majority of treatments available for individuals with bipolar disorder/
schizoaffective disorder revolve around antipsychotic medication
(Emilien, et al., 2007).
Psychological impairments such as
medication adherence, insight into illness, recognising early signs of
relapse and coping mechanisms are not targeted by pharmacological
interventions (Beynon, et al., 2008; Ghaemi, et al., 2004; Scott, 2001;
Soares-Weiser, et al., 2007). However psychosocial interventions
combined with pharmacological interventions empower an individual to
become more involved in the management of their illness, leading to an
improvement in their overall quality of life (Beynon, et al., 2008;
Soares-Weiser, et al., 2007). In conjunction with this Emilien, Septien
et al., (2007) citing research (Miklowitz, et al., 2003) found that
psychosocial interventions such as CBT, family therapy and/or group
interventions decrease the risk of relapse in individuals with bipolar
As with other groups of
clients with chronic illnesses, clients with mental illness report a
need for peer support groups to share experiences. With negative
impacts on social life a significant factor in mental illness, this
need for group interventions is becoming more apparent (Castelin, et
al., 2010). Group based interventions enable members to share their
experiences, learn from each other, gain new coping strategies, feel
understood, realise they are not alone, reduce stigma, regain a sense
of control and power, and establish more positive senses of identity
and self-esteem (Downs, 2001; Meddings, 1998; Romme, Honig, Noorthoorn,
& Escher, 1992). In addition the NICE guidelines (2006) state
that clients, their family and carers should be encouraged to attend
self-help and support groups as they may give information on
early warning signs, types of treatment and side effects, and
also provide support during crisis points.
Service User Involvement
user involvement occurs “when service users are meaningfully involved
in decision making regarding their health, social care and treatment,
and in the planning and delivery of healthcare services” (Health
Service Executive, 2010; McEvoy, et al., 2008). It stems from the view
that service users are the experts, rather than professionals in
individual experiences of mental illness and the mental health services
they are offered (National Institute for Mental Health in England
(NIMHE). 2003; Svennevig, 2004). Service provider’s opinions and
priorities are significantly different from those expressed by service
users. (Svennevig, 2004). Barnes and Bowl (2001) gave an account
of factors of importance for service users which include financial and
relationship stability, and employment, while for service providers
integration of services and management styles are of priority
Hostick (1998) found that when giving the
client a voice an “ideal service” became apparent. The main components
of which consist of user/carer involvement in planning and monitoring
services for all user groups, in addition to being provided a detailed
health directory, clear and concise information of medical
interventions, and availability of essential information via a
newsletter (Hostick, 1998).
In conjunction with this NICE state
that individuals with a diagnosis of bipolar disorder should be
involved in making decisions about their care and treatment (National
Institute for Health and Clinical Excellence, 2006). The NICE
guidelines recommend that interventions for people with bipolar
disorder should take into account their needs and preferences. In
addition to this the Department of Health (DOH; 1994) have developed a
report based on guidelines on a collaborative relationship between
clients, mental health professionals and families in relation to an
individual’s care plan, while also stating that the main focus for
mental health nurses should be the person with a diagnosis of a mental
A move toward a recovery focus and increased
service-user involvement in Ireland has been also proposed by A Vision
For Change (Department of Health, 2006). Recommendations include
service users being partners in their own care in addition to care
plans being individual to each person and reflective of their needs and
goals (Department of Health, 2006).
The process of recovery
involves more than working with mental health services (Coleman, 1999;
Wolfson, et al., 2009). Working together with other service users
allows individuals to reach a maximum potential for recovery. Capturing
the direct experience of a service user, and allowing them to take part
identifying areas of need in services epitomises service user
involvement (Wolfson, et al., 2009).
Service user involvement
in the design stage of research is an innovative approach to gaining a
more insightful knowledge of the field in mental health. Ramon (2000)
also reported that this process leads to a greater understanding of lay
perceptions of research in addition to a greater understanding of the
lives of individuals with mental health difficulties (Faulkner, 2012).
Actively involving service users in the research process is
inclusiveness and plays a role in reducing the impact of stigmatisation
on individuals with mental health difficulties.
It has also been
highlighted that an awareness of service user needs is essential for an
effective service provision as their views may differ from what service
providers perceive as important (Meddings, et al., 2011).
studies such as Meddings, et al., (2011) have evaluated service user
involvement and evaluation in hearing voices groups; however to date
research among service user involvement in individuals with bipolar
disorder/schizoaffective disorder is limited.
study worked in partnership with service users in the development,
piloting and evaluation of a skills based group for individuals with
bipolar disorder/schizoaffective disorder.
current study led to the development of a new group-based intervention
to address the skills deficits associated with bipolar disorder.
Initially there was a qualitative component to the study, which was
aimed at designing a skills-based intervention. The second part of the
study was a pilot evaluation of the research.
participants (n = 13; male = 7, female = 6) were all MDT members on two
Community Adult Mental Health Teams. Several distinct professions were
represented in the sample, with three psychologists, two psychiatrists,
one social worker, one occupational therapist, three community
psychiatric nurses, and three home-base treatment nurses agreeing to
partake in the research.
