Correspondence:
Private Bag 92019, School of Population Health,
Faculty of Medical and Health Sciences, University of Auckland, New
Zealand.
64- 9- 3737599 (Office) 64- 9- 3035932 (FAX)
s.tse@auckland.ac.nz
Acknowledgements:The authors would like to express our gratitude
to group facilitators
who participated in this survey and the New Zealand
Bipolar Network for their support of this study.
Abstract
Individuals with bipolar disorder may be at risk of not
maintaining positive social networks that are essential for health and
wellbeing. Peer support is an intentional form of social support that
may help individuals to develop new perspectives on one’s illness and
access information, including specific training. The aim of this pilot
study was to describe the running of peer support groups for people
with bipolar disorder in New Zealand and from the group facilitators’
point of view, to examine the critical factors that determine their
success. Data were collected via a descriptive survey of known bipolar
support groups within New Zealand. Three key elements of successful
peer support group emerged from the study: Firstly, a close partnership
between group facilitator and core group members; secondly, defining
the roles for mental health professionals in peer support groups; and
finally establishing the credibility of the group within the community.
Key words: recovery, social support, self-help
Introduction
Bipolar disorder (BD) is a disruptive major mental disorder. It affects
approximately one in 100 adults at some stage in their lives in New
Zealand and has a lifetime prevalence in the general population of
between 0.3 and 1.5 percent across the world (Silverstone & Romans,
1995, Weissman, et al., 1996). BD has a relapsing and remitting course,
in which some individuals have full recovery between manic, depressed
or mixed episodes of illness. Nevertheless, research data to date
generally points to the relentless nature of BD (Staner, et al., 1997;
Winokur, et al., 1994), for example, eight out of 10 patients who
reached full recovery from their first episode went on to develop a new
episode within the next 10 years. Some clinicians and researchers
have suggested that relapse of illness may be related to the scars of
the episode themselves, the absence or inadequacy of treatment, the
presence of an organic syndrome, ongoing use of alcohol or unprescribed
drugs and/ or the absence of social support (Goodwin & Jamison,
1990). More recently it has been suggested that the dominant aspect
amongst people who had one episode, and then no further
hospitalizations, was the person’s acceptance of responsibility
for their own wellness (Copeland, 1998).
In an analysis of Global Burden of Disease, BD features in the top ten
most disabling conditions in the world (Murray & Lopez 1996). BD is
regarded as a psychiatric disorder is characterised by low prevalence
and high life span disease burden. The economic burden of BD alone in
the United States in 1990 was estimated to be US$15.5 billion in
diminished or lost productivity in work performance (Hitley, Brady
& Hales, 1999). In a recent Australian study, it has also been
found that mood disorder, which affects 100,000 Australians, costs the
health system A$300 million each year, with indirect costs of A$1.3
billion (Pezzullo, 2003). In modern workplaces, the leading source of
workers’ disability is depression (Stewart, Ricci, Chee, Morganstein,
& Lipton, 2003). A common thread that cuts through the optimal
management of BD is the need to minimize the intensity and duration of
the individual episodes and if possible, prevent the occurrence of
future episodes (Romans & Silverstone, 1994).
Social support has been associated with good health, well-being and
functional performance of individuals with BD (Edmonds, et al., 1998;
Goldberg, Harrow, & Grossman, 1995; Keck, et al., 1998; Michalak,
Wilkinson, Hood, Dowrick, & Wilkinson, 2003; McPherson, Dore, Loan,
& Romans, 1992). Social support generally refers to help that is
provided by one’s family or friends that facilitates the individual’s
ability to cope with stressful life events. It has an element of
intimacy, and an opportunity for reciprocal and socially motivated
behaviors (Berkman, 1995). However the question of whether and in what
form social support may be available is of particular importance for
individuals with BD because the social networks are at greater risk due
to a variety of reasons such as the stigma associated with mental
illness, the lack of effective social skills, the presence of socially
undesirable behaviors when the person is manic or depressed, and/or
other social sequelae wrought by the illness (e.g., loss of life roles,
financial hardship, unemployment).
People with BD sometimes find support, acceptance and comfort in
discussing their experiences with other individuals who have experience
of similar illness in peer support or mutual-help groups. Davidson and
colleagues (1999) defined peer or mutual support as a process by which
people come together to help each other address common problems or
shared concerns. It is a system of giving and receiving help founded on
key principles of respect, shared responsibility, and mutual agreement
of what is helpful. It is about understanding another’s situation
empathically through the shared experience of emotional and
psychological pain. Mead, Hilton and Curtis (2001) added that when
people find affiliation with others they feel are “like” them, they
feel a connection. This connection, or affiliation, is a deep, holistic
understanding based on mutual experience where people are able to “be”
with each other without the constraints of traditional (expert/patient)
relationships. One of the main differences between peer support and
naturally occurring social support may be the intentional way in which
it occurs, that is, there is usually a specific setting involved where
new information, perspectives, training, skills and a supportive social
climate are fostered. Some types of peer or mutual support are offered
in the context of particular world-views and ideologies that are aimed
at assisting people to make sense of their experiences.
