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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
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