13 client participants completed the study. Initially there were 22
individuals with a DSM-IV-TR diagnosis of bipolar disorder/
schizoaffective (18 participants = diagnosis of BPD, 4 participants =
diagnosis of schizoaffective disorder), however a number of individuals
dropped out during the course of the study due to various external
reasons. The participants ranged in age from 29 to 68 years (M =
Client Allocation to Groups
were randomly assigned to one of three conditions: design group;
intervention only group; or treatment as usual group. Participants in
the design group (n = 9) were invited to attend a focus group in order
to outline their needs in relation to designing a skills based group
intervention. The intervention was then designed by the researcher and
co- facilitator based on these identified needs. The intervention only
group (n = 7) was also invited to attend a focus group which sought
information about their satisfaction with services. The purpose of the
focus group was to rule out familiarity contributing to group changes
and thus was used only as a control method, which will not be analysed
in the current study. Participants in the design group and intervention
only group were then invited to partake in the programme in their local
mental health service as an adjunct to their current treatment.
Participants in treatment as usual group (n = 6) were offered the
intervention pending outcomes from the study.
one consisted of a qualitative component comprising of separate focus
groups with staff members and the key stakeholders (i.e. the clients)
in order to design the main components of the intervention.
first phase of the study employed an exploratory design and consisted
of four semi- structured focus groups. The first two focus groups were
conducted with MDT staff members with a view to isolating dialogues
regarding members’ experiences of working with the skills deficits
associated with bipolar disorder/schizoaffective disorder.
further focus groups were conducted with client participants (Design
Group) in order to ascertain their needs and wishes in relation to
receiving a skills based intervention. Based on the outcome of this
initial focus group, it was decided to offer an additional focus group
to the same participants.
The data from all four focus groups
were analysed using thematic analysis (Braun & Clarke, 2006), which
is a method for identifying, categorising, analysing, and reporting
themes within qualitative data (Braun & Clarke, 2006).
aim of this phase was to use the theoretical base and client needs as
identified in the development phase to design the intervention and
conduct a pilot study to test the procedure.
Design of the Intervention
intervention was designed and conducted by the researcher and a senior
clinical psychologist in a Community Adult Mental Health Service. The
modules were based around client needs as identified through the
planning focus groups conducted with the design group. The materials
used for the interventions were collated from a number of sources
specializing in the area of each module. As identified by clients in
the design group during the planning focus groups, the group structure
was a mixture of didactic and experiential learning, in addition to
receiving handouts. Homework practice was also optional to individual
clients as identified during the focus groups.
Stages of the Intervention
six session intervention combined the theoretical basis from the
literature reviews with the qualitative work from the focus groups. The
components of the intervention were based on participant needs
identified from two previous focus groups and materials used were
predesigned from previous interventions. The intervention was delivered
over six weeks, in two separate outpatient settings to accommodate
clients from different geographical locations. Each session was two
hours and 15 minutes in duration, with a 15 minute break halfway during
session in the form of a focus group was held in both locations on the
seventh week. The purpose of the session was to verbally receive
client’s evaluations of the programme. The focus groups were audio
recorded and transcribed verbatim. The content was analysed using
thematic analysis as outlined previously by Braun and Clarke (2006). A
manual based on the exercises of the six sessions was also produced and
provided to participants at the feedback session for reflection and
learning beyond the programme.
Focus Groups with MDT Members
main themes emerged from analysis of the focus groups: The first theme
was the skills deficits associated with individuals, with the second
theme addressing the impact of these deficits on daily lives. The third
theme to emerge was the strategies that work to help individuals with
these deficits, with the final theme capturing what resources MDT
members feel that these individuals are needed to help them manage
their illness more efficiently. A number of subthemes also emerged from
both MDT groups expressed concern in numerous areas of skills deficits
associated with bipolar disorder. Difficulties with insight,
acceptance, motivation and impulsivity were reported across both
groups, while participants also reported that during depressive phases,
persons with bipolar disorder particularly portrayed low
self-confidence, self-esteem and anxiety.
across both groups reported that lack of insight was extremely
predominant in individuals with bipolar disorder. They reported that
insight was imperative to overall engagement with services and
acceptance of a diagnosis. One participant noted
“I think the
first thing is, you know, the diagnosis itself, the understanding of
bipolar affective disorder and what it’s all about, ......he or she has
been diagnosed with this disorder but most of the clients would be seen
at the OPD (Out-patient Department), they don’t even know their
diagnosis is bipolar, they don’t know, they just ask them do they need,
to be given medication.”
reported that acceptance was linked to insight and individuals who were
accepting of the life-long consequences of their illness were more
likely to have greater insight into their illness. One participant
captured this through the following statement
“You have the
people who have partial or total insight, they will still have to come
to an adjustment or an acceptance of having potentially a lifelong or a
Another participant elaborated on the above and reported
Participants reported that a lack of motivation was evident in particular during depressive phases with one participant noting
“the depressive phase probably brings up a whole other set of problems ... around motivation.”
