The role of support groups and ConnectGroups in ameliorating psychological distress

by

Dr Natalie Strobel

(PhD, GradDip AppSci (Clinical Exercise Science), BSc)

Miss Claire Adams

(MClinPsyc (enrolled), BArts (Psychology and Criminology)Hons)

Professor Cobie Rudd

(PhD, MPH, BHSc(N), RN)

of the

Office of the Pro-Vice-Chancellor (Health Advancement)

Edith Cowan University

October 2014

1

Contents Background ........................................................................................................................... 3

Defining support groups ........................................................................................................ 4

Introduction ....................................................................................................................... 4

Background and theoretical models of support groups ...................................................... 4

Theoretical models ......................................................................................................... 5

Types of support groups .................................................................................................... 6

Professionally-led support groups .................................................................................. 7

Volunteer support groups ............................................................................................... 8

Summary ......................................................................................................................... 11

Literature review ................................................................................................................. 12

Introduction ..................................................................................................................... 12

Method ............................................................................................................................ 13

Results ............................................................................................................................ 15

Discussion ....................................................................................................................... 17

Focus on professionally-led groups .............................................................................. 17

Ambiguity of definitions ................................................................................................ 18

Integrated chronic disease management including support groups .............................. 19

Online support groups .................................................................................................. 19

Emphasis on qualitative data and case studies ............................................................ 20

Conclusion ...................................................................................................................... 20

Website search ................................................................................................................... 22

Introduction ..................................................................................................................... 22

Method ............................................................................................................................ 22

Search ......................................................................................................................... 22

Results ............................................................................................................................ 22

Recommendations .............................................................................................................. 25

Section 1 ......................................................................................................................... 25

2

Section 2 ......................................................................................................................... 25

Section 3 ......................................................................................................................... 25

Appendix 1 .......................................................................................................................... 26

References ......................................................................................................................... 27

3

Background The purpose of this project is to provide current evidence on the value and effectiveness of

support groups, and how ConnectGroups, as a leading peak body for self-help and peer

support groups, compares to the activities and work of other domestic and international

organisations. It is expected that by providing this information to ConnectGroups the

organisation with be able to focus their activities on promoting and advocating for its members

within the community and among funding bodies, further publicising/marketing its services,

making informed decisions, sharing relevant knowledge, providing appropriate support and

services, and educating its membership and external stakeholders. Therefore, this project was

to conduct a review of literature relating to the:

1. benefits of self-help and peer support groups as a way to ameliorate and control stress‐

related health conditions

2. work and scope of activities of ConnectGroups as a peak body supporting and facilitating

self help and support groups.

To complete this work this report is divided into three sections. Section 1 provides a theoretical

understanding of support groups which includes professionally-led and volunteer groups, the

latter including peer support and self-help groups. Section 2 is a systematic literature review

to critically analyse national and international evidence for the efficacy of peer support and

self-help groups to improve mental health for people with chronic obstructive pulmonary

disease and cardiovascular disease. For the purpose of this review professionally-led support

groups were not assessed as they are not aligned with ConnectGroups current model of

support groups. For section 3, a systematic internet search was completed using Google

search engine to identify local, national and international organisations which were similar to

ConnectGroups, with comparisons made between organisations. Finally, recommendations

are provided based on the findings of this report.

4

Defining support groups

Introduction There has been considerable attention given to support groups within the literature, with

evidence to suggest that support groups increase availability and access to health services,

and are both an effective and economical method of treatment (Bottomley, 1997; Humphreys

& Ribisl, 1999). As the number and availability of support groups is growing, both in Australia

and internationally, it is becoming increasingly important to clarify the role of such groups,

particularly in health care. Since 2004, there has only been ad hoc academic interest in

support groups, despite it being such an area of growth (Munn‐Giddings & McVicar, 2007)

Although there are numerous types of support groups, distinguishing between the different

types of groups has become a challenge and remains largely unclear. This is predominantly

due to the independent and non-standardised nature of support groups (Jackson, Gregory, &

McKinstry, 2009). As Pistrang, Barker, and Humphreys (2008) explain, the term ‘support

groups’ often incorporates a range of group types and functions which leads to

misunderstanding. This is illustrated through authors using terms such as mutual aid groups

or peer support services to encompass all group types (Pfeiffer, Heisler, Piette, Rogers, &

Valenstein, 2011; Solomon, 2004), whilst others terms such as mutual support groups, self-

help groups, peer support programs, and consumer-run services are used interchangeably

(Hildingh & Fridlund, 2001b; Munn‐Giddings & McVicar, 2007). It is uncommon for studies to

make clear distinctions between self-help groups, peer support groups and other ‘mutual aid’

programs. Thus, it is difficult to determine from the terms alone which type of group is being

referred to in the literature. Indeed this lack of clarity is well supported (Jackson et al., 2009;

Munn‐Giddings & McVicar, 2007). As such the first section of this report will endeavour to

make clear distinctions between professionally-led support groups, peer support groups and

self-help groups, in order to clarify the nature of such programs and define their role within the

health care context.

Background and theoretical models of support groups Since the 1970s support groups have been emerging as a valuable component of health care,

and have been found to help improve health outcomes and reduce mortality rates (Munn‐

Giddings & McVicar, 2007; Pfeiffer et al., 2011). The social movements of the 1970s which

bolstered equal rights for minority groups, including people with disabilities and mental health

problems (notably the women’s health movement), also led to a distrust of governments and

well-established institutions, and hence community run health clinics were developed to

enable autonomy over one’s own health care. These clinics and community-run groups are

what we now recognise as support groups (Borkman & Munn-Giddings, 2008).

5

Support groups are founded on the premise that supportive interactions with people who have

experienced similar problems can give individuals a sense of empowerment, increase self-

efficacy, and enhance coping skills (Pistrang et al., 2008). According to Helgeson and Gottlieb

(2000) support groups are rarely theory driven, but are guided by the notion that people facing

similar problems have a shared understanding and can offer mutual, empathic support that

naturally occurring social supports may not. A person’s own support network may lack

experience, be consumed by their own stressors or feel uncomfortable responding to the issue

(Helgeson & Gottlieb, 2000). Peers are therefore able to validate and normalise the problem,

thereby reducing isolation and fostering a sense of belonging. Pistrang et al. (2008) describes

this principle as ‘socially supportive interactions,’ in which the empathy derived from ones peer

group can compensate for the absences in peoples natural support networks. This is

supported by Bryan (2013) who suggests that peers who experience similar stressors have

an exclusive capacity to respond empathically, due to a shared understanding of the issue.

Theoretical models Two theoretical models have been posited in the literature that solidify the benefit of support

groups (M. J. Stewart, 1990). Support groups are said to have both a direct and indirect effect

on physical and psychological health outcomes (Dennis, 2003; M. J. Stewart, 1990). The

indirect ‘buffering’ model suggests that support groups act as protection against stressors and

builds coping skills (Dennis, 2003). This model is founded in Lazarus and Folkmans 1984

coping theory, in which in order to cope effectively with challenges, cognitive and behavioural

change is required (Lazarus & Folkman, 1984). However as stated previously, support groups

are rarely theory driven, and as such there are a number of concepts that endorse and build

upon this indirect model, strengthening the role of support groups (Helgeson & Gottlieb, 2000)

. One of these concepts is vicarious learning. Originating from Banduras social cognitive

theory, vicarious learning is the concept that people learn through observing others and the

outcome of others behaviour (Bandura, 1998; Dennis, 2003; M. J. Stewart, 1990). These

interpersonal relationships are considered important in moderating the way in which an

individual interprets and responds to an event (Dennis, 2003). Another concept pertaining to

Bandura’s theory, earlier established by Reissman’s 1965 helper therapy-principle, is self-

efficacy (Bandura, 1998; Gartner & Riessman, 1982; Roberts et al., 1999). Self-efficacy is

where individuals assess their own ability to perform certain tasks or behaviours, and this

assessment determines whether they engage and persevere with behavioural change. The

more attention given to successes or gains made the greater self-efficacy (Bandura, 1998;

Dennis, 2003). By helping others group members can develop an insight into one’s own

problems and develop self-confidence, which facilitates behavioural change (Gartner &

Riessman, 1982; Roberts et al., 1999). Even if a group member does not receive help, the

6

giving of advice and assistance is thought to provide equal opportunity for personal growth.

