals and organizations have with person-focused care

before designing and implementing an intervention. Health psychology might benefit from

adopting the approach and the pragmatic methods stemming from improvement science to

study interventions in their context and to enhance the external validity of the knowledge

gained in local projects [67].

Implications for research and practice

Implications for studying goal-based coping can be summarized and extended as follows.

Several results in this thesis call for more in-depth research into the processes involved in

goal-based coping and adaptation to a chronic disease. The application of goal-based coping

in a chronic disease population can be optimized through the operationalization of lower

order strategies which are covered by the accommodative and assimilative continua [19]. This

can, for example, result in a goal-specific measurement tool, a more general questionnaire

measuring a broad spectre of strategies, or a diary method for the measurement of day-

to-day goal management processes. Another example would be a measurement tool to

distinguish between ‘healthy’ and ‘unhealthy’ goal maintenance by discriminating between

relatively comfortable goal pursuing processes and more stressful compensatory efforts,

where pursuing a particular goal asks for the increased use of compensatory reserves.

One clear recommendation for the development and evaluation of interventions is the

adoption of the improvement science approach where pragmatic trials are designed using

rigorous and credible assessment methods while taking into account complicated and

heterogeneous real-life situations [67]. The studies executed with regard to Right on Target

meet a couple of criteria that are reflected in improvement science, such as: a solid base in

theory; a collaboration between researchers and health professionals; and being conducted

in a multicentre study, which increased generalizability. Also recommended is the use of

mixed methods, such as the combination of an effect study and a process evaluation as


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was applied in this thesis. Especially in complex interventions, the use of qualitative and

quantitative methods can reveal what would not have come to the surface by using one

method alone [69].

This thesis mainly focused on the micro-level of the patient with a chronic disease.

Applying the person-centred care approach in practice will imply that the patient becomes

the principal caregiver; she or he is responsible for daily management, change of behaviour,

emotional adjustments and accurate reporting of the development and pace of the

disease [51]. Current transitions in health care point to a change in accountability. Where

traditionally politicians, managers and health professionals were once responsible, health

care policymakers are now recognizing the need to extend accountability to patients to give

them control over decisions regarding their own health [70]. Self-management programmes

developed from a person-centred approach such as Right on Target can be applied to support

people to develop the needed knowledge, skills and confidence as well as to identify goals

from the persons’ perspective [54]. During consultations with patients, health professionals

need to determine which patients (currently) cannot or do not wish to (fully) play an active,

empowered role in decisions regarding their own health care [71,56].

Given the importance of psychological health for both physical health and overall

wellbeing and the considerable levels of distress found in the populations studied in this

thesis, chronic disease care should also be engaged in the psychological health of its patients.

A clear practical implication is the use of the four goal management strategies for discussing

behavioural options with patients. The four strategies can be used in interventions and in

routine consultations by health professionals such as nurses to stimulate flexible adaptation.

Chapter 7 showed that achieving a truly collaborative relationship between health

professionals and patients still has to overcome significant obstacles. At the meso-

organisational level, it can be questioned whether health professionals are equipped to

promote health by psychosocial means [72]. Adequate and timely screening for distress

and lower wellbeing and raising the topic of psychological health in routine consultations,

however, are prerequisites that can easily be met. Ideally, clearly protocoled programmes

such as Right on Target may be offered to a defined population, e.g. persons with heightened

levels of distress due to goal interference caused by arthritis. It might also be appropriate

to provide goal-based programmes such as Right on Target in (collaboration with) primary

care, as the person-focused perspective is one of the key characteristics of primary care

[73]. The ‘Happiness Route’ programme is another example of a wellbeing intervention that

focused on the personal goals of participants, specifically those people experiencing social

isolation and health problems and a low socio-economic status [74]. Information technology

solutions can support person-focused care at the meso-level, while eHealth and medical

technology can be applied to improve wellbeing, quality and satisfaction with care at the

individual level [18]. EHealth interventions applying supportive and motivating technologies

can enhance feelings of agency and effective self-management of people with chronic


205


diseases. Insights from the fields of health, psychology, wellbeing and technology should be

combined to develop effective person-focused interventions.

This thesis indicated that changes and programmes implemented solely on the micro-

level might not have the impact promised by a person-centred approach. In line with this,

the literature states that a whole system approach is needed to create a person-centred

care system that will achieve effectiveness and efficiency [73,75-79]. At the macro-policy

level, health services have a key role in providing continuity and integration of care, thereby

organizing and (financially) supporting person-focused care on all levels [51]. Services might

need to be organized differently in order to give patients the needed support to self-

manage [80,17]. Implementing person-focused care requires other incentives and policies

than current disease management programmes. In the Dutch situation, health insurers and

local municipalities can use the new concept of positive health [81,63] to apply a person-

centred approach in their arrangements with care providers.

