Abstract
Caregivers of people with a mental illness experience considerable ongoing burden and psychological distress as a consequence of their caregiving role.  Support groups for such carers aim to address this burden and distress.   While the literature is limited, the qualitative and quantitative research to date suggests that carers benefit from attending support groups.  This qualitative study furthers existing research by examining the experiences of participants of an ongoing support group. Specifically: what were participants’ experiences, both positive and negative, of the support group? And, what are the factors that influenced their attendance?  Results suggest that participants had mostly positive experiences of being in the support group.  Results are compared to previous research and unique themes discussed.    
Keywords: support groups; mental illness; carers; family members

Introduction
With the advent of deinstitutionalisation in Australia over the last two decades, family members of persons with a mental illness have often assumed a caring role.  A substantial body of research suggests that in such a role caregivers experience considerable ongoing burden and psychological distress (Cuijpers, 1999).  There are multiple domains in which carers are affected: they are always ‘on duty’; have unfavourable experiences in interactions with health professionals; family functioning can be negatively affected; and they can suffer “stigma by association”, grief, guilt, powerlessness, anger and other distressing emotions. Despite their central role in the healthcare of their relative with a mental illness, only a minority of carers receive services from mental health agencies (Dixon, Luckstead, Stewart, & Delahanty, 2000; West et al., 2005).

Recognising carer burden a “Family and Friends” group (FFG) was established for the carers of people with severe mental illnesses.  Specifically the FFG was designed to address carers’ needs for psycho-education, grief resolution (Young, Bailey, & Rycroft, 2004),  peer and emotional support (Arblaster et al., 2001).  Like other support groups, the FFG was “geared for mutual support, information and growth and is based on the premise that people with a shared condition who come together can help themselves and each other to cope, with the two-way interaction of giving and receiving help” (Reay-Young, 2001, p. 6).

Compared to other types of family interventions for mental illness such as family psychoeducation, carer support groups have received little research attention.  Available research however, does suggest that these support groups are effective.  

Chou, Liu and Chu (2002) used a randomised control design, with seventy participants, to examine the utility of an eight session carer support group that focused on the provision of information, problem-solving, support and coping.  Carers attending these support groups compared to those who did not, had statistically significant improvements on measures of caregiving burden and depression.  Winefield, Barlow and Harvey (1998) also found carers made significant psychological gains after participating in a support group and maintained these gains for at least two months.  However, this study lacked a control group thus factors other than support-group attendance may be responsible for reported gains.
 
Quantitative research has also demonstrated that people attending support groups have increased knowledge of mental illness and mental health services, improved morale (Citron, Solomon, & Draine, 1999; Pickett-Schenk, Cook, & Laris, 2000), increased social support and improved confidence to meet their relatives needs (Citron, Solomon & Draine,1999).  Citron et al. (1999) also found negative effects of group attendance whereby after attending the group 18% of participants were at least somewhat more overwhelmed by their relative and 20% were at least somewhat less able to meet the needs of a person with a mental illness.  Such results require further investigation.

The results from these quantitative studies provide consistent findings that, generally, support group attendees find such groups beneficial.  Qualitative research supports these findings. Winefield, Barlow and Harvey (1998) conducted qualitative interviews with carers who had attended a short-term (8 session) support group.  Participants reported attending the group helped them develop a more positive attitude towards the ill relative, that contact with other carers decreased their sense of isolation and that they were empowered to advocate for better services.  Interestingly, they found carers’ needs were related to time caring.  Carers who had been in the role for up to five years wanted information and expected professionals to provide answers.  After about 10 years, carers were more accepting of their situation and were addressing their own grief.  Thereafter carers focused on advocacy and lobbying.  
Qualitative research has also shown after completing an 11-week, professionally led support group, carers experienced an increased sense of hope, universality (i.e. that others share their problems and experiences), adaptation to and acceptance of their situation, and the gaining of a sense of empowerment through an increased understanding and knowledge of mental illness (Van Hammond & Deans, 1995).