As such the indirect model considers support groups to be an avenue through which vicarious

learning can occur, and in which individuals can receive feedback from peers which enhances

self-efficacy. Dennis (2003) distinguishes these processes of vicarious learning and self-

efficacy as a separate model, the mediating effect model, however other authors contend that

this process is part of the indirect effect of support groups (Cohen & Wills, 1985; M. J. Stewart,

1990).

The direct effect model proposes that social support has explicit benefits on health and well-

being through encouraging social integration, fostering self-esteem, positive emotion, and

reducing isolation, all of which are essential social needs, and occur through the development

of significant positive relationships (Dennis, 2003; Pfeiffer et al., 2011; M. J. Stewart, 1990).

Social integration has been associated with increased life span and survival from various

serious health conditions such as cancer and depression (Dennis, 2003). This model can be

linked to the social-inoculation theory, which suggests that social support influences the

susceptibility to some infections and to some aspects of the humoral and cell mediated

immune response (Pfeiffer et al., 2011).

Types of support groups Two types of support groups have been identified within the literature;professionally-led and

volunteer support groups. The latter group has been further divided into peer support and self-

help groups. Figure 3.1 provides an illustration and summary of the types of support groups.

7

Figure 3.1: Illustration and summary of types of support groups.

Professionally-led support groups Professionally-led support groups are therapeutic in nature, and focus on developing

treatment goals within a group setting (M. B. Cohen & Mullender, 2006). These groups provide

the opportunity for both mutual and trained support, with psychoeducation and rehabilitation

common aims, particularly within the health context (Bright, Baker, & Neimeyer, 1999). A major

component of these groups is sharing experiences, and providing feedback and assistance to

bring about greater insight, awareness and personal change through the facilitation of a

trained worker (Mason, Clare, & Pistrang, 2005). For example professionally-led support

groups for dementia encourage sharing emotions, fears and concerns, which can lead to a

better understanding of and adjustment to difficulties and changes in role and identity (Mason

et al., 2005). A review on the literature for cancer support groups identified two main categories

of professionally-led groups; supportive groups and psychoeducational groups (Bottomley,

1997). Supportive groups were focused on mutual support, encouraging group members to

share experiences, feelings, and concerns (Bottomley, 1997). Psychoeducational groups were

Trained novice facilitator

Experiential knowledge

Involved in an organisation

or agency

Educator/advocator/

counsellor

Community member/lay

person

Experiential knowledge

Independent/autonomous

Mutual support only

Qualified facilitator

No experiential knowledge

Therapist/educator

Support groups

Professionally-led groups

Volunteer groups

Self-help groups

Peer support groups

8

more structured and remedial in nature, and involved education and specific cognitive and

behavioural techniques (Bottomley, 1997).

Another specific of professionally-led support groups includes being facilitated by a qualified

individual who has extensive training in their field (Stevinson, Lydon, & Amir, 2010). Usually

these individuals are involved in support groups as part of their work, or as a voluntary

extension of their job. In a health care context professionally-led groups may be run by nurses,

social workers, or mental health specialists (Stevinson et al., 2010). The degree to which a

professional is involved in a group can be highly variable, from adopting a highly structured

leadership role in which education and knowledge is dispersed, to a more nondirective

approach, in which group members are encouraged to share experiences and provide mutual

support to one another (Twehues, 2009). As Lennon-Dearing (2008) states, combing the

capabilities of an expert facilitator with the experiential knowledge of group members can be

highly valuable. The mutual support offered in a professionally-led group however, is highly

reliant on group member’s engagement within the group.

Volunteer support groups

Peer support groups Dennis (2003) defines peer support as “the provision of emotional, appraisal and informational

assistance by a created social network member”. This social network member must be a

person who has personal experience with the health-related concern, and hence be

considered a peer who can offer reciprocal support (Dennis, 2003; Oades, Deane, &

Anderson, 2012). In terms of health and well-being peer support groups have a variety of aims,

including illness-prevention, disease management, and health promotion. Three distinct aims

of peer support groups are (M. B. Cohen & Mullender, 2006; Oades et al., 2012):

to offer a remedial function through focussing on recovery

an interactional objective by centring on personal experiences and relationships

a social function through encouraging personal growth and empowerment.

These aims are achieved through emotional, appraisal and informational assistance.

Whereby, emotional assistance endeavours to build self-esteem through reassurance and

advice giving. Appraisal support involves problem-solving, encouragement, and building

motivation and resilience. Lastly, informational support helps guide individuals on the causes

of their concerns, suitability of their actions, and availability and effectiveness of resources.

Through these mechanisms peer support groups aim to provide a sense of community,

building significant interpersonal relationships, and in turn reducing the emphasis or reliance

on counselling services (Dennis, 2003).

9

There are three forms of peer supports groups that have been suggested in the literature;

naturally occurring mutual support groups, consumer-run groups, and the employment of

consumers in clinical and rehabilitation settings. (L. Davidson et al., 1999; L. Davidson,

Chinman, Sells, & Rowe, 2006; Oades et al., 2012). L. Davidson et al. (1999) defines mutual

support groups as people who voluntarily meet to solve or manage similar problems or

concerns, through sharing life experiences, providing feedback, and gaining new knowledge,

coping strategies and perspectives. Through this process individuals are offered acceptance,

understanding, and assistance which helps develop a sense of community and self-efficacy.

Both consumer-run groups and consumers in clinical and rehabilitation settings have similar

processes whereby individuals meet to address shared problems, and the facilitators of these

groups are employees of an organisation. Therefore, the relationship between group members

and the facilitator may be dictated to some degree by organisational boundaries (L. Davidson

et al., 1999; L. Davidson et al., 2006). Consumer-run groups can also offer additional benefits

of advocacy, public awareness, education, and knowledge building through the use of

established social and organisational networks (Brown, Tang, & Hollman, 2014). Within the

clinical and rehabilitation setting, peers can provide a more remedial role in helping recovery

from health problems through developing treatment plans and encouraging specific tasks and

goal setting as part of the group process (M. B. Cohen & Mullender, 2006).

Other key features of peer support groups include the non-professional peer must be based

in a professional program, rehabilitation service, community organisation, or volunteer agency

that has access to resources and organisations that can help recovery. An individual who

offers support due to convenience such as a neighbour or co-worker does not constitute as

peer support (Dennis, 2003). The peer may be paid or self-selected. In addition, there can be

a number of providers of peer support groups, from community-based services, hospitals, and

volunteer organisations (Dennis, 2003). More generally peer support groups may be found in

schools, clinics, prisons, hospitals, community settings, home-based settings, and indirectly

via online or telephone means (Dennis, 2003). Peers can adopt a number of roles, from

educator and leader, to counsellor, mediator and advocator. Whilst peers are required to

undergo some training to familiarise them to the process of support groups, and the skills

required to effectively engage in these groups, training is ideally kept to a minimum as to not

compromise the ‘peer’ relationship (Dennis, 2003). As Pfeiffer et al. (2011) explain, the peers

may be experienced or novice in providing support services, and often provide voluntary

assistance, hence making support groups more accessible through reduced costs.

Self-help groups Self-help groups are commonly formed by individuals who get together to address a specific

need or issue, to manage a particular problem, or to bring about change, through discussing

10

different coping strategies. This is distinct from self-help resources such as books and videos,

and like peer support groups, directly excludes support groups run by health professionals

(Gray et al., 1998). The term ‘self-help’ signifies that a person has identified that they need

assistance, and take action to solve their problem (Pretto & Pavesi, 2012). The self-help

principle distinguishes between mutual help and mutual self-help, in that self-help groups are

not simply one group member helping another, but every group member should gain some

insight and awareness into their issue through the support of others (Vanderavort &

Vanharberden, 1985).