Conclusion

The studies presented in this thesis are grounded in theory and show the starting points

for improving psychological health in persons with polyarthritis. Goal-based coping and, in

particular, the ability to flexibly adjust goals has proven to be valuable, both conceptually

and practically, for the psychological health of this patient group. Increasing the ability of

persons with arthritis to adjust their goals during participation in the programme Right on

Target related to stable and higher positive mood after the programme. The results underline

the value of goal-based coping for the psychological health of persons with arthritis and

provide clear starting points for further research and practical implications to implement

changes. To improve the psychological health of persons with arthritis, the question that

needs to be asked is not only “What is the matter?” but perhaps more importantly, “What

matters to you?”


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Dutch summary |

Samenvatting


214

DUTCH SUMMARY | SAMENVATTING

Gewrichtsontstekingsreuma en omgaan met persoonlijke doelen

Onder de noemer gewrichtsontstekingsreuma vallen verschillende chronische gewrichtsont-

stekingen aan het bewegingsapparaat die alle gekenmerkt worden door immunologische

betrokkenheid. Een merendeel van de aandoeningen wordt gekarakteriseerd door periodes

van plotseling verhoogde ziekteactiviteit, waarbij de ontsteking en zwelling van gewrich-

ten verergeren. Deze symptomen beïnvloeden, samen met andere symptomen zoals pijn,

vermoeidheid, een verminderd fysiek functioneren, vergroeiingen, psychische stress en een

lagere kwaliteit van leven, het dagelijks leven van patiënten. Het streven naar persoonlijke

doelen kan hierdoor bemoeilijkt worden. Mensen met gewrichtsontstekingsreuma ervaren

problemen met doelen in verschillende domeinen van het leven, bijvoorbeeld bij hun rol in

de familie, werk, sociaal leven of in het dagelijks functioneren. Het streven naar en bereiken

van persoonlijke doelen is voor het welbevinden belangrijk, omdat doelen het leven zin en

structuur geven.

Volgens zelfregulatiemodellen is menselijk gedrag doelgericht en heeft het falen of sla-

gen van een doel invloed op de stemming van een persoon. Dit betekent dat mensen die

moeite hebben met de gevolgen van gewrichtsontstekingsreuma in het dagelijks leven niet

alleen een verminderde lichamelijke gezondheid, maar ook een verminderde psychische ge-

zondheid kunnen ervaren. Voor het streven naar doelen en het omgaan met de discrepantie

tussen een doel en de werkelijke situatie kunnen verschillende strategieën ingezet worden;

zogeheten doelmanagementstrategieën. Deze doelmanagementstrategieën worden inge-

zet om de verschillen tussen een gewenste en een feitelijke situatie te verkleinen. Mensen

met een chronische aandoening gebruiken deze strategieën bij het omgaan met een situ-

atie waarin doelen moeilijker te bereiken of onbereikbaar zijn geworden.

In het geïntegreerde model van doelmanagement (integrated model of goal management,

IMGM) zijn vier doelmanagementstrategieën gecombineerd, namelijk: a) het volhouden of

blijven nastreven van een doel, b) het bijstellen van een doel, c) het loslaten van een doel,

en d) het zoeken naar een nieuw doel. Effectief omgaan met persoonlijke doelen kan de

aanpassing aan een chronische ziekte bevorderen en hierdoor de psychische gezondheid

vergroten. Belangrijk voor het behouden van een betekenisvol toekomstperspectief zijn

het herkennen van bedreigde doelen, het optimaal toepassen van manieren om met de

gewijzigde situatie om te gaan (doelmanagementstrategieën) en uiteindelijk het nastreven

van nieuwe, waardevolle doelen. De psychische gezondheid is in dit proefschrift aan de hand

van vijf indicatoren onderzocht, namelijk: depressieve symptomen, angstige symptomen, de

ervaring van een zinvol leven, positieve emoties en de tevredenheid met sociale participatie.

Tezamen geven deze vijf indicatoren een multidimensionaal beeld van de aanpassing aan

gewrichtsontstekingsreuma.


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Deel 1: De relatie tussen doelmanagement en psychische aanpassing aan

gewrichtsontstekingsreuma

In hoofdstuk 2 en hoofdstuk 3 van dit proefschrift is aangetoond dat doelmanagement

gerelateerd is aan de indicatoren van aanpassing aan gewrichtsontstekingsreuma. Het aan

passen van doelen bleek de gunstigste strategie voor mensen met gewrichtsontstekings-

reuma; hoge niveaus van deze strategie waren gerelateerd aan positieve scores op alle vijf

hierboven genoemde indicatoren van psychische gezondheid. Ook een sterkere preferentie

voor de strategie doelen vasthouden was gerelateerd aan minder depressieve symptomen,

een hogere ervaring van een zinvol leven en meer positieve emoties. Een grotere neiging

om nieuwe doelen te zoeken was gerelateerd aan minder depressieve symptomen en een

hogere tevredenheid met participatie en ervaring van een zinvol leven. Deze strategie bleek

minder belangrijk voor de psychische gezondheid in onze studies dan in eerder onderzoek

onder mensen met chronische aandoeningen. Vanzelfsprekend moeten mensen wel kun-

nen beschikken over voldoende mogelijkheden en energie om zich met nieuwe doelen te

kunnen bezighouden. Een hogere neiging om doelen los te laten bleek gerelateerd aan

lagere niveaus van angst, deze strategie was niet gerelateerd aan de andere indicatoren van

psychische gezondheid.

