Effectiveness of Relaxation Training for Anxiety and Depression in Family Caregivers of Long-term Stroke

Survivors

Jenny Csecs

Submitted for the Degree of

Doctor of Psychology(Clinical Psychology)

School of PsychologyFaculty of Health and Medical Sciences

University of SurreyGuildford, SurreyUnited KingdomSeptember 2019

1

Major Research Project (MRP) Empirical Paper Abstract

Objectives: Anxiety and depression are commonly experienced by caregivers of

stroke survivors. However, interventions which directly target mood are limited and

no recommendations for treatment of anxiety and depression of caregivers of stroke

survivors currently exist. This study aimed to assess the effectiveness of self-help

relaxation training for anxiety, depression and coping in caregivers of stroke

survivors. Additional aims were to explore whether participants followed the

proposed structure of the relaxation training and whether their experience replicated

effects other populations have reported in the literature in relation to using relaxation

training. Method: This mixed methods study adopted a repeated measures within-

participant design assessing anxiety, depression and coping at three time points (Pre-

1, Pre-2 and Post; N = 18 caregivers of stroke survivors). Post-intervention, semi-

structured interview data were also collected and analysed using deductive thematic

analysis. Results: Quantitative outcome measures showed significant improvement

post-intervention in anxiety, depression and coping in relation to managing stress.

Managing Events/Problem-solving and Managing Perceptions/Meanings coping

scores showed no significant change post-intervention. Qualitative data supported the

quantitative findings, and suggested that participants generally followed the proposed

structure of the relaxation training and reported similar effects as found in the

literature. Conclusions: This study supports the use of self-help relaxation training for

caregivers of stroke survivors in terms of relieving anxiety and depression. Follow-up

research is required to assess whether the effects are maintained and to determine

whether there are factors which could influence the likelihood of change.

Key words: stroke caregivers, anxiety, depression, relaxation training

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Acknowledgements

Firstly, thank you to Dr. Hannah Thompson for all of your support and guidance

throughout my research project. I greatly appreciate how much you believed in my

idea from the beginning and wholly supported me to bring it to fruition. Thank you

also to Dr. Laura Simonds for your thoughtful contributions throughout this piece of

work, for providing much needed clarity whenever needed and for helping me to

continue enjoying the process of completing my thesis.

To all of the caregivers who dedicated time in their incredibly busy and full lives to

take part my study. This simply would not have been possible without you.

Thanks also goes to my various placement supervisors and tutors, including Dr. Nan

Holmes, who have provided me with such enriching experiences and have given their

time and attention for my supervision and personal reflection – especially when fully

embodying what it means to be a person and a professional. I would also like to thank

the people I have worked with clinically during these placements, who have been a

privilege to work with and whom I have learnt so much from.

Coursemates, your support and unfaltering motivating presence have been crucial

throughout. The ‘hot water trips’ definitely have provided lovely welcome breaks!

To my family and friends, thank you for your continued encouragement to keep

working, positivity and for listening absolutely whenever I needed you to. Your

keenness to listen and interest in my work has been deeply valued, as have our chats,

laughs and our fun catch-ups! Words simply cannot express how grateful I am to have

your support in every way possible. Lastly, to my mum for encouraging me to follow

my intuition and for always believing in me.

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Table of Contents

Part 1: Research - MRP Empirical Paper

Abstract

Introduction

Method

Results

Discussion

References

Appendices

p. 5

p. 6

p. 7

p. 14

p. 28

p. 53

p. 63

p. 81

Part 2: MRP Literature Review

Abstract

Introduction

Method

Results

Discussion

References

Appendices

p. 157

p. 158

p. 159

p. 163

p. 168

p. 196

p. 205

p. 219

Part 3: Clinical Experience p. 235

Part 4: Assessments p. 238

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Part 1: Research

MRP Empirical Paper

Effectiveness of Relaxation Training for Anxiety and Depression in Family

Caregivers of Long-term Stroke Survivors

Word count: 9990

(excluding Abstract, Tables and Figures, References and Appendix)

5

Abstract

Objectives: Anxiety and depression are commonly experienced by caregivers of

stroke survivors. However, interventions which directly target mood are limited and

no recommendations for treatment of anxiety and depression of caregivers of stroke

survivors currently exist. This study aimed to assess the effectiveness of self-help

relaxation training for anxiety, depression and coping in caregivers of stroke

survivors. Additional aims were to explore whether participants followed the

proposed structure of the relaxation training and whether their experience replicated

effects other populations have reported in the literature in relation to using relaxation

training. Method: This mixed methods study adopted a repeated measures within-

participant design assessing anxiety, depression and coping at three time points (Pre-

1, Pre-2 and Post; N = 18 caregivers of stroke survivors). Post-intervention, semi-

structured interview data were also collected and analysed using deductive thematic

analysis. Results: Quantitative outcome measures showed significant improvement

post-intervention in anxiety, depression and coping in relation to managing stress.

Managing Events/Problem-solving and Managing Perceptions/Meanings coping

scores showed no significant change post-intervention. Qualitative data supported the

quantitative findings, and suggested that participants generally followed the proposed

structure of the relaxation training and reported similar effects as found in the

literature. Conclusions: This study supports the use of self-help relaxation training for

caregivers of stroke survivors in terms of relieving anxiety and depression. Follow-up

research is required to assess whether the effects are maintained and to determine

whether there are factors which could influence the likelihood of change.

Key words: stroke caregivers, anxiety, depression, relaxation training

6

Introduction

Long-term disability following stroke is common in the UK. Approximately two-

thirds of stroke survivors who leave hospital have a disability (Adamson, Beswick, &

Ebrahim, 2004; Stroke Association, 2018). As 80% of stroke survivors then return

home (Han & Haley, 1999), family members often adopt caregiving roles at home to

support stroke survivors’ needs, in an unpaid capacity (i.e. informal caregivers,

Greenwood & Mackenzie, 2010; Jaracz et al., 2015). However, many caregivers feel

ill-equipped for the role (Kalra et al., 2004) due to the significant number of possible

changes resultant from stroke, including behavioural, cognitive, physical and

emotional changes (e.g., loss of independence, paralysis and mood difficulties, Han &

Haley, 2009).

Given the likely significant changes following stroke and the greatly

demanding nature of the caregiving role, the negative effects of caregiving for stroke

survivors are well documented (Alexander & Wilz, 2010; Greenwood & Mackenzie,

2010; Jaracz et al., 2015). Systematic reviews have demonstrated high levels of

burden (i.e. the perceived weight held by caregivers’ due to fulfilling their caregiving

role) and depression (i.e. 25–54% and 34–52% respectively, Han & Haley, 1999;

Rigby, Gubitz, & Phillips, 2009). However, surprisingly, in comparison to burden and

depression, stroke caregiver anxiety has been investigated much less. This is in spite

of a recent review finding that anxiety is present in a similar number of caregivers:

11–51% (Choi-Kwon, Kim, Kwon, & Kim, 2005; Csecs, Thompson, & Simonds,

2019; Greenwood & Mackenzie, 2010).

There have been some attempts to use interventions to reduce caregiver

anxiety, but minimal evidence exists (Cheng, Chair, & Chau, 2014; Greenwood &

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Mackenzie, 2010; White, Cantu, & Trevino, 2015). Predominantly interventions have

consisted of education, information provision and skill-building, and to a lesser

extent, psychosocial support (Brereton, Carroll, & Barnston, 2007; Eldred & Sykes,

2008; McCurley et al., 2018; Smith, Forster, & Young, 2009). White, Cantu, and

Trevino (2015) concluded from 18 randomised controlled trials that interventions

which included skill-building (i.e. ‘an intervention that equipped the caregiver with

skills to provide care to the stroke survivor or skills to cope with the caregiving role’

p. 87) as a component were more likely to show a significant improvement on

psychological distress, caregiver burden and quality of life outcomes. However, the

benefits related to anxiety were limited (but see Kalra et al., 2004). Moreover, in a

Cochrane review, whilst information provision was shown to significantly increase

caregiver knowledge (standardized mean difference of 0.74; 95% CI: 0.06, 1.43), no

impact on mood (i.e. caregiver anxiety or emotional distress) was observed (Smith,

Forster, & Young, 2009). This finding of no significant change in mood was

supported in an earlier systematic review of psychosocial interventions, which

involved education provision, for stroke caregivers (Eldred & Sykes, 2008). Similarly,

a further Cochrane review in 2011 stated that there was insufficient data to support or

refute the use of ‘information and support’ or psychoeducational interventions to help

anxiety, compared to no intervention or usual care (Legg et al., 2011). Therefore, it

appears that a different intervention from the current skill-building options or

information provision is required to help caregivers’ anxiety.

Additionally, most of the research involving interventions for stroke

caregivers has been conducted within 1-year post-stroke (Brereton et al., 2007; White

et al., 2015), which means that appropriate intervention beyond this time is unknown.

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Therefore, given the high levels of persistent anxiety (e.g. 19% of 88 stroke caregivers

5 years post-stroke scored in the clinical range for anxiety, Jaracz et al., 2015), it is

imperative to consider what intervention may be appropriate for stroke caregivers

beyond 1-year post-stroke as demands of caregiving are likely to change over time

(Macnamara, Gummow, Goka, & Gregg, 1990).

Brereton, Carroll, and Barnston (2007) found that the majority of interventions

(5/8) for stroke caregivers stated they were underpinned by stress-coping models

(problem-solving [n = 2], nurse-led support group [n = 2] and psychoeducation [n =

1]), whereby the mechanism of change in caregiver stress is often guided by this

model (Hartke & King, 2003). However, these were not specific interventions for

anxiety and did not directly target the physiological stress response. The stress-coping

model posits that stress arises when a person’s external demands outweigh their

perceived internal resources (Goodman & Ley, 2012). Therefore, coping is defined as

the ability to manage particular demands that are appraised as exceeding a person’s

resources and/or is possibly taxing, by continuously changing thoughts and actions

(Lazarus & Folkman 1984; Matthieu & Ivanoff, 2006). When stress occurs, this can

lead to increased physiological arousal which, should it become too high, can

negatively impact well-being and the person’s perceived and actual ability to cope

(Berto, 2014; Yerkes & Dodson, 1908). Henceforth, the stress-coping model could be

used to inform specific intervention for caregiver anxiety.

Relaxation training designed to decrease physiological arousal could be used

to counteract the stress response of anxiety and in turn help caregivers cope (Esch,

Fricchione, & Stefano, 2003; Steinhardt & Dolbier, 2008). Relaxation is defined by a

combination of interrelated physiological mechanisms and changes that are produced

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when individuals complete a repetitive physical or mental activity, and do not engage

with distracting thoughts (Manzoni, Pagnini, Castelnuovo, & Molinari, 2008). Two

widely researched types of relaxation training, which involve repetitive physical or

mental activity to elicit a relaxation response, are: progressive muscle relaxation

(PMR) and autogenic relaxation (AR). PMR involves progressively tensing and

relaxing principle muscle groups in a specific order throughout the body (Jacobson,

1987), with the idea that over time relaxing the muscles will lead to a reduction of

impulses along motor and associated parts of the nervous system. AR involves

individuals removing external stimuli from their awareness and focusing on their

body by repeating psychophysiologically adapted statements to themselves (e.g. ‘my

heartbeat is calm and regular’, Kanji, 1997).

Effectiveness of PMR and AR has been shown in numerous populations: those

with physical health conditions, mental health conditions, and specific subpopulations

such as stroke survivors (Manzoni et al., 2008; Pagnini, Manzoni, Castelnuovo, &

Molnari, 2013). For example, stroke survivors (N = 21) living in the community were

asked to listen to a relaxation CD, which involved PMR and AR exercises for 20

minutes five times a week, for at least one month (Golding, Kneebone, & Fife-Schaw,

2016). Survivors who participated in the relaxation training were significantly more

likely to report reduced anxiety (measured using the Hospital Anxiety and Depression

Scale), compared to controls (p < 0.01, d = 1.48). These results also held at 1-year

follow-up: anxiety ratings reduced significantly between pre-intervention and 1-year

follow-up (p < 0.001, Golding, Fife-Schaw, & Kneebone, 2017). A self-help

relaxation intervention involving PMR and AR has not been investigated with

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caregivers, but it presents a promising approach as it has successfully reduced anxiety

in a range of populations, including stroke survivors.

Stroke caregivers commonly report a lack of support available long-term (i.e.

once acute care has finished, Jaracz et al., 2015; Martin, Yip, Hearty, Marietta, & Hill,

2002; McKevitt, Redfern, Mold, & Wolfe, 2004; Young, Murray, & Forster, 2003).

Subsequently, effective treatments for high levels of anxiety need to be sought in

terms of psychological outcome and feasibility due to limited resources and,

therefore, financial cost. Self-help approaches may present a realistic option to meet

these requirements. ‘Self-help’ refers to a psychological treatment where individuals

follow a standardised treatment protocol at home, which they work through generally

independently (Cujipers & Schuurmans, 2007). A guide is provided which explains

the steps to follow to apply a psychological treatment to themselves. For example, as

discussed, stroke survivors found using a self-help relaxation CD reduced their

anxiety effectively (Golding et al., 2016); this was also shown to be cost-effective

compared to other anxiety treatments, which is increasingly important given the

growing constraints on the health service in the UK (Oddy & da Silva Ramos, 2013).

Self-help relaxation could also address some of the barriers to accessing

support stroke caregivers have expressed. For example, in recent semi-structured

interviews with 24 survivor-caregiver dyads, anticipated difficulties with attending

appointments in hospitals due to challenges finding time were reported (McCurley et

al., 2018). Flexibility in intervention timing and mode of delivery were suggested as

solutions to this, and were predicted to reduce stress associated with attending

appointments. Thus, having an intervention which caregivers could access easily and

complete at home could be beneficial. Furthermore, self-help relaxation was chosen

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because it was considered simple to learn and use in a flexible way, and it was not

dependent on using the internet (e.g. self-guided internet-delivered cognitive-

behavioural therapy, Titov et al., 2016), which was considered important for older

adult caregivers due to their limited time often reported and possible accessibility to

equipment. Self-help relaxation training has also been shown to be usable by older

adults (Golding et al., 2016), which other self-help approaches may not be as suitable

for without additional teaching and support (e.g. mindfulness-based interventions as

high drop-out can be common, Geiger et al., 2016). Additionally, this could be

important because ensuring caregivers have the right support has implications for the

outcome of the stroke survivor also (White et al., 2015). Research has shown that

healthier and better supported caregivers can improve both stroke survivors’ long-

term rehabilitation outcome and their quality of life (Glass, Matchar, Belyea, &

Feussner, 1993; Greenwood & Mackenzie, 2010; van Exel et al., 2004; Visser-Meily,

van Heugten, Post, Schepers, & Lindeman, 2005). Given these inter-relational

findings, recently a dyadic framework has been proposed for understanding post-

stroke distress, whereby caregiver and stroke survivor functioning should be

considered together (Bakas, McCarthy & Miller, 2017; McCurley et al., 2018).

Therefore, supporting caregivers of stroke survivors could be beneficial for both the

stroke survivors they support and themselves.

Self-help relaxation incorporating PMR and AR exercises could also be an

appropriate intervention to address depression and improve coping in stroke

caregivers. This is due to the significantly high co-occurrence between anxiety and

depression (50–72% of patients experience an anxiety and a depressive disorder

concurrently, Hirschfield, 2001; Kessler et al., 2003; Zhou et al., 2017). Therefore, it

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is possible that if anxiety improves, depression could also. Evidence for PMR

suggests that muscles become more relaxed, attention improves and thinking reduces

(Jacobson, 1987; Scheufele, 2000). These findings could suggest that depression may

improve because people may attend less to possible negative thoughts (Asare &

Danquah, 2017). Furthermore, as considerable burden is experienced by high numbers

of stroke caregivers, such that a caregiver’s external demands outweighs their

perceived internal resources (i.e. caregivers perceive they are unable to cope with the

situation), the stress-coping model could be used to hypothesise that if relaxation

exercises can reduce caregiver anxiety and thus physiological arousal/stress, then their

perceived and actual ability to cope should improve. To support this hypothesis, Kanji

(1997) reported that using AR leads to an improvement in coping abilities. Evidence

further supporting this found that family caregivers of people with Alzheimer’s

disease and caregivers of people with lung cancer, who completed relaxation training

which included PMR exercises, subsequently reported significant improvement in

coping skills (Fisher & Laschinger, 2001; Porter et al., 2011), although there was

some additional training provided in coping skills so it would be useful to discern the

specific effects of relaxation training.

To further investigate the effectiveness of PMR and AR in addressing anxiety,

depression and coping, it seemed pertinent to consider the process by which this may

occur. Mixed methods approaches can provide greater insight into and breadth of

findings (Curry et al., 2013), and help discern why findings occurred as quantitative

outcomes can be explored qualitatively in more depth (Halcomb & Hickman, 2015;

Medical Research Council, 2019). Using mixed methods can also allow for less bias

due to triangulating data using multiple methods (Jick, 1979; Johnstone, 2004).

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Aims and Hypotheses

This study investigated the effectiveness of a PMR and AR self-help

relaxation intervention for stroke caregivers. The main hypothesis was that anxiety

would significantly reduce following one month of relaxation training. Due to the

high correlation between anxiety and depression, the secondary hypothesis was that

depression would significantly reduce after completing relaxation training. Based on

the stress model, the third hypothesis was that coping would significantly improve

after relaxation intervention. Additional aims of the study were, using qualitative

methods, to gather information on potential processes underpinning outcomes and the

extent to which these were consistent with the theoretical basis of PMR and AR and

previous research. This included exploration of the usage of relaxation training and

participants’ perception of change.

Method

Design

This study adopted a repeated measures within-participant design with

planned assessment at three time points to examine the effect of self-help relaxation

(independent variable) on anxiety, depression and coping (dependent variables).

Participants were initially assessed (Pre-1) and then again one month later (Pre-2) to

create a baseline measurement, before they received intervention (the self-help

relaxation audio). The measurement at Pre-1 and Pre-2 provided a control for time in

relation to possible change in anxiety, depression or coping, expectancy effects or

contact with the researchers (Dettmers et al., 2002). The baseline (Pre-1 and Pre-2)

measurement was also completed to establish whether there was measurement

14

stability (defined as no significant difference between Pre-1 and Pre-2 scores,

Szaflarski et al., 2006) before the intervention. Participants listened to the audio for

one month and then were assessed again (Post). All participants were caregivers and

their stroke survivors, who lived in the community.

Recruitment

Participants were recruited through opportunity sampling. A letter (see

Appendix B) and information sheets (Appendix C), giving an outline of the project

and the researchers’ contact details, were sent out to caregivers of stroke survivors

who had participated in research previously with one of the authors (N = 42).

Potential participants were asked to contact the researchers if they were interested in

participating. Caregivers were then telephoned approximately one-month later by the

main researcher to seek interest. All participants were clearly informed about the

purpose of the study and given the opportunity to ask questions pertaining to the

research. Participants were told that there was no obligation to participate. It was

emphasised that participants could withdraw from the study at any point should they

wish to without any adverse consequences. Consent forms were sent out in the post to

interested participants (Appendix D). Consent was also sought from stroke survivors

of caregivers, to collect some demographic information and details about the stroke

they had.

Non-NHS stroke groups in the South of England were also approached

directly, via telephone or email, and asked to circulate information sheets to group

members. Potential participants were asked to contact the researcher via telephone,

email or post. Following contact with the researcher, consent forms were sent out to

interested participants.

15

A priori power analysis was conducted using G*Power 3.1 (Faul, Erdfelder,

Lang, & Buchner, 2007) to determine the required sample size and thus enable

adequate power to be achieved. This was calculated using data from previous work of

this nature (Golding et al., 2016). The paper presented means and standard deviations

of participants who completed the Hospital Anxiety and Depression scale on four

occasions, from which a between-group correlation of -0.68 was derived. Golding,

Kneebone and Fife-Schaw (2016) reported an effect size of d = 1.48, this was

converted to f = .74 for use in the power calculation. Utilising these values with power

at .80, α = .05 for use of a repeated measure ANOVA, G*Power suggested a sample

of 12 was required (Appendix E).

Participants

Participants were family caregivers of stroke survivors living in the

community. Inclusion criteria were that caregivers had to be aged 18 or above, they

did not get paid for caring for the stroke survivor, they were contactable by telephone

and had adequate hearing, they had adequate written and/or spoken English to

complete outcome measures, and had access to a technological device from which

they could listen to the relaxation training. Exclusion criteria were if the caregiver was

receiving psychological intervention, participating in research which involved

psychological intervention, and pregnancy (due to insurance purposes). To maximise

variability in the sample, a pre-defined clinical cut-off of anxiety was not used.

Measures and Materials

A variety of published measures were used, which have all been used with

stroke caregivers previously. The Hospital Anxiety and Depression Scale (HADS),

Beck Anxiety Inventory (BAI) and Carer’s Assessment of Management Index

(CAMI), were used to assess outcomes (i.e. test hypotheses, see Table 1). The BAI

16

was used to measure anxiety, in addition to the HADS-A subscale, in order to increase

construct validity because the HADS-A neglects to assess some somatic complaints of

anxiety (Hansson, Chotai, Nordstöm, & Bodlund, 2009; Muntingh et al., 2011). Good

reliability and validity are evident for each measure described, with more detailed

information shown in Appendix F, which includes more in-depth scoring information

and rationale for usage.

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Table 1

Measures used to test hypotheses

InstrumentReference Completion time

Construct measured; items and scale

Scoring and interpretation

Psychometrics

Hospital Anxiety and Depression Scale (HADS, Zigmond & Snaith, 1983)5 minutes

Two 7-item subscales measure anxiety (HADS-A) and depression (HADS-D).

Rated each item in relation to frequency experienced in the past week on a 4-point Likert

scale, e.g. ‘I get sudden feelings of panic’ from ‘0 – not at all’ to ‘3 – very often

indeed’.

Total score for each subscale is 21. Higher

scores are indicative of greater levels of anxiety and

depression.

Good internal consistency of both subscales (HADS-

A Cronbach’s alpha = 0.83, HADS-D

Cronbach’s alpha = 0.82).Good concurrent validity with other measures of anxiety and depression, and good sensitivity and specificity in relation to

clinical caseness (Bjelland, Dahl, Haug, &

Neckelmann, 2002).

Beck Anxiety Inventory (BAI, Beck & Steer, 19935 minutes

21-item measure of anxiety, comprising of descriptive

statements of anxiety symptoms.

Rated each item in relation to how much they have been bothered by it over the past week (e.g. shaky) on a 4-

point Likert scale, e.g. ‘0 – not at all’ to ‘3 – severely, I

could barely stand it’.

Higher scores suggest greater

the anxiety symptomology,

with a total possible score

of 63.

High internal consistency (Cronbach’s alpha = 0.92, Beck, Epstein, Brown, &

Steer, 1988), and reasonable test re-test

reliability of 0.62 and 0.93 at 7- and 1-week intervals respectively. Correlated with other widely used

measures of anxiety (e.g., State-Trait Anxiety

Inventory, r = 0.47–0.58, Beck & Steer, 1993) thus good concurrent validity

was illustrated (Portney & Watkins, 2007).

The Carers’ Assessment of Managing Index (CAMI, Nolan, Keady, & Grant, 1995)10 minutes (Harvey et al., 2005)

Caregivers rate 38 statements about coping strategies they

use and how helpful they find them. Strategies (e.g. having a good cry) are rated on a 4-point Likert scale from ‘1 – I

do not use this’, ‘2 – Not really helpful’, ‘3 – Quite

helpful’ to ‘4 – Very helpful’

Scores range from 38–152, with higher

scores suggestive of more effective

coping.

Good internal consistency for the CAMI was

reported as 0.86 (i.e. Cronbach’s alpha, Nolan

et al., 1995) and more recently as 0.91 (Jarvis, Worth, & Porter, 2006), and, acceptable for the

subscales 0.64-0.69 (Llewellyn, Gething,

18

(Yeh & Bull, 2012). The CAMI has three subscales: Managing

Events/Problem Solving (15 items), Managing

Meanings/Perceptions (14 items) and Managing Stress

(9 items).

Kendig, & Cant, 2003). Good content and

construct validity has been argued as the measure was based on the transactional model of stress and coping

(Harvey et al., 2005; Nolan, Grant, & Keady,

1998).

The Caregiver Strain Index (CSI), RAND 36-Item Health Survey 1.0 (RAND

SF-36), Medical Outcomes Support Survey (MOS-SSS) and the Modified Rankin

Scale (mRS) were used to enable a detailed description of the sample (see Table 2).

The only additional measure not used previously with caregivers was an adapted mRS

of one item. This was used to provide an estimate of stroke survivors’ mental

functioning (i.e. their cognitive ability) rated by their caregivers, which was also

hoped to not contribute significantly to testing fatigue. A detailed description of the

sample was provided due to the paucity of research involving long-term caregivers of

stroke survivors (Jaracz et al., 2015) and to allow for consistent comparisons to be

made in future research. All standardised measures included in the study were suitable

to be administered by researchers (e.g. through a telephone call) and/or completed

self-report (e.g. via online survey or postal questionnaire); these methods of measure

administration have been conducted in published research previously, predominantly

involving caregivers.

A copy of all of the measures were shared with members of the Service User

and Carer Advisory Group in Clinical Psychology at the University of Surrey.

Feedback was obtained before the measures were finalised for usage in the study.

Group members were asked what they thought of the measures and the number of

them being used. Members thought asking that amount of questions at Pre-1 was

19

appropriate, as long as the purpose of collecting the information was clearly

described. Members also said they found it useful knowing that measures had been

published and used in research previously, as this provided confidence in the study in

relation to it being thoughtful and considered.

20

Table 2

Measures used to provide a detailed description of the sample

InstrumentCompletion time

Construct measured; items and scale Scoring and interpretation

Psychometrics

The Caregiver Strain Index (Robinson, 1983; Thornton & Travis, 2003)5 minutes

13 items related to the demands of caregiving, such as ‘It is a financial strain’ which caregivers rated ‘Yes’ or ‘No’.

Scores range from 0–13; the higher the scores, the more considerable the

burden experienced.

Good internal consistency (Cronbach’s alpha = .86, Robinson, 1983). Construct validity of the

CSI established when correlated with other measures of distress in caregivers.

RAND 36-Item Health Survey 1.0 (RAND Corporation, 2018)10 minutes

Quality of life measure with eight subscales and a single item measuring perceived change in health (Ware &

Sherbourne, 1992): Physical Functioning, Bodily Pain, Role Limitations due to Physical Health Problems, Role Limitations due to Personal or Emotional Problems,

Emotional Well-being, Social Functioning, Energy/Fatigue and General Health Perceptions. Options rated on a Likert

scale, e.g. ‘in general would you say your health is: excellent, very good, good, fair or poor’.

Scores are coded on a 0 to 100 range and items in the same

scale averaged together. Higher

scores are indicative of a more positive

health state.

Good to excellent internal consistency demonstrated for all of the subscales (Cronbach’s alpha = 0.78–0.93, Ware & Sherbourne, 1992). Good discriminant and construct validity was

shown by relating scores to measures of medical and psychiatric conditions (McHorney, Ware,

Rogers, Raczek, & Lu, 1992).

21

Medical Outcomes Support Survey (Sherbourne & Stewart, 1991)5 minutes

14-items of the original 19-item scale were rated which measure dimensions of social support:

Emotional/Informational Support, Affectionate Support and Positive Social Interaction. Tangible Support subscale and

additional item were omitted due to these not being relevant for caregivers. Rated item (e.g. ‘someone to have good time with’) on a scale ranging from ‘None of the time’ to ‘All of

the time’.

Summed scores range from 14–70. Higher

scores represent greater perceived

social support.

Excellent internal consistency has been evidenced (Cronbach’s alphas for the subscales > 0.90, Sherbourne & Stewart, 1991). Results also showed that the MOS-SSS has high convergent and discriminant validity with relevant measures

of quality of life.

Modified Rankin Scale (Sulter, Steen, & Keyser, 1999)1 minute

Used to obtain an estimate of the stroke survivor’s physical functioning, (i.e. the level of physical disability and dependency in activities of daily living after the

stroke, Choi-Kwon et al., 2005; Wan-Fei et al., 2017). Caregivers rated this on a one-item 6-point Likert scale, ranging from ‘No support at all’ to ‘Severe disability;

bedridden, incontinent and requiring constant nursing care and attention’.

Excellent test re-test reliability presented (k = 0.81–0.95, Banks & Marotta, 2007), and

moderate inter-rater reliability (k = 0.56–0.78). Construct validity affirmed through mRS scores being related to measures of severity of stroke.

Convergent validity shown through comparisons with other scales used to assess stroke survivors

(r = 0.89, Lai & Duncan, 1999).

Modified Rankin Scale adapted1 minute

The original mRS was adapted to provide an estimate of stroke survivors’ mental functioning, in terms of cognitive ability. Caregivers were asked to rate stroke

survivors’ in relation to the support they required with tasks requiring cognitive functioning irrespective of physical ability, such as everyday tasks (e.g. responding to instructions accurately). Ratings were on a 6-point Likert scale, adapted from the

mRS physical functioning categories, ranging from ‘0 – No support at all’, ‘3 – Moderate disability; requiring some help’ to ‘5 – Severe disability; requiring constant

care and attention’.

Not established: the adaptation was made to provide an estimate of cognitive functioning

ability, which was feasible for the caregiver to rate and would not contribute significantly

towards testing fatigue.

22

Background information form.

This questionnaire, adapted from the background information form used in Golding et

al. (2016), was completed by each participant at Pre-1 (see Appendix G). This

included questions regarding demographics, living and caring situation, major

diagnoses, current medication and whether they had used psychological therapy

previously.