There has been increased popularity in the use of peer support groups
for people with mental health problems such as bipolar disorder,
schizophrenia, alcohol and substance abuse disorders (Corrigan, et al.,
2002; Felix-Ortiz, Salazar, Gonzalez, Sorensen, & Plock, 2000;
Kingree & Thompson, 2000; Powell, Yeaton, Hill, & Silk, 2001).
Several studies examined the attitudes, behaviors and experiences of
mental health professionals toward psychiatric peer support groups
(e.g., Chinman, Kloos, O’Connell & Davidson, 2003; Powell, Silk,
& Albeck, 2000). For instance, Powell and his colleagues
(2000) found that whether or not psychiatrists made referrals to peer
support groups depended upon several factors, the presence of such
groups in the same facility as the psychiatrists’ clinics, the
psychiatrists’ receipt of information about peer support groups and his
or her beliefs about its benefits and limitations. A number
of other variables may dictate who gets involved in peer support. Some
individuals with BD may avoid face-to-face support groups or fear
discrimination if employers, workmates or friends learn about their
difficulties. Some of these have turned to cyberspace in the form of
Internet support groups (ISGs) (Lamberg, 2003). Researchers have
found that, both face-to-face and online support groups offer emotional
support (it is often considered by group members as the chief benefit),
encouragement and information (Hoston, Cooper, & Ford, 2002; Klemm,
Reppert, & Visich, 1998; Powell, et al., 2001; Rappaport, 1993).
Corrigan and his associates’ (2002) work was the first that the authors
are aware of to examine the recovery processes that might account for
the positive outcomes occurred in peer support groups for people who
have serious mental illness. Yet despite the vast literature on social
support and mental illness, there is paucity of research on critical
factors influencing the outcomes of peer support groups for people with
BD.
There were two aims of the present study. The first was to describe the
running of peer support groups for people with BD in New Zealand. How
many groups existed in New Zealand and how were they distributed over
the country? What were the common types of activities? What was the
background of the group facilitators? The second objective was to
examine, from the group facilitators’ perspective, what were the
critical factors determining the success of peer support groups for
people recovering from BD?
Method
Procedures and participants
This study was implemented as part of the evaluation framework for the
New Zealand Bipolar Network which is a voluntary, charitable
organization governed by consumers with mood disorders (primarily
bipolar disorder) in New Zealand. The network is funded by membership,
donations and community funding agencies (but not the central
government). The present descriptive survey used a naturalistic
design and the sampling frame was all the nineteen support groups (in
some regions there are multiple groups) within New Zealand. This
included groups identifying themselves as depression support groups,
where these groups were also members of the New Zealand Bipolar
Network. To be eligible for inclusion groups could be professionally
facilitated, peer-run support groups or groups that adopted a
combination approach but they needed to incorporate some aspect of
social support, broadly defined. Of these support groups, five were
excluded due to there being no group in existence or the former group
being in recess. A further member group was identified as not
specifically a BD support group and was not asked to return the survey
form. Groups offering support primarily to relatives or family members
were also excluded. A total of 13 surveys were mailed to the key
contact person or group facilitator in each region, further copies of
the survey were also emailed as an attachment to online members of the
newsletter mailing list to maximize the chances that any unknown groups
might also respond. Two reminders were circulated by email to group
facilitators in order to improve the response rate. From the 13 groups
surveyed, ten groups (77%) responded.
Measures/Instruments
Key questions for the present survey were formulated based on a forum
held in 2003 at the National New Zealand Bipolar Conference. That
particular forum was about an update on peer support groups in each
region which gave useful clues on what should be covered in the
questionnaire. The first author took notes of the session and discussed
the drafted questionnaire with the research team. The finalized
questionnaire included following areas:
• General description of the bipolar peer support
group in each region (e.g., background of group facilitators, frequency
of meeting, time of meeting);
• Types of activities organized in the meetings;
• A reflective question on how the group facilitators
rated the overall functioning of the group(s). “1” denotes “close to
not functioning at all, and “10” indicates “achieving the group set
objectives”;
• An open-ended question pertained to what were the
critical factors to successful peer support group.
Analyses
Data from the 13 returned questionnaire were analysed using a general
inductive approach to identify key themes relevant to the research
objectives. This analytic strategy is similar to grounded theory and
leads to a theoretical framework developed inductively from data and
emerged themes (Strauss & Corbin, 1990, 1998; Thomas, 2003;
2000). The first and second author reviewed the data individually
and then the whole research team examined the overall results. Studying
the written data repeatedly enabled the development of themes and
sub-themes and their linkages. Analyses were performed primarily by
cross-case analyses of each returned responses and the constant
comparative method (Huberman & Miles, 1998). Focus for the present
data analyses included: general description on peer support groups,
respondents’ opinion on critical factors to successful peer support
groups. Special attention was given to possible meanings of each
emerging theme and sub-theme. All these findings were then synthesized
into a framework to explain the keys to successful peer support groups
for individuals recovering from bipolar illness.