Behalve relaties tussen individuele strategieën van doelmanagement en psychische ge-

zondheid, zijn ook combinaties van meerdere strategieën onderzocht. In Hoofdstuk 3 zijn

de resultaten van de eerste longitudinale studie naar relaties tussen doelmanagement

en psychische gezondheid beschreven. In deze studie bleek het mogelijk mensen met ge-

wrichtsontstekingsreuma in drie groepen in te delen volgens de niveaus van de vier doel-

managementstrategieën. De drie groepen verschilden gedurende een jaar in de mate van

psychische gezondheid. Een breed doelmanagement repertoire (hoge niveaus van doelen

vasthouden, doelen aanpassen en nieuwe doelen zoeken en gemiddeld niveau van doe-

len loslaten) bleek gerelateerd aan een goede psychische gezondheid. Deze uitkomst vult

eerder onderzoek aan waarin flexibiliteit in het omgaan met problemen gerelateerd was

aan een betere psychische gezondheid. De groep die gekenmerkt werd door een sterke

preferentie voor vasthouden aan doelen gecombineerd met lage scores op de drie andere

strategieën, had de laagste psychische gezondheid. In combinatie met de bevindingen in

Hoofdstuk 2 betekenen deze resultaten dat een hoog niveau van doelen vasthouden samen

moet gaan met hoge niveaus van doelen aanpassen en nieuwe doelen zoeken om een gun-

stig effect op de psychische gezondheid te hebben. Dit betekent dat het voor de psychische

gezondheid belangrijk is te beschikken over een breed doelmanagement repertoire.

In hoofdstuk 4 is een meetmethode voor domein-specifiek doelmanagement ontwikkeld.

Met dit instrument kunnen de voorkeuren voor doelmanagement in verschillende

domeinen, zoals de domeinen familierol, werk, sociaal leven of het dagelijks functioneren,


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in kaart worden gebracht bij mensen met gewrichtsontstekingsreuma. Deze studie toont

aan dat de voorkeur voor doelmanagementstrategieën verschilt per domein en dat de

vier doelmanagementstrategieën herkenbaar zijn en toegepast worden door mensen met

gewrichtsontstekingsreuma. Deze bevindingen onderstrepen de praktische waarde van het

IMGM. Verder laat dit hoofdstuk zien dat het domein-specifiek meten van doelmanagement

nuttig en relevant is bij mensen met gewrichtsontstekingsreuma.

Deel 2: Het effect van een doelmanagementprogramma op de psychische gezondheid van

mensen met gewrichtsontstekingsreuma en milde depressieve klachten.

De hiervoor besproken resultaten hebben geleid tot de ontwikkeling van een psycho-

educatief groepsprogramma voor mensen met gewrichtsontstekingsreuma met als doel het

verbeteren van de psychische gezondheid. In dit programma ‘Doelbewust!’ (‘Right on Target’)

staat het omgaan met bedreigde doelen centraal. In hoofdstuk 5 is de ontwikkeling van

het programma beschreven. Bij de ontwikkeling is gebruik gemaakt van een mensgerichte

benadering en zijn psychologische methoden en gedragsveranderingstechnieken toegepast

uit leer- en sociale cognitietheorieën. In het quasi-experimentele onderzoek dat beschreven

is in hoofdstuk 6 bleken mensen die Doelbewust! gevolgd hebben geen verbetering te

tonen op de primaire uitkomstmaat depressieve klachten en drie secundaire uitkomstmaten.

De deelnemers van Doelbewust! verbeterden wel op de uitkomstmaat positieve emoties

voor de duur van de follow-up. Deze verbetering werd bovendien gemedieerd door een

stijging in de strategie ‘doelen aanpassen’ bij deze groep mensen. Hoofdstuk 7 beschrijft

een procesevaluatie van Doelbewust! waarin een mixedmethod is toegepast. Doel van

deze studie was de identificatie van de werkzame onderdelen van het programma volgens

de deelnemers en een evaluatie van de uitvoering van het programma Doelbewust!.

Deelnemers noemden de inhoud van het programma, de mensgerichte benadering en de

sociale processen die plaatsvonden tijdens het programma, als werkzame onderdelen. De

naleving van het protocol door de trainers was hoog, wel werden er verschillen gevonden

in de mate waarin de beoogde coachende benadering werd toegepast en in het niveau

van psychologische communicatievaardigheden. Conclusie van de procesevaluatie is dat

deelnemers en trainers nog niet volledig voorbereid zijn noch zich altijd thuis voelen bij

de rol die het programma van hen vraagt. Aan de andere kant laat deze studie zien dat,

ondanks dat de nieuwe rol als ‘expert’ op het gebied van de eigen gezondheid uitdagend

kan zijn voor deelnemers, het merendeel klaar is om deze rol op te pakken en enkel enige

begeleiding, hulpmiddelen en ondersteuning nodig heeft.