A shorter version of this questionnaire was completed by each stroke survivor

at Pre-1 who consented to being part of the study (see Appendix H). Demographic

questions and two questions about the stroke they had were asked.

Relaxation training.

The relaxation training followed the same scripts as used in Golding et al.

(2016). It comprised of three tracks (see Appendix I), 1) introduction to progressive

muscle relaxation (PMR, approximately 1 minute). Participants could omit this when

they thought that they no longer needed an introduction; 2) PMR – participants were

invited to progressively tense and relax muscle groups (approximately 9 minutes); and

3) Autogenic relaxation (AR) – participants were asked to repeat calming statements

to themselves, to focus on their breath and attend to different aspects of the body (e.g.

heart beat) and experience them in certain ways (e.g., heavy, relaxed). The AR

training followed the script as described in Winkler, James, Fatovich and Underwood

(1982), with the defined duration of 12–20 minutes.

Participants were asked to practise the training five times per week for one

month. Golding et al. (2016) found this to be effective in reducing anxiety. Moreover,

Manzoni, Pagnini, Castelnuovo, and Molinari’s (2008) review reported those who

practised relaxation techniques of this frequency showed a more substantial reduction

in anxiety, compared with those who completed relaxation over a shorter time period.

23

A one-month intervention period also seemed acceptable for participants in Golding

et al.’s (2016) study as only two participants withdrew from an initial sample size of

21.

Experience of relaxation training form.

This questionnaire, used by Golding et al. (2016), was completed by each

participant over the telephone following completion of the relaxation training

(Appendix J). This enquired about participants’ subjective experiences of using the

training and afforded an opportunity to provide suggestions as to how it could be

improved. Questions included frequency of completing the training, positive and

negative experiences of it, and intention to continue using it.

Ethical Approval

Ethical approval was provided by the Faculty of Health and Medical Sciences

Ethics Committee at the University of Surrey and the Departmental Ethics Committee

at the University of York (Appendix K). Prior to participating in the study, written

consent was obtained from caregivers and stroke survivors. Caregivers had the option

to give written consent if the stroke survivor was unable to write (due to dysgraphia or

other impairments caused by the stroke). Where stroke survivors did not provide

consent, but their caregiver gave consent for themselves, the caregiver was still able

to participate in the study and received the intervention, but the basic information

about the stroke survivor was not included in the study (e.g. time since stroke).

Procedure (Figure 1)

Following receiving the completed consent form(s), participants were asked

screening questions for eligibility (i.e. whether they were receiving psychological

intervention, participating in research which involved psychological intervention or

were pregnant). Eligible participants could select the completion format of the first set

24

of questionnaires (face-to-face, online, post, or telephone) and how they would like to

receive the relaxation intervention (CD or audio file).

Participants were then either sent the questionnaires (HADS, BAI, CAMI,

CSI, RAND SF-36, MOS-SSS and the mRSs) via an online link or in the post with a

stamp addressed envelope, or they were administered by the researcher at a mutually

agreed time (Pre-1). Following this, arrangements were made to telephone

participants one month after they completed these initial questionnaires (Pre-2).

During the telephone call (approximately 20 minutes), participants were asked

to complete the HADS, BAI and CAMI. Calls were used for all participants as they

were considered feasible and had previously been shown to be acceptable to stroke

caregivers when completing outcome measures (Hoffmann, Worrall, Eames, & Ryan,

2010). Moreover, missing data could be minimised and the likelihood of a good

response rate increased in comparison to self-completed measures (either online or

postal, Fan & Yan, 2010; Golding et al., 2016; Harris, Weinberger, & Tierney, 1997).

Participants were then sent the relaxation audio. Written guidance for the relaxation

training and a one-month diary sheet for participants to complete were provided

(Appendix L). Participants were encouraged to contact the researcher if any concerns

or questions arose during the study. This occurred once (a participant received a

damaged relaxation CD).

One month later participants were telephoned again (for approximately 30

minutes) to re-administer the HADS, BAI and CAMI (Post). They were also asked

questions about their experience of using the relaxation training over the previous

month.

25

Figure 1. Study procedure

26

Data Preparation for Statistical Analyses

Data used in hypotheses testing were examined for missing values. There was

< 0.01% missing data, with no clear pattern of non-responses such that it was

assumed they were missing at random. Therefore, item-level imputation was utilised

where there were fewer than 20% of item responses missing for each participant on a

specific scale (Mazza, Enders, & Ruehlman, 2015), with the missing item values

replaced by averaging the available items from other participants’ responses on those

specific items. Item-level imputation was chosen over mean substitution due to

increased precision and power in this approach demonstrated previously (Gottschall,

West, & Enders, 2012). One participant completed less than 80% of the CAMI at Pre-

1 so this was not included in analyses.

Prior to conducting inferential statistics, test assumptions were checked and

are reported in the Results alongside the inferential statistics utilised.

Qualitative Analysis

Qualitative data from telephone interviews were analysed using deductive

thematic analysis (Crabtree & Miller, 1999). This explored participants’ usage of the

relaxation training and their perception of change. This included assessing whether

participants followed the proposed structure of the relaxation training, and whether

changes were reported similar to those found in previous research. A template of

themes was compiled a priori to achieve this (see Appendix M for full descriptors of

themes) based on the core process components of PMR and AR, and the likely effects

of completion of PMR and AR (see Table 3).

27

Table 3

Core processes of PMR and AR, and the likely effects of completion based on the

literature

PMR based on Jacobson (1987) AR based on Kanji (1997)

Core processes Relaxes a group of muscles which are acquainted in a

certain order (with the principal muscle-groups of the entire

body)

Reduction of exteroceptive and proprioceptive afferent

stimulation, such that training should take place in a quiet room

Practises from day to day tending towards a state in

which quiet is automatically maintained

Mental repetition of psychophysiologically adapted

verbal formulae, whereby mental activity is conceived as ‘passive

concentration’

Likely effects of relaxation training

Releasing the tension of muscles

Counteracting of acute stress or fatigue

Absence of thinking and control of images and attention

Achieve peace of mind

Cope with life’s pressures and improve coping abilities

Note. Reduction of exteroceptive and proprioceptive afferent stimuli refers to the reduction of external stimuli (e.g. noise, Kassab & Alexandre, 2015) and internal stimuli (i.e. stimuli produced and perceived by the person, which includes what is perceived when parts of the body are moved, Proske & Gandevia, 2012)

Interviews were not audio recorded as the main purpose of this data was to

supplement the quantitative data. Once all of the data had been collected, the main

researcher assigned meaning units to what the participants said (i.e. codes, Saldana,

2009) and organised these codes in relation to the themes based on the a priori

framework as discussed above (i.e. in relation to the process and possible effects of

PMR and AR). As the approach was mainly deductive, given the template of themes

that was developed and no audio-recording was completed, this means that a level of

interpretation was present as the main researcher was likely to be attuned to aspects

they were interested in and prioritised recording these. However, any data outside of

28

the template was also included if it was relevant to the aim, such that additional codes

were created for data which did not fit the a priori themes.

Results

Eighteen stroke caregivers, 10 were female and eight were male, were initially

recruited, aged between 42 and 74 (mean = 63.7 years; SD = 8.6). Most identified as

White British (n = 17). Other demographic characteristics and information about their

living and caring situation is presented in Table 4. Three caregivers withdrew from

the study between Pre-2 and Post, all of which were due to health reasons.

29

Table 4

Sociodemographic characteristics of caregivers at baseline (N = 18)

Characteristics n %Age (mean, SD) 63.7 (8.6) Range: 42.4–74.2Sex, female 10 56Ethnic group, any White background 18 100Marital status

Married 14 78Partner 2 11Divorced 1 6Not reported 1 6

JobEmployed 4 22Self-employed 1 6Retired 6 33Retired/stopped work to become a caregiver

6 33

Unable to work 1 6Highest education achieved

Secondary school 8 44Sixth form 4 22Bachelor’s degree 3 17Other 3 17

Caregiver living with survivor 16 89Caregiver relationship with survivor

Spouse/partner 16 89Parent 2 11

Hours spent caregiving per day (mean, SD) 14.1 (9.1) Range: 2–24Duration of being a caregiver (mean in years, SD) 9.4 (3.5) Range: 2–15.7Diagnosed with mental or physical health difficulties

9 50

Not accessing professional support at present 16 89Not accessed psychological therapy previously 13 72Taking medication currently 11 61

Note. SD = standard deviation

Sixteen stroke survivors, nine were female and seven were male, provided

consent for demographic data and information about their stroke to be collected. Most

identified as White British (n = 15). Table 5 details further demographic information

and the estimation of functioning of stroke survivors rated by their caregivers. On

average, it was 11 years (SD = 3.6) since stroke survivors first had a stroke. The

majority of caregivers estimated that they cared for stroke survivors who had a

30

moderately severe physical disability (n = 11, 61%) and a moderately severe to severe

disability in relation to mental functioning (n = 14, 78%).

Table 5

Demographic characteristics of stroke survivors at baseline (N = 16)

Characteristics n %Age (mean, SD) 61.3 (11.5) Range: 41.4–80.3Sex, female 9 56

Highest education achievedSecondary school 4 25Sixth form 3 19Bachelor’s degree 4 25Master’s degree 3 19Other 2 13

Type of strokeIschaemic 8 50Haemorrhagic 2 13Middle cerebral artery 2 13Not known/not reported 4 25

Time since stroke (mean in years, SD) 11.0 (3.6) Range: 2–17.2Caregiver’s estimation of physical functioning

No significant disability despite symptoms

1 6

Slight disability 1 6Moderate disability 1 6Moderately severe disability 11 61Severe disability 4 22

Caregiver’s estimation of mental functioningNo significant disability despite symptoms

1 6

Slight disability 2 11Moderate disability 1 6Moderately severe disability 7 39Severe disability 7 39

Most participants chose to complete the first set of measures online and equal

numbers chose an audio CD and an audio file (Table 6).

31

Table 6

Method participants chose to complete measures at Pre-1 and how they received the

relaxation audio

Method n %Method of questionnaire completion

Online survey

8 44

Postal survey 6 33Telephone 4 22

Method of listening to relaxation audio

CD 9 50Audio file 9 50

Table 7 shows the level of burden, quality of life related to physical and

mental health, and levels of perceived social support rated by caregivers at Pre-1. The

scores suggest that caregivers experienced significant burden. The level of perceived

quality of life in relation to physical health was generally similar to caregivers’

perceived quality of life related to their mental health, with a similar range across the

sample. Much variation was present in relation to perceived social support.

Cronbach’s alpha was calculated for all measures at each time point and this mostly

showed good levels of internal consistency, which were generally similar to levels

found in previous research (> 0.70 and acceptable for the subscales of the CAMI

0.64–0.69 see Table 7, Llewellyn et al., 2003).

32

Table 7

Caregiver burden, quality of life and social support ratings at Pre-1

Scale n (due to missing

data)

Mean (SD)

Range Cronbach’s alpha

Comparison to previous research

Caregiver Strain Index (/13)

18 6.53 (3.83)

0–13 0.84 Similar mean score to caregivers 3-months post-discharge from stroke rehabilitation (mean: 7, Lui, Lee,

Greenwood & Rose, 2012) and 15-months

post-stroke (mean: 5.8, Macnamara et al., 1990)

RAND SF-36 Physical Component Summary /100

17 44.41 (11.27)

23.14–63.48

0.93 Much lower compared to caregivers earlier post-stroke (3-months post-discharge from stroke

rehabilitation: 68.7 and 62.1 respectively, Lui et

al., 2012; average subscale score: 67 1-year post-stroke, Smith et al.,

2004).

RAND SF-36 Mental Component Summary / 100

17 43.38 (11.75)

18.36–60.68

MOS-SSS total /100 16 49.00 (26.07)

7.14–94.64

0.997 Mean scores were similar to a sample of stroke caregivers’ 3-months post-discharge from stroke rehabilitation (43.2–51.5 average

subscale scores, Lui et al., 2012).

MOS-SSS Emotional / Informational Support /100

46.48 (34.61)

0–90.63

MOS-SSS Affectionate Support / 100

59.38 (31.75)

0–100

MOS-SSS Positive Social Interaction / 100

45.31 (23.76)

0–100

Clinical range of CSI ≥ 6

33

Anxiety

The mean and standard deviation were calculated for scores on both scales of

anxiety across the three time points (Table 8). On average before intervention,

participants scored in the clinical range for anxiety on the HADS-A, at a level similar

to stroke caregivers over 1-year post-stroke and 5-years post-stroke reported

previously (mean = 7.7, Dankner et al., 2016; mean = 7.8, Jaracz et al., 2015), and in

the ‘mild anxiety’ range on the BAI. After intervention, on average, scores on the

HADS-A were in the normal range (mean = 5.67, SD = 3.66) and on the borderline of

the ‘minimal’ and ‘mild’ anxiety ranges on the BAI (mean = 7.67, SD = 8.20).

Table 8

Scores on outcome measures across time points

Scale Pre-1(n = 18)*

Pre-2 (n = 18)

Post (n = 15)

Cronbach’s alphaPre-1, Pre-2, Post

HADS-A /21 9.5 (4.09) 9.83 (3.26) 5.67 (3.66) 0.78, 0.69, 0.86

BAI /63 10.67 (7.86) 12.78 (8.47) 7.67 (8.20) 0.87, 0.89, 0.93

HADS-D /21 8.28 (4.23) 7.72 (4.01) 5.00 (3.18) 0.84, 0.76, 0.78

CAMI Total /152 105.24 (15.89) 109.76 (12.4) 109.73 (16.81) 0.87, 0.79, 0.91

CAMI – Managing Events / Problem-solving /64

40.29 (8.01) 43.41 (8.01) 42.53 (7.75) 0.82, 0.78, 0.84

CAMI Managing Meanings / Perceptions /60

43.76 (5.75) 44.67 (5.47) 43.67 (7.11) 0.63, 0.60, 0.84

CAMI Managing Stress /48

21.18 (5.25) 21.33 (4.32) 23.53 (4.81) 0.66, 0.68, 0.71

Note. Clinical ranges for HADS-A and HADS-D ≥ 8, and BAI ≥ 16, BAI breakdown: 0–7 = Minimal, 8–15 = Mild, 16–25 = Moderate, 26–63 = Severe.

* n = 17 for CAMI total and CAMI subscales due to missing data

34

Data preparation.

Prior to conducting statistical analyses, assumptions of parametric tests were

checked using HADS-A and BAI scores. Data were independent. From inspecting

boxplots and scatterplots for the total score at each time point, HADS-A scores

seemed to follow a linear pattern with points generally clustering around the fit line

(see Appendix N). No outliers were identified. The assumption of normality was

checked by scrutinising histograms of the data and examining whether data comprised

of a normal distribution, and through using the Kolmogorov-Smirnov and Shapiro

Wilk tests where normality was indicated when p > .05 (Field, 2013). All HADS-A

scores met both the visual and numerical inspection criteria, such that data were

assumed to be normally distributed. As HADS-A scores met assumptions for

parametric tests, one-way repeated measures ANOVAs were used to compare anxiety

scores across time points. BAI scores did not seem to follow a linear pattern as points

did not generally cluster around the fit line, BAI scores at Post were not shown to

follow a normal distribution (p < .05), and there was evidence of positive skewness on

the histogram. As BAI scores failed to meet the visual and numerical inspection

criteria, a Friedman’s ANOVA, a non-parametric test, was used to compare anxiety

scores measured using the BAI across time points (Field, 2013).

To assess whether outcomes of anxiety were stable between Pre-1 and Pre-2

(without intervention, i.e. whether Pre-2 constituted a stable and appropriate baseline

measurement as this score was completed closest to the intervention), a one-way

repeated measures ANOVA was used to compare HADS-A scores between Pre-1 and

Pre-2, and a Friedman’s ANOVA was used to compare BAI scores between Pre-1 and

Pre-2. If no significant differences were found then stability in measurement would be

35

assumed, such that the Pre-2 and Post score comparison tested using contrasts in the

repeated measures ANOVAs would then be used to discern whether there was a

significant reduction/increase in anxiety post-intervention. Therefore, all the repeated

measures analyses were completed with planned comparisons (i.e. between Pre-1 and

Pre-2, and, between Pre-2 and Post) due to the expectation that measurement would

be stable between Pre-1 and Pre-2, and the hypotheses that the intervention would

lead to change at Post (Field, 2013). As there is no equivalent of contrasts in

Friedman’s ANOVA, pairwise comparisons of BAI scores would be completed using

Wilcoxon tests (Field, 2013). For each planned comparison as they were non-

orthogonal (i.e. comparisons were related as it was a repeated measures design),

Bonferroni correction was used on the alpha level (α/2) = .025 to control for the

possibility of type I error (Field, 2013).

Change in HADS-A.

Mauchly’s test indicated that the assumption of sphericity had been violated,

x²(2) = 6.81, p = .033, therefore Greenhouse-Geisser corrected tests are reported (ε

= .71, Field, 2013). The results show that anxiety significantly reduced over time,

F(1.42, 19.89) = 9.53, p = .003, ω2 = 0.18 (a large effect size). Planned contrasts

revealed that there was no significant difference between HADS-A scores from Pre-1

to Pre-2, F(1, 14) = .01, p = .942. Planned contrasts showed that anxiety significantly

reduced from Pre-2 to Post, F(1, 14) = 31.82, p < .001, r = 0.83 (a large effect size,

Field, 2013, Figure 2).

36

Figure 2. HADS-A and BAI scores compared pre- and post-relaxation training

Change in BAI.

Participants’ anxiety significantly changed over time, x²(2) = 9.15, p = .010.

Planned pairwise comparisons using Wilcoxon tests showed that anxiety did not

significantly change from the start of the study (Pre-1) to one month (Pre-2), T = -.37,

p = .946. It appeared that anxiety significantly reduced from Pre-2 to Post, T = 1.03, p

= .014, r = -0.53 (a large effect size). Therefore, anxiety seemed to have improved

following the intervention (see Figure 2).

Depression

Table 8 shows that on average before intervention, participants scored in the

clinical range for depression, which was higher than had been reported previously by

stroke caregivers 3-months post-discharge and 5-years post-stroke (mean = 3.6, Lui et

Anxiety MeasureAnxiety Measure

37

al., 2012; mean = 5.6, Jaracz et al., 2015). After intervention, on average, scores on

the HADS-D improved and were in the normal range.

Data preparation.

Assumptions of parametric statistical tests were checked. Data were

independent. From inspecting boxplots and scatterplots for the total HADS-D score at

each time point, the data seemed to follow a linear pattern with points generally

clustering around the fit line (see Appendix O). No outliers were identified. All scores

met both the visual and numerical inspection criteria, such that data were assumed to

be normally distributed. Therefore, a one-way repeated measures ANOVA was used

to assess for change in HADS-D scores over time.

As completed for anxiety scores, using planned comparisons, depression

scores were compared between Pre-1 and Pre-2, and then between Pre-2 and Post

using a one-way repeated measures ANOVA. If no significant differences were found

between Pre-1 and Pre-2, then stability in measurement would be assumed, and the

Pre-2 and Post comparison would be tested using contrasts to discern whether there

was a significant reduction/increase in depression post-intervention. As above,

Bonferroni correction was used on the alpha level (α/2) = .025 to control for the

possibility of type I error (Field, 2013).

Change in depression.

Mauchly’s test indicated that the assumption of sphericity had not been

violated, x²(2) = 3.33, p = .189. The results show that depression significantly reduced

over time, F(2, 28) = 5.83, p = .008, ω2 = 0.07 (a medium effect size). Planned

contrasts revealed that there was no significant difference between HADS-D scores at

38

Pre-1 to Pre-2, F(1, 14) = .21, p = .658. Planned contrasts showed that depression

significantly reduced from Pre-2 to Post, F(1, 14) = 7.60, p = .015, r = 0.59 (a large

effect size, see Figure 3). This suggests participants’ symptoms of depression

improved post-intervention.

Figure 3. Depression scores compared pre- and post-relaxation training

Coping

Table 8 and Figure 4 suggest there was little change in overall coping scores

pre- and post-intervention. However, scores on the CAMI Managing Stress subscale

suggested improvement post-intervention.

39

Figure 4. CAMI scores compared pre- and post-relaxation training

Data preparation.

Assumptions of parametric statistical tests were checked. Data were

independent. From inspecting boxplots and scatterplots at each time point, for the

total CAMI score and for each subscale total score, the majority of data seemed to

follow a linear pattern with points generally clustering around the fit line (see

Appendix P). No outliers were identified. Generally, scores met both the visual and

numerical inspection criteria, such that data were assumed to be normally distributed.

Therefore, one-way repeated measures ANOVAs were used to assess for change in

CAMI scores over time.

As completed for anxiety and depression scores, using planned comparisons,

coping scores (total and per subscale) were compared between Pre-1 and Pre-2, and

then between Pre-2 and Post using a one-way repeated measures ANOVA. If no

significant differences were found between Pre-1 and Pre-2, then stability in

measurement would be assumed, and the Pre-2 and Post comparison would be tested

Scale

40

using contrasts to discern whether there was a significant reduction/increase in coping

post-intervention. As above, Bonferroni correction was used on the alpha level (α/2) =

.025 to control for the possibility of type I error (Field, 2013).

Changes in coping.

No violations of the Mauchly’s test checking the assumption of sphericity

were found in relation to changes in total coping or coping subscale analyses (p

> .05). No significant differences over time were found for overall coping [F(2, 26) =

1.79, p = .187], Managing Events/Problem-solving scores [F(2, 26) = 3.23, p = .056]

or Managing Meanings/Perceptions [F(2, 26) = .33, p = .723] (p > .025). As the p

value was close to .05 when assessing differences between Managing

Events/Problem-solving scores, planned contrasts were conducted. Planned contrasts

with Bonferroni correction (α = .025) revealed that there was no significant difference

between Managing Events/Problem-solving scores Pre-1 and Pre-2, F(1, 13) = 5.11, p

= .042, or between Pre-2 and Post, F(1, 13) = 1.79, p = .204. However, a p value close

to .025 suggested some evidence of a relationship between Pre-1 and Pre-2 scores

with these seeming to improve over time.

The results show that Managing Stress significantly changed over time F(2,

26) = 6.46, p = .005, ω2 = 0.05. Planned contrasts revealed there was no significant

difference between CAMI Managing Stress scores at Pre-1 to Pre-2, F(1, 13) =

< .001, p = 1.00. Planned contrasts showed that Managing Stress scores significantly

increased from Pre-2 to Post, F(1, 13) = 10.15, p = .007, r = 0.66 (large effect size,

see Figure 4). Therefore, participants’ coping ability in terms of managing stress

seemed to improve post-intervention.

41

Qualitative Analysis

Eleven participants (73%) reported using the relaxation audio 20 times, as

directed. Frequency of use by the other four participants was 14 times (n = 1), 10

times (n = 1) and less than half of the required amount (n = 2). Reasons given for not

meeting the target duration were limited time (n = 3) and memory lapses (n = 2).

Nine deductive themes were applied to the data; four related to core processes

of relaxation training and five derived from the effects of PMR and AR literature (see

Appendix Q for examples of initial codes and data related to each theme). Two

additional inductive themes were also derived from the data: ‘prioritising time’ and

‘positives of taking part’. Each theme is described and supported with quotes. A

credibility check of the theme: ‘Reduction of exteroceptive and proprioceptive

afferent stimulation, such that training should take place in a quiet room.’ was

completed with an independent researcher and showed general agreement; the same

data was rated as demonstrating the theme by both researchers, although the

independent researcher also identified two additional responses which could illustrate

the theme (see Appendix R).

PMR process themes.

1) Relaxes a group of muscles which are acquainted in a certain order.

This theme describes muscles ‘relaxing after the cessation of impulses along

motor nerve fibres extending to a muscle’ (Jacobson, 1929, p.30; Jacobson, 1987).

This practiced relaxation occurs in the principle muscle-groups in the whole body in a

specific order each time (i.e. the same muscles are tensed and then relaxed in the same

42

sequence every day). Ten participants specifically spoke positively about relaxing

their muscles through completing PMR (see Table 9) and liked being talked through

the exercises:

P7: ‘relaxing, took some physical tension away.... was good being talked

through exercises and talking through tensing muscles’.

Table 9

Quotes representing ‘relaxes a group of muscles which are acquainted in a certain

order’

Quote Participant

‘clenching muscles is really good’ 10

‘felt it's worked at the end and felt better for doing it. Didn't realise wasn't relaxed but felt better afterwards. Liked working through my body - especially eyebrows’

13

‘body relaxes and found I relax with it’ 14

2) Practises from day to day tending towards a state in which quiet is

automatically maintained.

This theme designates the need to practise PMR each day and ‘progress

toward a habit of repose’ (Jacobson, 1987, p. 76). This suggests that a state of quiet is

achieved by doing away with residual tension as a result of completing the exercises

in sequence day-to-day. Whilst none of the participants made explicit reference to

maintaining a state of quiet, there was some evidence that participants found their

minds wandered less over time and they ruminated less on experiences (see Table 10)

which could be indicative of quieter experience. Moreover, participants thought they

43

felt calmer (less anxious) as a result of the exercises which was perceived as a benefit

to them.

Table 10

Quotes representing ‘practises from day to day tending towards a state in which quiet

is automatically maintained’

Quote Participant

‘Helps if it's all feeling a bit much, calming, help you to feel better’ 16

‘not been as calm when not used it (snapped more)’ 8

‘Found it difficult at times with the mind wandering - more practice made it easier’

13

‘gradually you get to a point where you are calm after it’ 15

AR process themes.

1) Reduction of exteroceptive and proprioceptive afferent stimulation, such

that training should take place in a quiet room.

This theme suggests that for stimulation to be reduced that the ‘exercise

should take place in a quiet room with moderate temperature and reduced

illumination; restricting clothes should be loosened or removed’ (Kanji, 1997, p.163).

While participants did not make direct reference to temperature, illumination or their

clothes, five participants reported completing the exercises in a quiet environment

aided relaxation (see Table 11) and helped provide less distraction:

P2: ‘In the living room with laptop. No distractions. Quiet environment’.

44

Participants also usually completed the exercises in the same place each day,

which could be as a result of that place in the house being quieter. Completing the

exercises at times when it was quieter could further reduce external stimulation

through there being fewer perceived demands from others, such as the person they

care for. It also could be argued that most participants (53%) may have completed the

exercises at the start (n = 4) or end of the day (n = 4) to allow for less illumination to

be present.

Table 11

Quotes illustrating ‘reduction of exteroceptive and proprioceptive afferent

stimulation, such that training should take place in a quiet room’

Quote Participant

‘First thing in the morning, before breakfast was best for me. Couldn't do it during the day, it was too noisy and distracting.’

15

‘Mainly evening about 7pm (before settling down to the telly). Chose to complete it at this time because no demands’

9

‘Sat in armchair in the lounge, less distraction’ 8

‘Same place in the kitchen - Sat in armchair in the lounge, easier to do it sitting up than lying down. Less distraction’

13

2) Mental repetition of psychophysiologically adapted verbal formulae,

whereby mental activity is conceived as ‘passive concentration’.

This theme involves participants ‘repeating a formula in his or her mind which

is deemed as passive concentration’ (Kanji, 1997, p. 163). This concentration is

centred on creating ‘mental contact with the part of the body indicated by the

autogenic formula’. For example, the audio instructed participants to, “focus your

passive attention on your arms and repeat the following: ‘my right arm is heavy’”.

45

Largely, participants described a progression whereby the more they did the

exercises, the more they enjoyed and improved at them. Kanji (1997) suggested that

the depth of relaxation should build up over time following practice. Some

participants stated that initially their mind wandered more and practice made it easier

to maintain concentration (see Table 12). However, one participant said that they

found it more difficult to maintain concentration towards the end of the month of

training.

Two participants disliked saying the statements to themselves and reported not

to find this relaxing. Other participants seemed to have read about how AR works and

found this helped them to complete the mental repetition exercises.

Table 12

Quotes illustrating “mental repetition of psychophysiologically adapted verbal

formulae, whereby mental activity is conceived as ‘passive concentration’”

Quote Participant

‘More did it, enjoyed it more.’ 9

‘Get better at it as you know it more’ 11

‘Harder to maintain concentration when doing it as time went on.’ 2

‘Was a slow start getting used to it and the voice and the gaps in between. After a week, it went swimmingly.’

15

‘Difficult to talk through saying statements to themselves, goes against my nature.... Preferred the first [PMR] one.’

3

‘Saying feeling relaxed made me feel more awake’ 10

The literature set out three likely effects of PMR and six likely effects of AR.

These were then merged to create two likely effects of PMR and three likely effects of

46

AR due to conceptual overlap (see Appendix M). These were used as themes to

explore whether participants experienced these predicted outcomes.

Effects of PMR.

1) Releasing the tension of muscles.

This theme overlaps with the core processes of PMR and as such evidence for

this outcome has been detailed above. This illustrates participants’ positive experience

of relaxation as a result of releasing the tension in their muscles.

2) Absence of thinking and the control of images and attention.

This theme relates to Jacobson’s (1987) suppositions that intense focus on

muscles eliminates the occurrence of thinking, and that when muscles are completely

relaxed, mental images will not be experienced at the same time. Daily practice at

controlling muscles is also seen to improve attention. As previously discussed, the

majority of participants found over time that they focused more easily on the PMR

exercises. Overall, this increased focus was considered to be easier to achieve whilst

completing PMR compared to AR, with four participants reporting they preferred

PMR compared to AR (see Table 13). A benefit was also described in terms of

focusing on muscles rather than attending to thoughts:

P15: ‘Makes you focus on something, rather than silly little things that go

through my mind. Feel calmer than before.’.