Self-help groups do not need professional involvement or a trained peer, unlike professionally-

led groups and peer support groups. Self-help groups are run by a volunteer community

member with a particular problem or concern, who wants to help others who have the same

or a similar issue. According to Humphreys and Ribisl (1999) self-help groups are “self-

governing groups whose members share a common health concern and give each other

emotional support and material aid, charge either no fee or a small fee, and place a high value

on experiential knowledge in the belief that it provides special understanding of a situation”. It

is assumed that all members of a self-help group have experiential knowledge of the issue,

and those who have already solved the problem or have made breakthroughs can use this

knowledge to help others (Pretto & Pavesi, 2012). Self-help groups are applicable to a variety

of health areas including chronic illness, mental health, disabilities, addictions and caregiving

(Seebohm et al., 2013).

As self-help groups are a volunteer and autonomous service, group members willingly commit

to social and personal change through engaging in group processes, such as sharing

knowledge, experiences and offering assistance (Borkman & Munn-Giddings, 2008; Brown et

al., 2014; Gartner & Riessman, 1982). Group members are reliant on their own skills, efforts,

experiences and knowledge to help each other and bring about change (Levy, 1976). Unlike

peer support groups they do not require involvement in any organisation or agency and hence

remain independent self-governing programs. As Munn‐Giddings and McVicar (2007) state,

self-help groups are founded on sharing experiences, peer education, practical information

and coping skills, all of which is directed by the group members themselves, enabling the

individuals to have ownership over the way their group operates.

Humphreys and Ribisl (1999) contend that self-help groups offer accessible and effective

interventions for specific problems, such as alcohol abuse, bereavement and adjustment

difficulties, as well as augment professionally run programs and organisations. In addition self-

help groups can take a significant burden off the healthcare system and provide greater

access to health care services (Humphreys & Ribisl, 1999). Seebohm et al. (2013) reports that

11

the available evidence on self-help groups indicates the benefits of such groups can be

personal, interpersonal and shared, including improving confidence and self-esteem, support,

coping skills, and widening perspectives. Gartner and Riessman (1976) explain that self-help

groups are not only applicable for people with acute and chronic illnesses, but also for those

who have adjustment difficulties, behavioural problems and maladaptive coping skills, for

example over-eating and over-drinking behaviours.

Summary This section has discussed the origins and role of support groups, with an emphasis on health

care settings. Whilst the literature is often unclear as to the distinctions between support

groups, it is important to make this clarification in order to appreciate the role of the different

types of support groups and the benefit each can offer. The primary difference between

support groups lies with the knowledge and level of training held by the group facilitator, and

the setting in which the groups are based. Professionally-led support groups are distinct from

volunteer groups as they involve a qualified facilitator who is an expert in their field, and who

generally does not have personal experience with the problem or concern being addressed in

the group (Stevinson et al., 2010). A requirement of volunteer groups is the experiential

knowledge of the issue, in which group members have a unique understanding of the problem

and hence can offer empathy, advice and support which cannot be provided from other

sources (Dennis, 2003; Oades et al., 2012; Pretto & Pavesi, 2012). Peer support groups

however involve a novice facilitator who has received some training, and is involved in an

organisation or agency that gives them the skills and resources to educate, counsel and

advocate for their peer group (Dennis, 2003; Pfeiffer et al., 2011). This differs from self-help

groups as these latter groups are run by untrained community members but commonly by

those with lived experience, and are independent, self-governing programs, reliant on group

members existing skills, knowledge, experience to operate (Levy, 1976; Munn‐Giddings &

McVicar, 2007). Overall, these groups are all based upon common principles of change,

empowerment, and improved self-esteem; however each can offer different benefits to

consumers (Pistrang et al., 2008).

12

Literature review

THE EFFICACY OF PEER SUPPORT AND SELF-HELP

GROUPS TO IMPROVE THE MENTAL HEALTH OF PEOPLE

WITH CHRONIC OBSTRUCTIVE PULMONARY DISEASE AND

CARDIOVASCULAR DISEASE

Introduction Chronic obstructive pulmonary disease (COPD) and cardiovascular disease (CVD) are two of

the leading burdens of disease worldwide (World Health Organization, 2008). COPD is an

irreversible lung disease characterised by airflow obstruction, and results in breathlessness,

a chronic cough, and sputum production (Salvi & Barnes, 2009). In 2011 COPD was

responsible for 102 per 100,000 deaths of people over the age of 55 in Australia, and is

estimated to become the third leading cause of death worldwide by 2030 (Australian Institute

of Health and Welfare, 2014; World Health Organization, 2008). CVD is a broad term that

incorporates a number of heart diseases, including but not limited to coronary heart disease,

peripheral arterial disease, rheumatic heart disease, congenital heart disease and

cerebrovascular disease (World Health Organization, 2013). CVD is the most common group

of diseases causing death in Australia, accounting for 14% of the total burden of disease

(Australian Institute of Health and Welfare, 2014). Internationally, CVD is the single leading

cause of death, and 23 million people are estimated to die annually from CVD by 2030

(Mathers & Loncar, 2006).

According to the latest publication from the Australian Institute of Health and Welfare

(Australian Institute of Health and Welfare, 2014), the four major chronic disease groups of

CVD, COPD, cancers and diabetes account for three-quarters of all chronic disease deaths.

COPD and coronary heart disease in particular are greatly influenced by modifiable risk factors

such as tobacco smoking, poor diet, and physical inactivity (Australian Institute of Health and

Welfare, 2006). COPD and CVD are associated with long term health problems and declining

functioning which not only is difficult for the individual but also places significant cost on the

health care system (Calverley, 2008; Endo, Utz, & Johnston, 2012; Parry et al., 2009;

Wiliamson, 1997). Indeed, both COPD and CVD patients suffer from increased mental ill-

health particularly anxiety and depression, than the general population (Kessler et al., 2003;

Polsky et al., 2005; Yohannes, Baldwin, & Connolly, 2000; Yohannes, Willgoss, Baldwin, &

Connolly, 2010). Patients who suffer from poor mental health are more likely to have reduced

quality of life, die younger, and have poor adherence to medication (Coleman, Katon, Lin, &

Von Korff, 2013; Moussavi et al., 2007; Turner & Kelly, 2000).

13

Support groups attempt to overcome these problems by establishing social networks,

increasing self-efficacy and enhancing coping skills (Pistrang et al., 2008). As Moullec et al.

(2008) state, patient-run support groups encourage interaction between patients which

expand their social support networks and promote autonomy over their own health care. This

not only reduces demands on the healthcare system but also has substantial benefits for

patient’s mental health. As Jackson et al. (2009) state, there is research to indicate that

support is valuable in improving psychological and emotional wellbeing, in addition to fostering

lifestyle changes that are crucial to disease management and recovery.

Volunteer run groups, self-help and peer support groups, are two distinct types of support

groups. Self-help groups are run by untrained individuals and aim to provide mutual support,

and are hence reliant on group members own skills, efforts, experiences and knowledge to

help each other and bring about change (Levy, 1976). Peer support groups however are run

by community members who have received some training in how to operate a support group,

and are based in an organisation or agency that has access to resources which can help

recovery (Dennis, 2003; Pfeiffer et al., 2011). As such peer support leaders can offer

education, counselling, mediation and advocacy in addition to the fundamental mutual support

provided in self-help groups (Dennis, 2003).

A review of the research on volunteer support groups by Kyrouz, Humphreys, and Loomis

(2002) indicates that bereavement, weight loss, mental health, cancer and diabetes groups

can improve psychological adjustment, increase self-esteem, reduce psychological distress,

enhance coping skills, and build social networks. Therefore this paper aims to investigate the

efficacy of volunteer support groups, self-help and peer support, in improving the mental health

of people with COPD and CVD.

Method A comprehensive search of the Medline database, PubMed, was undertaken in August 2014.

Based upon previous systematic reviews on COPD and CVD, search terms were developed

for disease specific terms, and self-help and peer support groups. All search terms were

agreed upon by ConnectGroups and the research team (Table 1).