Participants described how impulsive acts impact on an individual’s quality of judgement. One participant reported
of the impulsivity or the impulsive, so that’s why they would go into
drugs and alcohol over-opportunistic ideas and grandiosity or, you
know, there’s being impulsive so, and that’s actually, they don’t have,
you know, the judgemental swing in appearance, they kind of, they can’t
sort of manage their impulsivity.”
reported that during the depressive phase issues with confidence and
self-esteem were likely to emerge more so than in a manic phase.
One participant reported
depressive phase probably brings up a whole other set of problems, you
know, around motivation and confidence, help seeking behaviour, you
know, if somebody is significantly depressed... that they would seek
help or to even attend work, or attend to relationships and often
impaired concentration and stressed.”
with self-esteem were identified as a component of depressive episodes
and also during periods of stability. One participant reported
“usually somebody who is in a depressive phrase, they have low self-esteem.”
also reported that anxiety was related to issues with confidence, which
in turn impacted on an individual’s social functioning.
and avoidance, I suppose there would be a fair amount of that. People
lose their confidence in themselves so they don’t kind of engage in the
things they would have before and they don’t, sometimes they don’t
manage their anxiety very well.”
Impact on Daily Lives
participants reported that deficits in bipolar disorder have a
significant impact on an individual’s daily functioning. They reported
that clients have a tendency to become socially isolated as a result of
their deficits and community stigmatisation. They also reported that
difficulties with insight can lead to readmissions and maladaptive
anxiety management techniques include avoidant strategies.
linked social isolation to feeling stigmatised by members of society as
a result of people being unwell in the community. One participant noted
“I’d say with some
people too, like, locally here, it’s kind of still a bit stigmatised,
that if they are diagnosed, they have to present to the site of the
psychiatric hospital or they may be admitted, either voluntarily or
involuntarily .....that suddenly they are doing their own thing
insightless, not aware of the diagnosis and the next thing, they may be
made associations between an individual’s level of insight and number
of admissions. One participant reflected the following
would see them being admitted again two or three times, some, you know,
sectioned, and the penny still doesn’t drop sometimes.”
the focus groups, a number of common themes around strategies that were
successful when working with individuals with bipolar disorder were
identified. These include psychoeducation on the illness and symptoms
and psychosocial interventions including anxiety management, problem
solving approaches and support groups.
Psychoeducation was seen as one of the most prevalent strategies used across the service.
important I mean that they have a real level of understanding about the
condition and what the diagnosis means to them and how they can maybe
process or formulate it in their mind or you know.”
varied across professional groups, with one common theme; they were a
vital element of the service for individuals with bipolar disorder. One
participant summarised this
“Certainly people who adhere to certain psychosocial interventions seem to have better outcomes.”
relation to resources that would assist individuals in managing their
difficulties, participants reported that peer support and group
interventions in addition to formalised psychoeducation would be
beneficial. In relation to interventions the participants also
identified the therapeutic relationship as being a significant element
in contributing to change.
support was identified through group interventions, with participants
reporting a willingness from clients to take advice from others in
similar positions. One MDT member reported
“it’s much easier to accept it from someone else who has been through it than it is from professionals.”
identified a need to formalise their daily interactions with clients,
in particular when giving them information around their illness
always an argument for formalising what we do informally, like a lot of
what I discussed, we do informally, you know, there is no actual
template you know, and maybe that’s what they are looking towards, say,
in coping with that group of patients, but maybe something more
formalised around the psycho-education and the materials used that can
Group interventions were described as being of benefit to service users. One MDT member reported
other thing, probably within groups, with people particularly with
bipolar particularly .....I run anxiety groups myself, like there is
value in that as well. .....then I think that people would find it very
A positive therapeutic relationship was identified as being crucial to client engagement in services among all MDT member
nearly an age-old cliché, the therapeutic relationship is hugely
important and I suppose there’s always sorts of angles on the
therapeutic relationship but it’s a kind of an unestablished one –
without any meaningful relationship, no meaningful therapy can take
Planning Focus Groups
themes which emerged from the analysis of the planning focus groups are
described in this section. They are organised into four parts.
Firstly, the participants’ views towards being part of the design phase
are described. Secondly themes related to stigma of having a mental
illness are discussed. The themes related to the content of the group
reported, which are divided into eight subsections and integrated into
how the skills groups were designed are discussed in the third section.
Lastly the practical aspects of the group design are explored briefly.
Views towards Being Involved in the Design Stage
reported that being involved in the design phase of the intervention
was a progressive and innovative initiative. They viewed this as being
a vital part of service integration with one participant noting
think it’s a very fundamental part for me ...it’s the fact that we’re
designing it ourselves ... with the professional backup as well”.