47

This participant also said that they were more able to control thoughts as time

progressed. Further evidence of the absence of thinking is provided by three

participants reporting that they could have fallen asleep during practice. Conversely,

another participant described a benefit of the exercises being that they made them

think more.

Specifically, in relation to attention, three participants identified noise as a

particular factor hindering their attention when attempting to complete the exercises.

As previously discussed, this was managed by finding the quietest room in the house

to complete the exercises.

Table 13

Quotes illustrating ‘absence of thinking and the control of images and attention’

Quote Participant

‘Mind didn’t wander as much, could focus easier 8

‘Occasionally mind could wander at the beginning, had to be disciplined to stop mind from wandering ... able to control my mind and thoughts easier as time went on’

15

‘Nearly fell asleep a couple of times (not usually a good sleeper) .... Found it easier to bring my mind to it when doing the PMR exercises, rather than the later tape, mind wandered more - just what my mind does’

9

‘Found it difficult at times with the mind wandering - more practice made it easier’

13

‘Think I fell asleep once.... Made you stop and think about other things, especially once you'd done the exercises before resuming your day - thought about the exercises I'd just done. Made you think.’

18

Effects of AR.

3) ‘Counteracting of acute stress or fatigue’.

48

This theme is defined by the counteracting of acute stress or fatigue as ‘mental

and physical refreshment being provided’ (Kanji, 1997, p. 164). All 15 participants

provided a response which fitted into this theme, and consequently represented the

most common effect of the relaxation training. Specifically, 11 participants said that

they felt more relaxed through completing the training (see Table 14), which suggests

that stress had been reduced. For example, one participant noted the refreshment as a

result of relaxing:

P14: ‘Made me have a rest from what I was doing - which I wouldn't normally

do, taking time out, relaxing’.

This reduction in stress could be explained through completing breathing

exercises. Deep breaths could activate the parasympathetic nervous system and, in

turn, decrease the activity in the sympathetic system (Carruthers, 1979, p. 437).

Participants reported the exercises helped them sleep better, thus helping

combat fatigue and aid mental and physical rejuvenation. Better sleep can have a

positive impact on mental health (Freeman et al., 2017). Feeling calmer was also

stated by numerous participants. This could indicate a decrease of stress and anxiety

whilst completing the training and subsequently afterwards, such as when helping

manage challenging behaviour. Feeling calmer also seemed to be influenced by the

voice on the tracks which was described as ‘very soothing’, although one participant

thought the words could have been said in a softer tone at times.

49

Table 14

Quotes demonstrating ‘counteracting of acute stress or fatigue’

Quote Participant(s)

‘it was relaxing’ 11

‘relaxed when doing it. Took me away from my day’ 12

‘Breathing - do start to relax’ 9

‘Breathing exercises were very relaxing’ 10

‘Helped me go to sleep’ 3, 6

‘very relaxing, very nice when get to used to’ 16

‘Not been as calm when not used it (snapped more). Don't challenge things as much, found it helpful. Possibly reacted better with (removed) challenging behaviour’

8

4) Achieve peace of mind.

This theme is described as ‘the extent to which one experiences inner peace

and harmony’ (Lee, Lin, Huang, & Fredrickson, 2013). It relates to the reduction of

proprioceptive afferent stimulation as this could support the occurrence of peace of

mind (Kanji, 1997). Although participants did not report explicitly experiencing inner

peace or harmony, their comments indicated their state of mind have changed in a

beneficial way (see Table 15). For example, one participant said that their ‘mind goes

back to a certain position’, which was described as being in response to feeling

50

calmer. Another participant said that the exercises ‘put you in a better frame of mind’

which resulted in them coping with situations better and being able to focus more

easily. This arguably could suggest that the mind is more peaceful and less anxious.

Similarly, developing patience was considered to be a positive outcome after

completing the training. This could have been experienced as a result of a quietening

of proprioceptive stimulation.

Table 15

Quotes demonstrating ‘achieve peace of mind’

Quote Participant

‘Helped during the day to be a little more patient, a little less het up about things’

6

‘Put you in a better frame of mind with it than without it’ 8

‘Help concentrate on one thing - like a hobby. Can switch off from things around you. Difficult to quantify what's changed. Mind goes back to a certain position.’

15

5) Cope with life’s pressures and improve coping abilities.

This theme concerns improving participants’ ability to cope with life stressors.

Four participants said the training helped them to focus on something different and

feel calmer (see Table 16). This could be related to helping them cope with the

demands of caring. Other participants made specific reference to life events that may

have been impacting on their ability to cope. Some participants found that, with these

events happening, it was more difficult to complete the training. Conversely, others

said the training helped them cope with the events, and found it easier to fit into their

day than they had expected.

51

Table 16

Quotes illustrating ‘cope with life’s pressures and improve coping abilities’

Quote Participant

‘it was effective and can focus on something completely different’ 13

‘coped better’ 8

‘calmed me down a bit. In spite of everything else going on around me’ 14

Interviewer asked if they would continue using the relaxation: ‘yes definitely, and at work too because of the benefit.’

9

‘Bit of trouble fitting it in around all that I do.’ 1

‘three funerals in one week, disc helped me to cope.’ 10

‘Need to try and get a routine, there isn't one at the moment - things are manic and the days go.’

12

‘Some nights finding 20 minutes would be a struggle to find [they thought this] but thought it was actually all okay in the end.’

7

Additional themes.

1) Prioritising time.

Participants referred to the impact of training in various ways. For instance, in

relation to how the training allowed them to have time to themselves, and how their

perception of time influenced them completing the training (see Table 17). Overall,

participants reported a positive impact of completing the relaxation in terms of it

allowing them to dedicate time to themselves. Conversely, for participants who did

52

not complete the required amount of training, three of them explained this was due to

the lack of time they had, and within this one participant thought the audio could be

shorter.

Table 17

Quotes illustrating ‘Impact of time’

Quote Participant

‘Nice to have a quarter of an hour to myself’ 9

‘Takes time out for the self a little’ 14

‘Haven’t had the time’ 11

‘When got time to myself, did it with everything else I needed to do’ 12

‘In reality I don't get enough time to complete it’ 16

‘If having a difficult time, would take time out to do it’ 9

2) Positives of taking part.

Caregivers expressed wanting to continue using the relaxation training (n =

14, 93%, see Table 18). Some stated this would not be as regularly as set out in the

study, but when specific circumstances arose (e.g., if they were sleeping poorly or if a

stressful life event occurred). One participant said that they would continue using it if

it included music, and another participant desired a variety of tracks to continue

practising with. Generally, participants said that they were pleased to have taken part

in the research; some expressed telling other caregivers about it. Positive experiences

included reports from participants who said that they were initially sceptical about the

relaxation being helpful. Numerous participants found completing the relaxation

53

exercises created a new, beneficial experience for them, with some now reporting

being more able to pay attention to the present and future as opposed to being focused

on the past. Participants also spoke of the lack of support for long-term caregivers,

such that taking part had been a good experience in this regard. However, they also

recognised that the training could have been useful earlier post-stroke.

Table 18

Quotes illustrating ‘Positive of taking part’

Quote Participant

‘Yes, felt it was of benefit to me personally. Could see how it could have helped in the early years post-stroke.... doesn’t dwell on what’s happened. Looking forward and being in the moment. Doesn't remember this kind of thing being offered when the stroke happened. I will tell others that I've taken part in this’

2

‘I'll carry on listening to it because feels it's working.... Was very sceptical about it working but thought it has been helpful’

1

‘Yes, will continue but possibly not as regular (every day) because think it would be useful, less snappy, less stroppy’

8

‘Yes, would like to continue, it was helpful’ 15

‘Really good thing because people don't think about carers, don't ask how they are’

10

‘If people are wary of it, give it a go because it's surprising how quickly you can feel relaxed.’

16

‘Very sceptical originally about relaxation techniques, felt they wouldn't help and would do the opposite. May still get a little het up or angry but can let off steam and that's not how it was in the past. Also can dwell on this things less’

6

Discussion

The results of this study provide evidence for the effectiveness of self-help

progressive muscle relaxation (PMR) and autogenic relaxation (AR) training for

stroke caregivers. The main hypothesis was supported; anxiety was shown to

54

significantly reduce following the completion of the relaxation training for one month.

Similarly, the hypothesis that depression would significantly reduce after using the

relaxation training was supported. The hypothesis that coping would significantly

improve was only partly supported, as only coping in relation to managing stress

improved significantly. The qualitative findings allowed further understanding of the

possible bases for the significant changes observed and were consistent with theory

and past research involving PMR and AR training.

Improvement in anxiety was evidenced for the HADS-A and BAI, both with

large effect sizes demonstrating convergent validity. This finding mirrors the large

effect found by Golding et al. (2016), who used the same relaxation protocol with

stroke survivors. It is also consistent with systematic literature and meta-analytic

reviews which report beneficial effects of relaxation training for anxiety (Manzoni et

al., 2008; Pagnini et al., 2013). Improvement in anxiety could be a result of the

relaxation training involving deep breathing, as this could have activated the

parasympathetic nervous system (Carruthers, 1979). This in turn could have led to a

decrease in physiological arousal, through decreasing the activity in the sympathetic

system, which counteracts the stress response of anxiety (Esch, et al., 2003; Steinhardt

& Dolbier, 2008). Evidence for this response is further supported by participants

reporting they felt calmer and more relaxed. Whilst a possible explanation for the

significant results could be that caregivers dedicated time to themselves (e.g. 20

minutes per day), rather than that the effects were as a result of the relaxation training

specifically, this seems unlikely. It could be argued that by dedicating time to oneself,

it is unlikely caregivers would find their muscles relaxed in the specific way they

reported (i.e. after tensing them), nor that they would be able to pay more attention to

55

their breath and/or be able to focus on something different without being given

something different to focus on. For instance, if participants struggled with

rumination and they did not focus on something specific in the dedicated time for

themselves each day, caregivers could have ruminated more and felt more depressed

and anxious in mood. This is because chronic stressors (e.g. being a caregiver) can be

linked with rumination as the chronic stressor of being a caregiver could create

discrepancies between the caregiver’s current state and their goals or desired states

(Michl, McLaughlin, Shepherd, & Nolen-Hoeksema, 2013). This seemed not to

happen as anxiety and depression were lower, therefore the results may be unable to

be explained wholly through caregivers dedicating more time to themselves each day.

As predicted due to the high co-morbidity between anxiety and depression

(Hirschfield, 2001; Kessler et al., 2003; Zhou et al., 2017), depression also reduced

significantly. This was encouraging as it could suggest that relaxation training may be

beneficial for more than solely anxiety. The stress-coping model could explain why

indicators of depression might change following relaxation training. As a result of

reducing physiological arousal and anxiety, participants may then be less distracted by

worrying/negative thoughts (Asare & Danquah, 2017) when planning activities or

engaging with activities, hence more enjoyment was felt. This would fit with

Jacobson’s premise behind PMR that when the residual tension of muscles was

relaxed, this could eliminate the occurrence of thinking, and as such worry (Carlson &

Hoyle, 1993), which may then generalise to after practice. For instance, through

directing attention onto controlling muscles, and practising this each day, this could

improve attention and reduce anxiety (Jacobson, 1987). This has been shown in

experimental research whereby participants were found to feel more relaxed, be less

56

physiologically aroused and complete tasks faster following PMR, which was

suggested to also indicate improved attention (Scheufele, 2000). In this study’s

interviews, participants also reported experiencing less distraction due to

worrying/negative thoughts. For example, as one participant remarked the training

enabled them to stop focussing on ‘silly thoughts’. Therefore, the quantitative and

qualitative data suggested that anxiety and depression improved following relaxation

training.

Coping was only found to improve in relation to managing stress. This is

consistent with the stress-coping model; stress may have reduced through relaxing the

mind and body, which could then lead to participants perceiving that their internal

resources have increased in relation to their external demands (Goodman & Ley,

2012). This could happen as a result of reduced physiological arousal and anxiety.

Consequently, participants may perceive that they were better able to manage stress

and demands.

Conversely, there was less evidence that managing events/problem-solving

and managing meanings/perceptions aspects of coping significantly changed post-

intervention. For instance, Managing Events/Problem-solving scores showed some

evidence of improving over time, between Pre-1 and Pre-2 (p = .042), but this was

before the intervention occurred. Nonetheless, these aspects of coping may require a

different intervention, which specifically targets these abilities and/or they may need

more than one month to change. For example, Brereton et al.’s (2007) systematic

review included a study that found problem-solving skills significantly improved in

stroke caregivers after a three-month problem-solving intervention (Grant, Elliott,

Weaver, Bartolucci, & Giger, 2002). In terms of managing meanings/perceptions, the

57

stress-coping model may not predict that this would be likely to change quickly as a

result of reduced anxiety. This could be because this subscale arguably reflects more

stable, attitude-related cognitive coping strategies that caregivers use to perceive

events (Nolan et al., 1995), rather than ways of coping that may change more as a

result of their transient state of mind/anxiety, which could be relaxed during the

training. Therefore, it could be a strength of the study that this subscale was not

shown to change because it was not predicted by theory, and could henceforth

indicate less biased reporting by caregivers. The lack of change in these two subscales

would explain why the overall coping score did not change despite improvement in

managing stress scores. This also underlined the importance of assessing aspects of

coping separately. As the results suggest the types of coping are distinct, and only

managing stress was impacted by the relaxation training, different interventions might

be required to target the other types of coping.

Poorer internal consistency was found for the Managing Meanings/Perceptions

subscale in this study compared to in past research (Llewellyn et al., 2003). Test re-

test reliability of the CAMI was also not evidenced previously (Harvey et al., 2005).

However, the qualitative data suggested some change in relation to ‘coping better’ in

the interviews and attributed this to the relaxation. In future research, coping measures

that have evidenced sensitivity to change over short time periods, good internal

consistency and good test re-test reliability should be used.

The results suggested participants showed good treatment fidelity and reported

beneficial effects of this. For instance, only three participants withdrew from the study

due to reasons unrelated to the intervention. Treatment fidelity could be evidenced

through almost 75% of participants reporting using the relaxation training for the

58

recommended number of times or more, and comments indicating that they followed

the proposed structure of the training. However, future research could be completed to

corroborate self-report fidelity to the intervention by using more objective outcome

measures, in addition to asking participants at the end of the month how many times

they completed the training, based on the paper diary sheet provided. For example, an

online system could record each time participants listened to the audio in full or

participants could register each time they used the relaxation CD via an online

recording system, as near to the moment after they completed it, as this could enhance

the validity of the self-reported training usage. In terms of effects, the current findings

supported previous findings in the literature where PMR and AR were described to

help counteract fatigue, achieve more peace of mind and improve attention (Jacobson,

1987; Kanji, 1997). As positive findings were triangulated across quantitative and

qualitative findings, whereby the hypotheses were supported and the qualitative data

supported the proposed mechanisms of action, this provided evidence for the use of a

mixed methods approach and data were thus less likely to be biased (Jick, 1979;

Johnstone, 2004). This was corroborated further as participants’ responses generally

followed the predicted effects of the relaxation training when asked open questions

about what their experience of the training was.

Implications for Clinical Practice / Future Research

To determine whether the effectiveness of self-help relaxation training is

maintained a follow-up study would be required. Golding, Fife-Schaw, and Kneebone

(2017) conducted a 12-month follow-up of relaxation training for anxiety in stroke

survivors, and found that reduction in anxiety was maintained between pre-

intervention and follow-up (p < .001). Overall, 75% of participants completed the

59

study at follow-up (Golding et al., 2017) which suggested that this follow-up method

and time period was generally feasible, and that the results were not overly biased.

Likewise, anxiety was measured over the telephone using the HADS-A, which could

be replicated in a follow-up of this current study to establish whether gains are

maintained.

To ascertain whether self-help relaxation training could lead to cost savings

and be cost-efficient, future research could compare the usage and cost of services

(e.g., GP visits and drug costs associated with this, and support provided for stroke

survivors, see Mavranezouli et al., 2015) by stroke caregivers using relaxation

training, with a waiting list control group. Additionally, this intervention falls within

the lower end, in terms of cost, of psychological treatments for anxiety. To illustrate

this, Golding et al. (2017) estimated the cost of creating the CD, posting it to

participants and telephone contact time during the study at £57 per participant, which

was in line with the cost of guided bibliotherapy or a psychoeducation group for

anxiety in the general population (£36–£150 per person, National Institute for Health

and Clinical Excellence, 2011). The cost of this intervention would likely be similar

as it involved posting out fewer CDs and comparable telephone contact time (at Pre-2

and Post), and therefore provides a cost-efficient way of effectively reducing anxiety.

In the recent literature, there has been a growing emphasis on conducting

interventions which involve the stroke survivor and their caregiver to better meet both

of their needs. Healthiness of stroke caregivers has been shown related to better long-

term rehabilitation outcome and quality of life in stroke survivors (Bakas et al., 2017;

McCurley et al., 2018; Greenwood & Mackenzie, 2010; van Exel et al., 2004). Given

the positive effects of this training on stroke survivors previously (Golding et al.,

60

2016, 2017), it could be useful to investigate the impact of stroke survivors and

caregivers completing this relaxation training together, especially as one caregiver

reported that the stroke survivor they supported spontaneously joined them and

completed the relaxation training also.

Whilst this study has shown relaxation training to be effective in caregivers

many years post-stroke, to determine whether there is a type of stroke caregiver who

could be more likely to benefit from the training, future research with more

participants is needed. For example, in a recent systematic review of the literature

investigating what factors influence anxiety in stroke caregivers (Csecs et al., 2019), it

was found that caregivers experiencing high levels of burden and/or those who were

female were more likely to be anxious. Therefore, it would be interesting to explore

whether this could translate into who could be more likely to benefit from this

intervention (i.e. whether caregivers experiencing higher burden and/or female

caregivers experience significantly larger reductions in anxiety following relaxation

training), as funding is becoming more limited to those at greatest risk (Robertson,

Wenzel, Thompson, & Charles, 2017).

Strengths and Limitations

Providing an intervention that participants completed at home could minimise

accessibility problems, which stroke caregivers have previously reported in relation to

accessing psychological support (Martin et al., 2002; McCurley et al., 2018). Offering

options for participants in how they completed measures at Pre-1 and how they

received the relaxation audios was a strength of the study, which may also have

helped sufficient numbers of caregivers to participate, enabling adequate power to be

achieved. However, by providing options, there was the possibility that there was a

61

difference in anxiety change scores between participants who completed measures at

Pre-1 using different methods. Unfortunately, the numbers in these groups were too

small to test for these potential differences (e.g. four participants completed the

measures over the telephone). Nonetheless, previous research involving caregivers of

stroke survivors has shown there were no significant differences between caregivers

who completed the HADS-A over the telephone and face-to-face (Hoffmann et al.,

2010). Although this does not compare with online or postal surveys, evidence was

not available to compare these methods as generally research with stroke caregivers

has been conducted face-to-face. Furthermore, the levels of anxiety reported in this

study were similar to those reported in face-to-face interviews previously (mean

HADS-A scores = 8 and 9 respectively, Greenwood & Mackenzie, 2010; Jaracz,

Grabowska-Fudala, Górna, & Kozubski, 2014). As such, the method of administration

of outcome measures may not lead to different reports of anxiety in stroke caregivers.

A key limitation of the study is the lack of a control or comparison group. This

would be needed to provide more evidence that positive changes were due to the

intervention (Medical Research Council, 2019). Future research could compare the

effectiveness of usage of relaxation training to a waiting-list control group. If results

are replicated, this would add reliability and validity to the current findings. If

positive results are found, this self-help relaxation training could be offered more

widely to caregivers of long-term stroke survivors, which would be positive given the

current reported lack of support available (Jaracz et al., 2015) and its potential to be

cost-effective.

It must be noted that this study did not exclude participants based on the level

of their anxiety due to the expected high levels of anxiety present in stroke caregivers

62

(Choi-Kwon et al., 2005; Greenwood & Mackenzie, 2010). Therefore, it remains

possible that the effectiveness of this intervention may be different if the sample

involved only those who scored in the clinical range of anxiety.

Conclusion

This study provided evidence for the effectiveness of self-help relaxation

training for anxiety and depression reduction in long-term caregivers of stroke

survivors. Improvement in coping skills in terms of managing stress was also found.

These findings were shown using quantitative and qualitative data, thus supporting the

use of mixed methods approaches in this area of research. Whilst other types of

coping did not improve, reasons for this have been suggested in terms of the types of

coping assessed and the reliability of measures. Future research is required to

ascertain whether the results are maintained at follow-up and whether there are factors

which influence the likelihood of improvement.

63

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List of Appendices to the Empirical Paper

Appendix A – Author guidelines for chosen journal (removed)

Appendix B – Letter to Accompany Information Sheets

Appendix C – Information Sheets

Appendix D – Consent Forms

Appendix E – G*Power Calculation

Appendix F – Detailed Information for Measures Used

Appendix G – Background Information Questionnaire for Caregivers

Appendix H – Background Information Questionnaire for Stroke Survivors

Appendix I – Relaxation Training Scripts (removed)

Appendix J – Experience of Relaxation Training Form

Appendix K – Ethical approval from the Faculty of Health and Medical Sciences Ethics Committee at the University of Surrey and the Departmental Ethics Committee at the University of York

Appendix L – Written Guidance for Relaxation Training and Diary Sheet

Appendix M – Template of Themes for Deductive Thematic Analysis

Appendix N – Evidence of Assumption Checking for Repeated Measures ANOVA – Anxiety Scores

Appendix O – Evidence of Assumption Checking for Repeated Measures ANOVA – Depression Scores

Appendix P - Evidence of Assumption Checking for Repeated Measures ANOVA – Coping Scores

Appendix Q – Coded Extracts from the Deductive Thematic Analysis

Appendix R – Credibility Check of Deductive Thematic Analysis

82

Appendices to the Empirical Paper

Appendix A – Author guidelines for chosen journal (removed)

83

Appendix B – Letter to Accompany Information Sheets

Dear

My name is Jenny Csecs and I’m a Trainee Clinical Psychologist working with Hannah Thompson. (removed)

As part of my training I am carrying out a piece of research. My topic is anxiety in caregivers of stroke survivors. I am looking for a range of participants (caregivers), including those who do and do not perceive themselves as feeling anxiety. I am interested to research those who care for people many years post stroke. I am researching the benefit of self-help relaxation techniques (please see enclosed information sheets for you and the person you support to read for further information).

There is no obligation to take part. I will contact you in the New Year to see if you’re interested in being involved in the project.

If you would like to register your interest or get further information about the study please contact us (details above). Feel free to forward these details to anyone who you think might be interested in our research.

Yours sincerely,

Jenny Csecs and Hannah Thompson

84

Appendix C – Information Sheets

Caregiver Information Sheet

Self-help Relaxation for Anxiety in Caregivers of Community-dwelling Stroke Survivors

IntroductionI am a Trainee Clinical Psychologist at the University of Surrey. As part of my training I am carrying out a piece of research into anxiety and stroke caregivers. You have been contacted because you are a caregiver of someone who has had a stroke.

You and the person you are caring for are being invited to take part in a doctorate research project. Before you decide if you want to participate, it is important for you to understand why the research is being done and what it will involve.

Please read this information carefully and discuss it with friends and relatives. Please ask if there is anything that is not clear or if you would like more information.

Take time to decide whether you want to take part.

What is the study about?I am researching the effect of self-help techniques on anxiety in stroke caregivers and I would be grateful if you would help me with this by taking part in my study.

I am looking for a range of participants, including those who do and do not perceive themselves as feeling anxiety. I am interested in caregivers of stroke survivors in the chronic phase as there is less emphasis on treatments for individuals living in the community.

Feeling anxious or worried is common in stroke caregivers. People frequently report concerns about the stroke survivor they’re caring for having another stroke, a lack of

85

support available and feeling uncertain about the impact of stroke and their ability to cope and support the stroke survivor. Some feelings of anxiety and worry are normal and healthy, however for some people these worries, and the physical sensations associated with them, impact on their day-to-day life and can feel overwhelming.

At the moment little is known about what affects anxiety in stroke caregivers. Understandably some caregivers feel overwhelmed and may find it difficult to access psychotherapy or support which involves going out of the house. Researchers are therefore looking at ways of helping people to cope with their worries and feelings of anxiety by themselves, using various self-help strategies.

I am conducting a study to test whether self-help techniques done at home using a CD reduces feelings of worry and anxiety in caregivers of stroke survivors. I am interested in people who care for stroke survivors at home in an unpaid capacity (caregivers can live in or independently, and may be related or not to the stroke survivor), of any age and gender, and who would be able to answer questions about themselves once a month on three occasions (please see Figure 1 under ‘What will I have to do?’ section) and follow self-help techniques from a CD for a month.

Do I have to take part?Taking part is voluntary. It is up to you whether you take part. If you decide to take part, you will be asked to sign a consent form. If you change your mind, you are free to withdraw at any time and do not have to give a reason. There will be no adverse consequences. You can contact me for further information and I am happy to answer any queries. My contact details are at the end of this information sheet.

Even if you agree to take part, you can choose not to answer any of the questions or you can withdraw from the study at any time without giving a reason. Whether or not you decide to take part in this research, your decision will have no effect on any other care or treatment you or the person you are caring for are receiving.

What will I have to do?You will be asked to go through several questionnaires, taking approximately 1 hour (see Figure 1 below). You have a choice as to whether this is initially in person with the researcher at your home, over the telephone, via paper forms to be sent back to the researcher or via an online link. Questions will be about yourself, your feelings of worry, your current health, your coping and your perceived level of social support.

One month later I will ring you to go through questionnaires, taking no longer than 20 minutes. You will then be sent the CD containing a self-help exercise, which is about 20 minutes long. Using this CD in this manner has been shown to be effective at reducing anxiety and worry. I will ask you to practice this exercise five times a week for one month.

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At the end of the study I will ring you to go through the questionnaires, and to ask you about your experience of doing the self-help exercise. This should take about 20 minutes.

Figure 1. Timeline of what you’d need to do in the study

How do I agree to take part?You will be asked to sign a Consent Form, to say that you have understood what the research is all about and that you have had the chance to ask me any questions first. The Consent Form also says that all information about you is kept confidential in accordance with the Data Protection Act 1998.

Does what I say get shared with anyone else?The information you give me will remain confidential and will only be seen by myself and my supervisors. You will be kept anonymous in the study.

No other clinical professionals involved in your care, or the care of the person with a stroke you are caring for, will have access to the information you give me during the research. You may also wish to discuss this study will your GP before agreeing to participate.

All information gathered during this research study will be stored securely in a locked filing cabinet at the University of Surrey, in accordance with the Data Protection Act 1998.

Should you disclose that you or someone else is at risk then the researcher may need to report this to an appropriate authority. This would usually be discussed with you first.

1 month later:

Telephone call to answer

questionnaires and give

feedback about the relaxation

exercises

(~20 mins)

Receive relaxation

CD: Complete exercises

5x per week for 1 month

1 month later:

Telephone call to answer

questionnaires

(~20 mins)

Background information

gathering and questionnaires

via a home visit,

telephone call, post or online

(~1 hour)

Signed consent

form received

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What happens when the research study stops?Research takes time to complete. If data from the research is written up and published in academic and professional journals or discussed at conferences and in lectures, your part in the study will be kept confidential. I can send you a copy of the final research study or a summary if you would like.

What are the benefits of taking part?The research provides an opportunity for you to try out a self-help exercise and is an investigation as to whether it has any effect on your worries and feelings of anxiety. However, this is research – we are exploring potential ways to reduce anxiety. Therefore, we cannot guarantee that there will be any personal benefit to you taking part.

Changes to health services can be based on the findings of research studies. It is only by researching real people and real issues, that we can discover what’s working and what needs improving. While you may not see any immediate change or benefit to yourself or the person with a stroke who you care for, you will be contributing to a potentially useful piece of research that may improve the health treatment and service for others in the future.

Are there any downsides to taking part?You may find doing the CD difficult or time-consuming, not helpful. We can also take a break at any time during the questions or decide not to carry on with them. You may also find some of the questions difficult. If you find questions too personal or upsetting in any way, you don’t have to answer it. If you have any concerns you can contact me or my supervisor, and you may decide not to carry on with the study. For external support, you can contact the Stroke Association or you may wish to talk to your GP.

What is there is a problem?If you have any concerns about the study or any aspect of the way you have been treated during the course of the research study, then you can contact me or one of my supervisors or the Head of the School of Psychology at the University of Surrey. My supervisors’ names are Dr Hannah Thompson and Dr Laura Simonds. Their contact details are at the end.

Who has reviewed the project?The study has been reviewed and received a Favourable Ethical Opinion (FEO) from the Faculty of Health and Medical Sciences Ethics Committee at the University of Surrey and the Department of Psychology Ethics Committee at the University of York.

I hope I have answered all of your questions about the research study, but please feel free to ask me anything else that I have not covered. My contact details and those of my supervisors are below.

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Thank you for taking the time to consider participating in this study and reading this Information Sheet.

I look forward to hearing from you.

Research being conducted by:Jenny Csecs, Trainee Clinical Psychologist, Principal Investigator(contact details removed)

Supervised by:Dr Hannah Thompson, Lecturer(contact details removed)

Dr Laura Simonds, Lecturer in Clinical Psychology(contact details removed)

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Patient Information Sheet

Self-help Relaxation for Anxiety in Caregivers of Community-dwelling Stroke Survivors

IntroductionI am a Trainee Clinical Psychologist at the University of Surrey. As part of my training I am carrying out a piece of research into anxiety and stroke caregivers. You have been contacted because you are someone who has had a stroke and has a caregiver.

You and the person you are caring for are being invited to take part in a doctorate research project. Before you decide if you want to participate, it is important for you to understand why the research is being done and what it will involve.