14

Table 1. Systematic search terms

Constant keywords Combined with

Chronic obstructive pulmonary disease Support groups

COPD Consumer run organisations

Asthma Peer support groups

Pulmonary disease Peer interventions

Lung disease Mutual help groups

Emphysema Mutual support groups

Chronic bronchitis Mutual aid groups

Cardiovascular disease Self-help groups

Cardiovascular disease Self-help programs

Coronary heart disease Self-help interventions

Coronary artery disease Community support services

CHD

CAD

Myocardial infarct*

Myocardial ischemia

Peripheral arterial disease

Peripheral vascular disease

Heart disease

Overall 1567 references, which included duplicates, were identified. Abstracts were read, and

full texts were obtained if they fulfilled all of the following criteria:

group members have either COPD or CVD

an intervention of a self-help or peer support group as defined by:

o self-help group: a self-governing support group run by an untrained facilitator who

has experiential knowledge of the problem, and can provide mutual support,

empathy, understanding and acceptance

o peer support group: a support group run by a trained novice facilitator who has

experiential knowledge of the problem and is involved in an organisation or agency,

providing education, counselling, advocacy, mediation and mutual support

primary outcomes included measures of mental health specifically screening for anxiety

and depression

secondary outcomes included quality of life, and social support

group members meet face-to-face

published in English

15

Overall 85 potential studies (27 on COPD and 58 on CVD) were identified. Two of these papers

were systematic reviews on cardiac support groups, and reference list searches of these

reviews were completed (Jackson et al., 2009; Song, Lindquist, Windenburg, Cairns, &

Thakur, 2011). From these searches only 3 studies met the inclusion criteria for review. Eighty-

two studies were excluded due to not having an intervention (n=33), support groups were

included only as part of a chronic disease management plan (n=9), did not fit the criteria for

support groups (n=10), did not have group session (n=8), online support groups (n=7),

professionally-run groups (n=6), were not exclusively COPD or CVD patients (n=6), or

recruitment was via support groups (n=3).

Results For CVD, only one group of researchers were found to have conducted studies on the efficacy

of volunteer peer support groups. Hildingh, Fridlund and colleagues from 1994 to 2004

conducted a longitudinal research trial examining the mental health and quality of life

outcomes for the Heart-ten peer support group programs, which were peer support groups for

people with cardiac problems arranged by the Swedish National Association for Heart and

Lung Problems. In total five papers were published on the physical and psychosocial

outcomes of peer support groups, however only three met our inclusion criteria (Table 2)

(Hildingh & Fridlund, 2001a; Hildingh & Fridlund, 2003, 2004; Hildingh, Fridlund, & Segesten,

1995; Hildingh, Segesten, Bengtsson, & Fridlund, 1994). These three papers report the results

of a longitudinal study which examined the physical, psychological and social well-being of

cardiac patients who participated in a peer support group program compared to those who did

not attend support groups over a 3 month, 1 year and 3 year follow-up (Hildingh & Fridlund,

2001b; Hildingh & Fridlund, 2003, 2004). Initially there were 197 patients who took part in the

study, 73% were male and 27% female, with a mean age of 63.5 years. Of these, 133 patients

attended the peer support groups; the remaining 64 participants were a convenience sample

that formed a control group for standard treatment. All patients had been diagnosed with

myocardial infarction, treated with percutaneous transluminal coronary angioplasty, or had

recently undergone bypass surgery for a CVD. Varying outcomes were identified over the

three years including CVD patients who attended the peer support group experienced no

greater quality of life or psychological health outcomes than those who did not attend a

support group. Social benefits were found in expanding social networks, developing close

relationships and increasing engagement at different time points.

No evidence for self-help groups for CVD and COPD patients or peer support groups for

COPD patients met our inclusion criteria.

16

Table 2. Volunteer Group Interventions for CVD patients

Author Sample/Group Methodology Measures Intervention Psychosocial Outcomes

Hildingh et al.

(2001)

N = 197

Support group

attendees (n=64)

Controls (n=133)

Age: 38 – 85yrs

Quantitative

Longitudinal

3 month follow-up

Jenkins Activity Survey

Zung self-rating depression

scale

Social Network and Social

Support Scale

Life Satisfaction

Questionnaire

Heart-ten peer support

group program

Increase in emotional

and informational

support. No differences

in quality of life; stress,

life satisfaction or belief

in the future

Hildingh et al.

(2003)

N = 184

Support group

attendees (n=59)

Controls (n=125)

Age: 38 – 83yrs

Quantitative

Longitudinal

12 month follow-up

Zung self-rating depression

scale

Social Network and Social

Support scale

Life Satisfaction

Questionnaire

Heart-ten peer support

group program

Increase in

informational support.

No further differences

between groups

Hildingh et al.

(2004)

N = 160

Support group

attendees (n=35)

Controls (n=125)

Age: 41 – 83

Quantitative

Longitudinal

3 year follow-up

Jenkins Activity Survey

Zung self-rating depression

scale

Social Network and Social

Support Scale

Life Satisfaction

Questionnaire

Heart-ten peer support

group program

Increase in social

networks. No further

differences between

groups.

17

Discussion This paper has investigated the efficacy of peer support and self-help groups in improving the

mental health of people with COPD and CVD. Our comprehensive search of the literature has

determined that evidence on the utility of volunteer support groups for improving mental health

outcomes among these populations is simply lacking. The three papers were successful in

providing longitudinal data on the benefit of support group participation compared to a control

group, however as participants were not randomised into groups the results should be

interpreted with caution, a limitation acknowledged by the researchers (Hildingh & Fridlund,

2004). This is comparable to studies on support groups for numerous other health conditions

such as cancer, epilepsy, scoliosis and diabetes, with the majority of research employing a

nonrandomised design (Becu, 1993; Hinrichsen, 1985; Maisiak, 1981; Simmons, 1992).

Indeed, the lack of studies reporting on the efficacy of support groups was recently discussed

in a literature review by Cafarella, Effing, Usmani, and Frith (2012). They reviewed the efficacy

of interventions for anxiety and depression among COPD patients, and found that whilst group

sessions were common in the treatment of COPD, these are often rehabilitation programs or

self-management programs. Interventions which were solely self-help groups had not been

reported in the literature. It appears that no additional research has been undertaken since

2012 on volunteer support groups for these populations. Of the 27 studies on support groups

for COPD patients that were identified in our search, all support groups had some degree of

professional involvement, were part of a wider treatment plan, were online support groups, or

did not have an intervention.

Due to a lack of evidence on the benefit of volunteer support groups for COPD and CVD

patients, we have postulated a number of reasons why this has occurred.

Focus on professionally-led groups To date the research on support groups appears to focus predominantly on professionally-led

groups. Professionally-led support groups are those facilitated by a qualified individual who

has extensive training in their field (Stevinson et al., 2010). In a health care context

professionally-led groups may be run by nurses, social workers, or mental health specialists

(Bright et al., 1999; Stevinson et al., 2010). Evidence suggests professionally-led groups can

improve patients health-related quality of life, foster adaptive coping strategies, build stress

management skills, increase motivation and engagement, as well as develop social networks

which enhances connectedness and reduces isolation (Alberto & Joyner, 2008; Brooks, Krip,

Mangovski-Alzamora, & Goldstein, 2002; Jensen, 1983; Mularski et al., 2009; Schulz et al.,

2008).

18

Although not directly searched, we found three studies that reported on psychosocial

outcomes from professionally-led groups for COPD and CVD patients (Alberto & Joyner, 2008;

Mularski et al., 2009; Schulz et al., 2008). These studies comprised of two randomised control

trials and a convenience nonrandomised sample, and suggested that professionally-led

support groups are effective in improving quality of life, developing stress management skills,

and building hope and optimism (Alberto & Joyner, 2008; Mularski et al., 2009; Schulz et al.,

2008). An additional three studies on professionally-led support group were also found,

however these papers did not report on psychosocial outcomes (Frey, 2000; Jensen, 1983;

Wilson, Fitzsimons, Bradbury, & Elborn, 2008).