In summary, both quantitative and qualitative studies found that carers who attend support groups benefit in terms of psychological wellbeing, understanding mental illness and coping skills.  The current study aims to further this body of research by using a qualitative research design to examine, in an Australian setting, the factors that influence people to attend support groups and the impact of a time-unlimited support group for carers of people with a mental illness.

Method
We sought to understand, from the perspective of participants attending the FFG: 1. What are their experiences, both positive and negative, of the FFG? And 2. What are the factors that have influenced their attendance?

Participants
Nineteen carers who had attended at least one session of the FFG were sent a letter inviting them to participate.  These carers all cared for a person with schizophrenia treated at a Community Care Unit (CCU) in Melbourne Australia.  This CCU provides residential rehabilitation services for those with serious mental illness.   

Design
Data was gathered from an anonymous survey and focus group.  Participants were asked to provide demographic details and respond to questions about the following topics:  initial reasons for attendance; ongoing reasons for attendance; reasons for the cessation of attendance; the positive and negative impact of attending the FFG; and, what they would need to happen for them to resume or continue to attend the FFG (survey and focus group questions available from KW).

The survey (with return prepaid envelope) was sent with the letter inviting participation.   Two group facilitators (KW, PM) conducted the 2-hour focus group with 8 participants. It was recorded and transcribed.    


Analysis
Survey responses and the focus group transcript was subject to thematic analysis using the following process:
(i) Each statement made by the participants was coded according to theme it represented.  
(ii) Similarly coded statements were clustered together.   
(iii) These clusters of statements were given labels to represent the themes and sub-themes of the cluster.  

Trustworthiness was enhanced in three ways.   1. Two methods (survey and focus groups) were used to collect the data.  2. Two researchers independently assigned the codes and made consensus decisions about final code assignment.   3.  A second researcher (MG or LS) considered the theme and sub-theme assigned (by KW) to each cluster of statements.  Discrepancies were discussed until consensus agreement. 

Results
Demographics
Survey respondent characteristics
Eleven carers (58% response rate) returned their questionnaires.  This data indicates a diverse range of respondents in terms of age, region of birth and relationship to CCU resident (see table 1).  

Focus group participant characteristics
Eight carers (42% response rate) participated in the focus groups. Compared to the survey respondents the focus group participants were less diverse in ethnic background and appeared to have attended more FFG sessions (see table 1).

   

Why participants attended the Family and Friends group
Initial reasons
1.  Don’t know.
For some participants they did not know what they might get from attending the FFG.
“ I really didn’t know what to expect” Penelope   

2.  Seeking solutions.
Participants attended the FFG seeking strategies to improve their ill-relatives  wellbeing and to gain knowledge about the illness and CCU.  They sought to find out how to cope and they also wanted to influence the running of the CCU to improve services for their ill-relative.  
“We were interested in finding out all the ways to look after our son carefully and provide [him with] relief from his suffering”  survey 1

3.  Seeking relationship.
Participants wanted to meet people in similar situations who they could share experiences with, and learn and get support from. The relationship with the facilitator, who encouraged and reminded them about the group, also played a part in some individual’s decision to attend.
“To exchange experiences with others in similar situations and to gain understanding”  survey 7

Ongoing reasons to attend
1.  Relationships.
The relationships formed with the group members motivated participants to continue their attendance.  Notably an ongoing reason for attending was to give support to others, a factor that was not mentioned as a motivator for attendance earlier on.
    “Yes, as we not only were supported, but realised we could support others”  survey 1
    
2.  Self care.
Participants continued going to the FFG for their own self-care, to have a break and receive understanding and support.  
“I realised there is an awful lot of people out there that need help; not just the patients but the parents, the carers” Christine
 
Barriers - Why participants stopped attending
1.  Resources.
A lack of resources was the dominant reason for ceasing to attend. Participants did not have the time to attend due to other life and caring commitments.  Participants lacked transport to get to the group or it was too far to travel.  Participants’ health problems were also a barrier.