Please read this information carefully and discuss it with friends and relatives. Please ask if there is anything that is not clear or if you would like more information.

Take time to decide whether you want to take part.

What is the study about?I am researching the effect of self-help techniques on anxiety in stroke caregivers and I would be grateful if you would help me with this by taking part in my study.

The study should help us gain a better understanding of what impacts on caregivers’ anxiety. It should also help us to better support caregivers with anxiety and possible interventions in the future.

Why have I been invited to take part in the study?You had a stroke and have a caregiver who helps to support you. They may or may not live with you at home.

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Do I have to take part?Taking part is voluntary. It is up to you whether you take part. If you decide to take part, you will be asked to sign a consent form. If you change your mind, you are free to withdraw at any time and do not have to give a reason. There will be no adverse consequences in terms of care or treatment.

What will I have to do? You will be asked a few questions which involve general information about you and your stroke. Your caregiver will be asked similar questions and more questions about themselves which include questions about their mood and how they are coping. They will also participate in relaxation exercises but you will not need to do this.

The research will take place in person with the researcher at your home, over the telephone, via paper forms to be sent back to the researcher or via an online link when it is convenient for you. If you find questions too personal or upsetting in any way, you don’t have to answer it. You would need to answer questions for approximately 5 minutes.

You can stop the research at any time.

If you would like to take part please inform the researcher, you will be required to sign a consent form before beginning the study.

What are the possible disadvantages or risks of taking part? There are no risks attached to this study.

What are the possible benefits of taking part? This is research not therapy, and as such there may be no personal benefit to you taking part. However, it will improve scientific knowledge about anxiety in caregivers of people with a stroke.

What happens when the research study stops? If data from the research are written up and published in academic and professional journals or discussed at conferences and in lectures, your part in the study will be kept confidential.

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What is there is a problem?If you have any concerns about the study or any aspect of the way you have been treated during the course of the research study, then you can contact me or one of my supervisors or the Head of the School of Psychology at the University of Surrey. My supervisors’ names are Dr Hannah Thompson and Dr Laura Simonds. Their contact details are at the end.

Who has reviewed the project?The study has been reviewed and received a Favourable Ethical Opinion (FEO) from the Faculty of Health and Medical Sciences Ethics Committee at the University of Surrey and the Department of Psychology Ethics Committee at the University of York.

Will my taking part in the study be kept confidential? Yes. All of the information you give will be anonymised so that those reading reports from the research will not know who has contributed to it.

Data will be stored securely in accordance with the Data Protection Act 1998.

Should you disclose that you or someone else is at risk then the researcher may need to report this to an appropriate authority. This would usually be discussed with you first.

Thank you for taking the time to read this Information Sheet.

Research being conducted by:

Jenny Csecs, Trainee Clinical Psychologist, Principal Investigator

(contact details removed)

Supervised by:

Dr Hannah Thompson, Lecturer

(contact details removed)

Dr Laura Simonds, Lecturer in Clinical Psychology

(contact details removed)

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Appendix D – Consent Forms

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Appendix E – G*Power Calculation

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Appendix F – Detailed Information for Measures Used

InstrumentReference Completion time

Construct measured; items and scale Scoring and interpretation Rationale and psychometrics

Hospital Anxiety and Depression Scale (HADS, Zigmond & Snaith, 1983)5 minutes

Two 7-item subscales measure anxiety (HADS-A) and depression (HADS-D).

Participants are asked to rate each item in relation to frequency experienced in the past week on a 4-point Likert scale, ranging from zero to three e.g. ‘I get sudden feelings of panic’ from ‘0 – not at

all’ to ‘3 – very often indeed’.

Total score for each subscale is 21. Higher scores are

indicative of greater levels of anxiety and depression.

The cut-off recommended for possible clinical anxiety and

depression for each subscale is 8 (see Bjelland et al., 2002

for a large review of the HADS, N = 71 included

studies)

The HADS was initially designed for use in a hospital outpatient clinic, but is now

commonly used for measuring anxiety and depression in caregivers of stroke survivors

(Greenwood & Mackenzie, 2010; Pucciarelli et al., 2018; Sagen et al., 2009).

Good concurrent validity with other measures of anxiety and depression, and

good sensitivity and specificity in relation to clinical caseness (Bjelland et al., 2002).

Good internal consistency of both subscales demonstrated (HADS-A Cronbach’s alpha = 0.83, HADS-D Cronbach’s alpha = 0.82).

Adequate retest reliability has been shown for both subscales (0.73–0.76) over a 2–6-week period (Herrmann, 1997; Paiva et al.,

2014).

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Beck Anxiety Inventory (BAI, Beck & Steer, 19935 minutes

Self-report measure of anxiety with 21-items, comprising of descriptive statements of anxiety

symptoms.

Participants are asked to rate each item in relation to how much they have been bothered it over the past week (e.g. shaky) on a 4-point Likert scale ranging from, ‘0 – not at all’ to ‘3 – severely - I

could barely stand it’.

Higher scores suggest greater the anxiety symptomology,

with a total possible score of 63.

In terms of clinical ranges for anxiety, scores of 0–7 are

termed as ‘Minimal’, scores of 8–15 are ‘Mild’, ‘Moderate’

concerns scores of 16–25, and scores of 26-63 are defined as

‘Severe’. The cut-off for clinical anxiety is 16.

The BAI was used in addition to the HADS-A to increase construct validity, because the HADS neglects to assess

somatic complaints of anxiety (Hansson et al., 2009; Muntingh et al., 2011).

The BAI has been shown to be significantly correlated with other widely used measures

of anxiety (e.g., State-Trait Anxiety Inventory, r = 0.47–0.58, Beck & Steer, 1993) thus illustrating good concurrent

validity (Portney & Watkins, 2007).

High internal consistency reported for the BAI (Cronbach’s alpha = 0.92, Beck et al., 1988), and reasonable test re-test reliability of 0.62 and 0.93 at 7-and 1-week intervals.

The Carers’ Assessment of Managing Index (CAMI, Nolan et al., 1995)10 minutes (Harvey et al., 2005)

The CAMI has three subscales (Lundh, 1999): Managing Events/Problem Solving (15 items), Managing Meanings/Perceptions (14 items) and Managing Stress (9 items).

Designed for use with family caregivers as a measure of coping (Harvey et al., 2005). It can be

completed as a self-report measure or via a researcher.

Caregivers read a series of 38 statements about strategies that other caregivers have reported they

use to help them cope, and then caregivers are asked to rate whether they use each strategy and, if so, how helpful they find it. Strategies (e.g. having

a good cry) are rated on a 4-point Likert scale from ‘1 – I do not use this’, ‘2 – Not really

helpful’, ‘3 – Quite helpful’ to ‘4 – Very helpful’ (Yeh & Bull, 2012).

Scores range from 38–152, with higher scores suggestive

of more effective coping.

Good content and construct validity has been argued as the measure was based on

the transactional model of stress and coping (Harvey et al., 2005; Nolan et al., 1998),

the scale is well grounded theoretically, and items were developed through interviews with > 100 caregivers and a review of the literature (Nolan et al., 1995). Although formal evidence of construct validity has

not been shown (Harvey et al., 2005).

Good internal consistency for the CAMI was reported as 0.86 (Nolan et al., 1995) and more recently as 0.91 (Jarvis et al., 2006), and, acceptable for the subscales

0.64–0.69 for the subscales (Llewellyn et al., 2003).

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The Caregiver Strain Index (CSI, Robinson, 1983)5 minutes

Self-report measure with 13 items related to the demands of caregiving, such as ‘It is a financial strain’ which caregivers subsequently rate ‘Yes -

1’ or ‘No - 0’.

Scores range from 0–13; the higher the scores, the more

considerable the burden experienced.

It can be used as a screening tool for considerable burden, which is indicated by scores above 6 (Rigby et al., 2009;

Robinson, 1983).

Good internal consistency has been presented (Cronbach’s alpha = .86,

Robinson, 1983).

Construct validity of the CSI was also established in relation to items pertaining to

the subjective perceptions of the care-taking relationship by caregivers, all showing significant relationships (r = .28–.67; p ≤ .01); and measures

concerning the emotional health of caregivers with significant correlations demonstrated with the Profile of Mood

States (r = .20–.37, p ≤. 05).

RAND 36-Item Health Survey 1.0 (RAND SF-36, RAND Corporation, 2018)10 minutes

Self-report measure of quality of life with eight subscales (Ware & Sherbourne, 1992): Physical

Functioning, Bodily Pain, Role Limitations due to Physical Health Problems, Role Limitations due to Personal or Emotional Problems, Emotional Well-

being, Social Functioning, Energy/Fatigue and General Health Perceptions. There is also a single

item that measures an indication of perceived change in health.

Each item comprises of rating options on a Likert scale, such as rating ‘in general would you say your health is: 1 – excellent, 2 – very good, 3 –

good, 4 – fair or 5 – poor’.

Scores are coded on a 0 to 100 range and items in the same

scale averaged together (RAND Corporation, 2018).

Higher scores are indicative of a more positive health state.

Items can then be scored and amalgamated to create the

Physical Component Summary (PCS) and Mental Component

Summary (MCS; see Ware, Kosinski, & Keller, 1994 for

scoring instructions followed).

Good discriminant and construct validity was shown through the PCS and MCS scales in the RAND SF-36 relating to

scores on measures of medical and psychiatric conditions (McHorney et al.,

1992).

Good to excellent internal consistency has been demonstrated for all of the subscales (Cronbach’s alpha = 0.78–0.93, Ware &

Sherbourne, 1992).

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Medical Outcomes Support Survey (MOS-SSS, Sherbourne & Stewart, 1991)5 minutes

The original MOS-SSS has 19 self-report items, which measure four dimensions of social support:

Emotional/Informational Support, Tangible Support, Affectionate Support and Positive Social

Interaction.

This measure was adapted for use in the current study, by omitting the Tangible Support subscale

and additional item due to these being more relevant for patients with chronic conditions (who the measure was initially designed for) rather than

caregivers. Therefore, 14-items of the measure were used.

The adaption and omission was also made to reduce testing fatigue at Pre-1. Responses

regarding social support were rated on a scale ranging from ‘1 – None of the time’ to ‘5 – All of the time’, an example item is: ‘someone to have a

good time with’.

Summed scores range from 14-70. Higher scores represent

greater perceived social support.

Previous research has calculated a total score,

summing all of the subscales together, and explored this in relation to stroke caregiver

anxiety (Cumming, Cadilac, Rubin, & Pearce, 2008; Lui et

al. 2012), which was completed in this study but

omitted five items as discussed.

Excellent internal consistency has been evidenced (Cronbach’s alphas for the

subscales > 0.90, Sherbourne & Stewart, 1991).

Results also showed that the MOS-SSS has high convergent and discriminant validity with relevant measures of quality of life,

including physical functioning and mental health.

Modified Rankin Used to obtain an estimate of the stroke survivor’s physical functioning, (i.e. the Excellent test re-test reliability has been

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Scale (mRS, Sulter et al., 1999)1 minute

level of physical disability and dependency in activities of daily living after the stroke, Choi-Kwon et al., 2005; Wan-Fei et al., 2017). Caregivers rated this on a

one-item six-point Likert scale, ranging from ‘0 – No support at all’ to ‘5 – Severe disability; bedridden, incontinent and requiring constant nursing care and attention’.

presented (k = 0.81–0.95, Banks & Marotta, 2007), and moderate inter-rater

reliability (k = 0.56–0.78).

Construct validity has been affirmed through mRS scores being related to the degree of stroke injury, where the lesion was in the brain, the type of stroke, and

short and longer-term disability post-stroke (Banks & Marotta, 2007). Convergent validity has also been shown through comparisons with other scales used to

assess stroke survivors, such as the Barthel Index, the Short Form-36 and the Stroke

Impact Scale; for instance, a strong correlation with the Barthel Index has been

evidenced (r = 0.89, p < 0.001, Lai & Duncan, 1999).

Due to feasibility reasons, the mRS was completed by the caregiver rather than a

clinician, as usually completed in previous research, because the caregivers knew the

stroke survivors the best.

mRS adapted1 minute

The original mRS was adapted to provide an estimate of stroke survivors’ mental functioning, in terms of cognitive ability.

Caregivers were asked to rate stroke survivors in relation to the support they required with tasks requiring cognitive functioning irrespective of physical ability,

such as everyday tasks (e.g., responding to instructions accurately, paying for goods). Ratings were on a 6-point Likert scale, adapted from the mRS physical

functioning categories, ranging from ‘0 – No support at all’, ‘3 – Moderate disability; requiring some help’ to ‘5 – Severe disability; requiring constant care and

attention’.

Not established: the adaptation was made to provide an estimate of cognitive

functioning ability, which was feasible for the caregiver to rate and would not

contribute significantly towards testing fatigue.

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Appendix G – Background Information Questionnaire for Caregivers

Caregiver Information

Date today:________________

Caregiver Name:____________________

Date of birth:________________

Gender:________________

How do you describe your ethnic origin? White – British White – Irish Other white background – please state: ________________________________ Asian or Asian British – Bangladesh Asian or Asian British – Indian Asian or Asian British – Pakistani Chinese Other Asian background – please state: ________________________________ Mixed – White and Asian Mixed – White and Black African Mixed – White and Black British Other ethnic background – please state: ________________________________ Prefer not to say

What is your marital status? Married Single, never married Partner Separated Divorced Widowed Other – please state: _______________________________________________ Prefer not to say

What is your relationship to the person who had a stroke that you support?

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_____________________________________________________________

What are your living circumstances? Live alone Live with partner/spouse Live with family members, please state________________________________ Other – please state: _______________________________________________ Prefer not to say

Employment status: Are you currently…? Employed Self-employed Out of work and looking for work Out of work and not looking for work Homemaker Student Retired Retired to become full-time carer Unable to work Other – please state: ______________________________________________ Prefer not to say

Please state your current occupation, or previous occupation if you’re not currently working:

_____________________________________________________________

What is the highest degree or level of school you have completed? If currently enrolled, please state the highest degree received. No schooling completed Primary education Secondary education (GCSEs/O-levels) Sixth form or college Bachelor’s degree Master’s degree Doctorate degree Other – please state: ______________________________________________

How long have you been supporting the person you care for? How many months/years?

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_____________________________________________________________

On average, how many hours do you spend supporting the person you care for per day (up to 24 hours)?

_____________________________________________________________

Have you been diagnosed with any mental or physical health difficulties? What are they?

Yes No Prefer not to say

If yes, please describe: _____________________________________________________________

_____________________________________________________________

_____________________________________________________________

Are you currently accessing any professional support? Please state:

Yes No Prefer not to say

If yes, please describe: _____________________________________________________________

_____________________________________________________________

_____________________________________________________________

Have you ever had any psychological therapy, this includes any you might be having at the moment? Yes No Prefer not to say

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If yes, please describe: _____________________________________________________________

_____________________________________________________________

_____________________________________________________________

Are you on any medication at the moment? Yes No Prefer not to say

If yes, please describe: _____________________________________________________________

_____________________________________________________________

_____________________________________________________________What do you currently do to manage any anxiety you may experience? Please describe:

_____________________________________________________________

_____________________________________________________________

_____________________________________________________________

Please rate which option is the best fit for the ability of the stroke survivor that you support in relation to physical functioning:

0 No support at all 1 No significant disability despite symptoms; able to carry out all usual duties and activities 2 Slight disability; unable to carry out all previous activities, but able to look after own affairs without assistance 3 Moderate disability; requiring some help, but able to walk without assistance 4 Moderately severe disability; unable to walk and attend to bodily needs without assistance 5 Severe disability; bedridden, incontinent and requiring constant nursing care and attention Prefer not to say

Please rate which option is the best fit for the ability of the stroke survivor that you support in relation to cognitive functioning. Cognitive functioning relates to their cognitive ability to complete everyday tasks unaided, irrespective of physical ability to complete such tasks.

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Examples include responding to instructions accurately, using a bus or paying for goods, brushing teeth or getting dressed.

0 No support at all 1 No significant disability despite symptoms; able to carry out all usual duties and activities 2 Slight disability; unable to carry out all previous activities 3 Moderate disability; requiring some help 4 Moderately severe disability; unable to do most tasks without assistance 5 Severe disability; requiring constant care and attention Prefer not to say

Appendix H – Background Information Questionnaire for Stroke Survivors

Stroke Survivor Information

Date today: __________________________________

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Stroke survivor name:_________________________________

Date of birth:_________________________________________

Gender:____________________________________

How do you describe your ethnic origin? White – British White – Irish Other white background – please state: ________________________________ Asian or Asian British – Bangladesh Asian or Asian British – Indian Asian or Asian British – Pakistani Chinese Other Asian background – please state: ________________________________ Mixed – White and Asian Mixed – White and Black African Mixed – White and Black British Other ethnic background – please state: ________________________________ Prefer not to say

What is the highest degree or level of school you have completed? If currently enrolled, please state the highest degree received: No schooling completed Primary education Secondary education (GCSEs/O-levels) Sixth form or college Bachelor’s degree Master’s degree Doctorate degree Other – please state: ______________________________________________

If known, what type of stroke did you have:

_____________________________________________________________

If known, what date did you have a stroke:

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____________________________________________________________

Appendix I – Relaxation Training Scripts (removed)

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Appendix J – Experience of Relaxation Training Form

How regularly did you complete the relaxation training?

If less than required, why?

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What time of day did you typically take part?

Where did you typically complete training?

What was good about the training?

What didn’t you like about the training?

Would you use this relaxation training in the future? If yes, why? If not, why?

Any additional comments about the training?

What was your experience of taking part in the study?

Appendix K – Ethical approval from the Faculty of Health and Medical Sciences Ethics Committee at the University of Surrey and the Departmental Ethics

Committee at the University of York

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110

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Appendix L – Written Guidance for Relaxation Training and Diary Sheet

Dear

Self-help Relaxation for Anxiety in Caregivers of Community-dwelling Stroke Survivors

Please find enclosed the self-help relaxation audio; it is recommended that you listen to this audio five times per week for four weeks. Please keep a record of how often you listen to the audio (see diary attached).

The track-list of the audio is:

Track 1: Introduction to Progressive Muscle RelaxationTrack 2: Progressive Muscle RelaxationTrack 3: Autogenic Relaxation

Track 1 is an introduction to the main exercises. Please listen to this on as many days as you need to before completing the main exercises (Track 2 and Track 3). Once you feel like you no longer require this introductory track, please feel free to skip to Track 2. Please listen to the tracks in one go per day.

I will telephone you again in approximately 4 weeks’ time to complete some questionnaires about your mood, anxiety and coping, and also to ask you a few questions about your experience of taking part in this study.

Thank you very much for participating. If you have any questions or concerns, please do not hesitate to contact me.

Yours sincerely,

Jenny Csecs Dr Hannah ThompsonTrainee Clinical Psychologist Lecturer(contact details removed)

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Diary

Please tick the days when you have listened to the relaxation audio

Monday Tuesday Wednesday Thursday Friday Saturday Sunday

Week 1

Week 2

Week 3

Week 4

Week 5*

* Please tick the days in Week 5 if you did not begin listening to the relaxation audio at the beginning of Week 1, e.g. if you started listening to the relaxation audio on a Wednesday or later in Week 1 please continue listening to it until this day of Week 5

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Appendix M – Template of Themes for Deductive Thematic Analysis

Themes Definitions/descriptorsCore process themes

Progressive muscle relaxationRelaxes a group [of muscles] ‘The individual is to learn how to relax the principal muscle groups of his body to any extreme degree.

Obviously this implies the reduction of impulses portions of the nervous system, since it is generally agreed among physiologists that there are no specific inhibitory fibres to the striated muscles.’ (Jacobson, 1987, p.526)‘The relaxation is progressive.’ ‘(i) The S relaxes a group, for instance, the flexors of the right forearm, further

and further each minute’ (Jacobson, 1987, p. 526)

Acquainted in a certain order with the principal muscle-groups of their entire body

‘He becomes acquainted in a certain order with the principal muscle-groups of his entire body. With each new group he simultaneously relaxes such parts as have previously received practice.’ (Jacobson, 1987, p.526)

Practises from day to day. Tends towards a state in which quiet is automatically maintained

‘Doing away with residual tension is the essential point of the present method. This may not happen in a moment, even in the practised person.’ (Jacobson, 1987, p. 526)

Autogenic relaxationReduction of exteroceptive and proprioceptive afferent stimulation (it should take place in a quiet room)

‘A reduction of afferent stimuli requires observation of the following points: the exercise should takeplace in a quiet room with moderate temperature and reduced illumination; restricting clothes should be

loosened or removed; and the body should be relaxed, with the eyes closed, before the mental exercises are begun.’ (Kanji, 1997, p.163)

Mental repetition of psychophysiologically adapted verbal formulae

‘The trainee's attitude, while repeating a formula in his or her mind, is deemed as 'passive concentration'.Apprehension must be avoided, as must any goal directed effort. The effectiveness of passive concentrationon a given formula is seen to depend on two other factors: the first, mental contact with the part of the body

indicated by the formula, for example, the right arm; the second, representation of the autogenic formula in the mind. At the outset, passive concentration on a formula should not last more than 30–60 seconds, and should

lead only to superficial relaxation. The time span is gradually increased, with an increasing depth of relaxation, to 10–15 minutes.’ (Kanji, 1997, p.163)

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Mental activity conceived as 'passive concentration'

As the above box involving, ‘Mental repetition of psychophysiologically adapted verbal formulae ‘, therefore these two themes were merged.

Effects of relaxation trainingProgressive muscle relaxation

Release the tension (in muscles) Relaxes a group of muscles which are acquainted in a certain order (Jacobson, 1987).

Absence of thinking When the residual tension of the muscles is relaxed, the intense focus on the muscles eliminates the occurrence of thinking (Jacobson, 1987).

Control of images/attention When muscles are completely relaxed, people will not experience mental images at the same time (Jacobson, 1987).

‘With progressive muscular relaxation, not alone imagery, but also attention, recollection, thought-processes, and emotion gradually diminish’ (p.535).

Autogenic relaxationCounteracting of acute stress or fatigue

‘Mental and physical refreshment being provided’ (Kanji, 1997, p. 164).

Provision of mental and physical refreshment

As the above box involving ‘counteracting of acute stress or fatigue’, so these themes were merged.

Achieve peace of mind The extent to which one experiences inner peace and harmony’ (Lee et al., 2013).

Cope with life’s pressures Improving participants’ ability to cope with life stressors, with coping defined as continuously changing cognitive and behavioural efforts to manage particular demands that are appraised as exceeding a person’s

resources and/or possibly taxing (Lazarus & Folkman 1984; Matthieu & Ivanoff, 2006).

Find emotional balance ‘Once it is possible to reduce excessive tension, a sense of wholeness and well-being is brought about by better communication between the two hemispheres of the brain, which takes place during practice of the exercises. The sense of balance is often reflected in improved physical co-ordination and stamina as reported by athletes,

also greater emotional stability and ability to concentrate on intellectual issues.’ (Carruthers, 1979, p.437).Deleted theme as quotes overlapped with other themes.

Enhance health and general well-being

This theme describes enhancing health and general well-being in terms of ‘well-being encompassing the physical, psychological and social demands’ of caregivers (Draper & Brocklehurst, 2007, p.

265; Anderson 1992), such as their physical health and symptoms of this (e.g., headaches, weight loss),

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psychological symptoms (e.g., anxiety and depression) and stopping work to care for their family member.Deleted theme due to merging it with ‘cope with life’s pressures’ as quotes overlapped between the two

themes.

Improve coping abilities Merged with ‘cope with life’s pressures’, see definition above.

Control the body’s stress responses

Reducing ‘the stress responses brought about by the sympathetic system and increasing the actions of the parasympathetic system’ (Carruthers, 1979, p. 437).

Merged with ‘counteracting of acute stress or fatigue’ theme due overlapping quotes.

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Appendix N – Evidence of Assumption Checking for Repeated Measures ANOVA – Anxiety Scores

HADS-A

Tests of NormalityKolmogorov-Smirnova Shapiro-Wilk

Statistic df Sig. Statistic df Sig.HADS-A Pre-1 .121 15 .200* .956 15 .621HADS-A Pre-2 .185 15 .180 .898 15 .087HADS-A Post .109 15 .200* .967 15 .808

*. This is a lower bound of the true significance.a. Lilliefors Significance Correction

The HADS-A scores did not deviate significantly from normal (p > .05).

HADS-A Pre-1.

HADS-A Pre-1 scores appeared to generally follow a normal distribution.

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HADS-A Pre-1 scores seemed to generally follow a linear pattern with points clustered around the fit

line.

No outliers were identified.

118

HADS-A Pre-2.

HADS-A Pre-2 scores appeared to generally follow a normal distribution.

HADS-A Pre-2 scores seemed to generally follow a linear pattern with points clustered around the fit line.

119

No outliers were identified.

HADS-A Post.

HADS-A Post scores appeared to generally follow a normal distribution.

120

HADS-A Post scores seemed to generally follow a linear pattern with points clustered around the fit line.

No outliers were identified.

121

BAI

Tests of Normality

Kolmogorov-Smirnova Shapiro-Wilk

Statistic df Sig. Statistic df Sig.

BAI Pre-1 .202 15 .099 .899 15 .092

BAI Pre-2 .143 15 .200* .913 15 .149

BAI Post .273 15 .004 .832 15 .010

*. This is a lower bound of the true significance.a. Lilliefors Significance Correction

As the BAI Post scores were both significantly non-normal (p < .05), the plots below suggest that scores generally did not cluster around the fit lines and the histograms show the scores generally did not follow the normal distribution, this means that the assumptions of parametric tests were not met. Hence, Friedman’s ANOVA was used to assess whether there were differences between BAI scores over time.

BAI Pre-1.

BAI Pre-1 scores were not observed to follow a normal distribution.

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BAI Pre-1 scores were observed to generally not cluster around the fit line or follow a linear pattern.

No outliers were identified.

123

BAI Pre-2.

BAI Pre-2 scores were not observed to follow a normal distribution.

BAI Pre-2 scores did not appear to follow a linear pattern and they were not generally clustered around the fit line.

124

No outliers were identified.

BAI Post.

BAI Post scores were not observed to follow a normal distribution curve; there was evidence of positive skew due to a higher frequency of scores being clustered on the left-hand side of the histogram.

125

BAI Post scores were observed to generally not cluster around the fit line, or follow a linear pattern.

No outliers were identified.

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Appendix O - Evidence of Assumption Checking for Repeated Measures ANOVA – Depression Scores

HADS-D

Tests of Normality

Kolmogorov-Smirnova Shapiro-Wilk

Statistic df Sig. Statistic df Sig.

HADS-D Pre-1 .141 15 .200* .960 15 .685

HADS-D Pre-2 .153 15 .200* .935 15 .325

HADS-D Post .160 15 .200* .943 15 .422

*. This is a lower bound of the true significance.a. Lilliefors Significance Correction

The HADS-D scores did not deviate significantly from normal (p > .05).

HADS-D Pre-1.

HADS-D Pre-1 scores appeared to generally follow a normal distribution.

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HADS-D Pre-1 scores seemed to generally follow a linear pattern with points clustered around the fit line.

No outliers were identified.

128

HADS-D Pre-2.

HADS-D Pre-2 scores appeared to generally follow a normal distribution.

HADS-D Pre-2 scores seemed to generally follow a linear pattern with points clustered around the fit line.

129

No outliers were identified.

HADS-D Post.

HADS-D Post scores appeared to generally follow a normal distribution.

130

HADS-D Post scores seemed to generally follow a linear pattern with points clustered around the fit line.

No outliers were identified.

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Appendix P - Evidence of Assumption Checking for Repeated Measures ANOVA – Coping Scores

CAMI Total

Tests of Normality

Kolmogorov-Smirnova Shapiro-Wilk

Statistic df Sig. Statistic df Sig.

CAMI Total Score Pre-1 .122 14 .200* .972 14 .902

CAMI Total Score Pre-2 .121 14 .200* .961 14 .747

CAMI Total Score Post .154 14 .200* .945 14 .487

*. This is a lower bound of the true significance.a. Lilliefors Significance Correction

CAMI Total scores did not deviate significantly from normal (p > .05).

CAMI Total Score Pre-1.

CAMI Total Pre-1 scores seemed to generally follow a normal distribution.

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CAMI Total Pre-1 scores seemed to follow a linear pattern with points generally clustering around the fit line.

No outliers were identified.

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CAMI Total Score Pre-2.

CAMI Total Pre-2 scores seemed to generally follow a normal distribution.

CAMI Total Pre-2 scores seemed to follow a linear pattern with points generally clustering around the fit line.

134

No outliers were identified.

CAMI Total Score Post.

CAMI Total Post scores seemed to generally follow a normal distribution.

135

CAMI Total Post scores seemed to follow a linear pattern with points generally clustering around the fit line.

No outliers were identified.

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CAMI Managing Events/Problem-solving

Tests of Normality

Kolmogorov-Smirnova Shapiro-Wilk

Statistic df Sig. Statistic df Sig.

CAMI Managing Events / Problem-solving Pre-1

.108 14 .200* .970 14 .871

CAMI Managing Events / Problem-solving Pre-2

.178 14 .200* .899 14 .109

CAMI Managing Events / Problem-solving Post

.169 14 .200* .903 14 .126

*. This is a lower bound of the true significance.a. Lilliefors Significance Correction

CAMI Managing Events/Problem-solving scores did not deviate significantly from normal (p > .05).

CAMI Managing Events / Problem-solving Pre-1.

CAMI Managing Events/Problem-solving Pre-1 scores appeared to generally follow a normal distribution.

137

CAMI Managing Events/Problem-solving Pre-1 scores seemed to follow a linear pattern with points generally clustering around the fit line.