Ambiguity of definitions The different types of support groups are often ill-defined in the literature, with many studies

using terms such as mutual aid groups, mutual support groups and self-help groups to

describe any type of support group, despite the distinction between self-help groups, peer

support groups and professionally-led groups (Jackson et al., 2009; Munn‐Giddings &

McVicar, 2007; Pistrang et al., 2008). Although we used all of these terms in our searches,

upon closer examination of the literature many studies that allege to report on self-help groups

are run by trained personnel who do not share the same condition or concerns as group

members, or are in essence psychotherapy groups requiring the involvement of healthcare

professionals (Kyrouz et al., 2002). This could account for the high number of studies on

professionally-led groups obtained in our searches. In addition, as Kyrouz et al. (2002) asserts,

in practice volunteer support groups often use professionals as advisors and assistors in

establishing and maintaining their support services, and this blurs the boundaries between

groups that are member run and classed as peer support and self-help groups, and those that

have professional involvement and are categorised as professionally-led groups. In fact, the

degree to which professionals can be involved in volunteer support groups, without

jeopardising the mutual support upon which these groups are founded, remains undetermined.

Some volunteer groups remain autonomous and adopt an anti-professional position, whilst

others seek the advice of professionals to help in the operation and management of their

program (Hildingh et al., 1994).

There are also a number of support groups that have professionals and peers as co-

facilitators. Two studies were identified in our searches that included both professionals and

peers in support group facilitation. The first was a hospital-based support group for heart

disease patients (Hughes, 1980). In this study health professionals were involved in setting

the topic for discussion for the support groups each week, and ensuring the groups proceeded

according to the program goals, however the group was led by a volunteer with heart disease

who could relate to the emotional and psychological difficulties associated with the condition

19

(Hughes, 1980). The other more recent study examined the efficacy of a support group for

patients with myocardial infarction, in which health professionals offered information about

heart disease, possible causes and symptoms, as well as relaxation techniques and dietary

information, and a peer co-facilitator provided emotional support, positive feedback,

encouragement and hope (M. Stewart, Davidson, Meade, Hirth, & Weld-Viscount, 2001).

Although these additional studies blur the boundaries between professionally-led support

groups and volunteer support groups, they also provide positive evidence for the efficacy of

these types of groups.

Integrated chronic disease management including support groups A trend among the literature is the inclusion of support groups as part of chronic disease

management plans. It is now common for research studies to design a multi-disciplinary

rehabilitation program with a view to holistic patient care. Whilst support groups are included

in the intervention, often treatment outcomes are reported on the overall efficacy of the

treatment plan, and therefore it is difficult to discern the benefit of support groups alone. This

was apparent when reviewing our search results. For example, two studies unveiled in our

searches evaluated an intervention for COPD patients that incorporated exercise training,

health information sessions, and a monthly peer support group for psychosocial support

supervised by a psychologist (Moullec & Ninot, 2010; Moullec et al., 2008). Measures of

dyspnea, quality of life, healthcare utilisation and lung function were undertaken, and whilst

the program was found to be effective overall in reducing hospitalisations and improving

quality of life, neither paper undertook analysis on the role of support groups alone (Moullec

& Ninot, 2010; Moullec et al., 2008). In both cases conclusions were only made on the

supposition that support groups improve well-being, self-esteem, as well as functional and

emotional dimensions of quality of life. A number of other studies for both COPD and CVD

followed this line of reporting, with the majority of studies devising treatment plans for COPD

and CVD patients in which the support groups were professionally-led, both of which limit the

quantity of articles from which volunteer support group outcomes could be derived (Brooks et

al., 2002; Channer, Barrow, Barrow, Osborne, & Ives, 1996; Christenhusz, Pieterse, Seydel,

& van der Palen, 2007; D. M. Davidson & Maloney, 1985; Heisler et al., 2013; Scherer, Janelli,

& Schmieder, 1992; Wiliamson, 1997).

Online support groups Face-to-face contact is no longer a requirement of support groups with online social networks

becoming increasingly common, providing more accessible forms of health service delivery

(Magnezi, Bergman, & Grosberg, 2014; Medina, Loques, & Mesquita, 2013). In turn there is a

subsection of the support group literature that focuses on the benefit of online support groups.

20

Medina et al. (2013) recently investigated the efficacy of online support groups for CVD

patients, and found four articles which met their criteria. These papers all identified

psychological and emotional benefits from online support group participation, such as

reducing isolation, increasing motivation, instilling hope and increased quality of life (Medina

et al., 2013). For example, a randomised control trial investigated the benefit of online heart

disease support groups in bringing about behavioural change in patients with coronary heart

disease (Lindsay, Smith, Bellaby, & Baker, 2009). This study compared moderated online

groups, that is, online groups that are facilitated by health professionals, to un-moderated

online support groups which are based solely on peer interactions (Lindsay et al., 2009).

Lindsay et al. (2009) found that moderated online support groups help to increase social

support, build motivation and self-confidence, and in turn reduce risky behaviours such as

poor dietary intake, outcomes which were not replicated in the un-moderated support group

phase. Overall, the literature suggests there is a growing movement towards online support

groups, and there is a potential for research to be focused on this growth area.

Emphasis on qualitative data and case studies Much of the research undertaken on self-help and peer support groups originated in the

1970s, where support groups emerged in the form of community run health clinics, designed

to enable autonomy over one’s own healthcare (Borkman & Munn-Giddings, 2008). It was not

until the mid-1990s that quantifiable data started to emerge on the efficacy of support groups.

As such a substantial proportion of the literature is based upon qualitative data and case

studies. Because these studies do not provide outcomes from a measurable intervention they

did not meet the criteria for this paper (Francis, Petty, & Winterbauer, 1984; Gilliland, 1979;

Hildingh et al., 1994; Imhoff, 1976; Klinger, 1985; Morland, 1992; Stanford, Buttery, & Di

Ciacca, 1996). These papers do however indicate that COPD and CVD patients find support

groups helpful and reassuring (Morland, 1992), increase emotional support and

companionship (Hildingh et al., 1994), build confidence, enhance coping skills, and develop a

sense of belonging (Gilliland, 1979), all of which are essential psychosocial needs.

Conclusion It is difficult to make conclusions as to the efficacy of volunteer support groups for COPD and

CVD patients, primarily due to the ambiguity in support group processes and definitions, and

the focus on healthcare professionals in support group programs (Alberto & Joyner, 2008;

Jackson et al., 2009; Mularski et al., 2009; Munn‐Giddings & McVicar, 2007; Pistrang et al.,

2008; Schulz et al., 2008). Whilst there is some evidence to suggest that self-help and peer

support groups may be beneficial in increasing patient’s confidence, self-esteem, coping skills,

and overall quality of life, this evidence is tentative, and a greater body of research is required

before any substantial conclusions can be made (Hildingh & Fridlund, 2001a; Hildingh &

21

Fridlund, 2003, 2004). Studies on volunteer support groups for cancer patients, people with

mental illnesses, diabetes patients, people with weight concerns, individuals with alcohol

additions, and those who are experiencing bereavement, indicate that support group

participation can improve psychological adjustment and reduce distress, increase self-

esteem, and promote adaptive coping skills, however the evidence is lacking for COPD and

CVD populations (Kyrouz et al., 2002). There is preliminary evidence to suggest volunteer

support groups offer social benefits, through reducing isolation, increasing social networks

and building close empathetic relationships (Hildingh et al., 1994; Song et al., 2011), however

more research is required to determine the efficacy of self-help and peer support groups in

improving the mental health of these two populations relative to other treatment options.

22

Website search

Introduction The aim of section two was to identify domestic and international organisations which

completed similar activities to ConnectGroups. The outcome of this section enables

ConnectGroups to have a direct comparison of their organisation to advocate for their

organisation and potentially improve their online presence.

Method To compare and contrast ConnectGroups with similar organisations, a list of activities that are

currently being undertaken ConnectGroups were discussed with key personnel. This resulted

in the following activities being determined for comparison; the development of support

groups; education and training which includes the delivery of workshops; a referral service

and/or directory; advocacy; promotion; the participation in research; and support group

membership to the organisation.