Results
Bipolar peer support groups in New Zealand
Four of the ten respondents came from New Zealand metropolitan cities
(Auckland, Wellington, Christchurch, Hamilton and Dunedin). Only one
out of the ten groups was led by mental health professionals whereas
the rest were facilitated by people with experiences of BD or co-led by
both professionals and service users. The average meeting attendance
was ten people. The average self-reported rating by facilitators on the
overall functioning of the peer support groups was about “7” out of a
ten-point scale, where a high score indicated optimal functioning.
Other key findings are summarized in Table1.
Table 1. Survey on
Bipolar peer help Groups in New Zealand
|
Respondent1
|
Facilitation style |
Frequency of meeting
|
Meeting time |
Average number of people attending
|
Impression on overall functioning: 1-
very poor;
10- very well |
| 1, NMC |
Combined- led by peer and professionals
|
Weekly |
Evening, (i.e., after 7pm) |
8 |
9 |
| 2, NMC |
Peer facilitation
|
Fortnightly
|
Evening |
12 |
7 |
3, MC
|
Combined |
Weekly |
Combined |
5 |
Did not complete |
| 4, NMC |
Peer facilitation |
Weekly |
Both- evening & day time meetings
|
15 |
10 |
| 5, NMC |
Peer facilitation
|
Monthly |
Evening |
6 |
4 |
| 6, MC |
Professional facilitated
|
Monthly |
Day time |
14 |
10 |
| 7, NMC |
Peer facilitation
|
Did not complete these items2
|
0 |
| 8, NMC |
Peer facilitation
|
Weekly |
Day time |
7 |
7 |
| 9, MC |
Peer facilitation
|
Monthly |
Evening |
10 |
5 |
|
10, MC |
Combined |
Did not complete |
Both |
Did not complete
|
10 |
1 NMC Non Metropolitan
City, MC Metropolitan City
2 This respondent provided useful
descriptive
data so her responses were not discarded in this survey.
The topics for education, sharing of personal experiences and
opinions were grouped as follows:
• Medication (values, benefits, side effects)
• Early warning signs (what they are when noticeable?
when to act? what to do and where to seek help?)
• Nutrition for the mind (use of food and supplements
that affect mood)
• Cognitive-behavioral therapy
• Spiritual well-being
• Life style issues (e.g., energy level, sleep
pattern, diet, opportunity for making life-style changes)
• Managing family (spouse/ partners, children) and
friend relationships
• Alternative treatments (what have people heard?
where to get information?)
• Dealing with discrimination and stigmatization (how
to deal with? what to say?)
• Diagnosis and its replications
• Housing
• Employment
• Talks from other non-government organizations about
the services they provided
• Talks by health professionals, social welfare
agencies and income support services
• Privacy law
• Educational video on people’s recovery journey
• Update on changes in mental health services or
system
• Report on national organizations and conferences
During the peer support group sessions, a range of activities was also
used to promote mental health. They are: yoga and meditation, physical
exercise, training in time and stress management, sharing of jokes,
recovery and depression awareness course.
“Informal tea/ coffee and biscuits time” was the most commonly used
activity to promote social interaction and emotional support among
group members. Some groups had set time for each attendee to discuss
how things have been in between the meeting time with special emphasis
on how they were coping instead of why they are not. Shared dinners,
meals and festival gathering were also very popular social activities.
Occasionally friends, partners and family members were invited to come
along and they brought a different social dimension to the peer support
groups.
Critical factors contributing to the success of bipolar peer support
groups from group facilitators’ perspective
There were three major factors or themes emerged from the results.
Factor one was related to the qualities of group facilitators and how
they worked with their core members in the group. Factor two captured
key issues arising from the group that members and facilitators alike
have to deal with in order to run the group successfully. Peer support
groups do not exist in a vacuum. Respondents identified additional
issues external to the group in factor three, which would potentially
determine the outcome of peer support groups.
Factor one: Group leaders and group
members
• Successful group
can benefit from support provided by professionals or mental health
services during the establishment phase.
• “Adequate support from faithful and dependable
group members was equally important” (group facilitator 9). “It often
starts with the energy and commitment from one person but to ensure
sustainability this person needs the backing and support of others”
(group facilitator 3). Group facilitator 4 added “Good, strong
collective leadership and communication among leaders and core group
members”.
• Characteristics of effective facilitator or speaker
were: providing ideas, to empower, not to control group members or take
over the group, good listening skills, unconditional positive regard
and congruence, effective interpersonal skills, no “talking down”
attitude to group members, good role models, effective organization
skills, networking skills with relevant agencies.