No outliers were identified.

138

CAMI Managing Events / Problem-solving Pre-2.

CAMI Managing Events/Problem-solving Pre-2 scores appeared to generally follow a normal distribution.

CAMI Managing Events/Problem-solving Pre-2 scores seemed to follow a linear pattern with points generally clustering around the fit line.

139

No outliers were identified.

CAMI Managing Events / Problem-solving Post.

CAMI Managing Events/Problem-solving Post scores appeared to generally follow a normal distribution.

140

CAMI Managing Events/Problem-solving Post scores seemed to follow a linear pattern with points generally clustering around the fit line.

No outliers were identified.

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CAMI Managing Meanings/Perceptions

Tests of Normality

Kolmogorov-Smirnova Shapiro-Wilk

Statistic df Sig. Statistic df Sig.

CAMI Managing Meanings / Perceptions Pre-1

.249 14 .019 .847 14 .020

CAMI Managing Meanings / Perceptions Pre-2

.200 14 .133 .853 14 .024

CAMI Managing Meanings / Perceptions Post

.193 14 .166 .953 14 .614

a. Lilliefors Significance Correction

Some CAMI Managing Meanings/Perceptions scored deviated significantly from normal (p < .05 for Pre-1 scores and when tested using the Shapiro-Wilk test at Pre-2). However, as Pre-1 and Post scores generally seemed to follow a normal distribution; all Pre-1, Pre-2 and Post scores were generally clustered around the fit line; and no outliers were identified; data were assumed to be normally distributed.

CAMI Managing Meanings / Perceptions Pre-1.

CAMI Managing Meanings/Perceptions Pre-1 scores appeared to generally follow a normal distribution.

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CAMI Managing Meanings/Perceptions Pre-1 scores seemed to generally cluster around the fit line, although there could be evidence of some non-linearity in the data, more data points are required to ascertain this.

No outliers were identified.

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CAMI Managing Meanings / Perceptions Pre-2.

CAMI Managing Meanings/Perceptions Pre-2 scores appeared to not follow a normal distribution.

CAMI Managing Meanings/Perceptions Pre-2 scores seemed to follow a linear pattern with points generally clustering around the fit line, although there could be evidence of some non-linearity in the data more data points are required to ascertain this.

144

No outliers were identified.

CAMI Managing Meanings / Perceptions Post.

CAMI Managing Meanings/Perceptions Post scores appeared to generally follow a normal distribution.

145

CAMI Managing Meanings/Perceptions Post scores seemed to follow a linear pattern with points generally clustering around the fit line.

No outliers were identified.

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CAMI Managing Stress

Tests of Normality

Kolmogorov-Smirnova Shapiro-Wilk

Statistic df Sig. Statistic df Sig.

CAMI Managing Stress Pre-1

.126 14 .200* .941 14 .430

CAMI Managing Stress Pre-2

.137 14 .200* .966 14 .812

CAMI Managing Stress Post

.099 14 .200* .986 14 .996

*. This is a lower bound of the true significance.

a. Lilliefors Significance Correction

CAMI Managing Stress scores did not deviate significantly from normal (p > .05).

CAMI Managing Stress Pre-1.

CAMI Managing Stress Pre-1 scores appeared to generally follow a normal distribution.

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CAMI Managing Stress Pre-1 scores seemed to follow a linear pattern with points generally clustering around the fit line.

No outliers were identified.

148

CAMI Managing Stress Pre-2.

CAMI Managing Stress Pre-2 scores appeared to generally follow a normal distribution.

CAMI Managing Stress Pre-2 scores seemed to follow a linear pattern with points generally clustering around the fit line.

149

No outliers were identified.

CAMI Managing Stress Post.

CAMI Managing Stress Post scores appeared to generally follow a normal distribution.

150

CAMI Managing Stress Post scores seemed to follow a linear pattern with points generally clustering around the fit line.

No outliers were identified.

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Appendix Q – Coded Extracts from the Deductive Thematic Analysis

Themes Data (data of example codes relevant to the themes underlined) Example codes (those specifically relevant to the theme underlined)

Core process themes Progressive muscle relaxation

Relaxes a group of muscles which are acquainted in a certain order

Int: What was good about the training? P2: Breathing, after the 1st week the penny dropped. Muscle exercises.

P7: Liked the calmness, the space put it, felt relaxed, being talked through exercises and talking through tensing muscles - hadn't thought about this

before.P10: clenching muscles = really good

Int: Would you use this relaxation training in the future? If yes, why? If not, why? P7: Yes, intend to. Found it useful, relaxing, took some physical tension away. Helped induce sleep and woke up fresher the next morning,

or had a deeper sleep on occasion.P14: Yes, calmed me down a bit. In spite of everything else going on

around me. Takes time out for self a little. Body relaxes and found I relax with it.

enjoyed breathing exercise, changed after practice, liked muscle exercises

calm, felt more relaxed, create space, liked following a process, muscle exercises, new experience, good

rhythm, good voiceenjoyed PMR

wants to continue, beneficial effect, felt relaxed, felt less tense, helped sleep, felt refreshed, helped sleep

wants to continue, felt calmer, busy life, time out for self, body relaxed, felt relaxed

Practises from day to day tending towards a state in which quiet is automatically maintained

Int: Would you use this relaxation training in the future? If yes, why? If not, why? P16: yes, definitely, and at work too because of the benefit.

Helps if it's all feeling a bit much, calming, help you to feel better.Int: Any additional comments about the training? P8: Not been as calm

when not used it (snapped more). Don't challenge things as much, found it helpful.

Int: What was good about the training? P13: Tried to focus on what I was doing with it. Found it difficult at times with the mind wandering - more practice made it easier. Was helpful. 'felt it's worked' at the end and felt

better for doing it.Int: Any additional comments about the training? P15: Was a slow start getting used to it and the voice and the gaps in between. After a week, it

went swimmingly. I'd never done it before. You know what's coming. Gradually you get to a point where you are calm after it.

wants to continue, apply in different settings, helps if overwhelmed, feel calmer, beneficial effect

helps calmness, manage emotions less, take a step back, beneficial effect

attempted to focus attention, difficult to focus attention, improved over time, beneficial effect,

positive experience

took time to adjust to process, better over time, new experience, certainty expected, wants to do it with someone, difficulty imagining, feel calmer, better

over time

Autogenic

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relaxationReduction of exteroceptive and proprioceptive afferent stimulation (it should take place in a quiet room)

Int: What time of day did you typically take part? P15: First thing in the morning, before breakfast was best for me. Couldn't do it during the day =

too noisy/distracting.P9: Mainly evening ~7pm (before settling down to the telly). Chose to

complete it at this time because no demands (little demands).P8: Sat in armchair in the lounge, easier to do it sitting up than lying

down. Less distractionInt: Where did you typically complete the training? P13: Same place in the

kitchen - tried to find a quiet place without external noises

common specific time, tried other times, attention detracted, noise

common specific time, time needed to complete, attention not detracted

specific place, certain environment required, attention not detracted

specific place, needed quiet, certain environment conditions, attention not detracted

Mental repetition of psychophysiol-ogically adapted verbal formulae whereby mental activity is conceived as ‘passive concentration’

Int: What was good about the training? P11: It was relaxing, had to set myself to listen to it. Get better at it as you know it more - know what's

coming.Int: Any additional comments about the training? P15: Was a slow start getting used to it and the voice and the gaps in between. After a week, it

went swimmingly. I'd never done it before. You know what's coming. Gradually you get to a point where you are calm after it.

Int: What didn’t you like about the training? P3: Difficult to talk through saying statements to themselves, goes against their nature. It would have been better if the two tracks linked together, it was a shame they didn't.

Preferred the first (PMR) one.P10: Saying feeling relaxed made me feel more awake - last part not as

good

felt relaxed, specific state, improve over time, certainly helpful

took time to adjust to process, better over time, new experience, certainty expected, wants to do it with someone, difficulty imagining, feel calmer, better

over timestatements were challenging, didn't fit with self, improvement suggestion, disliked gap, preferred

muscle exercises - positive experience

more awake, preferred PMR

Effects of relaxation training

Progressive muscle relaxation

Release the tension (in muscles)

See data above re: ‘Relaxes a group of muscles which are acquainted in a certain order’.

Absence of thinking and control of

Int: What was good about the training? P8: Put you in a better frame of mind with it than without it, coped better, mind didn't wander as much,

could focus easier.

helped mental state, helped coping, less distracted, better attention

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images/attenti-on

Int: Any additional comments about the training? P15: ....Occasionally mind could wander at the beginning, had to be disciplined to stop mind

from wandering. First few sessions I was learning, I couldn't do it straight away. Able to control my mind and thoughts easier as time went on.

Int: What was good about the training? P9: Breathing - do start to relax. Nearly fell asleep a couple of times (not usually a good sleeper).

thinking at start, commitment to training, better over time, took time to learn,

attention could waver, focussed mind

enjoyed breathing, felt relaxed, almost slept, different experience to usual,

Autogenic relaxation

Counteracting of acute stress or fatigue

Int: What was good about the training? P11: It was relaxing, had to set myself to listen to it. Get better at it as you know It more - know what's

coming.P12: Relaxed when doing it. Took me away from my day

P6: Helped me go to sleep. Made me feel more relaxed. Helped during the day to be a little more patient, a little less 'het up about things'

P14: Made me have a rest from what I was doing - which I wouldn't normally do, taking time out, relaxing

felt relaxed, specific state, improve over time, certainly helpful

felt relaxed, time outhelped with sleep, felt more relaxed, helped

to be calmertime out, new different experience (not

usual), felt relaxedAchieve peace of mind

Int: What was good about the training? P6: Helped me go to sleep. Made me feel more relaxed. Helped during the day to be a little more patient, a

little less 'het up about things'P8: Put you in a better frame of mind with it than without it, coped better,

mind didn't wander as much, could focus easier.P15: Makes you focus on something, rather than silly little things that go through my mind. Feel calmer than before. Help concentrate on one thing - like a hobby. Can switch off from things around you. Difficult to quantify

what's changed. Mind goes back to a certain position.

helped with sleep, felt more relaxed, helped to be calmer

helped mental state, helped coping, less distracted, better attention

focus attention something different, change attention in mind, feel calmer, focus

attention, relate to other activities, focus attention, difficult to pinpoint change,

change in mind state

Cope with life’s pressures and improve coping abilities

Int: What was good about the training? P8: Put you in a better frame of mind with it than without it, coped better, mind didn't wander as much,

could focus easier.Int: Any additional comments about the training? P10: Preferred middle

helped mental state, helped coping, less distracted, better attention

preferred breathing and PMR, positive

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bit to the words, PMR and breathing were better than saying words. Voice = very soothing, really good. 3 funerals in 1 week, disc helped her to cope. Tiredness is the worst thing with coping - what people say is really hard -

the worst thing. Would have liked more of the middle bit.Int: What was good about the training? P14: Yes, calmed me down a bit. In spite of everything else going on around me. Takes time out for self a little.

Body relaxes and found I relax with it.

experience of voice, life events, help with coping, tiredness is negative, improvement

suggestion

wants to continue, felt calmer, busy life, body relaxed, felt relaxed, time out for self

Additional themesPrioritising time

Positives of taking part

Int: What was good about the training? P9: Good to have 15 minutes to myself. Nice to have a quarter of an hour to myself. More did it, enjoyed it

more.P14: Yes, calmed me down a bit. In spite of everything else going on

around me. Takes time out for self a little. Body relaxes and found I relax with it.

Int: Any additional comments about the training? P12: Need to try and get a routine, there isn't one at the moment - things are manic and the days go. When got time for myself, filled it with everything else I needed to do. Will

keep trying to use the CD. I hope the study helps people like me.Int: Would you use this relaxation training in the future? If yes, why? If

not, why? P9: Think I might, pretty sure I would, if having a difficult time would take time out to do it.

Int: Would you use this relaxation training in the future? If yes, why? If not, why? P2: Yes, felt it was of benefit to me personally. Could see how it

could have helped in the early years post-stroke.Int: Any additional comments about the training? P1: was very sceptical

about it working but thought it has been helpful.

time to self, own time, more positive experience over time

wants to continue, felt calmer, busy life, body relaxed, felt relaxed, time out for self

routine is important, lack of time, busy life, lots to do, wants to continue, hopeful about

study

possible continuation, more certain about continuation, challenging experience,

specific circumstance to continue

wants to continue, beneficial effect, timing suggestion

initial scepticism, beneficial effect

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Int: What was your experience of taking part in the study? P10: Really good thing because people don't think about carers, don't ask how they

are.Int: Any additional comments about the training? P16: Finds it very

relaxing, very nice when get to used to and has the time to use it. Surprised how well it worked, very nice. Can't use it as much as would like to. If

people are wary of it, give it a go because it's surprising how quickly you can feel relaxed.

positive experience, neglect of carers

felt relaxed, enjoyable, surprised at the outcome, takes time to use, recommend trying it despite scepticism, needs more

time, works quickly

Note. Int = interviewer, main researcher

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Appendix R – Credibility Check of Deductive Thematic Analysis

A credibility check showed general agreement regarding data illustrating the theme ‘Reduction of exteroceptive and proprioceptive afferent stimulation, such that training should take place in a quiet room.’. Data related to the theme is underlined. Two additional responses to the question: ‘what time of day did you typically take part?’ were also categorised by the independent researcher as fitting the theme.

Questions asked by the main researcher to participants at the end of the relaxation training

Independent researcher ratings Main researcherratings

What time of day did you typically take part?

P8: First thing in the morning when wake and stroke survivor is still in bed

P9: Mainly evening ~7pm (before settling down to the telly). Chose to complete it at this time because no demands (little demands).

P15: First thing in the morning, before breakfast was best for me. Couldn't do it during the day = too noisy/distracting.

P15: First thing in the morning, before breakfast was best for me. Couldn't do it during the day = too noisy/distracting.

Where did you typically complete the training?

P2: In the living room with laptop. No distractions. Quiet environment.

P8: Sat in armchair in the lounge, easier to do it sitting up than lying down. Less distraction.

P13: Same place in the kitchen – tried to find a quiet place with no external noises.

P2: In the living room with laptop. No distractions. Quiet environment

P8: Sat in armchair in the lounge, easier to do it sitting up than lying down. Less distraction

P13: Same place in the kitchen - tried to find a quiet place without external noises

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Part 2: Research

MRP Literature Review

Factors Influencing Anxiety in Caregivers of Community-dwelling Stroke Survivors:

A Systematic Review

Word count: 7991

(excluding Title Page, Abstract, Tables and Figures, References and Appendix)

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Abstract

Anxiety experienced by caregivers of stroke survivors is highly prevalent, but little is

known about which factors influence its occurrence or maintenance. This review

aimed to systematically investigate what factors influence anxiety in caregivers of

community-dwelling stroke survivors. Systematic searches of Medline, PsycINFO,

Scopus and Web of Science databases were conducted. Studies included used an

objective, valid and reliable measure of anxiety; caregivers were informal (unpaid)

and supported stroke survivors who resided in the community. Studies which included

an intervention for caregivers were excluded. Quality appraisal of studies was

achieved by using the Quality Assessment Tool for Quantitative Studies – the

Effective Public Health Practice Tool. Twenty-one studies were identified which

objectively assessed anxiety of caregivers of community-dwelling stroke survivors.

Across the twenty-one studies, prevalence of significant anxiety was found in 11% to

51% of caregivers. Therefore, significant anxiety was found in all studies, even those

which assessed anxiety a considerable time post-stroke. Most consistently, caregivers

reporting considerable burden and symptoms of depression were more likely to

experience anxiety. Worse cognitive function of stroke survivors was also related to

elevated anxiety in caregivers. However, many studies did not adequately detail

factors which may increase anxiety. Less frequently researched factors included

unemployment, poorer health and stroke survivor anxiety, which also appeared related

to increased anxiety. Further research investigating caregiver unemployment, poorer

health and stroke survivor anxiety could therefore reveal whether these are also

consistently related to caregiver anxiety.

Keywords: stroke caregivers, anxiety, community, depression, burden

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Introduction

Stroke is a foremost cause of long-term disability in the UK (Stroke Association,

2018). Nonetheless, due to improvements in stroke survival rates and stroke

rehabilitation, the majority of survivors (80%) return to their own home in the

community (e.g., Dobkin, 2014; Jaracz et al., 2015). Approximately two-thirds of

stroke survivors leave hospital with a disability (e.g. physical disability including

motor impairments, Adamson, Beswick, & Ebrahim, 2004; Stroke Association, 2018).

However, many require ongoing support for their needs (Kalra et al., 2004), with

family members increasingly fulfilling caregiving roles to support them (i.e. informal

caregivers, Olai, Borgquist, & Svärdsudd, 2015; Pandian, Gandhi, Lindley, & Bettger,

2016). Henceforth, the main, informal caregiver is defined as the person most closely

involved in supporting and caring for the stroke survivor at home in an unpaid

capacity (Choi-Kwon, Kim, Kwon, & Kim, 2005; Greenwood & Mackenzie, 2010;

Jaracz et al., 2015).

Evidence suggests that the healthier stroke caregivers are, the better the long-

term rehabilitation outcome for stroke survivors (Glass, Matchar, Belyea, & Feussner,

1993; Greenwood & Mackenzie, 2010; van Exel et al., 2004). Similarly, better

supported caregivers can improve survivors’ quality of life (Visser-Meily, van

Heugten, Post, Schepers, & Lindeman, 2005). Lower stress experienced by caregivers

was in turn predicted by caregivers’ with better perceived health, and was associated

with lower survivor-reported stress and better functioning (Ostwald, Bernal, Cron, &

Godwin, 2009). Therefore, supporting caregivers is essential for both parties.

Yet, caring for stroke survivors inevitably has a negative impact on the

caregiver, who is usually someone who previously enjoyed a close relationship with

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the survivor, which has now qualitatively and potentially permanently altered

(Thompson & Ryan, 2009). The negative impact is likely due to the highly

demanding nature of the role: stroke can lead to a plethora of behavioural, cognitive,

emotional and physical changes (e.g., mobility issues, communication difficulties and

personality changes, Han & Haley, 1999). It has been reported that early post-stroke

caregivers find intervention usually focuses on information provision about stroke and

how to help stroke survivors physically (Camak, 2015; Reeves et al., 2017; Visser-

Meily et al., 2005), but generally they find a lack of support available post-discharge

(Jaracz et al., 2015; Simon & Kumar, 2002). Caregivers can feel undertrained,

underprepared and under-resourced (Kalra et al., 2004), and this can negatively

impact on their physical health (Haley, Roth, Howard, & Safford, 2010; Perkins et al.,

2013; Rigby, Gubitz, & Phillips, 2009) and emotional wellbeing (Greenwood &

Mackenzie, 2010; Greenwood, Mackenzie, Cloud, & Wilson, 2008).

For instance, systematic reviews have illustrated the high instance of burden

and depression in stroke caregivers. Burden is defined as the load or weight held by

caregivers due to fulfilling the caregiving role (Rigby et al., 2009). In a review of 24

studies, Rigby, Gubitz, and Phillips (2009) revealed a 25–54% prevalence of

considerable burden. Han and Haley (1999) found the prevalence of depression from

34–52% in seven reviewed studies. However, when scrutinising the included studies

to elicit possible predictors of caregiver burden factors (e.g., baseline predictors,

patient characteristics or social support factors) these were inconsistently reported

(Greenwood et al., 2008; Rigby et al., 2009). This constitutes a major limitation

because prediction could help target interventions, with an aim to help reduce the

burden and/or depression experienced (Han & Haley, 1999). Targeting interventions

is necessary for three main reasons: 1) the growing number of stroke patients who

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survive, along with the ageing population, means the number of stroke survivors (and

therefore caregivers) is rapidly rising, 2) given the constraints on the health service in

the UK, funding is becoming limited to those most at risk (Oddy & da Silva Ramos,

2013) and 3) offering certain interventions to specific groups of people could be

harmful (e.g. offering relaxation treatment without graded exposure for some people

with panic disorder can lead to paradoxical increases in anxiety, Lilienfield, 2007).

A less explored area of research compared to caregiver depression and burden

is the impact of stroke on caregivers’ anxiety (Greenwood & Mackenzie, 2010). This

is surprising firstly because of the widely accepted finding that anxiety and depression

significantly co-occur (e.g., > 50% of patients experience an anxiety and a depressive

disorder concurrently, Hirschfield, 2001; Kessler et al., 2003; 72% of patients with

major depressive disorder were also diagnosed with generalised anxiety disorder,

Zhou et al., 2017). Secondly, because of the consistent association between stroke

caregiver anxiety and depression with burden (Rigby et al., 2009). Thirdly, because

research suggests that caregivers’ anxiety can be more prevalent and more severe in

comparison to depression (Dankner et al., 2016; Williams, 1993). For example,

Carod-Artal, Coral, Trizotto and Moreira (2009) found the prevalence of significant

anxiety or depression in stroke caregivers was 23% and 12% respectively. Evidence

suggesting the high prevalence of anxiety post-stroke may be due to the stress of

caregiving and long-term uncertainty which can ensue (Greenwood & Mackenzie,

2010). For instance, caregivers can understandably be anxious about subsequent

strokes, as the best predictor of stroke is having had a previous stroke: approximately

one quarter of strokes every year are recurrent strokes (Furie et al., 2010; Stroke

Association, 2017). Furthermore, given the paucity of research on caregivers’ anxiety,

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the best time for intervention is unknown. The adaptation hypothesis would predict

that caregivers will, after time, adjust to the new situation and find ways to cope

(Haley, Roth, Hovater, & Clay, 2015; Jaracz et al., 2015). Yet, how long this could

take, or whether it applies to anxiety in stroke caregivers will need to be determined.

For instance, the adaptation hypothesis may not account for the length of time people

are caregivers of stroke survivors, such that as time continues there could be more

challenges that caregivers need to adapt to and cope with (e.g. although these had

significantly declined from the level reported at 6-months post-stroke, over 50% of

caregivers continued to report considerable burden 5-years post-stroke, Jaracz et al.,

2015). This could mean that if the increasing demands on caregivers are greater than

their adaptation level, anxiety may not significantly reduce over time (Tsai, 2003).

Consequently, the possible impact of time since stroke on caregivers’ anxiety needs to

be explored.

Nevertheless, a number of studies have begun to consider how caregiver and

stroke survivor characteristics contribute to caregiver anxiety (Alexander & Wilz,

2010), but these have not been summarised and evaluated. If common factors are

revealed, this would have important implications for predicting which caregivers

could be more likely to experience anxiety. Interventions could be targeted at these

groups to help caregivers, and in turn lead to better outcomes for stroke survivors. As

the majority of stroke survivors return home, this review will focus on anxiety

reported by caregivers in the community. Therefore, the main aim of this review is to

systematically investigate which survivor and caregiver factors may influence anxiety

in caregivers of community-dwelling stroke survivors.

163

Method

Study Selection

Electronic searches were carried out in February 2017 and repeated in May

2018 using four databases: PsychINFO, Medline, Scopus and Web of Science. This

produced 149, 277, 363 and 279 studies respectively. The terms ‘stroke’, ‘caregiver’

and ‘anxiety’ and their equivalent terms were entered in full-text searches of the

databases (see full range of search terms in Appendix B). Titles and/or abstracts were

subsequently read and studies that met the selection criteria (detailed below) were

included. References of included papers were also screened, with relevant papers

investigated. Contact with study authors was made when it was unclear where

participants resided during the study. Figure 1 details the process of study selection,

with 21 included studies.

Selection Criteria

As outlined by Cochrane (Higgins & Green, 2008), there were four main

criteria utilised to determine which studies to include in the systematic review, with

exclusion criteria summarised in Table 1.

Types of studies.

Studies included used at least one measurement of anxiety which was

completed whilst the stroke survivor resided in the community. Therefore, studies

could be cross-sectional or longitudinal in design. Studies had to investigate whether

factors were related to anxiety using statistical methods (e.g. using correlational

analyses).

164

PRISMA 2009 Flow Diagram

Records identified through database searching

(n = 1068)

Scre

eni

ngIn

clu

ded

Elig

ibi

lity

Iden

tific

ati

on

Additional records identified through other sources (e.g. from reference lists of

papers)(n = 97)

Records after duplicates removed(n = 962)

Records screened(n = 962)

Records excluded, with common reasons(n = 820)

- Stroke survivors were in inpatient settings for the whole study

- Standardised measure of anxiety with good psychometric properties was

not used- Caregivers of stroke patients did not

comprise the whole sampleFull-text articles assessed for

eligibility(n = 142)

Studies included in qualitative synthesis(n = 21)

Full-text articles excluded, with reasons(n = 121)

- Did not measure anxiety in caregivers: (n = 86)

- Stroke survivor did not clearly live in community (n = 12)

- Objective, validated measure of anxiety not used (n = 9)

- Did not analyse factors in relation to caregiver anxiety (n = 6)

- Effect of a specific intervention assessed (n = 3)

- Meta-analytic review (n = 1)- Protocol for prospective study (n = 1)

- Stroke survivor was not an adult (n = 1)

- Patients included with other neurological conditions (n = 1)

- Not published in English (n = 1)

165

Figure 1. PRIMSA diagram of study selection

Table 1

Summary of exclusion criteria with reasons given

Selection criteria Exclusion criteria Reasons givenTypes of studies No measurement of caregiver anxiety

included in the communityNo investigation of variables in relation to

anxiety

To enhance internal validity of findings by assessing results

found in one settingTo meet the study aim

Types of participants

Caregivers of adult stroke survivors only in inpatient settings (e.g. hospital) who did not

return home or to live in the community during the study period

Caregivers were paid for their service i.e. a professional caregiver rather than a family

memberWhole sample did not comprise of caregivers

of people with a stroke (e.g. caregivers of people with different neurological

conditions)

To increase internal validity of findings as caregivers of

people residing in inpatient settings have different

demandsThere are increasingly more

informal caregivers, and professional caregivers have different demands – would

compromise the internal and external validity of findings

To increase internal validity of findings

Types of intervention

Intervention was the focus of the study Likely to provide a different focus i.e. whether the

intervention reduces anxiety, rather than factors which could

make caregivers more susceptible to experiencing

anxiety

Types of outcome measures

Anxiety was not measured using an objective tool with good psychometric properties

To increase reliability of findings

Other Not published in EnglishPublished in journals that were not peer-

reviewed

Unable to understandLess reliable sources

Types of participants.

Informal caregivers of adult stroke survivors who were currently residing in the

community. Caregivers were not required to live with the stroke survivor.

Types of intervention.

166

No intervention was required. Studies comparing pre- and post- levels of

anxiety involving a specific intervention (e.g. targeting anxiety) were not included.

Studies involving an intervention are likely to provide a different focus, i.e. whether

the intervention reduces anxiety, rather than factors which could make caregivers

more susceptible to experiencing anxiety.

Types of outcome measures.

Data pertaining to anxiety that was quantified using an objective measure of

anxiety with good psychometric properties, in other words, a reliable and validated

measure of anxiety in either general or clinical populations. This included measures

with sub-scales of anxiety, which had also been validated.

Quality Assessment of Studies.

Studies were assessed using the Quality Assessment Tool for Quantitative

Studies – the Effective Public Health Practice Tool (EPHPP, see Appendix C) by the

first two study authors. As there is no consensus from the health authorities regarding

a preferred appraisal tool (Quigley, Thompson, Halfpenny, & Scott, 2018), this tool

was chosen because it evaluates a range of study designs including RCTs, non-

randomised controlled studies and uncontrolled studies. Good psychometric

properties (i.e., content and construct validity, and substantial test re-test reliability, κ

= .74, McHugh, 2012; Thomas, Ciliska, Dobbins, & Micucci, 2004) have been shown

when assessing the quality of studies, which is lacking for many quality assessment

instruments (Armijo-Olivo, Stiles, Hagen, Biondo, & Cummings, 2010; Crowe &

Sheppard, 2011). Whilst originally intended to be used to assess the effectiveness of

interventions (Armijo-Olivo et al., 2010), it covers a range of six domains considered

167

important when assessing the quality of studies (Quigley et al., 2018): selection bias,

study design, confounders, blinding, data collection methods, and withdrawals and

drop-outs. Similarly, this tool has been used to ascertain the quality of studies

assessing patients with long-term health conditions when following standard care

guidelines (Chang, Hwang, & Kasimis, 2002), and as such has been deemed

appropriate to assess outcomes of patients over time given the lack of non-

intervention specific quality assessment tools (Katrak, Bialocerkowski, Massy-

Westropp, Kumar, & Grimmer, 2004; Quigley et al., 2018). Therefore, it was deemed

appropriate to be used to assess the quality of studies.

The aforementioned six domains were rated as strong (1 point), moderate (2

points) or weak (3 points). For example, if data collection tools were shown to be

valid and reliable, this would be rated as ‘1 = strong’ for data collection. The first

blinding question was omitted as it did not apply to non-intervention studies. More

information regarding ratings are shown in italics in the dictionary tool in Appendix

C. Overall quality ratings of studies were then assigned in relation to strong (0 weak

ratings given), moderate (1 weak rating given) and weak (2 or more weak ratings

given, EPHPP, 2010).

168

Results

Excluded Studies

Overall 121 full-text articles were assessed for eligibility. Figure 1 includes reasons

for exclusion of studies.

Included Studies

Twenty-one studies were reviewed. The sample size, demographics, time since stroke,

measures utilised and key findings in relation to caregiver anxiety are presented in

Table 2.