A Positive Step
also reported that they felt being involved so early on in the design
process was a positive aspect which would be beneficial to all parties
concerned, as learning from others in similar situations is often the
best experience for developing an awareness of symptoms and management
strategies One participant in particular noted
We’re the ones who have the answers I think in many ways...I have
learnt a lot myself, this is really what I would love to do, you know,
in, ... I’d love to actually help people ... it’s like a step towards
it because I do know I have a lot of stuff to contribute”.
were excited about the idea of belonging to a group where members
shared an aspect of their identity. They attributed it to having a
unique insight that professionals were not able to gain and identified
it as something that has been lacking nationally. Participants were
eager for the group to become permanent with one individual reporting
feel that what’s important for me in this group here is that I’m
meeting other people of similar ... like as such, and I think just the
chance to express my feelings or my thoughts about this is very
important, ... talking to somebody that actually understands what I am
going through rather than talking to a brother or a sister or a friend
that doesn’t understand the feelings and I think that’s why this group
for me is very important.”
second theme that was identified in the data relates to the concept of
stigma. Participants also spoke of the stigma attached to having a
mental illness and its effect on their relationships with others.
think we ought to... acknowledge that there is still a stigma attached
to mental illness, although the stigma is decreasing.”
Content of the Group Intervention
overall aim of the initial focus group was to seek information from
participant about what skills they wanted to learn in a group
intervention. To gain this information, clients were invited to
participate in a second focus group and were asked about their
experiences of living with the difficulties of bipolar
disorder/schizoaffective disorder. Main themes were identified in the
participant narratives, each of which will now be discussed in turn.
Finding my Identity
Who am I and what is my Illness?
spoke about wanting to be distinguished as a person first and foremost,
rather than being identified as an illness. One participant noted
me, it’s coming to terms with the illness and then finding the
confidence to be able to say that’s the illness, that it’s not me”,
while another agreed with this sentiment, stating a factor of
importance was “ recognising your own mind and whether you need help or
whether you can cope on your own.”
was identified as a key skill which participants wished to develop
during the intervention. There were a number of components to
identifying assertiveness as a skill in need of development. In
particular, a difficulty that became apparent was the participants need
to trust their own experience especially when it comes to speaking to
doctors about their medication. Another element of the assertiveness
skill was that participants reported a need to find their voice, and
gain confidence when speaking to others in particular professionals In
relation to identifying assertiveness as a module of need during the
intervention, one participant reported that assertiveness was a deficit
among individuals with bipolar disorder which leads to other
difficulties with managing their illness
think a lot of things come under it and assertiveness with your
psychiatrist, assertiveness with people throughout the day that you
meet in your work and your relationship, I think that’s a huge problem
in bipolar is that you don’t deal with issues as they come and they
build up and then it drives you into a high.”
Finding my Voice
particular difficulty which was apparent among participants was their
need to be able to trust themselves and find their voice in particular
when speaking to professionals about the treatment they were receiving.
Participants identified feelings of intimidation over having a mental
illness and one participant noted
get there’s an issue with psychiatry and mental illness for a lot of
people, and psychiatry can be quite intimidating to some people with a
associated identified becoming assertive as a source of empowerment
which would help them manage their illness effectively in conjunction
with professionals. One participant reported
all about us ... being more empowered about our illness and owning our
own illness as opposed to somebody else saying, “You are this, you do
this”, you know, and it’s a kind of a negotiation and not a dictation,
Recognising Triggers and Early Warning Signs
common theme among participants was the need to recognise symptoms of
their illness in order to promote relapse prevention. In addition, a
need to recognise triggers and manage them effectively was
identified. One of the first points in the focus group with
regards to content was made by a participant, who reported
I suppose anybody, people say that anybody who is suffering from any
condition, the first thing is to recognise their own condition, and
when a mood is going high or when it’s going low, and then being, not
being inhibited, or not being afraid to ask for help.”
Side Effects of Medication
were strong around the side effects of medication with one participant
noting “you could cure the illness and kill the patient.”
cravings were a contributor to distress among all participants in the
group who were receiving pharmacological interventions which they
wished to receive help with during the intervention.
“Well, if you could help us on the food cravings, it would be great.”
Wanting an Alternative to Medication
previously reported participants receiving pharmacological
interventions were in distress around its side effects. A common point
made throughout was that participants either wanted to manage their
illness without medication or as little medication as possible.
think the issue of medication seems to be very important to everybody
in here, whether you agree with taking it or if you don’t take it, I
think it’s definitely a huge issue that needs to be discussed a bit
Relationships with Friends and Family
the course of the focus group, participants also identified that family
and friends play a significant role in their lives. Views alternated
between family and friends being affected by episodes of depression and
mania, to friends and family not fully understanding the illness.
Impact on Family and Friends
There was recognition among participants of the impact their illness had on their relationships with others
tough on friends as well, you know, because they don’t have the proper
training ... it’s a big pressure on friends, because I know that I put
my, you know, not deliberately put my friends through a lot with
particularly the highs, but they don’t have any formal training, and
it’s rough on them.”
Lack of Understanding
participants were of the view that friends can sometimes jump to
conclusions and over-identify their personality with their illness. One
participant, for example, reported that
position is that my friends now wouldn’t have known me all my life, ...
It is very difficult, because they’re only getting to know, ...it can
be a con because you feel like saying, “No, I’m not heading for a high,
I’m fine... they’re just picking one point out.”
were eager to identify strategies they used to stay well, in addition
to learning new strategies from each other. Different strategies were
exchanged during the focus group, with one participant giving their
views on the importance of diet
“it’s very important to eat because when you eat you actually slow down your system. Those little things I found for me.”
also gave advice on relaxation skills “Relaxing in the bath is good for
you, isn’t it, it is, and you have the candles and things like that.”