Search A comprehensive search of Google was completed. The search string included the following

keywords:

Constant keywords: self-help group, support group, peer support group

Combined with: training, service, referral , education, information, mentor,

community, advocacy, repository, clearinghouse, peak body, research, promotion

Google yielded 16,400,000 hits; most of which were irrelevant or repeats. All resultant sites

were visited until repeated listings suggested no more new sites would be found. All websites

identified were checked for directories of other similar websites, which were also searched for

comparable websites. Websites were excluded if they were about a specific disease, were

based on one area of health (e.g. mental health), were not in English and did not have at least

two of the activities performed by ConnectGroups.

Results Overall there were 12 websites identified that had similar characteristics to ConnectGroups.

Of these three were domestic and nine were international websites. Table 4.1 provides a

comparison of all websites to ConnectGroups activities.

No other organisation completed all of the activities that ConnectGroups participates in. Three

organisations completed six of the activities; Self-Help Queensland Inc (domestic); Collective

of Self Help Groups (domestic); and Self Help Connect UK (international). The three most

common activities completed by organisations were the aid in the development of support

23

groups, education and training, and referral to or the provision of an online directory of support

groups. In addition, two organisations, Self Help Organisations United Together (SHOUT) and

the New Jersey Self-help Clearinghouse, had directories of similar domestic and international

organisations. ConnectGroups was incorrectly identified on the SHOUT website and was

absent on the New Jersey Self-help Clearinghouse.

24

Table 4.1: Comparison of domestic and international organisations similar to ConnectGroups

Organisation Aid in the development of support groups

Education and training

Referral service and/or

directory

Advocacy Promotion Complete research

Membership to organisation

Other Total activities

completed (excl. Other)

Domestic

1. ConnectGroups x 7

2. Self-Help Queensland Inc

x x 6

3. Collective of Self Help Groups

x x 6

4. SHOUT (Self Help Organisations United Together)

x x x 4

International

1. Self Help Connect UK (UK)

x x 6

2. New Jersey Self-help Clearinghouse (USA)

x x 5

3. Self Help Connection (Canada)

x x x 5

4. Family Service Self Help Center (USA)

x x x x 4

5. Center for Community Support and Research (USA)

x x x x 4

6. Self-Help Resource Centre (Canada)

x x x x 4

7. Alaska peer support consortium (USA)

x x x x x 3

8. PeerNetBC (Canada) x x x x x 3

9. American self-help Clearinghouse (USA)

x x x x x x 2

25

Recommendations The recommendations from this report are provided below.

Section 1 It would be beneficial for individuals who are working at ConnectGroups to be clear in their

definition of support groups, particularly in the role of self-help and peer support groups, and

the mutual support and experiential experience of facilitators that is provided. Ultimately, this

would help in the promotion of ConnectGroups.

Section 2 1. Given the limited evidence found for CVD and COPD broadening the search to include

cancer and stroke may provide additional evidence on the efficacy of volunteer support

groups.

2. ConnectGroups is in a unique position to complete research into the efficacy of volunteer

support groups, specifically mental health, quality of life, and social support outcomes for

participants. Potential projects could include:

a. Assessing individuals who are referred to a support group using a pre- and

post-design whereby the controls are those that don’t take up the support group

b. Determine whether a specific chronic disease may benefit from a particular

support group e.g. Does COPD patients have improved mental health if they

attend a self-help versus a peer support group?

c. A randomised control trial to compare a volunteer support groups and

professionally-led group to a control group.

Section 3 1. Contact SHOUT and organise for ConnectGroups to be updated on their web page.

2. Contact the New Jersey Self-help Clearinghouse and organise for ConnectGroups to be

added to their Clearinghouse directory.

(http://www.mededfund.org/NJgroups/CLEARINGHOUSES.htm)

26

Appendix 1

Organisation URL Country

Domestic

1. ConnectGroups http://www.connectgroups.org.au/ Australia (Western Australia)

2. Self Help Queensland Inc

http://www.selfhelpqld.org.au/ Australia (Queensland)

3. Collective of Self Help Groups

http://www.coshg.org.au/ Australia (Victoria)

4. SHOUT (Self Help Organisations United Together)

http://www.shout.org.au/

Australia (Australian Capital Territory)

International

1. New Jersey Self-help Clearinghouse

http://www.njgroups.org/ USA

2. American self-help clearinghouse

http://www.mentalhelp.net/selfhelp/ USA

3. Family Service Self Help Center

http://selfhelp.famservcc.org/ USA

4. Alaska peer support consortium

http://www.akpeersupport.org/HomePage.aspx USA

5. Center for Community Support and Research, Wichita State University

http://www.wichita.edu/thisis/home/?u=ccsr USA

6. Self Help Connect UK http://www.selfhelp.org.uk/home/ UK

7. Self Help Connection http://selfhelpconnection.ca/ Canada

8. Self-help resource Centre

http://www.selfhelp.on.ca/what-we-do/ Canada

9. PeerNetBC http://www.peernetbc.com/ Canada

27

References

Alberto, J., & Joyner, B. (2008). Hope, optimism, and self-care among Better Breathers

Support Group members with chronic obstructive pulmonary disease. Applied nursing research : ANR, 21(4), 212-217. doi: 10.1016/j.apnr.2006.12.005

Australian Institute of Health and Welfare. (2006). Chronic diseases and associated risk factors in Australia, 2006 (pp. 13-29). Canberra: AIHW.

Australian Institute of Health and Welfare. (2014). Australia's health 2014 (14 ed.). Canberra: AIHW.

Bandura, A. (1998). Health promotion from the perspective of social cognitive theory. Psychology and health, 13(4), 623-649. doi: 10.1080/08870449808407422

Becu, M., Becu, N., Manzur, G. and Kochen, S. (1993). Self-Help Epilepsy Groups: An Evaluation of Effect on Depression and Schizophrenia. Epilepsia, 34(5), 841-845.

Borkman, T., & Munn-Giddings, C. (2008). Self-help groups challenge health care systems in the US and UK.

Bottomley, A. (1997). Where are we now? Evaluating two decades of group interventions with adult cancer patients. Journal of psychiatric and mental health nursing, 4(4), 251-265. doi: 10.1046/j.1365-2850.1997.00060.x

Bright, J. I., Baker, K. D., & Neimeyer, R. A. (1999). Professional and paraprofessional group treatments for depression: a comparison of cognitive-behavioral and mutual support interventions. J Consult Clin Psychol, 67(4), 491-501.

Brooks, D., Krip, B., Mangovski-Alzamora, S., & Goldstein, R. S. (2002). The effect of postrehabilitation programmes among individuals with chronic obstructive pulmonary disease. European Respiratory Journal, 20(1), 20-29. doi: Doi 10.1183/09031936.02.01852001

Brown, L. D., Tang, X., & Hollman, R. L. (2014). The structure of social exchange in self-help support groups: development of a measure. Am J Community Psychol, 53(1-2), 83-95. doi: 10.1007/s10464-013-9621-3

Bryan, A. E. B. (2013). Peer-administered interventions for depression: A meta-analytic review. The University of Arizona.

Cafarella, P. A., Effing, T. W., Usmani, Z. A., & Frith, P. A. (2012). Treatments for anxiety and depression in patients with chronic obstructive pulmonary disease: A literature review. Respirology, 17(4), 627-638. doi: 10.1111/j.1440-1843.2012.02148.x

Calverley, P. M. A. (2008). COPD: what is the unmet need? British Journal of Pharmacology, 155(4), 487-493. doi: 10.1038/bjp.2008.362

Channer, K. S., Barrow, D., Barrow, R., Osborne, M., & Ives, G. (1996). Changes in haemodynamic parameters following Tai Chi Chuan and aerobic exercise in patients recovering from acute myocardial infarction. Postgraduate Medical Journal, 72(848), 349-351.