169

Table 2

Summary of studies investigating anxiety in caregivers of community-dwelling stroke survivors

StudyFirst author (date)Country conducted

Aims of study N caregiversDropout

(%)N/A = not applicable

Demographics

% female, mean age in years (SD)NR = not reported

Time since stroke (months)

T = time

Design Outcomes measured Key findings

Alexander (2010)Germany

Explore gender differences in spousal

caregivers’ adjustment to stroke, including survivor’s mental impairment,

caregivers’ depressive symptoms,

caregivers’ physical complaints and

caregivers’ anxiety symptoms.

T1: 97T2: 8018%

Caregivers: 68%, 55.2

(10.3)Survivors: NR, 57.6

(9.5)

2.6 (T1)15 (T2)

Prospective

longitudinal

cohort

Caregivers: anxiety (BAI – German), depression (BDI – German), physical

complaints (GBB-24)Survivors: functional independence

(BI), depression (CDS), self-awareness (PCRS)

Female caregivers reported significantly higher anxiety than male

caregivers at T2, but no significant differences were found at T1. At T2,

male caregiver anxiety was more strongly related to survivors’ cognitive

function than female caregivers’ anxiety was.

Stroke survivor depression was associated with higher caregiver

anxiety.

Anderson (1995)Australia

Determine the impact of caregiving for

stroke survivors at 1-year post-stroke.

8412%

Caregivers: 82%, 58

(NR)Survivors: 38%, 70

(NR)

0 (T1) 4 (T2) 12 (T3)

Prospective

longitudinal

cohort

Caregivers: anxiety and depression (HADS), emotional distress (GHQ-28),

impact on social role and burden (SBAS)

Survivors: disability (OHS), functional independence (BI and modified FAI),

cognitive function (MMSE)

Provision of community services did not impact on caregiver anxiety.

Atteih (2015)Ireland

Ascertain the factors that influence the

occurrence of anxious and

depressive symptoms in stroke caregivers.

162N/A

Caregivers: 76%, 59.4

(15.3)Survivors: 34%, 68.3

(12.5)

6 approx. Cross-sectional

Caregivers: anxiety and depression (HADS), satisfaction with care (QCS),

risk of health deterioration (VES)Survivors: cognitive function (MoCA), dependency in activities of daily living (mRS), stroke severity (SSS), anxiety

Caregiver anxiety was predicted by stroke survivor anxiety, depression, and stroke survivor cognitive impairment.

170

and depression (HADS)Carod-Artal (2009)Brazil

Assess the prevalence of burden and mood disorders

in caregivers of Brazilian stroke

survivors.Examine the

association between burden, mood and

health status of caregivers.

200N/A

Caregivers: 77%, 42 (14.1)

Survivors: 46%, 57.7

(13.7)

20.9 Cross-sectional

Caregivers: anxiety and depression (HADS), burden (ZCDI), quality of life

(EQ-5Q)Survivors: anxiety and depression (HADS), stroke severity (NIHSS),

dependency in activities of daily living (mRS), functional independence (BI),

cognitive function (MMSE)

Anxiety was significantly higher in female caregivers than in males. Significant positive correlation between caregiver burden and

caregiver anxiety.Survivors’ physical and cognitive function were positively correlated

with caregivers’ anxiety.

Choi-Kwon (2005)South Korea

Identify factors affecting caregiver

burden in South Korea, approximately 3 years after stroke.

145N/A

Caregivers: 79%, 55

(NR)Survivors: NR, NR

40.8 Cross-sectional

Caregivers: anxiety and depression (HADS), capacity to care (SCQ)

Survivors: dependency in activities of daily living (mRS), cognitive function

(MMSE), depression (DSM-IV criteria)

Caregiver factors affecting their anxiety included being female, feeling

burdened, being unemployed, poor health and low education level; the

survivor factors included aphasia and severe physical functioning

impairment.Cumming (2008)Australia

Assess the psychological impact

of informal caregiving at 3-years

post-stroke, investigating the impact of social

support, depression, anxiety, irritability, strain and caregiver

gender.

116N/A

Caregivers: 71%, 66.9

(13.3)Survivors: 32%, 69.6

(13.7)

36 Cross-sectional

Caregivers: irritability, depression and anxiety (IDAS), social support (MOS-

SSS), strain (CSI)Survivors: irritability, depression and anxiety (IDAS), social support (MOS-

SSS), functional independence (BI, LHS), dependency in activities of daily

living (mRS)

More social support was correlated with less anxiety for caregivers.

Dankner (2016)Israel

Compare well-being between stroke

survivors and their caregivers at 1-year

post-stroke.Examine associations between well-being,

51N/A

Caregivers: 82%, 65.6

(8.3)Survivors: 14%, 68.1

(6.7)

Median = 71 Cross-sectional

Caregivers: anxiety and depression (HADS), burden (ZCBI), health-related

quality of life (SF-36)Survivors: functional independence

(BI), dependency in activities of daily living (mRS), health-related quality of life (SF-36), anxiety and depression

Caregiver anxiety was the only characteristic that was associated with

overall caregiver burden.

171

survivor characteristics and caregiver burden.

(HADS), comorbidity of health conditions (CCI)

Greenwood (2010)UK

Examine anxiety in informal caregivers at approximately 1-month and 3-months

after the stroke survivors’ discharge.

T1: 47 T2: 45

4%

Caregivers: 62%, 49% under 60

Survivors: NR, NR

Discharge (T1) 3-months post-discharge (T2)

Prospective

longitudinal

cohort

Caregivers: anxiety and depression (HADS)

No significant difference between caregiver anxiety at discharge and 3-

months post discharge.

Jaracz (2014)Poland

Evaluate the severity of burden

experienced by caregivers.

Identify predictors of caregiver burden

from the characteristics of

survivors and caregivers – focusing

on sense of coherence and

emotional status.

HADS-A: 8.57 (4.71) Cut-off ≥

11: 49 (33%)

Caregivers: 83%, 53.5

(13.9)Survivors: NR, NR

During hospitalization (T1) – collected demographics 6-months post-discharge (T2)

– outcome measures

Prospective cross-sectional

Caregivers: burden (Polish CBS), anxiety and depression (HADS), sense of coherence (SOC-29), social support

(BSSS)Survivors: functional independence

(BI), stroke severity (SSS), communicative ability (DAAS),

depression (GDS)

Higher caregiver anxiety was found to be a strong predictor of higher levels of

burden.

Jaracz (2015)Poland

Assess the prevalence of

considerable burden among stroke

survivors’ caregivers at 6-months and 5-years post-stroke.

Analyse changes in burden over time.Identify factors

T1: 150T2: 8841%

Caregivers: 83%, 53.6

(12.1)Survivors: 43%, 61.1

(12.2)

6-months post-discharge (T1)5-years after stroke (T2)

Prospective

longitudinal

cohort

Caregivers: anxiety and depression (HADS), burden (CBS), social support

(BPSS), sense of coherence (SOC), quality of life (WHOQOL-BREF)Survivors: stroke severity (SSS),

functional independence (BI), depression (GDS)

Caregiver anxiety predicted burden at T1 and T2; it was the only predictive

factor at T2.

172

associated with burden over time.

Lau (2012)Hong Kong

Identify factors associated with Chinese stroke

caregivers’ depressive symptoms.

123N/A

Caregivers: 72%, 61.4

(12.4) Survivors: 35%, 72.1

(10.0)

27.9 Cross-sectional

Caregivers: anxiety (HADS-A), comorbidity of health conditions (CIRS), burden (CBS – Chinese version), social support received

(LSNS – Chinese version), adverse life events (MLES), fatigue (single

question), service use/support utilised (questionnaire on rehabilitative or

enhancement servicesfor families and caregivers – Chinese

version)Survivors: depression (Chinese version

– GDS), comorbidity of health conditions (CIRS) functional

independence (BI and IADL), cognitive function (MMSE – Cantonese version)

Higher caregiver depressive symptomatology was correlated with

more caregiver anxiety. Higher caregiver anxiety was correlated with more depressive symptomatology in

survivors

Lui (2012)Hong Kong

Describe the relationships between

caregiver self-appraised problem-

solving and caregiver outcomes –

psychological health, physical well-being and social support at

1-week prior to discharge and 3-

months post-discharge.

T1: 103 T2:8517%

Caregivers: 84%, 50 (13.5)

Survivors: 45%, 69.7

(8.3)

1-week before discharge (T1)3-months post-discharge (T2)

Prospective

longitudinal

cohort

Caregivers: anxiety and depression (HADS), health-related quality of life (SF-36) social support (MOS-SSS), problem-solving (PSI), caregiving

difficulties (CAS), strain (CSI)Survivors: depression (CES-D),

functional independence (LHS, MBI)

Caregiver anxiety reduced over time.

173

Macnamara (1990)USA

Characterise caregiver strain in

caregivers of stroke survivors who did not

seek professional support.

41N/A

Caregivers: 83%, 59.3

(10.9)Survivors: NR, 67.6

(4.5)

14.63 Cross-sectional

Caregivers: anxiety, depression and hostility (POMS), strain (CSI)

Survivors: functional independence (BI)

Caregiver anxiety increased in-line with time since stroke.

Mei (2018)China

Assess the relationships between

benefit finding, caregiver burden and psychological well-

being.

145N/A

Caregivers: 70%, 50.4

(13.3)Survivors: 30%, 66.3

(15.7)

Caregivers had been providing care for more than 3 months

Cross-sectional

Caregivers: burden (Chinese CBI), benefit finding (Chinese PAC), anxiety

and depression (Chinese HADS)Survivors: functional independence

(BI)

More anxiety was correlated with higher burden. Lower economic status

was associated with being more anxious in caregivers. Higher anxiety was associated with being a caregiver

of a younger stroke survivor.Ozge (2009)Turkey

Investigate caregiver, survivor and city

based characteristics in relation to

caregiver burden 6-months post-stroke.

198NR

Caregivers: 78%, 44.5

(13.4)Survivors: 37.3% 65.9

(13.1)

0 (T1) 6 (T2)

Prospective

longitudinal

cohort

Caregivers: anxiety (BAI), depression (BDI), stress (CSS)

Survivors: stroke severity (GCS, NIHSS), functional independence (BI),

anxiety (BAI)

Female caregivers were more likely to be anxious. Caregiver anxiety reduced

over time.Caregiver anxiety was more likely in

survivors with poorer physical functioning.

Pucciarelli (2018)Italy

Describe stroke caregivers’ quality of

life, anxiety, depression and

burden at 1-year post-discharge from a

rehabilitation hospital.

Determine baseline predictors of stroke

caregivers’ quality of life, anxiety,

depression and burden among

24445%

Caregivers: 65%, 53 (13)

Survivors: 50%, 71 (12)

Discharge from rehabilitation

hospital (T1) 3-months post-

discharge (T2) 6-months post-discharge (T3) 9-months post-discharge (T4)

12-months post-discharge (T5)

Prospective

longitudinal

cohort

Caregivers: anxiety and depression (HADS), burden (CBI), quality of life

(WHOQOL-BREF)Survivors: functional independence

(BI), comorbidity of health conditions (CCI)

Caregiver anxiety reduced over time (up to 9 months post-discharge), then

increased at 12-months post-discharge. Only significant predictor of higher

caregiver anxiety was survivor younger age.

174

caregivers’ and survivors’

characteristics.Smith (2004)UK

Measure at 1-year post-stroke informal caregivers’ stress and

coping using caregiver well-being.

90N/A

Caregivers: 72%, 58

(NR)Survivors: 38%, 68

(NR)

12 approx. Cross-sectional

Caregivers: anxiety and depression (HADS), health-related quality of life (SF-36), coping (CAMI), satisfaction

with caring (CASI), stress (CADI)Survivors: functional independence (BI

and FAI), cognitive function (Hodkinson Test)

Total hours spent caring was associated with higher anxiety. Lower caregiver health was associated with increased

caregiver anxiety.

Sreedhan (2013)India

Investigate employment status and level of change of social functioning of stroke survivors and their caregiver

and correlate it with severity of stroke,

functional disability, and anxiety and

depression symptoms.

150N/A

Caregivers: NR, NR

Survivors: 23%, 54.4

(12.1)

3 months – 2 years (mean

NR)

Cross-sectional

Caregivers: anxiety and depression (HADS), employment status pre- and post-stroke, social function status (6

questions which were culturally relevant to Indian context), burden

(BAS-adapted)Survivors: stroke severity (NIHSS),

dependency in activities of daily living (mRS), social function status (6 questions which were culturally

relevant to Indian context), anxiety and depression (HADS), employment status

pre- and post-stroke

Caregiver employment loss post-stroke had an association with high anxiety

scores.

Wan-Fei (2017)Malaysia

Examine the effect of depression and

anxiety on quality of life in stroke

survivor-caregiver dyads.

30N/A

Caregivers: 73%, 47 (14.1)

Survivors: 33%, 49 (16.5)

Almost 3 years Cross-sectional

Caregivers: quality of life (Malay SF-12), anxiety and depression (Malay

HADS)Survivors: quality of life (Malay SF-12), dependency in activities of daily

living (mRS), functional independence (BI), anxiety and depression (Malay

HADS)

Greater anxiety in caregivers was related to a decrease in their perceived quality of life in relation to their mental

functioning.

Williams (1993)USA

Pilot test questionnaires with a

group of stroke survivors and

caregivers.Describe caregivers

29N/A

Caregivers: 72%, 56.4

(3.4)Survivors: NR, NR

73.4 Cross-sectional

Caregivers: anxiety, depression, somatic symptoms and anger-hostility (SQ), burden (CBI), perceived burden

of physical health (CHIPS)

Caregiver anxiety positively correlated with burden and depression.

175

in terms of their physical and

emotional wellbeing, and their feelings associated with

possible caregiving stress.

Wilz (2008)Germany

Investigate the prevalence of and

changes in spouses’ anxiety symptoms

over time.Explore factors associated with

spousal caregivers’ anxiety symptoms.

T1: 151 T2: 114

25%

Caregivers: 72%, 58 (11.4)

Survivors: NR, 60 (10.6)

2.6 months after stroke (T1)

15-months post-stroke (T2)

Prospective

longitudinal

cohort

Caregivers: anxiety (BAI), depression (CDS)

Survivors: depression (CDS), functional independence (BI), self-

awareness (PCRS)

Female caregivers experienced significantly higher anxiety compared

to male caregivers, which was consistent over time.

Survivors’ dependency in everyday life was significantly associated with anxiety at 15-months post-stroke.

Antonovsky’s Sense of Coherence Scale (SOC), Barthel Index of Activities of Daily Living (BI), Beck Anxiety Inventory (BAI), Beck Depression Inventory (BDI), Berlin Perceived Social Support Scale (BPSS), Berlin Social Support Scale (BSSS), Burden Assessment Schedule (BAS), Caregiver Assessment Scale (CAS), Caregiver Burden Inventory (CBI), Caregiver Burden Scale (CBS), Caregiver Strain Index (CSI), Caregiver Stress Scale (CSS), Carers’ Assessment of Difficulties Index (CADI), Carers’ Assessment of Managing Index (CAMI), Carers’ Assessment of Satisfaction (with caring) (CASI), Charlson Comorbidity Index (CCI), Cohen-Hoberman Inventory of Physical Symptoms (CHIPS), Cornell Depression Scale (CDS), Cumulative Illness Rating Scale (CIRS), Diagnostic and Statistical Manual of Mental Disorders- Fourth Edition (DSM-IV), Dynamic Assessment of Aphasia Scale (DAAS), Epidemiological Studies Depression Scale (CES-D), EuroQol 5 Dimension (EQ-5Q), Frenchay Activities Index (FAI), General Health Questionnaire (GHQ-28), Geriatric Depression Scale (GDS), Giessen Complaints List (GBB-24), Glasgow Coma Scale (GCS), Hospital Anxiety and Depression Scale (HADS), Irritability, Depression and Anxiety Scale (IDAS), Knowledge of Stroke Questionnaire (KSQ), Lawton and Brody Instrumental Activities of Daily Living (IADL), London Handicap Scale (LHS), Lubben Social Network Scale (LSNS), Medical Outcome Study Social Support Scale (MOS-SSS), Mini-Mental State Examination (MMSE), Modified Barthel Index (MBI), Modified Life Events Scale (MLES), Modified Rankin Scale (mRS), Montreal Cognitive Assessment (MoCA), National Institute of Health Stroke Score (NIHSS), Nottingham Extended Activities of Daily Living Scale (EADL), Oxford Handicap Scale (OHS), Patient Competency Rating Scale modified for use with stroke patients (PCRS), Positive Aspects of Caregiver Questionnaire (PAC), Profile of Mood States (POMS), Psychological General Well-Being Index (PGWB), Quality of Care Survey (QCS), Scandinavian Stroke Scale (SSS), Self-Efficacy Questionnaire (SEQ), Sense of Coherence Scale (SOC-29), Sense of Competence Questionnaire (SCQ), Short Form-12 Health Survey (SF-12), Short Form Health Survey 36 (SF-36), Social Behaviour Assessment Schedule (SBAS), Social Problem-Solving Inventory (PSI), Stroke and Aphasia Quality of Life Scale (SAQOL-39), Symptom Questionnaire (SQ), Vulnerable Elders Scale (VES), World Health Organisation Quality of Life-BREF (WHOQOL-BREF), Zarit Caregiver Burden Index (ZCBI)

176

Study design.

Studies investigating caregiver anxiety comprised of two designs: cross-

sectional (13 studies) and prospective longitudinal cohort (eight studies). All studies

adopted a quantitative approach to data collection and analysis. For longitudinal

studies, the focus of results reported is on caregiver anxiety when the survivor was in

the community (i.e. after discharge from hospital/rehabilitation settings). Length of

time between measurements ranged from 3 months to approximately 4.5 years. If

longitudinal studies included an earlier measurement of anxiety whilst stroke

survivors were in inpatient settings, then this will not be especially discussed due to

the specific focus on caregiver anxiety of stroke survivors in community settings.

Sample size.

The number of caregivers varied across studies (mean = 119, range = 29–244).

In total 2506 caregivers were included. For longitudinal studies, drop-out ranged from

4% to 45%.

Target population.

Most participants were recruited through stroke units, rehabilitation centres

and neurological clinics, through adopting a systematic manner by asking all patients

at specific time points to participate. More robustly, Choi-Kwon, Kim, Kwon, and

Kim (2005) randomly chose participants from stroke medical centres and Anderson,

Linto, and Stewartwynne (1995) selected participants via a register of acute

cerebrovascular events. However, two studies recruited through self-selection in

community samples.

177

Population characteristics.

Every study had more female caregivers participate compared to male

caregivers: 62–84% female. All studies had more male stroke survivors compared to

female stroke survivors. Mean age of caregivers varied, with caregivers typically

being in their fifties (mean = 55.1 years, range = 42–66.9 years). Where reported, in

every study caregivers on average were younger than stroke survivors. Similar to

caregivers, a large range of mean ages for stroke survivors were found (mean = 64.5

years, range = 49–72 years); although four studies did not report stroke survivor ages.

Twenty-one studies were conducted across fourteen different countries.

Quality assessment of studies.

Studies were assessed using the EPHPP. The quality rating of studies ranged

from weak (n = 10), moderate (n = 9) to strong (n = 2, see Table 3). The ratings of the

studies provided indications where studies in this field may require improvements or

are areas of strength, each area of quality assessed using the tool will now be

summarised.

Overall, studies were of moderate quality in relation to possible selection bias.

Generally, participants were ‘somewhat likely’ to represent the target population with

reasonable agreement when asked to participate because they were mostly from

rehabilitation centres, but usually did not use random selection which could limit the

generalisability of the results. Most studies were cross-sectional in design, which

means that the impact of time was not always considered, although some longitudinal

studies did address this. As the EPHPP was originally intended for use with

178

intervention studies, this was a limitation because some of the ratings categories for

study designs did not accurately capture studies included in this review. Many study

designs were rated as ‘other’, this means that any studies which did not have a

specified design as per the tool were classified as ‘weak’ in this category. Therefore,

studies may not have been validly rated on this dimension because ‘other’ could

reflect designs of varying quality. The majority of studies used correlational analyses,

this represents a key weakness of not controlling for possible confounders. There

could be other variables contributing to significant results found, for instance gender

is thought to directly relate to anxiety, and so it is useful to control for this variable

when assessing caregiver anxiety. Some studies which found significant relationships

between variables and anxiety then controlled for these in further analyses, such as

gender in Alexander and Wilz (2010); this approach would be encouraged in future

studies. Correlational analyses also do not provide information regarding the

causation of relationships, although this would be difficult to remedy unless large

populations were followed before a stroke occurs. Rating of blinding was not

considered appropriate due to studies not involving an intervention so this was rated

as not applicable. All studies included a valid and reliable measure of anxiety for an

adult population, which is a significant strength of the studies. A limitation was that

there was significant drop-out in some of the longitudinal studies which limits

possible conclusions made from these analyses, such that participants with higher

anxiety could have dropped out. Therefore, conclusions could be biased and be less

generalisable to other stroke caregivers. Whilst some studies tested for differences

between completers and those who dropped out, this was uncommon and will be

discussed more in the discussion section.

179

Table 3

Quality assessment of studies completed using the Quality Assessment Tool for Quantitative Studies

First author (date)

Selection Study design

Confo-unders

Blinding Data collection methods

Withdra-wals and drop-outs

Global rating and average score

Alexand-er (2010)

** ** * N/A * * *

Anderson (1995)

** ** *** N/A * * **

Atteih (2015)

** *** * N/A * ** **

Carod-Artal (2009)

** *** ** N/A * ** **

Choi-Kwon (2005)

*** *** *** N/A * ** ***

Cumming (2008)

** *** ** N/A * ** **

Dankner (2016)

** *** ** N/A * ** **

Greenw-ood (2010)

** ** *** N/A * * **

Jaracz (2014)

** *** *** N/A * ** ***

Jaracz (2015)

** ** *** N/A * *** ***

Lau (2012)

** *** *** N/A * ** ***

Lui (2012)

*** ** *** N/A * * ***

Macnam-ara (1990)

** *** *** N/A * ** ***

Mei (2018)

*** *** ** N/A * ** ***

Ozge (2009)

** ** * N/A * *** **

Pucciarel-li (2018)

** ** * N/A * *** **

Smith (2004)

** *** * N/A * ** **

Sreedhan (2013)

** *** *** N/A * ** ***

Wan-Fei (2017)

** *** *** N/A * ** ***

Williams *** *** *** N/A * ** ***

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(1993)Wilz (2008)

** ** * N/A * ** *

Note. * indicates the strength of the evidence: * = strong ** = moderate *** = weak. N/A = not applicable.

Occurrence of caregiver anxiety.

Fifteen studies reported the mean anxiety levels of caregivers, using reliable

and valid measures. Eleven of these studies utilised the Hospital Anxiety and

Depression Scale (HADS, Zigmond & Snaith, 1983), three used the Beck Anxiety

Inventory (BAI, Beck, Epstein, Brown, & Steer, 1988) and one used the Symptom

Questionnaire (Williams, 1993, see Table 4). Often, studies translated and adapted the

HADS and BAI when using them in different cultural populations, and reported

appropriate reliability and validity statistics (e.g., HADS in Italy, Pucciarelli et al.,

2018; BAI in Germany, Alexander & Wilz, 2010). Internal reliability of anxiety

measures was only calculated in one study (Cronbach’s alpha of Italian HADS-A =

0.82, Pucciarelli et al., 2018).

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Table 4

Measures of anxiety used in studies

Measure Construct measured; items and scale

Scoring and interpretation

Psychometrics

Hospital Anxiety and Depression Scale (HADS, Zigmond & Snaith, 1983)

14-item questionnaire with seven questions related to symptoms of anxiety and depression each, these represent the HADS-A and HADS-D subscales.Widely used measure of symptoms of anxiety and depression.

Items are scored on a scale of 0 to 3. When summed they indicate the degree of anxiety and depression, with higher scores indicating greater levels of these respectively.

The HADS-A has been validated against other clinical measures of anxiety, such as the Spielberger State-Trait Anxiety Inventory – State Form (Bjelland, Dahl, Haug, & Neckelmann, 2002). Good internal consistency has been shown for the HADS-A (mean α = 0.83).

Beck Anxiety Inventory (BAI, Beck et al., 1988).

21-item questionnaire which assesses common anxiety symptoms on a 4-point scale.Extensively used in clinical and research populations (Muntingh et al., 2011).

4-point scale is scored from 0 to 3. All responses are summed to comprise a total anxiety score, with the higher the score indicative of more anxiety symptoms.

Excellent internal consistency has been demonstrated (α = 0.92, Beck et al., 1988).Has been validated against other anxiety measures including the State-Trait Anxiety Inventory (Fydrich, Dowdall, & Chambless, 1992). Discriminant validity in relation to depression has also been illustrated (Enns, Cox, Parker, & Guertin, 1998).

Symptom Questionna-ire (SQ, Williams, 1993)

Consists of 92-items and estimates distress across four domains (subscales): anxiety, depression, somatic symptoms and anger-hostility.

Each subscale is subdivided into a Symptom subscale and a Well-being subscale. The maximum score for each Symptom subscale is 17 and for each Well-being subscale is 6, see Kellner (1983) for further information.Higher scores indicate more distress, such as more anxiety, depression, somatic symptoms and anger-hostility.

Internal consistency of all subscales were excellent (α = 0.92 for the anxiety subscale). Validity has been shown with respect to the concurrent validity with the Taylor Manifest Anxiety Scale and in discriminating between placebo and treatment conditions (Kellner, 1983; Kellner & Sheffield, 1973).

Profile of Contains 65 Items are scored from Good internal consistency has

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Mood States (PMOS, Macnamara, Gummow, Goka, & Gregg, 1990)

words/statements that describe the feelings people have.Used to assess levels of anxiety, depression and hostility (McNair, Lorr, & Droppleman, 1971).

0 to 4.Higher scores indicate more distress.

been reported for the Profile of Mood States (α = 0.63–0.96).Good concurrent validity has been assessed with conceptually similar scales, such as the Psychological Wellbeing Scale (r = -0.68, McNair et al., 1971; Statistics Solutions, 2018).

Irritability, Depression and Anxiety Scale (IDAS, Cumming, Cadilhac, Rubin, Crafti, & Pearce, 2008)

Measures anxiety, depression, inward irritability and outward irritability

Items are scored from 0 to 3, with the higher the score the more indicative of difficulty in the components.

It has been validated in a general hospital setting and has shown good concurrent validity with the Clinical Anxiety Scale (r = 0.51, Aylard, Gooding, McKenna, & Snaith, 1987; Portney & Watkins, 2007).Internal consistency for the Anxiety subscale ranged from acceptable to good (α = 0.74–0.87, Snaith, Constantopoulos, Jardine, & McGuffin, 1978).

Fourteen studies classified the degree of caregiver anxiety but the method of

doing this varied. Within this, the characterisation or ‘cut off’ for clinically significant

anxiety varied, as well as the questionnaires used. Nine studies utilised the HADS-A

to operationalise significant anxiety (‘borderline’ or ‘abnormal’ anxiety characterized

by a score of 8 [n = 3] or 11 [n = 6] respectively). Studies utilising the BAI (n =

3) and the Irritability Depression Anxiety Scale (n = 1) all characterised clinical

anxiety differently. These differences in classification mean comparison between

studies and eliciting key factors related to caregivers’ anxiety should be made with

caution. The proportion of caregivers experiencing these considerable levels of

anxiety ranged from 11–51% for borderline anxiety and from 6–33% for abnormal

anxiety.

Two studies did not report the mean, prevalence or cut offs of anxiety.

Factors related to anxiety.

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Studies have investigated a range of factors in relation to caregiver anxiety

post-stroke (Table 5). These typically can be categorised into caregiver and stroke

survivor characteristics, with sub-categories of demographic characteristics, well-

being and time since stroke, and with the addition of functioning for survivors.

Findings will be discussed sequentially, focusing initially on factors which have been

researched more extensively by studies as this allows for more robust conclusions to

be made. The majority of studies evaluated potential factors that correlate with

caregiver anxiety post-stroke.