“I would read at night to help me wind down.”
finally, participants identified motivation as a skill they wished to
develop during the intervention. Motivation was linked to being able to
have a structure to the day in addition to being a key skill in
maintaining a state of well-being. One participant reported that an
important factor they would like to acquire from the group as follows
think for me to stay motivated. I’m great when I have structure to my
day but when my structure goes; I find it hard to motivate myself, so I
think skills in that way would help me a lot.”
views were also asked around practical aspects of the skills group,
such as timing, location, length of sessions, and structure of
sessions. As there were two groups running, in two different counties
participant needs were different and there were some constraints to
what the service was able to offer due to other clinical demands.
Overall participants were initially of the view that a non-clinical
setting would be best if the group were to continue, with one
think to encourage people into groups as such and for the future, it’s
to move it away from medical institutions as such ... it’s very clear
everybody around this table is quite sane, do you know, even though
they have an illness, it’s not, we’re not crazy.”
addition, participants outlined their desires in relation to having
other professional input in the group and the use of materials and
homework. An overall feeling emerged of wanting to have a choice of
whether or not to have homework, and wanting a psychiatrist in to
listen to their views, however, there were different agendas in
relation to the aim of having psychiatry input with participants
think it would be good, certainly if they brought in a psychiatrist”
... I think I’d like for them to listen, open their eyes and take on
board, you know, from our perspective as a user.”
Feedback Focus Groups
feedback focus groups were conducted at the end of the six week
intervention in order to provide a qualitative evaluation of the group.
The feedback sessions were held in the same location as the
intervention and thus the focus groups were a mixture of participants
from both the experimental and control conditions. Four main themes and
a number of subthemes emerged from the analysis of the groups.
Evaluation of Group
narratives suggest that their overall view of the group was positive.
Specifically, this favourable evaluation was explored according to
three separate subthemes: the content of the group; participant
attendance rates; and the perceived benefits of the group.
Participants were asked about their feelings around the content of the modules and the materials provided. One member reported
“I liked when you do the actually specific things that you, that you could learn and that you could apply to your life.”
also spoke about the experiential element of the skills training and
the benefits of this practical approach, with one participant reporting
“You weren’t just
getting things off your chest or anything. You know, you were actually
learning something good, so that was very good.”
particular, the participants described the assertiveness module as
being extremely beneficial as they experienced being treated with equal
importance as others and professionals. One participant stated
“I thought the assertiveness was very good, and just you could actually take home something from it.”
Another participant also spoke about the impact of the assertiveness module on his/her self-esteem
think that the module on assertiveness, I think that was good because I
would have a very... feeling of low-worth... and to say they are just
as equal to anyone else on the road.”
relation to the materials provided, participants reported finding them
beneficial and easy to read. One member spoke about the simplicity, yet
effectiveness of the materials, stating
thought that ... the information that was, the information that had
been given out was very useful stuff, ... you could spend a long time
in a bookshop or in a library ... you wouldn’t find it as concise as
that, so I thought that was really, very valuable.”
Another participant shared a similar view, stating
was a lot of quite positive advice given out about practical things
like handouts or something that we could relate to as well and go back
over and revise ourselves.”
spoke about the second module, which discussed practical ways
that clients could recognise early warning signs of relapse. One
participant discussed how she found the traffic light system a
beneficial way of recognising periods of stress, which was an area of
need in her life
traffic lights system, that was really good and knowing your symptoms
and watching out for new symptoms and stuff, that would be something I
would have always, would have loved.”Benefits of the Group
groups spoke about the skills they had developed as a result of the
intervention. Some individuals recognised changes in themselves,
however, were unable to give specific examples. One member captured
this experience nicely, explaining
find it very hard to quantify... something has changed ... I think that
you pick up things without realising it, like, you know.”
participants were able to distinguish particular modules which they
felt were of significant benefit to them. As previously mentioned, the
assertiveness module was a common theme which participants noted as
being particularly beneficial outside of the group. One participant
commented on the effects of learning that everyone has equal rights
during the assertiveness module and explained
view myself a bit differently, just from the point of view that we have
rights and entitlements to feel a certain way, and be a certain way and
act a certain way, and I kind of took that on board a good bit and, you
know, that helps and the assertiveness, ... So I have used that really,
those two things, like, about, say, my rights, that I have as a person,
I think, rights and also that as a person, you know, to be assertive
and not sort of take a backseat.”
also spoke about belonging to a group and sharing experiences with
others who understood or had gone through similar things. One
participant spoke about the motivation that the group gave her to get
up and what the group meant to her
liked coming into the wee group on a Friday morning. It would give you
somewhere to go on a Friday morning, a bit of focus and that, and I
surprised myself that I was able to get out of bed and be in 15 minutes
ahead of myself and I could do it if I really tried.”