Christenhusz, L., Pieterse, M., Seydel, E., & van der Palen, J. (2007). Prospective determinants of smoking cessation in COPD patients within a high intensity or a brief counseling intervention. Patient Educ Couns, 66(2), 162-166. doi: 10.1016/j.pec.2006.11.006

Cohen, & Wills, T. A. (1985). Stress, social support, and the buffering hypothesis. Psychological bulletin, 98(2), 310-357. doi: 10.1037/0033-2909.98.2.310

Cohen, M. B., & Mullender, A. (2006). The personal in the political: Exploring the group work continuum from individual to social change goals. Social Work with Groups, 28(3-4), 187-204. doi: 10.1300/J009v28n03_13

Coleman, S. M., Katon, W., Lin, E., & Von Korff, M. (2013). Depression and death in diabetes; 10-year follow-up of all-cause and cause-specific mortality in a diabetic cohort. Psychosomatics, 54(5), 428-436. doi: 10.1016/j.psym.2013.02.015

Davidson, D. M., & Maloney, C. A. (1985). Recovery after Cardiac Events. Physical Therapy, 65(12), 1820-1827.

28

Davidson, L., Chinman, M., Kloos, B., Weingarten, R., Stayner, D., & Tebes, J. K. (1999). Peer Support Among Individuals With Severe Mental Illness: A Review of the Evidence. Clinical Psychology: Science and Practice, 6(2), 165-187. doi: 10.1093/clipsy.6.2.165

Davidson, L., Chinman, M., Sells, D., & Rowe, M. (2006). Peer support among adults with serious mental illness: a report from the field. Schizophrenia bulletin, 32(3), 443-450. doi: 10.1093/schbul/sbj043

Dennis, C. L. (2003). Peer support within a health care context: a concept analysis. Int J Nurs Stud, 40(3), 321-332.

Endo, T., Utz, M., & Johnston, P. (2012). Hospital utilisation and funding for patients with selected chronic conditions - 1. Asthma/COPD. State of Queensland

Francis, P. B., Jr., Petty, T. L., & Winterbauer, R. H. (1984). Helping the COPD patient help himself. Patient Care, 18(11), 177-180, 183-177.

Frey, J. A. (2000). Gender differences in coping styles and coping effectiveness in chronic obstructive pulmonary disease groups. Heart & Lung, 29(5), 367-377. doi: 10.1067/mhl.2000.108789

Gartner, & Riessman. (1976). Self-help models and consumer intensive health practice. Am J Public Health, 66(8), 783-786.

Gartner, & Riessman, F. (1982). Self-help and mental health. Hosp Community Psychiatry, 33(8), 631-635.

Gilliland, M. M. (1979). The coronary club. Superv Nurse, 10(3), 50-51. Gray, R. E., Orr, V., Carroll, J. C., Chart, P., Fitch, M., & Greenberg, M. (1998). Self-help

groups. Can Fam Physician, 44, 2137-2142. Heisler, M., Halasyamani, L., Cowen, M. E., Davis, M. D., Resnicow, K., Strawderman, R. L.,

. . . Piette, J. D. (2013). Randomized Controlled Effectiveness Trial of Reciprocal Peer Support in Heart Failure. Circulation-Heart Failure, 6(2), 246-253. doi: Doi 10.1161/Circheartfailure.112.000147

Helgeson, V. S., & Gottlieb, B. H. (2000). Support Groups (pp. 221-245). Hildingh, C., & Fridlund, B. (2001a). Patient participation in peer support groups after a cardiac

event. British journal of nursing (Mark Allen Publishing), 10(20), 1357-1363. Hildingh, C., & Fridlund, B. (2001b). Patient participation in peer support groups after a cardiac

event. Br J Nurs, 10(20), 1357-1363. Hildingh, C., & Fridlund, B. (2003). Participation in peer support groups after a cardiac event:

a 12-month follow-up. Rehabil Nurs, 28(4), 123-128. Hildingh, C., & Fridlund, B. (2004). A 3-year follow-up of participation in peer support groups

after a cardiac event. European Journal of Cardiovascular Nursing, 3(4), 315-320. doi: 10.1016/j.ejcnurse.2004.05.003

Hildingh, C., Fridlund, B., & Segesten, K. (1995). Social Support in Self-Help Groups, as Experienced by Persons Having Coronary Heart-Disease and Their Next of Kin. International Journal of Nursing Studies, 32(3), 224-232. doi: Doi 10.1016/0020-7489(95)00001-E

Hildingh, C., Segesten, K., Bengtsson, C., & Fridlund, B. (1994). Experiences of social support among participants in self-help groups related to coronary heart disease. Journal of clinical nursing, 3(4), 219-226. doi: 10.1111/j.1365-2702.1994.tb00392.x

Hinrichsen, G. A., T.A. Revenson, et al. (1985). Does Self-Help Help? An Empirical Investigation of Scoliosis Peer Support Groups. Journal of Social Issues, 41(1), 65-87.

Hughes, D. T. (1980). Successful planning and implementation of a hospital-based community self-help group for patient and community cardiac education. Hosp Top, 58(2), 25-27. doi: 10.1080/00185868.1980.9954764

Humphreys, K., & Ribisl, K. M. (1999). The case for a partnership with self-help groups. Public Health Rep, 114(4), 322-325, 328-329.

Imhoff, C. A. (1976). The Ogden Community Heart Club. ARN J, 1(3), 14-16. Jackson, A. M., Gregory, S., & McKinstry, B. (2009). Self-help groups for patients with

coronary heart disease as a resource for rehabilitation and secondary prevention-what is the evidence? Heart & lung : the journal of critical care, 38(3), 192-200. doi: 10.1016/j.hrtlng.2009.01.009

29

Jensen, P. S. (1983). Risk, Protective Factors, and Supportive Interventions in Chronic Airway-Obstruction. Archives of General Psychiatry, 40(11), 1203-1207.

Kessler, R. C., Berglund, P., Demler, O., Jin, R., Koretz, D., Merikangas, K. R., . . . National Comorbidity Survey, R. (2003). The epidemiology of major depressive disorder: results from the National Comorbidity Survey Replication (NCS-R). JAMA, 289(23), 3095-3105. doi: 10.1001/jama.289.23.3095

Klinger, M. (1985). Patients helping patients. RNABC News, 17(5), 26-29. Kyrouz, E. M., Humphreys, K., & Loomis, C. (2002). A Review of research on the effectiveness

of self-help mutual aid groups. In W. B. J. & E. J. Madara (Eds.), American Self-Help Clearinghouse Self-Help Group Sourcebook (7th edition) (pp. 1-16). California, U.S.A: Veterans Affairs Health Care System.

Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer Pub. Co.

Lennon-Dearing, R. (2008). The benefits of women-only HIV support groups. Journal of HIV/AIDS and Social Services, 7(1), 27-45. doi: 10.1080/15381500802093142

Levy, L. H. (1976). Self-Help Groups: Types and Psychological Processes. The Journal of Applied Behavioral Science, 12(3), 310-322. doi: 10.1177/002188637601200305

Lindsay, S., Smith, S., Bellaby, P., & Baker, R. (2009). The health impact of an online heart disease support group: a comparison of moderated versus unmoderated support. Health Educ Res, 24(4), 646-654. doi: 10.1093/her/cyp001

Magnezi, R., Bergman, Y. S., & Grosberg, D. (2014). Online Activity and Participation in Treatment Affects the Perceived Efficacy of Social Health Networks Among Patients With Chronic Illness. Journal of Medical Internet Research, 16(1). doi: DOI 10.2196/jmir.2630

Maisiak, R., M. Cain, et al. (1981). Evaluation of TOUCH: An Oncology Self-Help Group. Oncology Nursing Forum, 8(3), 20-25.

Mason, E., Clare, L., & Pistrang, N. (2005). Processes and experiences of mutual support in professionally-led support groups for people with early-stage dementia. Dementia, 4(1), 87-112. doi: 10.1177/1471301205049192

Mathers, C. D., & Loncar, D. (2006). Projections of global mortality and burden of disease from 2002 to 2030. PLoS Medicine, 3(11).