2.  Ill-relative factors.
When the ill-relative was no longer at the CCU participants tended not to attend the group (although this was allowed).  Participants also reported their ill-relative, directly or indirectly (e.g. when caring responsibilities prevented attendance) stopped them attending the group.  
    “[son] is really unwell and I don’t like leaving him for too long, so it makes it a bit         tricky” Megan

3. Focus on talking.
One participant did not continue as they found the focus was on talking rather than action. Similarly, another cited an instance where a former group member discontinued finding it depressing to hear stories similar to her own.
“it became obvious to me that it was a group meeting which was focused on talk but not action, and I think both are essential” survey 3

Understandably, participants reported the resolution of these barriers would enable their future attendance at meetings.

Participants’ negative experiences
The “negative” things that people had to say about the group were mostly the same as the barriers.  Two additional themes were disappointment and meeting agenda and scope.

1.  Disappointment.
Participants reported experiencing disappointment, despair and loss of faith in the mental health system.  Such disappointment was prompted by failed attempts to instigate practical activities to improve the CCU (e.g. starting a group for children and starting a cooking class).  
“we’ve tried to start something…and that just kind of fizzled out and that was it.  It is the lack of going forward with things that you try to start [and] frustration when you start things you really want to see work. And okay, you know a lot of things are going to fall flat. Seeing it fall flat when you put so much effort into it … kind of leaves you with a little bit of despair and you think oh well is this really as hopeful as you think it is. You lose a little bit of faith” Claire

2.  Meeting agenda and scope
Finally, whist not constantly agreed upon, there were group activities that some participants did not like and it was thought that the meeting agenda could be improved via the use of a suggestion box.  One participant suggested the scope of the group was too narrow for the participation of younger people.


Participants’ positive experiences
Positive experiences were by far the biggest area that participants discussed in the focus groups.  The survey data was consistent with, albeit less detailed, focus group data.  Four themes emerged; relationship, tasks, outcome and transition.  

1.  Relationships
This was the largest theme and consisted of the following sub-themes: friendship; universality; support and altruism; and attitude.

(i) Friendship
Participants articulated a sense of friendship that developed over time. Different types of friendships evolved from friendliness and socialising, to more intimate friendships that provided a sense of companionship and closeness.  
“Just the companionship has been really good.” Claire

(ii) Universality
Yalom (2005) identified universality, the sense that others experience similar problems, as an essential factor in successful groups.  Participants identified universality in a number of ways.  Participants saw themselves as similar because of similar experiences. This appeared to be meaningful for the participants and put them in a position to offer advice to each other.
“Knowledge from people who [are] also facing the same problems” Megan

Similarity, however, was not uniformly endorsed.  One participant stated that they were all different with no two stories being the same.

The experience of universality was related to a sense of being understood by FFG members in contrast to experiences outside the group where they were not understood outside. This shared understanding meant participants did not need to explain themselves.   
“they [group members] instinctively know without me saying anything. They were there and they could see it on my face because they have been there and done that.” Claire  

“they [people who don’t care for a person with a mental illness] don’t know what it is like so they could think, oh well, you know, surely they could make him have a bath or do something.” Megan

(iii) Support and altruism
Participants valued the support they received from the FFG members.  Support was given in a variety of ways including being comforted, reassured, validated, listened to, provided with information and through social contact.   
“at least they [group members] were there to stick an arm around you and say ‘oh, never mind, this sort of thing, these things happen to all of us’.  That was really reassuring.” Claire

In addition to receiving support, participants also valued giving support, empathy, information and advice.  
“But I think that people can help each other and that’s …a big achievement.” Anne

    (iv) Attitude
Participants talked about the non-judgemental attitudes of FFG members contributing to a positive experience.  Like the experience of being understood, this non-judgemental attitude in the group was in contrast with the stigma experienced outside of the group.   Humour was also viewed as a helpful aspect, helping with creating relationships and enhancing coping. Participants also valued the positive attitude of the facilitator.
“So you can look back at what they have done and laugh and not be so bogged down in the seriousness of the illness.” Megan

2.  Tasks: what the group worked on.
In addition to the importance of relationships in the FFG, participants also emphasised the tasks that the group engaged in.  Three types of tasks, detailed below, were mentioned.