Another was more specific of the sense of belonging that was felt as a result of being a member of the group
just thought it was helpful to be sort of in a group with people that
went through it, had some idea of your bad brain or where you were
coming from, you know, that had similar struggles to you and, it’s not
something I have ever experienced before, so that was nice, just to
feel a bit understood.”
positive, participant evaluation of the group was also realistic. For
example, several participants spoke of their awareness that the group
was only a part of their lives for a limited period of time. In
addition, one member discussed an understanding of the need to be
engaged with the group material in order to experience the benefits
expectation at the start, what it was, I know that what works great
with all groups or anything, is the old cliché that applies, that what
you put in something, you get out of it.”
participant agreed with this belief, however, also appreciated that the
group only represented a part in their recovery plan, acknowledging
his/her own role in the maintenance of mental health wellbeing
gained the knowledge that we all have to help ourselves, like, I mean
we can’t rely on the health professionals to solve problems which we
should be solving for ourselves”.
Service User Involvement
were asked about their feelings towards being involved in the design
and implementation of the group. In addition, those participants that
were in the control group were also asked similar questions in an
effort to understand their beliefs about user involvement. Reflecting
these two distinct discussions with both groups, two subthemes were
identified that address the issue of service-user involvement: Being
Involved at the Design Stage; Not Being Involved in the Design Stage,
both of which will be discussed in turn.
Clients’ views of being
involved in the design stage of the intervention were all positive. For
all participants it was a new experience and something they had not
been familiar with. One member reported
had never participated in anything like this before, so I, it was all
new to me, I had no experience of dealing with this thing before... it
worked pretty well.”
Another member offered an
anecdote to which he felt was similar to being involved in the initial
stages of the group design explaining how the more people involved in
the design stage the more comprehensive the intervention
was an old man up our way who used to say that two heads were better
than one, even if they were cabbage heads... if you got more
suggestions ... I could think a lot different than you.”What Next?
was a general feeling of sadness among all participants about the group
ending, with one member simply saying “I feel a bit sad actually” in
relation to ending the six week intervention.
were eager for the group to continue from the initial planning focus
group. Those assigned to the control group also reported during the
feedback session an interest in continuing. For example, one member
“I would love for something to follow on from this.”
participants were all in agreement that they wished for the group to
continue they were unsure in what format. There appeared to be a
general agreement that the groups should continue to have a structure,
with one participant explaining
“I think the focus would be good, ... just to focus on the skills, would be good.”
Finally, participants were keen to contribute to the planning of future groups with one individual stating
“ would need to have the recipients’ input too.”
objective of the current study was to involve service users in the
development, implementation and evaluation of a skills based group for
people with bipolar disorder/schizoaffective disorder.
Evaluation of focus group conducted with MDT members
first phase of the current study was to explore the experiences and
understanding of MDT members of the skills deficits associated with
bipolar disorder/schizoaffective disorder. Overall, analysis of the
focus groups indicated that MDT members were in agreement that skills
deficits were apparent during all stages of illness and had a
significant impact on the outcomes of treatment. Supporting previous
research of Malhi, et al., (2007) and Beynon, et al., (2008) MDT
professionals reported that prominent deficits consisted of
difficulties with insight, social skills and confidence, which they
felt in turn impacted on an individual’s daily functioning and
interactions with others.
One theme which emerged throughout
the analysis was the relationship between insight into illness and
motivation and engagement with treatment services. Insight was defined
by participants as having an understanding of the illness, inclusive of
an awareness of vulnerability during episodes of depression and mania
as well as recognising the need for treatment.
spoke about therapeutic alliance and its importance in assisting
individuals with developing insight, alongside a strong sense of social
support. Suto, Murray, Hale, Amari and Michalak (2010)
emphasised the significance of therapeutic alliance as reported by
clients in their motivation to engage with interventions. In agreements
with Suto, et al., (2010) MDT members reported that interventions were
limited in their effectiveness without a positive therapeutic
Although it is evident in the current study and
the literature (Cerit, et al., 2011; Steffany, Fredman, Jerrold, &
Rosenbaum, 2004) that skills deficits are a prominent feature of both
bipolar disorder and schizoaffective disorder psychosocial
interventions remain secondary to pharmacological interventions in the
treatment of bipolar disorder and schizoaffective disorder (National
Institute for Health and Clinical Excellence, 2006; NCCMH, 2010).
However, despite pharmacological treatments being the first method of
choice among mental health services, it was evident in the current
study that MDT members were aware of the need yet limited availability
of psychosocial interventions.
MDT members also explored the
impacts of psychological and psychosocial difficulties on daily
functioning skills. The main themes emerging were based around social
isolation and the stigma attached to same, avoidance management
strategies and rates of re-admission were also described. As with
previous research (Brohan, et al., 2011) MDT members reported that
rates of stigmatisation remain high in society despite legislation in
place against discriminatory practices (Vázquez, et al., 2011). In
support of previous research (Cerit, et al., 2011; Perlick, et al.,
2001) (2001) MDT members noted that difficulties with stigmatisation
were managed through social isolation and avoidance of social
Rates of re-admission were also noted as a
significant difficulty among MDT members, with associations made
between levels of insight and admission rates. As previously reported
impaired insight was a primary theme among the analysis of group
findings. Braw, et al., (2011) corroborated with this view
reporting that insight was also present among individuals with bipolar
disorder and schizophrenia during periods of stability.
participants also explored their views and experiences of group
interventions for bipolar disorder and schizoaffective disorder. There
was an agreement with the current literature (O’ Connor, et al., 2008)
that clients were more likely to benefit from advice from fellow peers
as opposed to professionals due to power imbalances existing among
professionals and clients. Clients were also reported as feeling a
greater sense of validation and belonging. MDT members were also in
agreement with Suto, et al., (2010) that group interventions allowed
individuals to share experiences and feel more accepted in
society thus leading to a possible reduction in rates of
Tse, Doughty and Briston (2004) also reported
that group interventions are successful in allowing clients to find
support, acceptance and understanding when sharing their personal life
experiences with others who have encountered similar feelings.