Medina, E. L., Loques, O., & Mesquita, C. T. (2013). Health Social Networks as Online Life Support Groups for Patients With Cardiovascular Diseases. Arquivos Brasileiros De Cardiologia, 101(2), E39-E44. doi: Doi 10.5935/Abc.20130161

Morland, G. (1992). "Take heart": former heart patients form support groups. WHO Reg Publ Eur Ser, 44, 273-275.

Moullec, G., & Ninot, G. (2010). An integrated programme after pulmonary rehabilitation in patients with chronic obstructive pulmonary disease: effect on emotional and functional dimensions of quality of life. Clinical Rehabilitation, 24(2), 122-136. doi: 10.1177/0269215509346088

Moullec, G., Ninot, G., Varray, A., Desplan, J., Hayot, M., & Prefaut, C. (2008). An innovative maintenance follow-up program after a first inpatient pulmonary rehabilitation. Respiratory Medicine, 102(4), 556-566. doi: 10.1016/j.rmed.2007.11.012

Moussavi, S., Chatterji, S., Verdes, E., Tandon, A., Patel, V., & Ustun, B. (2007). Depression, chronic diseases, and decrements in health: results from the World Health Surveys. Lancet, 370(9590), 851-858. doi: 10.1016/S0140-6736(07)61415-9

Mularski, R. A., Munjas, B. A., Lorenz, K. A., Sun, S., Robertson, S. J., Schmelzer, W., . . . Shekelle, P. G. (2009). Randomized controlled trial of mindfulness-based therapy for dyspnea in chronic obstructive lung disease. J Altern Complement Med, 15(10), 1083-1090. doi: 10.1089/acm.2009.0037

Munn‐Giddings, C., & McVicar, A. (2007). Self‐help groups as mutual support: What do carers value? Health & Social Care in the Community, 15(1), 26-34. doi: 10.1111/j.1365-2524.2006.00660.x

Oades, L. G., Deane, F. P., & Anderson, J. (2012). Peer support in a mental health service context. Manual of Psychosocial Rehabilitation, 185-193.

30

Parry, M. J., Watt-Watson, J., Hodnett, E., Tranmer, J., Dennis, C. L., & Brooks, D. (2009). Cardiac Home Education and Support Trial (CHEST): a pilot study. Can J Cardiol, 25(12), e393-398.

Pfeiffer, P. N., Heisler, M., Piette, J. D., Rogers, M. A., & Valenstein, M. (2011). Efficacy of peer support interventions for depression: a meta-analysis. Gen Hosp Psychiatry, 33(1), 29-36. doi: 10.1016/j.genhosppsych.2010.10.002

Pistrang, N., Barker, C., & Humphreys, K. (2008). Mutual help groups for mental health problems: a review of effectiveness studies. American journal of community psychology, 42(1-2), 110-121. doi: 10.1007/s10464-008-9181-0

Polsky, D., Doshi, J. A., Marcus, S., Oslin, D., Rothbard, A., Thomas, N., & Thompson, C. L. (2005). Long-term risk for depressive symptoms after a medical diagnosis. Arch Intern Med, 165(11), 1260-1266. doi: 10.1001/archinte.165.11.1260

Pretto, A., & Pavesi, N. (2012). Empowerment in the Self-help/Mutual Aid Groups： The Case

Study of Alcoholics Anonymous in Italy. 美中公共管理, 9(8), 943-952.

Roberts, L. J., Salem, D., Rappaport, J., Toro, P. A., Luke, D. A., & Seidman, E. (1999). Giving and receiving help: interpersonal transactions in mutual-help meetings and psychosocial adjustment of members. Am J Community Psychol, 27(6), 841-868.

Salvi, S. S., & Barnes, P. J. (2009). Chronic obstructive pulmonary disease in non-smokers. The Lancet, 374(9691), 733-743. doi: 10.1016/S0140-6736(09)61303-9

Scherer, Y. K., Janelli, L. M., & Schmieder, L. E. (1992). A time-series perspective on effectiveness of a health teaching program on chronic obstructive pulmonary disease. J Healthc Educ Train, 6(3), 7-13.

Schulz, U., Pischke, C. R., Weidner, G., Daubenmier, J., Elliot-Eller, M., Scherwitz, L., . . . Ornish, D. (2008). Social support group attendance is related to blood pressure, health behaviours, and quality of life in the Multicenter Lifestyle Demonstration Project. Psychology, health & medicine, 13(4), 423-437. doi: 10.1080/13548500701660442

Seebohm, P., Chaudhary, S., Boyce, M., Elkan, R., Avis, M., & Munn-Giddings, C. (2013). The contribution of self-help/mutual aid groups to mental well-being. Health & Social Care in the Community, 21(4), 391-401. doi: 10.1111/hsc.12021

Simmons, D. (1992). Diabetes Self Help Facilitated by Local Diabetes Research: The Coventry Asian Diabetes Support Group. Diabetic Medicine, 9, 866-869.

Solomon, P. (2004). Peer support/peer provided services underlying processes, benefits, and critical ingredients. Psychiatr Rehabil J, 27(4), 392-401.

Song, Y., Lindquist, R., Windenburg, D., Cairns, B., & Thakur, A. (2011). Review of outcomes of cardiac support groups after cardiac events. Western journal of nursing research, 33(2), 224-246. doi: 10.1177/0193945910371481

Stanford, A., Buttery, P., & Di Ciacca, L. (1996). Supporting the 'gaspers'. Community Nurse, 2(2), 28-29.

Stevinson, C., Lydon, A., & Amir, Z. (2010). Characteristics of professionally-led and peer-led cancer support groups in the United Kingdom. J Cancer Surviv, 4(4), 331-338. doi: 10.1007/s11764-010-0129-7

Stewart, M., Davidson, K., Meade, D., Hirth, A., & Weld-Viscount, P. (2001). Group support for couples coping with a cardiac condition. J Adv Nurs, 33(2), 190-199. doi: DOI 10.1046/j.1365-2648.2001.01652.x

Stewart, M. J. (1990). Expanding theoretical conceptualizations of self-help groups. Social science & medicine (1982), 31(9), 1057-1066. doi: 10.1016/0277-9536(90)90119-D

Turner, J., & Kelly, B. (2000). Emotional dimensions of chronic disease. West J Med, 172(2), 124-128.

Twehues, J. M. (2009). Public and private sector providers' attitudes and referral behaviors of OCD self-help and professionally-led support groups. (Dissertation/Thesis), Xavier University.

Vanderavort, A., & Vanharberden, P. (1985). Helping self-help groups: a developing theory. PSYCHOTHERAPY, 22(2), 269-272. doi: 10.1037/h0085505

31

Wiliamson, G. R. (1997). Why should acute trusts be interested in cardiac rehabilitation? British Journal of Nursing, 6(19), 1111-1130.

Wilson, J. S., Fitzsimons, D., Bradbury, I., & Elborn, J. S. (2008). Does additional support by nurses enhance the effect of a brief smoking cessation intervention in people with moderate to severe chronic obstructive pulmonary disease? A randomised controlled trial. International Journal of Nursing Studies, 45(4), 508-517. doi: DOI 10.1016/j.ijnurstu.2006.10.001

World Health Organization. (2008). The global burden of disease: 2004 update. Switzerland: World Health Organisation.

World Health Organization. (2013). Cardiovascular diseases (CVDs) Fact Sheet 317. Switzerland: World Health Organisation.

Yohannes, A. M., Baldwin, R. C., & Connolly, M. J. (2000). Mood disorders in elderly patients with chronic obstructive pulmonary disease. Reviews in Clinical Gerontology, 10(2). doi: 10.1017/S0959259800002100

Yohannes, A. M., Willgoss, T. G., Baldwin, R. C., & Connolly, M. J. (2010). Depression and anxiety in chronic heart failure and chronic obstructive pulmonary disease: prevalence, relevance, clinical implications and management principles. Int J Geriatr Psychiatry, 25(12), 1209-1221. doi: 10.1002/gps.2463