(i) Working with the system
Making changes to both the CCU and the mental health system was a valued aspect of the FFG.  Making such changes was seen as a way to improve participants’ own situation.
    “making their [ill-relatives] lives easier was making our lives easier” Anne

Part of this advocacy included working out what could be changed and trying to get funding for other projects.
“It is not exactly changing the system, it’s more like getting funding for projects; as far as changing the system you haven’t got a bloody hope.” Megan.

(ii) Educational and social activities
The participants talked about the activities that they enjoyed in the FFG, this included having invited speakers, attending a psychoeducational course for carers, attending information sessions and going out for lunch.   

(iii) Working with emotions and caring for self
There were a number of ways the group addressed feelings.  These included distraction, telling stories about one’s experiences, discussion and validation of the need for self-care, exploring self-blame, and talking about or venting feelings.
“You can just you know, forget how serious it is for you know, an hour or so.” Megan

3.  Outcomes of participation in the FFG
(i) Improvements in emotional health
There were a number of positive effects that attending the group had on participants’ emotional health.  These included a sense of increased positive feelings, self-worth, motivation, acceptance of the situation, encouragement and hope.
        “I feel a lot better… [about] myself now” survey 8        

(ii) Increase in self-efficacy
Some participants also experienced an increase in their confidence to do something about their situation and assert themselves.
“It [FFG] has given me the strength to say that… it’s my decision, so I am getting strength to stand on my convictions on things.” Rachael
“It [the FFG] allows you to approach your own circumstances from a totally different perspective. For example, from feeling a victim to being a victor.” survey 2

(iii) Increased knowledge
Participants gained knowledge through attending the group, including an understanding of how to cope with their ill-relative’s behaviour and the mental health system.  Learning occurred through their interactions with each other and also the speakers invited to the group.  Participants also found that there was a ceiling to the amount of knowledge that can be usefully acquired.
“[you get] a lot of knowledge because it was the first time that our son had been not at home and [there were] a lot of things he was doing which weren’t… that good. Other people had the same experiences so they could give me knowledge on how to cope with it.  It wasn’t easy but I could, you know, I got a lot from one lady who, you know, she just said look, you know, this is, try this, try that, and I was, you know, it was really good” Megan  
“I mean there is only so much knowledge you can actually store up there and use.  Claire

 4. Transition
A number of participants talked about the stages that they went through from a ‘beginner’ FFG member to an ‘experienced’ group member.  When they began the group they sought information and strategies to cope with their situation, after this they focused on helping themselves and talking about their own experience.  Finally, they attended the group in order to help others and pass on information to them.  
“I kind of found it was like a transition stage. Started off in stage one when I first got involved for information I’d like to grasp on how I could help my son;  two, I learnt that I needed to help myself talking about; and three it was also talking about I had valuable information that I could help others with” Claire

Discussion
Transitions
One of the features of this research was the transition participants made throughout their involvement in the group.  This transition is evident in two ways.  First, the reasons participants first attended the groups differed to the reasons for their ongoing attendance.    For instance, regardless of the FFG being set up specifically for carers needs, participants’ initial reasons to attend were focused on the improvement of the ‘ill-relative’. They were seeking strategies and knowledge that would assist them with this goal.  It can be argued that the mental health system is patient-focused (Furlong & Leggatt, 1996), and that carers, and perhaps especially parents, see themselves in a role of looking after the ill-relative.  In these contexts it is understandable that the participants would initially attend a group with a motivation to learn better ways of looking after the ill-relative, regardless of the groups stated focus on carers’ needs.  Over time, in addition to this focus on strategies to improve the “ill-relative’s” symptoms and / or functioning, participants also began to focus on themselves and their needs for social connectedness, respite and giving and receiving support.  Whilst forming relationships with similar others was an initial reason for attending, after some time in the group, participants also valued providing support to others.  Importantly, these latter needs did not seem to replace the need for knowledge and strategies as participants continued to value the gaining of knowledge through attending short-term education courses and listening to speakers.  Thus, the focus on caring for self and supporting other group members, was in addition to carers focus on their ill-relatives needs.  

A second type of transition was mentioned by participants; the transition from a beginner to an experienced group member.  Whereby experienced group members were able to pass on information to others.  This transition suggests that over time while attending the support group participants became more confident in their own expertise and capability to develop strategies or solutions.  