Evaluation of planning focus groups conducted with service users
two of the study involved meeting with service users to involve them in
the design of the intervention and gain an understanding of the views
and experiences around service user involvement.
users were initially asked about their views of being involved in the
design stage of the intervention. In support of A Vision for Change
(Department of Health, 2006) guidelines service users initial views
were based on the positivity of being given a forum to voice their
experiences of having mental health difficulties and their experiences
of mental health services to date. As Faulkner (2012) described service
users emphasised the importance of their experiences being not only
heard by professionals but acted on as they have a unique insight into
their mental health difficulties that professionals do not have access
to. They also had an awareness and agreement with the ethos of
service user involvement based on the belief that they were the experts
in the their experiences of mental illness and availability of mental
health services (National Institute for Mental Health in England
(NIMHE). 2003; Svennevig, 2004). With regard to research conducted by
Svennevig (2004), service users also highlighted their differing
opinions in treatment options and effectiveness in comparison to
Although government guidelines (Department
of Health, 2006; National Institute for Health and Clinical Excellence,
2006; NCCMH, 2010) have been established around the necessity of
service user involvement in all stages of service planning, service
users generally acknowledged that the current research was their first
opportunity to becoming actively and meaningfully involved in service
components of the intervention was the main aim of the planning focus
groups. The intervention was based solely on the service user needs and
wishes as defined during the focus groups and relevant materials for
individual sessions were obtained from various sources. The process of
outlining the modules for the intervention occurred over both focus
groups. Initially clients discussed their experience of having a
diagnosis of bipolar disorder/schizoaffective disorder. Similar to
qualitative research conducted by Proudfoot, et al., (2009) who
explored factors associated with a receiving a diagnosis of bipolar
disorder service users highlighted side-effects of medication,
difficulties distinguishing early warning signs from personality
aspects, recognising triggers, experiences of receiving the diagnosis,
stigma, loss of a sense of self, uncertainty about the future, fears of
relapse and lack of assertiveness as areas they needed help with.
Facilitators prepared for the second focus group through encapsulating
the highlighted areas into six modules. The second planning focus group
was based around refining the intervention and ensuring it captured the
areas of need as identified in the previous focus group.
common theme among the services users was an experience of being
misdiagnosed or a significant lapse in time before receiving their
diagnosis. Consistent with this Hirschfield, Lewis and Vornik (2003)
reported that misdiagnosis is a common feature among bipolar disorder.
disorder and schizoaffective disorder have been described as complex
illnesses with a varied course among different individuals, which leads
to a challenge in effective interventions (Emilien, et al., 2007).
Involving clients in the design of the intervention was an effective
method of managing some of these challenges.
An emerging theme
throughout the analysis was wanting to develop a sense of belonging and
to share aspects of identity. In association with Fudge, Wolfe and
McKevitt (2008) service users noted during the initial focus groups
satisfaction of a unique experience of being heard and a forum to share
similar experiences with others, while also feeling listened to by
Service users also used the focus group as a
forum to discuss the stigma they had experienced to date which was in
line with Brohan, et al., (2011) who reported that one in five
individuals have experienced a level of stigma in society. Individuals
noted experiences of being stigmatised by society and hoped the group
would assist in reducing this. They were eager to share experiences of
stigmatisation and were open to seeking advice from each other on ways
to manage it. Despite the focus group being a new experience to the
majority of the participants their interactions during it were
supportive of previous research highlighting the need for group
interventions as a resource for individuals with mental health
difficulties to seek peer support (Castelin, et al., 2010).
Comparison of MDT focus groups to service user focus groups
users were eager to voice their opinions on the content of the group
intervention and described it as a new and innovative experience. To
date the research in service user involvement in designing
interventions is limited. Meddings, et. al., (2011) however
designed a hearing voices group with the aid of a project worker who
had experienced mental health difficulties. The study highlighted the
importance of engaging service users in the consultation process as
their views may differ from professionals. In this regard the current
study found differences in opinions of difficulties associated with
bipolar disorder and schizoaffective disorder between professionals and
service users. Most noticeable professionals were unaware of
difficulties with assertiveness among their client base. In line with
this the research to date (Akiskal, et al., 2006; Stanghellini &
Raballo, 2007) has highlighted an over-assertive role taken on by
individuals with bipolar disorder which is inflated during episodes of
mania. The assertiveness module was highlighted as a significant need
among service users; however it was an area that needed clarification
during the design phase. Service users openly expressed grievances over
not being listened to by the mental health service. There was also
awareness among the group facilitators of service users being able to
state their grievances with the service, however being unable to
articulate them in a meaningful and effective manner. The role of the
second focus group was to clarify areas such as these in order to
provide an intervention that met the service user needs. The concept of
assertiveness was explored during both focus groups and clients agreed
that this was an area of deficit which would allow them to convey their
messages in a meaningful way without violating their own rights or the
rights of others. In the qualitative evaluation of the group
assertiveness was outlined as a major contributor to improvements in
self-esteem and self-efficacy.