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Implicaties van het proefschrift

Gezien het belang van psychische gezondheid voor de algehele gezondheid en de aanzien-

lijke niveaus van psychisch lijden in de populaties die bestudeerd zijn in dit proefschrift, is het

duidelijk dat er bij de zorg voor chronisch zieken aandacht moet zijn voor de psychische ge-

zondheid. Aandacht voor persoonlijke (bedreigde) doelen is hierbij een eerste aanknopings-

punt. Ook adequate en tijdige screening op psychische problemen en laag welbevinden en

het ter sprake brengen van de psychische gezondheid in routine consulten zijn manieren om

de algehele gezondheid te verbeteren. Een duidelijke implicatie van dit proefschrift voor de

praktijk is dat het programma Doelbewust! mensen kan ondersteunen bij het ontwikkelen

van kennis, vaardigheden en zelfvertrouwen, het identificeren van passende persoonlijke

doelen en het ontwikkelen van een breed doelmanagement repertoire. Ook is gebleken

dat een deel van de mensen met gewrichtsontstekingsreuma meer ondersteuning nodig

heeft om volledig te kunnen profiteren van de benadering van Doelbewust!. Verder kun-

nen zorgverleners tijdens een consult bespreekbaar maken in welke mate een individuele

patiënt een actieve rol wil en kan spelen bij beslissingen rondom zijn of haar eigen zorg. Om

toekomstbestendige effectieve interventies gericht op het omgaan met persoonlijke doelen

te ontwikkelen, moeten inzichten vanuit het medische domein, psychologische domein en

het domein welbevinden samengebracht worden met technologische ontwikkelingen.

Conclusie

De studies in dit proefschrift zijn verankerd in de theorie en laten startpunten zien voor

het verbeteren van de psychische gezondheid van mensen met gewrichtsontstekingsreuma.

Doelmanagement en in het bijzonder het vermogen om flexibel doelen aan te passen heeft

zijn praktische en klinische waarde bewezen voor de psychische gezondheid van mensen

met gewrichtsontstekingsreuma. Een toename van het vermogen om doelen aan te passen

van deelnemers aan Doelbewust! leidde tot een stabiele verbetering in positieve emoties.

Deze resultaten onderstrepen de toegevoegde waarde van doelmanagementprogramma’s

voor de psychische gezondheid en geven duidelijke handvatten voor vervolgonderzoek. Om

de psychische gezondheid van mensen met gewrichtsontstekingsreuma te verbeteren, dient

binnen de dagelijkse zorgpraktijk behalve de vraag ‘What is the matter?’, ook te worden

gevraagd, ‘What matters to you?’



Acknowledgements |

Dankwoord


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ACKNOWLEDGEMENTS | DANKWOORD

Een nieuwe periode van mijn leven brak aan toen ik verhuisde van het Hoge Noorden naar

het Verre Oosten om te beginnen aan een promotieonderzoek. Een leerzame tijd brak aan

en veel mensen hebben mij bijgestaan op persoonlijk en professioneel vlak. Bij dezen wil ik

iedereen bedanken die direct of indirect heeft bijgedragen aan de voltooiing van dit proef-

schrift. Zonder jullie steun en toeverlaat was het niet mogelijk geweest en een stuk minder

leuk. Graag wil ik van de gelegenheid gebruik maken om een aantal mensen persoonlijk te

bedanken.

Allereerst Mart van de Laar, mijn promotor. Mart, als reumatoloog heb jij met je klinische

blik bijgedragen aan mijn onderzoek. Jij hebt de grote lijn in het oog gehouden. Op de mo-

menten dat het erom ging reageerde je snel en je hebt mij ondersteund daar waar nodig.

Ten eerste door mij het vertrouwen en de gelegenheid te geven met dit promotieonderzoek

te starten, maar ook door met mij honderden patiëntendossiers door te nemen en natuur-

lijk het zetten van ontelbare handtekeningen. Veel dank hiervoor. Erik Taal, als begeleider

ben jij nauw betrokken geweest bij mijn onderzoek. Jouw deur stond en staat altijd open.

Jij las met veel aandacht de concepten en discussieerde over de opzet en de uitvoering van

het onderzoek met mij. Ik herinner me de zomer waarin we samen hard hebben gewerkt in

een bijna verlaten Cubicus tot onze inter-rater betrouwbaarheid voldoende was. Ondanks

alle energie en tijd die andere zaken in je leven van je vroegen, heb je altijd tijd voor mijn

vragen gemaakt. Dit waardeer ik bijzonder. Christina Bode, mijn dagelijks begeleider, onze

gesprekken waren niet alleen academische verhandelingen, maar er was ook ruim tijd voor

generatie- of emancipatievraagstukken. Ik heb deze discussies als zeer waardevol ervaren.