Table 5

Factors examined in relation to caregiver anxiety, with studies which found a significant relationship and/or no relationship reported

Factor associated with higher anxiety unless otherwise stated

Significant relationship, p < .05

Effect size for significant

relationships found

No relationship

CaregiverGender (female) Alexander & Wilz (2010)

Carod-Artal, Coral, Trizotto, & Moreira (2009)

Choi-Kwon et al. (2005) Ozge et al. (2009)

Wilz & Kalytta (2008)

d = .67NR

NRd = 0.6d = 0.44

Alexander & Wilz (2010)

Atteih et al. (2015) Jaracz, Grabowska-Fudala, Górna, & Kozubski (2014)

Pucciarelli et al. (2018)

Longitudinal studies (anxiety reduced over time)

Lui, Lee, Greenwood, & Ross (2012)

Ozge et al. (2009) Pucciarelli et al. (2018) Wilz & Kalytta (2008)

NR

NRNR

β = 0.57

Alexander & Wilz (2010)

Greenwood & Mackenzie (2010) Jaracz et al. (2015)

Burden (higher) Carod-Artal et al. (2009) Choi-Kwon et al. (2005) Dankner et al. (2016)

Mei, Wilson, Lin, Li, & Zhang (2018)

Williams (1993)

r = .61d = 0.71β = 1.11r = .60

r = .52

0

Age (older) 0 Alexander & Wilz (2010)

Cumming et al. (2008) Jaracz et al. (2014)

Pucciarelli et al. (2018) Wilz & Kalytta (2008)

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Health, including quality of life (poorer)

Choi-Kwon et al. (2005) Smith et al. (2004)

Wan-Fei et al. (2017) Williams (1993)

NRβ = -0.10 β = -0.58

r = .65

Wan-Fei et al. (2017)

Depressive symptoms (higher)

Atteih et al. (2015) Lau, Tang, Wong, Mok, &

Ungvari (2012)Williams (1993)

OR = 5.07r = .61

r = .82

0

Unemployment Choi-Kwon et al. (2005) Sreedhan et al. (2013)

NRNR

Pucciarelli et al. (2018)

Level of education (low)

Choi-Kwon et al. (2005) NR Alexander & Wilz (2010)

Pucciarelli et al. (2018)

Relationship to survivor

Wives were significantly more anxious than

husbands or parents (Carod-Artal et al., 2009)

NR Adult child vs. spouses (Cumming et al., 2008)

Socio-economic status (lower)

Mei et al. (2018) F = 6.36 Sreedhan et al. (2013)

Social support (lower)/functioning (decline)

Cumming et al. (2008) β = -0.61 Sreedhan et al. (2013)

Time spent caregiving (higher)

Smith et al. (2004) R2 > 10%, β = .03 Carod-Artal et al. (2009)

Benefit finding (less)

Mei et al. (2018) r = -.38 0

Living arrangement (living with the survivor)

0 Pucciarelli et al. (2018)

Increase in visits to religious places

Sreedhan et al. (2013) r = .02 0

SurvivorFunctional status (lower)

Carod-Artal et al. (2009) Choi-Kwon et al. (2005)

Ozge et al. (2009)

r = -.03NR

r = -.27

Alexander & Wilz (2010)

Cumming et al. (2008) Pucciarelli et al. (2018)

Smith et al. (2004) Wilz & Kalytta (2008)

Mental health (worse)

Alexander & Wilz (2010) Atteih et al. (2015)

Carod-Artal et al. (2009) Lau et al. (2012)

Smith et al. (2004)

r = .3OR = 5.17

r = .16r = .03

β = .29, β = .39

Cumming et al. (2008) Wilz & Kalytta (2008)

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Cognitive impairment

Alexander & Wilz (2010) Atteih et al. (2015)

Carod-Artal et al. (2009) Choi-Kwon et al. (2005)

r = -.33OR = 2.35

r = -.08NR

0

Age (younger) Mei et al. (2018) Pucciarelli et al. (2018)

r = -.22β = -.053

0

Time since stroke (longer)

Macnamara et al. (1990) β = .82, F = 7.70 Carod-Artal et al. (2009)

Health (poorer) 0 Pucciarelli et al. (2018) Wan-Fei et al. (2017)

Stroke survivor anxiety (higher)

Atteih et al. (2015)Carod-Artal et al. (2009)

OR = 3.47r = 0.25

0

Support (less) 0 Smith et al. (2004)

Energy (less) Smith et al. (2004) β = -0.08 0

Gender 0 Pucciarelli et al. (2018)

Notes. NR refers to when the effect size was not reported and could not be calculated due to the information reported. Effect sizes were classified in terms of magnitude per Cohen (1988): ‘small’: d = 0.2 or r = 0.1, ‘medium’: d = 0.5 or r = 0.3 and ‘large’: d = 0.8 or r = 0.5.

Quality assessment has been used to help determine which factors to report on

in relation to anxiety (see Table 3). For example, if only two studies examined a

specific factor (e.g. socio-economic status of caregiver) and both studies were rated as

weak then this will not be discussed in-text due to likely biased results. Similarly, if

only one study studied a specific factor then this will not be discussed explicitly due

to the lack of reproducibility and possible reliability at this time. The quality

assessment has also been used to highlight areas of strength and suggested areas of

improvement in the field, both in relation to individual studies through this section

and the field as whole (see Discussion section).

Caregiver factors.

Demographic characteristics.

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Four demographic factors of caregivers were consistently examined in relation

to caregiver anxiety: gender, age, unemployment and level of education. Where

appropriate, effect sizes will be judged in relation to the widely accepted

categorization of effect size by Cohen (1988); ‘small’: d = 0.2 or r = 0.1, ‘medium’: d

= 0.5 or r = 0.3 and ‘large’: d = 0.8 or r = 0.5 – see Appendix D for all reported effect

sizes.

Gender.

Five studies found an association of female gender and anxiety at different

time points post-stroke, with a small or medium effect size, where this could be

determined. Initially, Choi-Kwon et al. (2005) aimed to elucidate which factors

impact on caregiver burden at approximately 3 years post-stroke in a cross-sectional

study. Gender was found to significantly impact on anxiety experienced, with female

caregivers being more likely to be anxious. However, whilst Choi-Kwon et al. (2005)

randomly selected participants from a medical centre to participate, only 44% agreed

which suggests that the sample may be biased. By using a more robust design and a

higher uptake of participants (81% of those invited participated) in a prospective

longitudinal study, Wilz and Kalytta (2008) provided additional support that female

caregivers were more likely to be anxious at 3-months post-stroke (d = 0.44). Further

strength for this finding was afforded when being female was associated with higher

anxiety at 15-months post-stroke (d = 0.44), and the proportion of females in the

clinical range for anxiety was higher than in males at both time points. Again, Ozge et

al. (2009) replicated this finding such that at 6-months post-stroke female caregivers

were more likely to be anxious (medium effect size, d = 0.61); however, the exact

number of caregivers included in this analysis is unknown because drop-out rates

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from the initial 198 caregivers were not reported. This means that the estimated effect

of gender could have less precision. Similarly, Carod-Artal et al. (2009) also found

that at 21-months post-stroke female caregivers experienced significantly higher

anxiety compared to male caregivers. Although all studies had a highly skewed ratio

of female to male caregivers participating, with this on average being 3:1, this is

similar to the ratio of female to male caregivers for this age group generally (57–81%

female, Sharma, Chakrabarti, & Grover, 2016).

Some research suggests anxiety may increase over time in women, but not in

men. Alexander and Wilz (2010) in their longitudinal study of caregivers, at 3-months

post-stroke women reported more anxiety but this difference was not statistically

significant after applying Bonferroni correction for multiple analyses conducted. Yet,

at 15-months post-stroke, female caregivers were found to experience significantly

higher anxiety compared to male caregivers (medium effect size, d = .67). What

further strengthens this finding is the minimal drop-out over the 1-year period (18%),

which suggests that the sample is less likely to be biased. Pucciarelli et al. (2018)

investigated 244 caregivers across five time points in the first year after stroke and

found gender was not a significant predictor of anxiety, however, this approached

significance (p = .066). Additionally, where no effect was found, drop-out rate was

high (45% over the 1-year period). Whilst gender did not significantly impact on who

was more likely to drop-out, those experiencing higher anxiety may have been more

likely to drop-out. Interestingly, the studies which found female caregivers were more

likely to experience higher anxiety measured anxiety on average later post-stroke

(mean = 17 months), compared with the studies which indicated no relationship

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(mean = 6 months). Thus, anxiety may be more likely to increase in female caregivers

over time.

Age.

Caregiver age was consistently found unrelated to caregiver anxiety. For

example, Cumming, Cadilhac, Rubin, Crafti, and Pearce (2008) found that age of

caregiver did not predict anxiety at 3-years post-stroke in 116 caregivers in Australia.

A lack of relationship between age and anxiety was upheld across a range of ages,

across cultures and time since stroke (3-months–3-years post-stroke). Furthermore, all

studies were moderate or strong in quality rating, hence this finding seems to be

reliable and valid.

Unemployment.

Caregiver anxiety was shown to be associated with caregiver unemployment.

For example, Choi-Kwon et al. (2005) demonstrated that in 147 caregivers (40

months post-stroke) being unemployed was associated with higher anxiety. Similarly,

in 150 caregivers’ employment loss was found to be associated with higher anxiety

(ranging from 3 months–2 years post-stroke, Sreedharan et al., 2013). Yet, these

studies did not control for possible confounders, it is possible other variables may also

contribute to caregiver anxiety. For instance, burden levels such as financial burden,

may confound the relationship as higher burden can lead to more anxiety (Rigby et

al., 2009). Alternatively, Pucciarelli et al. (2018) found that when comparing

employed to retired caregivers (up to 12-months post-discharge from rehabilitation

hospital), neither type of employment status was more likely to predict anxiety. In the

above studies, unemployment/employment loss is likely to relate to loss of

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employment at a working age. Thus, it is possible that economic demands may

increase over time as caregiving demands continue, and subsequently lead to an

increase in anxiety.

Anxiety over time.

Generally, caregiver anxiety reduced over time in longitudinal research and

there seemed to be a negative interaction between age of stroke survivor and caregiver

anxiety, such that being a caregiver of a younger stroke survivor could lead to anxiety

being less likely to reduce (see stroke survivor characteristics section) over time. Four

studies found an anxiety reduction between time points. Lui, Lee, Greenwood, and

Ross, (2012) found that caregiver anxiety measured using the HADS-A significantly

reduced from stroke survivor (mean age = 70 years) discharge to 3-months post-

discharge, although an effect size could not be calculated. Examining this relationship

in more detail over a longer period, Pucciarelli et al. (2018) reported anxiety

significantly decreased consistently over five time points (although an effect size

could not be calculated) across 1-year following discharge from rehabilitation

hospital, where the mean age of stroke survivors was initially 71 years old. Overall

the mean age of stroke survivors in studies where anxiety significantly reduced over

time was 67 years old. However, three studies reported no significant change in

caregiver anxiety between time points and where stroke survivors’ mean age was

reported the average of these was 60 years old. Interestingly, although no significant

relationship was found between time and anxiety, all anxiety scores reduced (see

Jaracz et al., 2015, mean age of stroke survivors = 61 years old). Therefore, a negative

interaction between age of stroke survivor and caregiver anxiety could be present,

which may be due to fears concerning whether younger caregivers believe they will

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be able to cope with being a caregiver for potentially more years (Pierce, Steiner,

Govoni, Thompson, & Friedemann, 2007).

Well-being.

Four factors related to wellbeing were frequently examined in relation to

caregiver anxiety: burden, depression, quality of life / physical health and social

support, listed from the most to least studied.

All studies which investigated burden and anxiety found a significant

relationship whereby higher perceived caregiver burden was associated with higher

caregiver anxiety, and it was demonstrated to predict it. For example, in a cross-

sectional study of 200 caregivers, Carod-Artal et al. (2009) found a positive

relationship between caregiver burden and anxiety, with a large effect size (r = 0.61).

This finding was then shown to be reliable over time: Jaracz et al. (2015)

demonstrated that increased burden was associated with higher anxiety at 6-months

and 5-years post-stroke (OR = 6.82, large effect size, Chen, Cohen, & Chen, 2010).

This result indicates that the odds of experiencing considerable burden are six times

higher if clinical anxiety is present (scoring 11 or more on the HADS-A) and no other

factors were significant at both time points (e.g., time spent caregiving and sense of

coherence). Although high drop-out was reported (42%), all the research supports the

relationship between anxiety and burden and at different time points after stroke (after

3-months of caring to 5-years post-stroke). Dankner et al. (2016) extended Jaracz et

al.’s (2015) finding further by controlling for age and sex of caregivers, and found

caregiver anxiety was associated with caregiver burden.

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Similarly, studies reliably found that more symptoms of depression was

related to higher anxiety in caregivers. This strong finding held across cultures

(Ireland, Hong Kong and USA), measures of anxiety with medium–large effect sizes

shown (HADS-A and the Symptom Questionnaire, OR = 5.07, r = 0.61–0.82,

respectively) and a large range of time post-stroke (6-months–6 years).

Poorer caregiver health was overall found related to anxiety, although studies

were of poor quality. Health was rated by caregivers on a subjective unvalidated 3-

point scale (Choi-Kwon et al., 2005), the presence of common physical symptoms

(e.g. hypertension, Williams, 1993), or through measures of quality of life. Quality of

life was rated in relation to physical and mental functioning (Smith et al., 2004) or

solely mental functioning (Wan-Fei et al., 2017). However, Wan-Fei et al. (2017) also

found that caregivers’ quality of life in relation to their physical function did not

impact on their anxiety. This finding may be less reliable compared to Smith et al.’s

(2004) finding due to the smaller sample size (30 vs. 90) and no discussion of the

required sample size for adequate power. Studies examining this relationship

commonly did not explore if this changed over time or controlled for other factors

which may be relevant, such as burden or gender due to the common associations

found between these factors and caregiver anxiety. Thus, there could be interactions

which have not yet been explored, whereby if caregivers experience significant

burden and poor health concurrently this may increase their anxiety twofold, and if

female caregivers experience poor health then they may also be considerably more

likely to experience significant anxiety. Stroke survivor characteristics.

Research on stroke survivor characteristics in relation to caregiver anxiety has

mostly focused on the physical functioning level and cognitive impairment of stroke

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survivors, their wellbeing (measured by anxiety and depression symptoms), and age.

Other demographic factors, the impact of time and quality of life and health were less

extensively researched in relation to stroke survivors and caregiver anxiety.

Therefore, these will not be discussed in-text but findings related to these are shown

in Table 5.

Functioning.

Functioning has been examined in relation to the physical functioning status

and the estimated level of cognitive impairment of stroke survivors. Physical

functioning of stroke survivors was the most studied stroke survivor characteristic in

relation to caregiver anxiety (n = 8).

In the majority, no relationship was found between stroke survivor physical

functioning and caregiver anxiety, although there were some contradictory findings.

The discrepancy could be explained by the severity of physical function dependency.

Intriguingly, in the three studies which found a relationship between physical function

and caregiver anxiety, the stroke survivors were rated as more independent compared

with studies which found no relationship (average Barthel Index scores of 64 vs. 41).

Therefore, whilst generally there does not seem to be a consistent relationship

between stroke survivor physical functioning and caregiver anxiety, if stroke

survivors are more independent this could mean their caregivers are more likely to

experience anxiety because stroke survivors may lack insight and this has been

associated with increased caregiver distress (Dockree, Tarleton, Carton, & Fitzgerald,

2015). For example, whilst stroke survivors may be independent with physical tasks,

caregivers may worry that survivors could put themselves in danger due to awareness

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difficulties, such as not perceiving possible dangers when crossing roads (Barnsley,

McCluskey, Middleton, 2011).

Worse cognitive function in survivors was generally associated with higher

caregiver anxiety. All four studies investigating this found poorer cognitive function

was related to higher levels of caregiver anxiety with small–medium effect sizes. This

was shown across different measures of cognitive functioning. Although the measures

of cognitive function used were brief (Hoops et al., 2009), they provide a first insight

into the relationship between cognitive functioning and caregiver anxiety. For

instance, most recently Atteih et al. (2015) demonstrated that caregivers of stroke

survivors who scored in the cognitive impairment range on the Montreal Cognitive

Assessment were 2.35 times more likely to score in the clinical range for anxiety

compared to caregivers of stroke survivors who were not cognitively impaired.

There could also be an interaction between gender and time since stroke. For

example, based on socialisation, female caregivers could be better able to adjust to

emotional changes in stroke survivors when these are measured with cognitive

changes. Thus, female caregivers could be less impacted by impairment in this

domain, whereas male caregivers may take more time to adjust to emotional changes.

For example, when Alexander and Wilz (2010) examined the relationship between

caregiver anxiety and stroke survivor cognitive function more closely, they showed

that there was only a significant relationship found for male caregivers 3-months post-

discharge. Therefore, at 3-months post-discharge the cognitive function of stroke

survivors did not impact on female caregivers’ anxiety, nor was there an impact for

either gender at 15-months post-discharge. This difference in result between Atteih et

al. (2015) and Alexander and Wilz (2010) could be due to the incorporation of

194

emotional adjustment in the Patient Competency Rating Scale, as well as cognitive

functioning, as opposed to solely measuring cognitive functioning as in the Montreal

Cognitive Assessment and Mini-Mental State Examination. Additionally, female

caregivers could be able to adjust to emotional changes in stroke survivors faster than

male caregivers. To summarise, poorer cognitive functioning of stroke survivors is

related to caregiver anxiety, but this relationship could be impacted on by emotional

changes in the stroke survivors, which may initially lead to increased anxiety in male

caregivers as they may take longer to adjust to these changes.

Well-being.

Stroke survivors’ wellbeing was consistently assessed in terms of the

association between depression and caregiver anxiety. Generally, evidence was

provided that stroke survivor depression was related to caregiver anxiety. Three

studies demonstrated a significant relationship, whereby the more symptoms of

depression the survivor reported, the higher their caregivers’ anxiety with medium–

large effect sizes found. One study did not find a relationship, but this is likely related

to the measures used. All studies which reported significant results used the HADS-A

to measure caregiver anxiety, whereas Wilz and Kalytta (2008) used the BAI. The

BAI has more of a focus on physiological/somatic symptoms compared to the HADS-

A (Fydrich et al., 1992; Muntingh et al., 2011). It could be that the symptoms of

depression exhibited by stroke survivors may more generally impact on caregiver

anxiety (Hirschfield, 2001), rather than their somatic anxiety symptoms focused on

more so by the BAI (Julian, 2011), hence the non-significant result found by Wilz and

Kalytta (2008).

195

More consistently, both Atteih et al. (2015) and Carod-Artal et al. (2009)

found significant relationships between stroke survivor anxiety and caregiver anxiety,

with medium effect sizes. They showed that caregivers of stroke survivors with higher

anxiety were more likely to experience higher anxiety themselves. It is unclear what

direction this occurs in, e.g., whether stroke survivor anxiety increases caregiver

anxiety or vice versa. Longitudinal research would be beneficial to elucidate this.

Demographic characteristics.

Age of stroke survivor was the only demographic factor investigated

consistently in relation to caregiver anxiety: Mei, Wilson, Lin, Li, and Zhang (2018)

and Pucciarelli et al. (2018) found a considerable relationship between caregivers of

younger stroke survivors being significantly more anxious. In these studies, on

average stroke survivors were older (mean ages: 66.3 and 71 years old) than the

caregivers (mean ages: 50.4 and 53 years old). Pucciarelli et al. (2018) suggested that

caregivers of younger stroke survivors could be more anxious because of a higher

expectation that survivors will recover to their pre-stroke condition, which may then

not occur. Although, as with many of the studies discussed, Mei et al. (2018) did not

control for other possible confounders. Pucciarelli et al. (2018) rectified this by using

a linear mixed-effects model to test the aforementioned hypothesis and included

factors such as time since stroke in the model, which is important to include because

as has been discussed generally caregiver anxiety has been shown to reduce over time.

The authors also had specified the required sample size prior to recruitment for

adequate power (N = 200) which was actualised. As such, the finding that younger

stroke survivors are more likely to have anxious caregivers is likely to be reliable.

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Discussion

The presented evidence suggests that a significant proportion of caregivers of

community-dwelling stroke survivors experience considerable anxiety, which is in-

line with the stroke caregiver literature concerning burden and depression. In terms of

caregiver factors, most consistently, experiencing high levels of burden and

depressive symptoms were related to caregiver anxiety. Generally, but researched by

fewer studies, poorer health and unemployment/employment loss were also shown to

be correlated with increased anxiety. Caregivers of stroke survivors with more

cognitive impairment and depressive symptoms were generally more likely to be

anxious. Similarly, although studied to a lesser extent, caregivers of younger stroke

survivors and anxious stroke survivors had substantially higher anxiety levels. Whilst

not as often found to be statistically significant, general trends suggested that female

caregivers were more likely to be anxious and overall that caregiver anxiety is likely

to reduce over time. Caregiver age and stroke survivor physical functioning level

were commonly indicated not to be related to caregiver anxiety, although when stroke

survivors were more independent this seemed to suggest an increased likelihood of

caregivers experiencing anxiety.

Given the increasing need to target intervention towards specific groups due to

funding cuts, these results suggest that principally intervention should be targeted

towards caregivers of stroke survivors who are experiencing burden and depressive

symptoms, and those who help support stroke survivors with cognitive impairment

and depressive symptoms. Worryingly high levels of anxiety were also shown in

studies which assessed anxiety many months and years post-stroke, which suggest

intervention is required. The findings also point toward a pressing need for the care of

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stroke survivors to move toward a joint intervention approach so that long-term

outcomes can be improved (Rigby et al. 2009). Although a causal relationship has not

been clarified, there were clear links between caregiver and stroke survivor wellbeing.

Identification and assessment of caregiver anxiety could be achieved through the

completion of the HADS-A soon after the occurrence of the stroke as, across the

studies, levels of anxiety seemed to be higher earlier post-stroke. The HADS-A is also

short and easy to administer, and thus would allow for simple, early possible

identification of need so that appropriate interventions could be implemented. Initially

intervention could comprise of evidence-based psychological approaches

recommended for anxiety, such as psychoeducation about anxiety and self-help

approaches in the first instance which could then be stepped up as required (National

Institute for Health and Care Excellence, 2014). Stepped up approaches could

comprise of cognitive behavioural therapy or applied relaxation due to the evidence of

effectiveness in reducing anxiety (National Institute for Health and Clinical

Excellence, 2011).

Caregivers of stroke survivors with cognitive impairment were more likely to

be anxious, whereas caregiver anxiety was not consistently found to correlate with

stroke survivors’ physical functioning ability. This could be explained by the usual

support provided after stroke. More of an emphasis on teaching caregivers general

knowledge about stroke is present, rather than on providing more specific support in

relation to helping support stroke survivors with cognitive impairment (Reeves et al.,

2017; Visser-Meily et al., 2005). Furthermore, there can also be more of a focus on

teaching caregivers about how to support stroke survivors physically, rather than

cognitively and emotionally (Camak, 2015). Findings from a Cochrane review have

198

shown that this information provision does not significantly help caregiver mood

(Forster et al, 2012). Additionally, it could be more difficult for caregivers to adjust to

cognitive changes. For instance, Alexander and Wilz (2010) explain this result

through suggesting that disease-related mental impairments and possible personality

changes (e.g. the caregiver seeming like a stranger) can burden the relationship

between caregiver and stroke survivor. Similarly, this increased difficulty for

caregivers to adjust to cognitive change compared to physical limitations has been

supported in the traumatic brain injury literature (Khan, Baguley, & Cameron, 2003;

Marsh, Kersel, Havill, & Sleigh, 2002).

However, there needs to be more consistency in measurement between studies

of stroke survivor cognitive and physical impairments to be able to add support to or

evidence against these findings, as in the four studies which examined cognitive

function in relation to caregiver anxiety three different measures were used. To tease

apart the differences between the impact of cognitive and physical impairment on

caregiver mood, the same measures need to be used in studies when examining this,

such as continuing to consistently measure stroke survivor physical functioning using

the Barthel Index. Moreover, future research examining the relationship between

cognitive function, physical functioning and caregiver anxiety could utilise the

Montreal Cognitive Assessment to measure cognitive function. This is due to its

established validity in stroke survivors and high level of specificity (0.92), which is

important as a cognitive screening tool, (Cumming, Churilov, Linden, & Bernhardt,

2013; Dong et al., 2010) and because it is free to use and takes approximately 10

minutes to administer.

Methodological Critique

199

There were a reasonable number of longitudinal studies included (8/21), and now

more emphasis needs to be placed on which factors influence the change in anxiety

over time. Previously the paucity of longitudinal studies in this area was noted as a

problem, as an understanding of how caregiver outcomes may change over time could

not be elucidated (Greenwood et al., 2008; Rigby et al., 2009). However, the number

of longitudinal studies included allowed for the exploration of how caregivers’

anxiety changes over time, which is important given that caregiving is a dynamic

process. The age of stroke survivors may also be relevant as it seemed that caregivers

of younger stroke survivors were more likely to be anxious, and, for this group of

caregivers, anxiety did not appear to significantly reduce over time (Alexander &

Wilz, 2010; Greenwood & Mackenzie, 2010; Jaracz et al., 2015). It would be helpful

if studies measured anxiety consistently, such as using the HADS-A, to facilitate

comparing factors over time in a more reliable manner. For example, as anxiety seems

to be higher in caregivers of younger stroke survivors, research could explore whether

anxiety in younger caregivers could be less likely to reduce over time. The HADS is

also useful because it allows for the measurement of anxiety and depression in both

caregivers and stroke survivors, which is important given the high co-occurrence of

these experiences (Atteih et al., 2015; Smith et al., 2004). Furthermore, as the

majority of studies included involved dyads within 2-years post-stroke, follow-up

studies could assess the impact of stroke over longer durations. Caregivers may need

to fulfil this role for many years, and the occurrence of certain factors (e.g., burden,

depression, being a female caregiver) may increase the potential for a cumulative

negative impact (Macnamara et al., 1990).

Restricted Information Gathered

200

There was a wide variety of variables considered, of which many were not

consistently assessed in relation to caregiver anxiety. Therefore, it was difficult to

discern which factors are most likely to result in caregiver anxiety. Although this is

likely influenced by some of the studies’ main aims not being specific to anxiety,

rather focusing on the effect of caregiving more generally on psychological well-

being or specifically in relation to burden. Whilst the majority of studies (17/21)

considered the impact of caregiver and survivor factors together on anxiety, the most

commonly and dyadically examined variables were demographics of caregivers and

survivors. Thus, other factors which may have a salient influence on caregiver anxiety

have not been consistently assessed.

Other factors which could assert substantial influence on caregiver anxiety

include caregivers’ physical health, caregivers’ employment loss post-stroke, level of

social support, number of hours’ caregiving and whether caregivers are accessing

support from services. These factors are suggested based on literature previously

discussed (Jaracz et al., 2015; Kalra et al., 2004; Rigby et al., 2009), but were scarcely

examined in relation to anxiety in the included studies (e.g. only six studies reported

on service usage post-discharge from rehabilitation centres). Moreover, about half of

the studies did not specify whether survivors were included who had survived more

than one stroke (n = 12). However, it would seem logical that caregivers of people

who have had more than one stroke could experience increased anxiety because the

chances of having an additional stroke increase with each stroke experienced (Furie et

al., 2010). Future research should seek to explore the impact of these additional

factors on caregiver anxiety.

Inconsistency and Unclear Reporting

201

Studies usually failed to describe the nuances of the situation which may

impact on anxiety. For instance, evidence suggests that living apart from the person

being cared for helps to protect against caregivers experiencing distress (Brodaty &

Donkin, 2010; Cherry et al., 2013). Moreover, approximately half of the studies (n =

11) did not record a clear definition of ‘caregiver’, which means that where the

caregiver lives is unknown and it is therefore difficult to afford replicability. This

diversity is likely to impact on the support caregivers may require, their ways of

coping and levels of anxiety (Greenwood et al., 2008). Studies should seek to provide

definitions of caregivers in their publications to allow more informed conclusions to

be made and to enable the replication of research.

In many of the excluded studies, it was unclear where the stroke survivor was

at the time of the research and how long post-stroke the research was conducted. For

example, it was difficult to discern whether the stroke survivor was in inpatient

rehabilitation, a general hospital setting or in the community. The demands for

caregiving can be extremely different dependent on this factor, with the demands

usually being higher when the stroke survivor has recently returned to live in the

community (Hankey, 2004). Furthermore, approximately one third of studies

measured caregiver anxiety at the point of stroke survivor discharge from inpatient

services, but did not report the mean time since stroke (n = 7). This makes it

challenging to ascertain the impact time may have post-stroke or the amount of

service input received, and how these may relate to caregiver anxiety. More clarity

around these factors should be provided in the future as this may allow more

consistent relationships with caregiver anxiety to be revealed.

Studies were conducted across fourteen countries, but the possible impact of

202

culture on caregiver anxiety is somewhat unknown. Whilst this indicates that

caregiver anxiety seems to be high irrespective of culture/country, and often the

individual studies compared and explained their results sensitively in relation to

results found in other cultures (e.g. Mei et al., 2018), there could be specific cultural

influences which may impact on caregiver anxiety that have not been researched in

more detail within particular cultures. To provide a positive example, Sreedharan et

al. (2013) suggested that they found lower levels of caregiver anxiety due to Indians

typically receiving more help from family systems following stroke, rather than

caregiving responsibilities falling predominantly on one relative. Clearly, findings

need replication within cultures to provide more support for variables found

associated with caregiver anxiety.

Statistical Considerations

The majority of studies (n = 14) used univariate analyses to assess whether

factors were associated with and/or related to anxiety, therefore considering the

interdependency of variables was not achieved. Based on the current findings, this

could pose a problem if intervention is targeted towards one specific group as it may

not work if there is another factor contributing to anxiety which has not been

considered (Rigby et al., 2009). Thus, future studies need to control for the

contribution of other variables (e.g. caregiver depression) when assessing caregiver

anxiety to examine this more validly (Greenwood et al., 2008). However, when

assessing numerous factors sample size must be considered as, to have adequate

power, these analyses require more participants (Field, 2013). Furthermore, a priori

power calculations should be reported as per Lui et al. (2012) to allow for appropriate

sample sizes to be obtained relevant to the proposed analyses. Post-hoc power

203

analyses should also be employed to analyse results to ensure that the results can be

validly judged (Greenwood et al., 2008). Likewise, more salient detail in studies

should be provided to allow for effect sizes to be calculated, as often the standard

deviation of the mean differences or the mean anxiety for specific groups were not

reported.

Selection and Publication Bias

Minimal assessment of whether levels of anxiety influenced drop-outs

occurred, although some evidence suggests that older age is related to increased

chance of drop-out. Only half of the longitudinal studies analysed differences between

responders and dropouts. This limits the extent to which possible systematic

differences between these two groups and the impact this may have on anxiety can be

assessed. Illustrating this, Jaracz et al. (2015) found that drop-outs were significantly

more likely to be caregivers of older stroke survivors, not be spouses and be

caregivers of survivors with lower physical function. Pucciarelli et al. (2018) provided

some support for this in that the only statistical difference between those who

completed the study and those who did not, was that the completers were slightly

older (caregiver mean age: 54 vs. 51 years old). Thus, older caregivers or caregivers

of older stroke survivors may be more likely to drop-out of or participate in research,

and as such the results could be biased towards younger caregivers and stroke

survivors. Therefore, studies should ensure non-response rates are recorded and

possible differences analysed between groups, as it is important to ascertain whether

certain groups of participants (e.g. older caregivers) were more likely to drop out as

this group could be the most in need of intervention.