In another comparison of the
MDT focus group to the service users, professionals did not appear to
have an awareness of service user’s grievances with professional’s
inability to listen to their needs. A theme of the need for service
user involvement in services did not emerge during the MDT focus
groups, again highlighting the importance of service user involvement.
Evaluation Focus Groups
the evaluation of the intervention was positive from all participants
with individuals describing the content both enjoyable and educational.
Service users particularly valued assertiveness skills to help them
convey messages in a meaningful manner and strategies to recognise when
they are becoming unwell. Services users also reported finding
strategies to cope during a crisis beneficial, and sharing and being
taught strategies by other members which is similar to previous
qualitative findings of Meddings, et al., (2011) who evaluated service
user satisfaction of a hearing voices group and also found that
participants valued other professionals giving talks to the group.
Again mirroring Meddings, et al., (2011), and Wykes, Parr and Landau
(1999) participants had self-reported improvements of self-esteem and
Service users also explored the least
beneficial parts to the intervention. As with previous research
(Meddings, et al., 2011) reported negative aspects of the intervention
were individual to each person. However, unlike Meddings, et al.,
(2011) services users did not report dissatisfaction with the
content of the groups. Instead the location of the groups which was in
a clinical setting and the attendance/dropout rates were reported as
negative aspects by various individuals although these views were not
expressed by all members.
All service users reported that that
they would recommend the group to others, they were also eager for the
group to become a permanent feature of the service. Members emphasised
the importance of sharing experiences with each other, while also
learning something new. One member in particular placed an emphasis on
facilitators needing to encourage future participants to commit to the
group during the initial stages as they may not believe it will benefit
them. Meddings, et al., (2011) also found that group members placed an
emphasis on sticking with the intervention in the beginning stages in
addition to being able to share experiences with peers.
focus groups also highlighted the value service users placed on the
supportive network of the group and its contribution to improved
aspects of psychosocial functioning which is supportive of Yalom and
Leszcz (2005). As Meddings, et al., (2011) reported service users cited
feelings of belonging and de-stigmatising the experience of having
mental health difficulties as a benefit of the group.
Evaluation of Service User Involvement
proportion to previous research service users involved in the design
phase of the intervention reported an increase in self-esteem and
social functioning as well as feeling valued and equal to
professionals (Health Service Executive, 2010; McEvoy, et al.,
2008). The high overall rates of satisfaction with the
intervention are reflective of Hostick (1998) and may be indicative of
giving the service users “a voice” and a forum to not only share their
views but act on them.
Although those not involved in the
design phase reported satisfaction with the content and overall ethos
of the intervention this may have been due to modules selected by their
peer group. Comparison of the MDT focus group to the service user’s
indicated that modules of significance such as assertiveness as noted
by service users may not have been included in the intervention without
their input. This in turn is reflective of previous research
highlighting the unique insight service users have into experiences of
mental health and mental health services (Faulkner, 2012; Service User
Research Group England, 2005).
In terms of service evaluation of
service user involvement a better alignment of the needs of individuals
and society have been outlined which is the basis of service user
involvement (Health Service Executive, 2010; McEvoy, et al., 2008).
Additionally service user involvement increased awareness from the
service providers around the needs of their clients and the overall
efficacy of the intervention. Service users also noted a high rate of
satisfaction around the group facilitators which may be reflective of
their involvement in the design leading to feelings of empowerment
which is consistent with the literature (National Schizophrenia
Fellowship., 1997; Svennevig, 2004).
There were a number of methodological limitations in the present study.
limitation was based on the small sample size of the group. The sample
was also heterogeneous in terms of years since onset, education, etc.
feedback from group participants indicated that service user
involvement and group interventions that promote a forum for sharing
experiences with others can result in improvements in self-esteem,
self-efficacy and assertiveness. Facilitator enthusiasm and the new
experience of service user involvement may also have contributed to
increases in self-esteem and self-efficacy. Empowering individuals to
become more involved in the maintenance of their mental health
difficulties was also noted. Qualitative information indicated that all
participants who completed the intervention found it beneficial and
those assigned to the design group felt valued.
The study also
contributes to the limited research conducted on service user
involvement in service planning in particular in Ireland.
is recommended that future research explores service-user involvement
in a larger sample size in order to effectively analyse changes across
all three assessment periods and to highlight possible changes in
self-esteem and self-efficacy after empowering service-user
involvement. Qualitatively evaluating changes following each stage and
including service users in the selection process of assessment domains
and in analysis of the intervention as recommended by Faulkner (2012)
would also be beneficial. An additional role of including service users
in the facilitation of groups in order to promote peer support and
increase empowerment is also emphasised.
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