Bovendien heb ik me altijd gesteund gevoeld door je. Dank voor je grote betrokkenheid.

Je hebt de details altijd in het oog gehouden, zelfs onder de douche hield het je bezig. Je

kritische blik heeft zeker de kwaliteit van dit proefschrift verbeterd.

Een groot woord van dank gaat ook uit naar alle mensen die bij één van de onderzoeken

betrokken zijn geweest als respondent of patiënt. Zonder deelnemers was dit proefschrift

er niet gekomen. In het bijzonder wil ik de mensen noemen die tijdens interviews hun per-

soonlijke verhaal met mij hebben gedeeld. Daarnaast een speciaal woord voor dank aan de

drie deelnemers aan de pilot van ‘Doelbewust!’. Jullie openheid en betrokkenheid, maar

ook het enthousiasme om deel te nemen motiveerde mij en gaf mij een belangrijke inkijk in

het leven van iemand met reuma. Ook de deelnemers aan ‘Doelbewust!’ en de honderden

mensen die vragenlijst na vragenlijst hebben ingevuld, wil ik bijzonder bedanken.

De Stichting ReumaOnderzoek Twente dank ik voor de financiële steun die dit promotie-

onderzoek mogelijk heeft gemaakt.

Leden van de promotiecommissie, prof. Rinie Geenen, dr. Moniek van Hout, prof. Adelita

Ranchor, prof. Piet van Riel, prof. Robbert Sanderman en prof. Gerben Westerhof, ik ben

vereerd dat jullie willen plaatsnemen in mijn commissie en het proefschrift hebben willen

beoordelen. Dank voor de tijd en moeite die u hebt gestoken in de beoordeling van het

manuscript en uw aanwezigheid bij de verdediging.


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Dan kom ik bij de mensen die als collega’s van PGT, ‘de reumagroep’ of in de klinieken

betrokken waren bij mijn onderzoek. Mijn dank gaat uit naar alle collega’s van de afdeling

PGT die mij tijdens het onderzoek hebben bijgestaan met raad, advies of een luisterend oor.

Peter ten Klooster, dank voor de onvermoeibare inzet om mij in te wijden in het voor mij

ondoorgrondelijke Teleform. Dank ook voor het meedenken en je advies over statistische

analyses en studiedesigns. Annemarie Braakman-Jansen, uiteindelijk heb ik geen kostenef-

fectiviteitsanalyse kunnen uitvoeren, maar dank dat je jouw expertise over dit onderwerp

met mij wilde delen. Alle collega’s van PGT wil ik danken voor de samenwerking, maar ook

de interesse en gezelligheid op de afdeling, tijdens congressen en de ‘koffie met taart’ mo-

menten. Dames van het secretariaat, vooral Marieke Smellink-Kleisman en Ria Stegehuis-de

Vegte en later ook Marion Reinderink-Vaanholt, hartelijk dank voor alle bereidheid tot hulp

en ondersteuning, bovendien vond ik het altijd gezellig om even bij jullie binnen te lopen.

Daarnaast wil ik nog een aantal mensen van buiten de afdeling bedanken, die mij gehol-

pen hebben met de inhoud van de verschillende studies. Ten eerste de twee Patiëntpartners

Lynn Packwood en Klaas Sikkel. Dank voor jullie tijd, maar vooral voor het delen van jullie

inzichten en ervaringen. In het bijzonder wil ik graag prof. Job van der Palen noemen. Job,

dank voor je heldere uitleg over de verschillende analyses en je adviezen voor de METC-

aanvraag, dit heeft mij ontzettend geholpen. Tot slot Catherine Lombard: dear Catherine,

thank you for your excellent editing, your flexibility and your dedication to the written

word.

Ook de collega’s van de afdeling Reumatologie en Klinische Immunologie van het MST

wil ik op deze plaats noemen. Alle reumatologen, reumatologen in opleiding, verpleeg-

kundigen en nurse practitioners, hartelijk dank voor jullie hulp, ondersteuning en interesse

in mijn onderzoek. Alle reumatologen wil ik danken voor de hulp bij het aanschrijven van

patiënten, waarvoor we samen honderden papieren dossiers hebben doorlopen en jullie

evenzoveel brieven hebben ondertekend. Jullie hebben me telkens verbaasd met jullie ken-

nis over je patiënten, door het overgrote deel bij naam te kennen. Dr. Inger Meek, dank dat

ik in het begin van mijn onderzoek met jou mocht meelopen om zo een beeld te krijgen van

het werk van een reumatoloog. Ook Jacqueline, Jolanda, Nancy en Riëtte wil ik bedanken

voor het beantwoorden van al mijn vragen over jullie werk en de hulp bij het werven van

patiënten. Alle dames op het secretariaat, dank voor de gezelligheid en ondersteuning tij-

dens de periodes dat ik me door honderden patiëntendossiers heen worstelde. Mijn stapels

dossiers en brieven moeten jullie af en toe enorm in de weg hebben gelegen. Mirjam, als

onderzoeks-secretaresse heb je me ondersteund bij de METC-aanvraag en de verdere com-

municatie met de METC, waarvoor dank. De programmeurs van ROMA wil ik danken voor

hun hulp bij het invoeren van alle vragenlijsten en het verkrijgen van de juiste data uit het

systeem.