Taken together, these results are consistent with findings from those of previous research.  Reay-Young (2001), reviewed qualitative studies of carer support groups and identified that carers’ needs change over time.  Initially carers require information on mental illness and treatment and how to cope with their ill-relatives behaviour.  Following this carers begin to address their own emotions and share their experiences with similar others.  Finally, carers may want to help others in similar situations and focus on advocacy and lobbying.  Interestingly, Reay-Young (2001) identifies carers’ needs changing depending on the length of time in a caring role.  In our findings participants identified their needs changing depending on length of time attending the support group.   This might be because previous research has mainly focused on short-term support groups whereas the family and friends group was open ended.  How the length of time as a carer, or length of time in a support group corresponds to the changing needs of carers is an interesting area for future research.    

Relationships
It has already been noted that after some time participants were motivated to attend the group due to the relationships with other group members where they were understood, were not judged, could identify with each other and created friendships.  In these relationships they could both give and receive support.   Similar factors were mentioned when participants were asked about their positive experiences of the group.  Specifically, participants identified the relationships in the group created a sense of friendship, universality, support, altruism and acceptance.   Such factors can be thought of in terms of group cohesion; that is, the therapeutic relationship created between group members and leaders (Burlingame, Fuhriman, & Johnson, 2002).  Given that cohesion is commonly valued among participants in psychotherapy groups (Burlingame et al., 2002), and those attending support groups for carers of people with mental illness (Chou et al., 2002; Citron et al., 1999; Van Hammond & Deans, 1995; Winefield et al., 1998) it is no surprise that it was also a theme discussed amongst the participants in this focus group.  Cohesion is an important aspect of groups as it relates to positive therapeutic outcomes and helpful therapeutic processes (Burlingame et al., 2002).   

Barriers
Some carers were prevented from attending the FFG.  It may be argued that participants who were most vulnerable had greater barriers to attending the group; that is they were without transport, had poor personal health, their ill-relative limits their access to services, the ill-relative was living in the community (and assumedly requiring more support), and the participant had limited time due to caring commitments.  Such barriers to the participation in family psychoeducational interventions (Sherman & Carothers, 2005; Tarrier, 1991) and support groups (Heller, Roccoforte, & Cook, 1997) have been identified elsewhere.  These vulnerabilities suggest the participant had high needs for support, yet it was these same vulnerabilities which served as barriers to attending the group thus limiting opportunities for enhancing coping and compounding the burden.   

Negative experiences
Participants valued pursuing tasks to make changes at the CCU.  However, participants reported that often their efforts did not pay off and led to a sense of disappointment.  Further research is needed to understand the impact of such disappointment. It is possible that thwarted attempts at change decreased participants’ sense of power or confidence in their ability to lobby and advocate.  Advocacy and lobbying has been identified as one of the functions of support groups (Reay-Young, 2001).  In order to enhance this function perhaps support group facilitators need to encourage participants to take on realistic and achievable advocacy goals to increase chances of success, bolstering confidence and motivation for further advocacy.  

Participants mentioned other limitations of the FFG.  These were that the meeting was unsuitable for younger people and some activities were not personally relevant.  Similar to other research (e.g. Reay-Young, 2001) some participants found it difficult to listen to sad stories, which was a disincentive to continued attendance.  This suggests that support group facilitators need to be particularly careful in creating a safe and containing environment to enable a helpful discussion of personal stories.   

Limitations and Conclusions
There are several limitations of this study to be taken into account when interpreting these results.  The sample was small, limiting the breath of experiences identified.  Furthermore, the comments made by participants in the survey and the focus group were most often brief without detailed descriptions of the phenomenon they were describing.  Finally, the surveys and focus groups were conducted simultaneously, in retrospect it may have been beneficial to use the focus group results to design a more targeted and detailed survey to explore themes emerging from the focus group data.    

In conclusion, these results are consistent with those reported by other researchers in this field (Chou et al., 2002; Citron et al., 1999; Pickett-Schenk et al., 2000; Winefield et al., 1998).  Taken together, this and other similar qualitative and quantitative studies provide evidence of the effectiveness of support groups for carers of people with a mental illness.  

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