Why participants attended the Family and Friends group
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
“We were interested in finding out all the ways to look after our son
carefully and provide [him with] relief from his suffering”
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
“To exchange experiences with others in similar situations and to gain
understanding” survey 7
Ongoing reasons to attend
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
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
“[son] is really unwell and I don’t like leaving him
for too long, so it makes it a bit
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.
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
“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”
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.
This was the largest theme and consisted of the following sub-themes:
friendship; universality; support and altruism; and attitude.
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
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
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
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
(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
(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
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
“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
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.
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).
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
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.