Riëtte Leemreize-Mol, tijdens de ontwikkeling van ‘Doelbewust!’ heb ik al van je expertise

gebruik mogen maken. In de aanloopfase ben je met het enthousiasmeren van je collega-


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verpleegkundigen onmisbaar geweest en ook tijdens het geven van de cursus heeft je be-

trokkenheid een grote bijdrage geleverd aan het onderzoek. Wat was het leuk om samen

met jou de cursus te presenteren (in het Engels!) op het eerste internationale reumaver-

pleegkundigen congres in Rotterdam. Bedankt voor de fijne samenwerking en ik vind het

fantastisch dat je het voor elkaar hebt gekregen om ‘Doelbewust!’ voort te zetten in het

MST! Ook Diana Boerema-Evers, Rianka Hek, Rudin Peters en Elsbeth Veldhuis, dank voor

jullie inspanningen als trainer. Jullie enthousiasme en toewijding bij de cursus heeft het

mede mogelijk gemaakt dit onderzoek uit te voeren. Ook de lokale onderzoekers, Dr. E.A.J.

Dutmer van het ziekenhuis Gelderse Vallei in Ede, drs. W. Hissink Muller van het St. Elisabeth

ziekenhuis in Tilburg en drs. P. Olthof van het Streekziekenhuis Koningin Beatrix in Winters-

wijk wil ik hartelijk danken voor hun inzet. Ook de artsen, verpleegkundigen en overige

collega’s van de drie betreffende ziekenhuizen dank ik hartelijk voor hun medewerking en

ondersteuning.

Alle studenten van de Universiteit Twente die in het kader van hun master- of bachelor-

scriptie hebben geholpen bij het verzamelen en invoeren van data en het analyseren van

de gegevens of op een andere manier betrokken waren bij het onderzoek, wil ik hartelijk

danken voor hun hulp en de leuke samenwerking. Jullie hebben allemaal op de een of

andere manier bijgedragen aan de totstandkoming van dit proefschrift: Britta Semlianoi,

Daniel Coulibaly, Diana Becker, Erna Top, Gina Ehling, Hannah Kling, Inge-Loes Vredegoor,

Irina Lehmann, Jadran Botterman, Jana Petermann, Janine Kleinfeld, Janne de Kan, Jen-

nifer Greilich, Kelcy Mooijweer, Laura van Pelt, Leonie Oldenburger, Malou Sowa, Marleen

Perdok, Mirte Seinen, Niki Boerrigter en Sophia Wibberich. Hannah Kling, jou wil ik speciaal

bedanken voor je hulp als student-assistent tijdens de dataverzameling. Onze gezamenlijke

gesprekken hebben me nieuwe inzichten gegeven over de inhoud van de interviews.

Veel dank gaat ook uit naar mijn medepromovendi. Ik bevond me in de luxe positie om

veel collega’s te hebben meegemaakt; zowel de oude garde (waarvan het merendeel tij-

dens mijn eerste twee jaren bij de afdeling promoveerde), als de Torenkamergroep, waar

ik mee op ben getrokken tijdens het hele traject, en de nieuwe garde, die halverwege mijn

tijd aanhaakte. Dank voor de praktische hulp bij het in enveloppen stoppen van honderden

vragenlijsten, maar vooral voor de gesprekken die we hebben gevoerd tijdens de wandeling

naar de koffiecorner, de kantine en tijdens het werken. In het speciaal wil ik de mensen noe-

men met wie ik een kamer heb gedeeld, eerst de torenkamer, later op de gang en tenslotte

in de Cubicus. Vanaf de deur: Ingrid, Liseth, Martijn, Anne Marie, Maarten, Jobke, Hester,

Elly. We waren met veel, wat zorgde voor concentratieproblemen, maar vooral voor ontzet-

tend veel lol. Ik zal het afgrijzen van ‘de mannen’ toen Hester en ik de WK-poule wonnen

nooit meer vergeten. Ik zal me voortaan weer netjes bij het wielrennen houden. Ook mijn

gangkamergenootjes Martine en Stephy en spinningmaatjes Maria en Hester: dank voor de

nodige afleiding. En de anderen, waaronder Floor, Jojanneke, Laura, Laurien, Lex, Marloes,

Nadine, Nienke, Olga, Pia, Rilana, andere Roos, Sanne en Saskia, dank voor alle gezellig-


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heid! Jobke, Hester en Anne Marie, jullie hebben mijn tijd bij de UT zoveel leuker gemaakt,

ik hoop dat we dat de komende jaren voor elkaar kunnen blijven doen! Hester, wij raken

nooit uitgepraat, waar het ook over gaat. Geweldig dat je mijn paranimf wilt zijn en samen

met mij vooraan in de zaal wilt staan!