How much publication bias impacted upon the current review is unknown. No

204

studies were found which reported null effects across all variables, which could mean

the results are biased. However, non-significant findings were reported within studies,

and so this is unlikely to be a major limitation (Rigby et al., 2009).

Conclusions

Findings suggest that a substantial number of caregivers experience significant

anxiety post-stroke. Most consistently, caregivers experiencing high levels of burden

and depressive symptoms were related to caregiver anxiety. Caregivers of stroke

survivors with more cognitive impairment and depressive symptoms were in the

majority significantly more likely to be anxious. Recommendations for future

research in terms of using more consistent measures, further work investigating

factors which few studies examined, and more detailed reporting in articles

concerning anxiety have been made. Early detection of anxiety has been

recommended and intervention targeted towards these caregivers should be achieved

to increase the likelihood of better outcomes for both caregivers and stroke survivors.

205

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219

List of Appendices to the Literature Review

Appendix A - Author guidelines for chosen journal (removed)

Appendix B - Search Terms Utilised in Databases

Appendix C - Quality Assessment Tool for Quantitative Studies – the Effective Public

Health Practice Tool (EPHPP) (removed)

Appendix D – Statistical Analyses in Included Papers Summary

220

Appendices to the Literature Review

Appendix A – Author guidelines for chosen journal (removed)

221

Appendix B – Search Terms Utilised in Databases

Databases Search terms

Medline TX (TX ( stroke or cerebrovascular accident or cva ) AND TX ( carer or care-giver or caregiver or family member or relative or informal care* or spouse ) AND TX ( anx*

OR anx* AND depress* )

Narrow by Language: - English

Narrow by Source Types: - Academic Journals

PsycINFO TX ( stroke or cerebrovascular accident or cva ) AND TX ( carer or care-giver or caregiver or family member or relative or informal care* or spouse ) AND TX ( anx*

OR anx* AND depress* )

Narrow by Language: - English

Narrow by Source Types: - Academic Journals

Scopus ALL ( stroke  OR  cerebrovascular  AND accident  OR  cva

AND  carer  OR  care-giver  OR  caregiver  OR  family  AND member  OR  relative  OR  informal AND care*  OR  spouse

AND  anx*  OR  anx*  AND  depress* )

AND  ( LIMIT-TO ( DOCTYPE ,  "ar" ) )  AND  ( LIMIT-TO ( LANGUAGE ,  "English" ) )

Web of Science

TOPIC: (stroke OR cerebrovascular accident OR cva) AND TOPIC: (carer or care-giver or caregive* or family member or relative or informal care* or spouse) AND

TOPIC: (anx* OR anx* and depress*)

Refined by: LANGUAGES: ( ENGLISH ) AND DOCUMENT TYPES: ( ARTICLE )

Timespan: All years. Indexes: SCI-EXPANDED, SSCI, A&HCI, CPCI-S, CPCI-SSH, BKCI-S, BKCI-SSH, ESCI, CCR-EXPANDED, IC.

222

Appendix C - Quality Assessment Tool for Quantitative Studies – the Effective

Public Health Practice Tool (EPHPP) (removed)

223

Appendix D - Statistical Analyses Summary

Study first author (date)

Study aims Level of anxiety mean (SD – unless

otherwise stated)

Relevant statistical analysis

Factors examined in relation to caregiver

anxiety

Main findings, including effect sizes (p < .05 unless otherwise stated)

Alexander (2010)

Explore gender differences in

spousal caregivers’

adjustment to stroke, including survivor’s mental

impairment, caregivers’ depressive symptoms, caregivers’

physical complaints and

caregivers’ anxiety

symptoms.

BAICut-off score

≥11 %

Female caregivers 3-months post-stroke: 10.21 (7.37), 42% 15-months post-stroke: 9.42 (7.82),

32%

Male caregivers 3-months post-stroke: 6.8

(9.65), 22% 15-months post-stroke: 4.36 (6.47),

9%

Paired t-tests assessed the changes in men and women caregivers’ anxiety over time.

Bivariate Pearson correlations assessed the

value and the significance of the

association between survivor-related

variables, caregiver demographics and caregivers’ mental

health.

Caregivers: time, depression, physical complaints, gender,

age, education

Survivors: physical functioning, mental

functioning, depression

At 15-months post-stroke, women reported significantly more symptoms of anxiety (p = .004, d

= .67).Caregiver age, caregiver education level and

survivor physical functioning were not found to be significantly associated with caregiver anxiety (p

> .05).

In male caregivers, worse survivor mental functioning was associated with higher caregiver

anxiety at 15-months post-stroke (r = -.33, p < .05).At 3-months post-stroke, higher stroke survivor depression was associated with higher female

caregiver anxiety (r = .3, p < .01). At 15-months post-stroke, higher survivor

depression was associated with higher caregiver anxiety for both genders (female r = .25, p < .05;

male r = .62, p < .001).

Anderson (1995)

Determine the impact of

caregiving for stroke survivors at 1-year post-

HADS-ACut-off ≥ 8:

37 (44%)

Chi-square test examining whether the provision of community

services has an impact on caregivers experiencing

Caregivers: relationship to stroke survivor, provision of community services

Provision of community services was not significantly associated with caregiver anxiety (p

> .05).

224

stroke. significant anxiety.

Atteih (2015)

Ascertain the factors that

influence the occurrence of anxious and depressive

symptoms in stroke caregivers.

HADS-A: 5.9 (4.7)

Cut-off ≥ 8: 31%

Logistic regression analysis examining

factors related to anxiety.

Caregivers: depression, dissatisfaction with

services, vulnerability, age, gender

Survivors: anxiety, depression, functional

ability (mRS), cognitive impairment

(MoCA)

Stroke survivor anxiety (OR = 3.47, p = .01), stroke survivor depression (OR = 5.17, p = .002), stroke

survivor cognitive impairment (OR = 2.35, p = .049), and caregiver vulnerability (OR = 4.03, p

= .023) found to be significantly related to caregiver anxiety.

No relationships between age of caregiver, gender of caregiver, dissatisfaction with care, stroke

survivor disability and the presence of anxious symptoms were found.

Carod- Assess the HADS-A: 7.8 Correlational analysis Caregivers: burden, Female caregivers experienced significantly higher

225

Artal (2009)

prevalence of burden and mood

disorders in caregivers of

Brazilian stroke survivors.

Examine the association

between burden, mood and health

status of caregivers.

(4.6)Cut-off ≥ 11:

23%

between caregiver measures and stroke

survivors.

ANOVA comparing anxiety levels between wives, husbands and

parents of stroke survivors.

gender, relationship to survivor, duration of

caring

Survivors: time since stroke, anxiety,

depression, physical functioning

anxiety compared to male caregivers (p = 0.007, not enough information reported to calculate ES). They

were also more likely to experience anxiety disorders (26% vs. 11%, chi-squared, p = 0.04, not

enough information reported to calculate ES).

Higher caregiver anxiety was associated with higher levels of burden (r = 0.61, p < .001).

Caregiver anxiety was not correlated with time since stroke or duration of caring (p > .05).

Poorer caregiver quality of life was associated with higher levels of anxiety (r = -0.57, p < .001).

Wives were significantly more likely to be anxious compared with husbands or parents (p < .001, not

enough information reported to calculate ES).

A very weak relationship between survivor’s physical functioning status and caregiver anxiety (r = 0.07, r = -0.03, r = 0.05; p < 0.05): worse physical

functioning in survivors was associated with slightly increased caregiver anxiety.

A very weak association was shown between stroke survivors with poorer mental functioning and

increased caregiver anxiety (r = -0.08, p < 0.05).Caregivers with anxious stroke survivors were more likely to be anxious themselves (r = 0.25, p < .001),

similar was shown for depressed stroke survivors and increased caregiver anxiety (r = 0.16, p < 0.05).

Choi-Kwon (2005)

Identify factors affecting

caregiver burden

HADS-ANot anxious: 106 (72%)

Student t-tests investigating factors

related to anxiety level.

Caregivers: gender, education, employment status, health, burden

Caregiver factors relating to higher caregiver anxiety were: being female (p < .05), unemployed (p < .05), poor health (p < .05), and low education

226

in South Korea, approximately 3

years after stroke.

Borderline (scored 8-10):

16 (11%)Very anxious

(Cut-off ≥ 11): 25 (17%)

ANOVA assessing the impact of anxiety on

burden.

Survivors: aphasia, physical functioning

(mRS)

level (p < .05). Caregivers with higher anxiety were significantly more likely to display higher levels of burden (F[6.66], p < .01, d = 0.71 when comparing

very anxious to not anxious).

Survivor factors associated with caregiver anxiety were having aphasia (p < .05) and a severe mRS score (i.e. poor physical functioning, p < .05).

Cumming (2008)

Assess the psychological

impact of informal

caregiving at 3-years post-stroke, investigating the impact of social

support, depression,

anxiety, irritability, strain

and caregiver gender.

IDASBorderline or

morbid anxiety (cut-off ≥ 6: 34%)

Spearman’s rho correlation between the

MOS-SSS (social support survey) and the irritability, depression

and anxiety scale (IDAS).

Multivariate binary logistic regression to

determine the contributions of variables

to each IDA subscale.

Caregivers: total social support,

emotional/informational, tangible, affectionate support, positive social

interaction, age, relationship to survivor

Survivors: patient ID, patient mRS

Multivariate regression showed that caregivers were more anxious if they had less social support (β = -

0.61, SE = .22, p = .007). Less emotional/informational support (r = 0.19, p < .05),

less tangible support (r = -0.21, p < .05) and less positive social interaction (r = -0.19, p < .05) were

significantly correlated with more anxiety.

Total social support and affectionate support were not significantly correlated with anxiety. No

relationships were found between caregiver age, caregiver relationship to the survivor, patients’

irritability/depression/anxiety and patients’ functional ability, and caregiver anxiety (p > .05).

Dankner (2016)

Compare well-being between

stroke survivors

HADS-A: 7.7 (5.1)

Cut-off ≥ 8:

Paired sample t-test comparing anxiety

between caregivers and

Caregivers: burden, sex, age

Caregivers experienced significantly higher levels of anxiety 1-year post-stroke compared to stroke

survivors (p = .02, not enough information reported

227

and their caregivers at 1-year post-stroke.

Examine associations

between well-being, survivor characteristics and caregiver

burden.

23 (45.1%) survivors.

Linear regression model for the association between caregiver

burden and anxiety.

Survivors:anxiety

to calculate ES).

Caregivers experiencing higher levels of burden were more likely to experience higher levels of anxiety (β = 1.11, SE = 0.22, t = 5.13, p < .001),

after adjusting for age and sex of caregivers.Caregiver anxiety was the only characteristic of

caregivers associated with burden.

Greenwo-od (2010)

Examine anxiety in informal

caregivers at approximately 1-

month and 3-months after the stroke survivors’

discharge.

HADS-A1-month post-

discharge: 8.33 (4.75)3-months

post-discharge: 7.87 (4.26)

Cut-off ≥ 81-month post-

discharge: 51%

3-months post-

discharge: 49%

Paired sample t-test comparing the difference

between caregiver anxiety at 1-month and

3-months post-discharge.

McNemar’s test comparing the number of caregivers classified as experiencing clinical

anxiety at 1-month post-discharge and 3-months

post-discharge.

Caregivers: time No significant difference between mean caregiver anxiety 1-month post-discharge and 3-months post-

discharge (t-test statistic = 1.56, p = 0.395).

No significant difference between the number of caregivers classified as experiencing significant

anxiety 1-month post-discharge and 3-months post-discharge (p = 0.289).

Jaracz (2014)

Evaluate the severity of

burden

HADS-A: 8.57 (4.71)

Cut-off ≥ 11:

Correlational analyses between caregiver

anxiety and factors.

Caregivers: burden, gender, sense of coherence, age

No significant difference between anxiety levels in male and female caregivers (p > .05), or between

anxiety and age of caregivers (p > .05).

228

experienced by caregivers.

Identify predictors of

caregiver burden from the

characteristics of survivors and caregivers –

focusing on sense of coherence and emotional status.

49 (33%)Correlational analyses

between caregiver anxiety with burden and

sense of coherence.

Caregivers experiencing more anxiety were more likely to experience high levels of burden (r = 0.60,

p < .10).Caregivers with a greater sense of coherence were more likely to experience less anxiety (r = .63, p

< .001).

Jaracz (2015)

Assess the prevalence of considerable

burden among stroke survivors’ caregivers at 6-months and 5-

years post-stroke.

Analyse changes in burden over

time.Identify factors associated with

burden over time.

HADS-A6 months

post-stroke: 8.1 (4.4)

Cut-off ≥ 11 for

completers: 26, (23%)

5 years post-stroke: 7.8

(5.0)Cut-off ≥ 11

for completers: 22 (19%)

Logistic regression between caregiver and survivor factors and caregiver burden.

Caregivers: time, burden

Caregivers’ level of anxiety did not significantly change between 6-months and 5-years post-stroke

(p > .05).

Higher caregiver anxiety was related to higher caregiver burden at 6-months and 5-years post-

stroke (OR = 6.82, 95% CI: 1.69–31.54, p = 0.005).

Lau (2012)

Identify factors associated with Chinese stroke

caregivers’

NR Correlational analysis between caregivers’ and

survivors’ depression with caregiver anxiety.

Caregivers: depression

Survivors: depression

Higher caregiver depressive symptomatology was correlated with more caregiver anxiety (r = 0.61, p

< .001).

229

depressive symptoms.

Higher caregiver anxiety was correlated with more depressive symptomatology in survivors (r = .03, p

< .05).

Lui (2012)

Describe the relationships

between caregiver self-

appraised problem-solving

and caregiver outcomes –

psychological health, physical well-being and

social support at 1-week prior to discharge and 3-

months post-discharge.

HADS-ADischarge = 6

(5.1)3-months

post discharge =

4.3 (4.2)

Paired t-test comparing anxiety 1-week before

discharge and 3-months post-discharge.

Caregivers: time Anxiety significantly reduced between 1-week before discharge and 3-months post-discharge (t-test = -2.43, p = 0.02, not enough information reported

to calculate ES).

Macnama-ra (1990)

Characterise caregiver strain in caregivers of stroke survivors who did not seek

professional support.

NR Multiple regression of caregiver and survivor

factors in relation to time since stroke.

Caregivers:time

Survivors: physical functioning

The longer the time since stroke, the more likely caregivers were to be anxious (β = .8172, F = 7.70, df = 1, 39, p < .01), which was not influenced by stroke survivor level of disability (in relation to

physical functioning).

Mei (2018)

Assess the relationships

between benefit

HADS-A: 7.5 (4.53)

Correlational analysis between caregiver

burden, age and benefit

Caregivers: burden, benefit finding, economic status

Caregivers with higher burden were more likely to be anxious (r = 0.60, p < .001).

Caregivers who perceived themselves to have a

230

finding, caregiver burden and

psychological well-being.

finding with caregiver anxiety.

ANOVA to examine the association between economic status and caregiver anxiety.

Survivors: agelower economic status (F = 6.36, p =.002, not

enough information reported to calculate ES) and of younger stroke survivors were more likely to be

anxious (r = -.22, p = .008).

Caregivers with lower benefit finding were also more likely to be anxious (r = -.38, p < .001).

Ozge (2009)

Investigate caregiver,

survivor and city based

characteristics in relation to

caregiver burden 6-months post-

stroke.

BAI at time of stroke:

Females: 8.6 (6.3)

Males: 4.6 (3.7)

BAI 6-months post-

stroke: Females: 7.8

(7.6) Males: 3.5

(4.8)

Cut-off ≥ 16Time of

stroke: 17%6-months

post-stroke: 15%

Mixed model analysis of factors related to

caregiver anxiety and burden.

Paired samples t-test comparing caregiver

anxiety at time of stroke to 6-months post-stroke.

Correlational analysis of survivor prognosis with

caregiver anxiety.

Caregivers: time, gender

Survivors: physical functioning

Female caregivers were more likely to be anxious post-stroke (199.25 df, F = 23.8, p < .001, d = 0.61

at 6-months post-stroke).

Caregiver anxiety significantly reduced from the time when stroke survivors had their stroke to 6-

months post-stroke (t = 2.55, p = 0.012, not enough information reported to calculate ES).

Higher caregiver anxiety was more likely in survivors with worse physical functioning (r = -

0.18, p < .05 for Glasgow Coma Scale scores; r = 0.25, p < .001 for NIH stroke scale scores; r = -0.27,

p < .001 for Barthel Index scores).

Pucciarelli (2018)

Describe stroke caregivers’

quality of life, anxiety,

HADS-ADischarge

from rehabilitation

Linear mixed-effects model to examine the relationship between

anxiety and time since

Caregivers: time, age, gender, employment

statue, education level, living situation

Caregiver anxiety significantly reduced over time (p < .001, not enough information reported to

calculate ES), up to 9-months post-discharge and then tended to increase 1-year post-discharge.

231

depression and burden at 1-year post-discharge

from a rehabilitation

hospital.

Determine baseline

predictors of stroke caregivers’

quality of life, anxiety,

depression and burden among caregivers’ and

survivors’ characteristics.

hospital: 8.13-months

post-discharge: 7.1

6-months post-

discharge: 6.59-months

post-discharge: 6.3

12-months post-

discharge: 6.6

discharge.

Linear mixed-effect model to identify

baseline predictors of caregiver anxiety.

Survivors: age, gender, comorbidities, physical

function

Only significant predictor of higher caregiver anxiety was survivor younger age (β = -.053, SE

= .02, p = .021). Caregiver female gender (p = .066) and lower physical functioning (p = .056)

approached significance. Caregiver age, survivor gender, employment

situation, education level, whether the caregiver was living with the stroke survivor and if the stroke

survivor had comorbidities did not predict caregiver anxiety.

Smith (2004)

Measure at 1-year post-stroke

informal caregivers’ stress

HADS-ANormal range:

44 (49%)

Univariate associations between survivor and

caregiver variables with caregiver anxiety.

Caregivers: hours/week caring, quality of life

Survivors: age, living

Poorer caregiver health was associated with increased caregiver anxiety (β = -0.10, SE = .02, p < .001). Total hours spent caring was associated with

higher anxiety (R2 = > 10%, β = .03, SE = .01, p

232

and coping using caregiver well-

being.

Borderline (scored 8–

10):16 (18%)

Abnormal ≥ 11:

29 (32%)

arrangements, physical functioning, anxiety, depression, quality of

life

< .01).

Higher caregiver anxiety was associated with survivors reporting higher anxiety and depression

(β =.29, SE = 0.094, R2 > 10%, p < .01; β = .39, SE = 0.13, R2 > 10%, p < .01 respectively).

Stroke survivors feeling more fatigued was also associated with higher caregiver anxiety (β = -0.08,

SE = .023, p < .05).Physical disability and decreased survivor social

activity were not significantly related to increased caregiver anxiety (p > .05), although physical

disability approached significance.

Sreedhan (2013)

Investigate employment

status and level of change of

social functioning of

stroke survivors and their

caregiver and correlate it with

severity of stroke, functional

disability, and anxiety and depression symptoms.

HADS-A: 8.07

Cut-off ≥ 11: 36 (24%)

Chi square test and Fisher exact test used to

assess correlation between employment

loss and social function decline of patient and

caregiver, with anxiety.

Univariate analysis to test the association of burden with caregiver

anxiety.

Caregivers: employment status, social functioning

variables

Caregiver employment loss post-stroke had an association with high anxiety scores (p = .047, not

enough information reported to calculate ES).Increase in frequency of visits to religious places had a significant association with high anxiety (r

= .02, p < .05).Decline in social function in relation to attending

marriages, attending other social gatherings, participating in cultural activities, visits to relative’s

place and trips for shopping were not correlated with caregiver anxiety.

Financial burden in caregivers was not found to be significantly associated with high anxiety.

Wan-Fei (2017)

Examine the effect of

depression and anxiety on

quality of life in stroke survivor-

HADS-A: 5.03 (3.85)

Multi-level modelling to assess the bi-directional

effect of survivor-caregiver factors.

Caregivers: depression, physical functioning quality of life, mental functioning quality of

life

Greater anxiety in caregivers was related to a decrease in their perceived mental functioning

quality of life (β = -0.58, p = .031).

Neither stroke survivors’ quality of life in relation to their physical function or caregivers’ quality of

233

caregiver dyads. Survivors: anxiety, depression, physical

functioning quality of life, mental functioning

quality of life

life in relation to their physical function impacted on caregivers’ anxiety (p = .87, p = .098

respectively).Stroke survivors’ quality of life in relation to their

mental functioning did not impact on caregiver anxiety (p = .722).

Williams (1993)

Pilot test questionnaires with a group of stroke survivors and caregivers.

Describe caregivers in terms of their physical and

emotional wellbeing, and their feelings

associated with possible

caregiving stress.

SQ: 14.2≥ Cut-off:

55%

Correlational analysis between caregiver

variables and anxiety.

Caregivers: burden, stress, hostility,

depression, somatic problems, visits to the doctor per year, fatigue

Higher caregiver anxiety was associated with higher levels of burden (r = 0.52, p = 0.004), more

symptoms of depression (r = 0.82, p < .001), higher levels of stress (r = 0.43, p = 0.021), higher levels

of hostility (r = 0.58, p = 0.001), more somatic problems (r = 0.65, p < .001) and more visits to the

doctor per year (r = 0.40, p = 0.042). At approximately 6-years post-stroke, higher levels of

fatigue were associated with higher levels of anxiety (r = 0.61, p < .001).

Wilz (2008)

Investigate the prevalence of and

changes in spouses’ anxiety symptoms over

time.

Explore factors

BAI3-months

post-stroke: 8.8 (7.5)

Cut-off ≥ 11: 33 (29% -

75% female)15-months

T test comparing anxiety at both time points.

Linear regression (simultaneous entry

method) used to investigate possible

factors associated with

Caregivers: time, gender, age, anxiety

Survivors: depression, dependency in everyday life

(Barthel Index)

Gender was significantly associated with anxiety at T1 and T2 (β = -0.41, p < 0.001 and β = -0.26, p <

0.05 respectively). Women’s’ mean anxiety was higher at T1 and T2 (9.7 vs 6.4, d = 0.44; 9.3 vs 5.7,

d = 0.44).Anxiety at T1 was associated with anxiety at T2 (β

= 0.57, p < 0.001).

234

associated with spousal

caregivers’ anxiety

symptoms.

post-stroke: 8.3 (8.5)

Cut-off score ≥ 18: 16

(14% - 83% female)

anxiety. Patients’ physical disability (in terms of physical functioning) was associated with anxiety at 15-

months post-stroke (β = -0.38, p < 0.05), but not at 3-months post-stroke (p > 0.05).

No associations found between anxiety and the Barthel Index, patients’ depression or age of

caregiver (p > 0.05).Note. ES = effect size.

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Part 3: Clinical Experience

Year 1 - Year-long adult mental health placement in a Community Recovery and

Support Team

I worked with working-age adults, presenting with severe and enduring mental health

difficulties, in a community setting. Individuals had diagnosed difficulties, which included

emotionally unstable personality disorder, psychosis, bipolar affective disorder, depression

and anxiety. My responsibilities included assessment, formulation and intervention using

predominantly a cognitive behavioural therapeutic (CBT) framework, working 1:1 with

clients. I also co-facilitated a Systems Training for Emotional Predictability and Problem-

Solving group for clients with a diagnosis of emotionally unstable personality disorder, and I

co-facilitated a psychoeducational group for patients on a psychiatric inpatient ward. I

completed an audit of the service in relation to compliance with the National Institute for

Health and Care Excellence standards for the psychological treatment of individuals with

borderline personality disorder. I co-delivered a piece of training to service users, carers and

other professionals about managing anxiety and depression, and I co-facilitated a training

session to nurses on professional boundaries and values.

Year 2 - 6-month child placement in a Child and Adolescent Mental Health Service

This placement involved working with children and young people (up to the age of 17) and

their families in a community setting, where the child/young person was experiencing

moderate to severe mental health difficulties. I worked with children and young people who

had difficulties with anxiety, depression, eating (e.g. bulimia), autism spectrum conditions,

obsessive compulsive disorder, attention deficit hyperactivity disorder (ADHD), self-harm,

behaviour that challenges, attachment and relationship difficulties, emotional regulation and

traumatic experiences. Predominantly I used CBT to work with children, young people and

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their significant others; behavioural approaches and systemic and attachment theories further

informed the therapeutic work. I completed behavioural observations of children and young

people in schools. I completed neuropsychological assessments with children and young

people to help understand why they were struggling academically and/or with peer relations

in school, and to inform on-going ADHD assessments. I provided a teaching session to the

multidisciplinary team I worked in, entitled: ‘Gender Identity’, which was informed by the

national Gender Identity Development Service. Additionally, I provided supervision to an

assistant psychologist in the team.

6-month older adult placement in a Memory Assessment Service (MAS)

In this placement, I worked with older adults who were suspected of developing a dementia.

Specifically, I was involved in the early assessment, diagnosis and treatment of people

suspected of developing a dementia. I completed neuropsychological assessments of people

where a diagnosis of dementia was queried; these assessments involved completing cognitive

assessments and clinical interviews with the person and a significant other. I co-facilitated a

psychoeducational group for people recently diagnosed with dementia and their support

network. I also co-facilitated a ‘Living Well with Dementia’ group to people recently

diagnosed with dementia, to help them adjust and cope with their diagnosis and associated

difficulties (e.g. anxiety and depression). I planned and co-presented a de-escalation training

session for support workers. I co-facilitated a reflective practice meeting to dementia support

workers (from a range of services) and dementia advisors.

Year 3 - 6-month learning disability placement in a Community Team for People with

Learning Disabilities (CTPLD)

This placement involved working with working-age adults with (or suspected of having) a

Learning Disability, presenting with mild to severe mental health difficulties in a community

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setting. My responsibilities included assessment, formulation and intervention with clients

using individual CBT and behavioural approaches. Work was completed at the community

clinic, in care homes, in supported living houses and in educational settings. I also provided

indirect/consultation work to carers and staff teams in relation to anxiety and behaviour that

challenges, using systemic and behavioural models. I completed functional assessments of

behaviour that challenges using the Positive Behaviour Support (PBS) model. In addition, I

conducted neuropsychological assessments to determine eligibility for the service and to

assess for possible dementia. I co-delivered training to assistant and honorary assistant

psychologists on, ‘Assessing capacity in people with learning disabilities for consent to

participate in dementia assessments’.

6-month specialist placement in a Community Health Psychology Team and a Pain

Management Service

In my specialist placement, I worked across a Community Health Psychology Team and a

Pain Management Service with adults with a range of mild to severe mental health difficulties

and physical health conditions. The main model applied on this placement was Acceptance

and Commitment Therapy (ACT). I worked with adults with a range of difficulties including

low mood, anxiety, post-traumatic stress disorder, eating difficulties, social isolation, fatigue,

fibromyalgia, postural tachycardia syndrome, autism spectrum conditions, hypermobility and

acquired brain injury. Clients having a history of trauma was common. I used ACT to work

with clients on an individual basis throughout assessment, formulation and intervention. I co-

facilitated an Introducing Mindfulness to Pain and Acceptance and Commitment Therapy

(IMPACT) group to people with persistent pain and anxiety/low mood. In terms of teaching, I

co-facilitated a lecture to second year trainee clinical psychologists with my supervisor on

ACT.

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Part 4: Assessments

PSYCHD CLINICAL PROGAMME

TABLE OF ASSESSMENTS COMPLETED DURING TRAINING

Year I Assessments

ASSESSMENT TITLE

WAIS WAIS Interpretation (online assessment)

Practice Report of Clinical Activity

Assessment and formulation of an Asian female in her forties diagnosed with Schizoaffective disorder unspecified presenting with hearing voices

Audio Recording of Clinical Activity with Critical Appraisal

Audio recording of clinical activity and critical appraisal of a CBT session with a White British female in her teenage years diagnosed with Emotionally Unstable Personality Disorder presenting with difficulties managing her emotions

Report of Clinical Activity N=1

Report of clinical activity of CBT with a White British female in late adolescence diagnosed with Emotionally Unstable Personality Disorder presenting with difficulties managing her emotions

Major Research Project Literature Survey

Factors Influencing Anxiety in Caregivers of Community-dwelling Stroke Survivors: A Systematic Review

Major Research Project Proposal

Self-help Relaxation for Anxiety in Caregivers of Community-dwelling Stroke Survivors

Service-Related Project An audit of compliance with the NICE standards for the psychological treatment of individuals with Borderline Personality Disorder in a Recovery and Support Team

Year II Assessments

ASSESSMENT TITLE

Report of Clinical Activity/Report of Clinical Activity –

Report of Clinical Activity of CBT with a White British female of secondary school age presenting with

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Formal Assessment difficulties managing anxiety

PPLD Process Account A reflective process account of my experience of being part of a Personal and Professional Development group

Year III Assessments

ASSESSMENT TITLE

Presentation of Clinical Activity

Assessment, formulation, intervention and evaluation of a White British woman in her 80s presenting with difficulties with loss and isolation following dementia diagnosis

Major Research Project Literature Review

Factors Influencing Anxiety in Caregivers of Community-dwelling Stroke Survivors: A Systematic Review

Major Research Project Empirical Paper

Effectiveness of Relaxation Training for Anxiety and Depression in Family Caregivers of Long-term Stroke Survivors

Report of Clinical Activity/Report of Clinical Activity – Formal Assessment

A learning disability assessment of Tom, a man in his early thirties

Reflective Portfolio Reflective Portfolio

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