Prof. Theo Bouman, als begeleider van mijn afstudeeronderzoek bij de RUG heb je me

geprikkeld zelf de problemen die ik tegen kwam op te lossen en gestimuleerd een onder-

zoekende houding aan te nemen. Mede dankzij jouw aanbeveling ben ik begonnen aan dit

onderzoek, waarvoor dank.

Collega’s van de NHL in Leeuwarden; door jullie belangstelling en enthousiasme voor mijn

onderzoek heb ik me gesteund gevoeld tijdens de laatste loodjes van dit proefschrift. Het is

bijzonder voor me dat ik de uitkomsten van mijn onderzoek nu in de praktijk kan brengen,

bij de basis van de zorgprofessional van de toekomst.

Lieve familie en vrienden, al waren jullie niet inhoudelijk betrokken bij mijn onderzoek,

toch wil ik jullie bedanken. Voor alle momenten waarop jullie hebben gevraagd hoe het

met ‘mijn onderzoek’ ging en vooral de momenten waarop het juist over de echte zaken in

het leven mocht gaan.

Anne en Eke, jullie hebben als medebewoner en buurvrouw van mijn anti-kraakhuisje

onze tijd in de Enschedese Vogelaarwijk 100 keer leuker gemaakt, veel dank hiervoor. Attie,

Elise en Carlijn, onze girlsweekenden, logeerpartijen, high tea’s en nu ook de babyshowers

en kraamvisites zijn heel belangrijk voor me! Mariska, Hannah, Wouter, Jonas, we zien el-

kaar veel te weinig. Bedankt voor de steun, interesse en vooral gezellige afleiding! Lieve

vrienden uit Harderwijk (inclusief allen die liever buiten Nederland wonen), dank voor de

ontspanning, interesse, lol en dat jullie me in jullie midden hebben opgenomen als niet-

Harderwieker.

Mappy en oma Withaar, wat fijn dat jullie er altijd zijn als mijn ‘surrogaat’ oma’s (maar

zeker niet minder dan echte!).

Ans en Ton, jullie betrokkenheid en liefde hebben me gesteund. Nog naast al de prak-

tische huis-, tuin- en keukendingen die jullie voor mij en Pim hebben gedaan, zodat wij

door konden werken. Het heerlijke eten en de reisjes en vakanties hebben natuurlijk ook

geholpen!

Renske en Vincent, Josephine en Arnaud, wat fijn dat jullie er altijd zijn. Ik vind het heer-

lijk dat ik jullie de laatste twee jaar weer meer zie en jullie prachtige kinderen van dichtbij

kan zien opgroeien. Josephine, ik ben er trots op dat jij mijn paranimf wilt zijn!

Lieve papa en mama, bedankt dat jullie nooit moe zijn geworden van dat meisje dat altijd

‘waarom?’ vroeg (vraagt..). Jullie hebben zelfs altijd geprobeerd een goed antwoord te

geven op mijn eindeloze vragen. Hiermee hebben jullie mij ongetwijfeld gestimuleerd om

dit promotieonderzoek tot een goed einde te brengen. Papa, wie had dat gedacht, dat ik

de eerste in de familie zou worden die deze titel krijgt. Je hebt je er zorgen over gemaakt,

maar je hebt me ook altijd gesteund. Mama, kiezen voor wat ik leuk vind en waar ik energie


224


van krijg, dat heb ik van jou geleerd. Jullie zijn de beste ouders.

Lieve Pim, ik kan me niet voorstellen hoe het zonder jou zou zijn. Waar ik ook gewoond

heb de afgelopen jaren, thuis is waar jij bent. Afwisselend afstuderen, werken, promoveren,

we hebben het allemaal samen gedaan. Jij hebt me mijn eerste beklimming van de Alpe

d’Huez op gecoached en door de moeilijke dalen van promoveren heen gesleept in onze

eigen Universiteit van Harderwijk. Ik heb zo’n zin in wat we samen nog allemaal meer gaan

doen!

Harderwijk, juli 2016


About the author


226

ABOUT THE AUTHOR

Rosa Ymkje Arends was born in Burum, The Netherlands, on October 24th 1984. In 2003

she finished secondary education at the Lauwers College in Buitenpost and commenced

her studies in psychology at the University of Groningen. After receiving her Bachelor of

Science degree in 2007, Roos followed courses in medical anthropology at the University of

Amsterdam as part of her master’s degree in psychology at the University of Groningen. In

2009 Roos received her Master of Science in Cross-cultural Health Psychology. In February

2010, Roos started working as a Ph.D. candidate at the department of Psychology, Health &

Technology of the University of Twente, The Netherlands, in collaboration with the Arthritis

Centre Twente of the Medisch Spectrum Twente. Her Ph.D. project ‘Goal management:

a way to successfully adapt to arthritis’ was supervised by prof. dr. Mart van de Laar, dr.

Christina Bode and dr. Erik Taal. In 2015, the European League Against Rheumatism (EULAR)

awarded Roos an Abstract Award for her work described in Chapter 3 of this thesis for its

valuable contribution to the field of rheumatology. The results of the Ph.D. project are

presented in this thesis. She currently works as a lecturer at the Nursing department of

the NHL University of Applied Science in Leeuwarden, and as consultant and trainer for

Essenburgh Training & Consultancy, leading courses for the prevention of psychotrauma and

leadership development.


227

ABOUT THE AUTHOR

List of Publications

Arends, R. Y., Bode, C., Taal, E., & Van de Laar, M. A. F. J. (Submitted). A goal management intervention

for patients with polyarthritis and mild depressive symptoms: A quasi-experimental study.

Arends, R. Y., Bode, C., Taal, E., & Van de Laar, M. A. F. J. (Submitted). A mixed-methods process evaluation

of a goal management intervention for patients with polyarthritis.

Arends, R. Y., Bode, C., Taal, E., & van de Laar, M. A. F. J. (2016). The longitudinal relation between

patterns of goal management and psychological health in people with arthritis: The need for

adaptive flexibility. British Journal of Health Psychology, 21(2), 469-489. doi:10.1111/bjhp.12182

Arends, R. Y., Bode, C., Taal, E., & Van de Laar, M. A. F. J. (2015). Exploring preferences for domain-specific

goal management in patients with polyarthritis: What to do when an important goal becomes

threatened? Rheumatology International, 35(11), 1895-1907. doi:10.1007/s00296-015-3336-8

Valentijn, P. P., Ruwaard, D., Vrijhoef, H. J. M., de Bont, A., Arends, R. Y., & Bruijnzeels, M. A. (2015).

Collaboration processes and perceived effectiveness of integrated care projects in primary care: A

longitudinal mixed-methods study. BMC Health Services Research. doi:10.1186/s12913-015-1125-4

Valentijn, P. P., Vrijhoef, H. J., Ruwaard, D., Boesveld, I., Arends, R. Y., & Bruijnzeels, M. A. (2015). Towards

an international taxonomy of integrated primary care: a Delphi consensus approach. BMC Fam

Pract, 16, 64. doi:10.1186/s12875-015-0278-x

Valentijn, P. P., Vrijhoef, H. J., Ruwaard, D., de Bont, A., Arends, R. Y., & Bruijnzeels, M. A. (2015).

Exploring the success of an integrated primary care partnership: a longitudinal study of collaboration

processes. BMC Health Serv Res, 15, 32. doi:10.1186/s12913-014-0634-x

Bode, C., & Arends, R. Y. (2014). Optimale ontwikkeling, persoonlijke doelen en zelfregulatie. In E.

Bohlmeijer & L. Bolier (Eds.), Handboek Positieve Psychologie. Theorie, onderzoek en toepassingen.

(pp. 139 - 152). Amsterdam: Boom.

Arends, R. Y., Bode, C., Taal, E., & Van de Laar, M. A. F. J. (2013a). A goal management intervention for

polyarthritis patients: Rationale and design of a randomized controlled trial. BMC musculoskeletal

disorders, 14, 239. doi:10.1186/1471-2474-14-239

Arends, R. Y., Bode, C., Taal, E., & Van de Laar, M. A. F. J. (2013b). The role of goal management for

successful adaptation to arthritis. Patient Education and Counseling, 93(1), 130-138. doi:10.1016/j.

pec.2013.04.022

Arends, R. Y., Bode, C., Taal, E., & Van de Laar, M. A. F. J. (2012). Doelbewust! Trainershandleiding

& Deelnemersmateriaal [Right on Target. Trainer’s Guide and Participants’ Material]. Enschede:

Universiteit Twente & Reumacentrum Twente.



LIVING A GOOD LIFE WITH ARTHRITISMANAGING PERSONAL GOALS TO IMPROVE PSYCHOLOGICAL HEALTH

Roos Y. Arends

LIVIN

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LIFE W

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PRO

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oos Y. A

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Rosa (Roos) Ymkje Arends holds a Master of Science in Psychology and com-

pleted her Ph.D. at the Department of Psychology, Health and Technology at the

University of Twente, The Netherlands. Her Ph.D. thesis focuses on the role of

goal management for the psychological health of people with arthritis.

The thesis describes the relationship between goal management and psycholo-

gical adaptation to arthritis and the development and evaluation of a goal ma-

nagement programme for people with arthritis and mild depressive symptoms.

Concept_Cover_Roos-Arends2.indd 1 29-08-16 13:53

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living a good life with arthritis