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Service-user involvement in forensic mental health careresearch: Areas to consider when developing acollaborative study
DOUGLAS MACINNES1, DOMINIC BEER2, PETER KEEBLE2,
DAVID REES3, & LEON REID2
1Canterbury Christ Church University, Medway, 2Oxleas NHS Foundation Trust, London, and 3South
London and Maudesley NHS Trust, London, UK
AbstractBackground: Although service-users are increasingly involved in the conduct of research in mentalhealth settings, involvement in forensic mental health settings is limited.Aims: This paper looks at the factors perceived by professionals and service-users as important fordeveloping collaborative research in forensic mental health settings.Method: Following a collaborative research project undertaken in three forensic mental health units,the researchers involved in the project (professionals and service-users) reviewed factors perceived asimportant for developing service-user research in secure settings.Results: Three broad themes were identified. The main issues considered within these themes weredetailed.Conclusions: Service-users in forensic mental health settings are able to have full involvement in research.
Keywords: Forensic psychiatry, views/attitudes of consumers, collaborative research
Introduction
There is an increasing emphasis on the role of service-users in the development and
evaluation of services (Telford & Faulkner 2004). In the United Kingdom, the Research
Governance Framework for Health and Social Care (Department of Health, 2001), which
sets out standards for the conduct of health and social care research, proposed the active
involvement of service-users and carers at every stage of research. Spiers, Harney, and
Chilvers (2005) claim services based on evidence arising from collaborative research are
more likely to be acceptable to service-users with Wykes (2003) suggesting the scientific
quality of research is enhanced as service-users make research questions more clinically
meaningful. Hanley et al. (2004) detailed further benefits:
. Prioritizing importance of issues,
. Measuring more than professionally defined outcomes,
. Helping recruit peers to participate,
Correspondence: D. L. MacInnes, Reader in Mental Health, Centre for Health and Social Care Research, Faculty of Health and
Social Care, Canterbury Christ Church University, Medway, Kent CT1 1QU, UK. Tel: þ44 (0)1634 894412.
Fax: þ44 (0)1634 894494. E-mail: [email protected]
The work was carried out at the Bracton Centre, Bracton Lane, Dartford, Kent, DA2 7AF.
Journal of Mental Health,
October 2011; 20(5): 464–472
ISSN 0963-8237 print/ISSN 1360-0567 online � 2011 Informa UK, Ltd.
DOI: 10.3109/09638231003728109
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. Accessing marginalized communities, and
. Helping empower people who use services.
This is reinforced by evidence signifying greater service-user involvement in research is the
top research priority for mental health service-users (Rose, Fleischmann, & Wykes, 2008).
However, service-user involvement in research in forensic mental health settings is limited
(Faulkner, 2007). The authors undertook a collaborative research project with two overall
aims:
. To develop a reliable and valid questionnaire to assess levels of service-user satisfaction
with forensic in-patient services.
. To have active service-user involvement at all parts of the research process.
Brief overview of project
Participants were recruited from three forensic mental health units. Items generated from
focus groups were developed into a 60-item self-report scale (the Forensic Satisfaction
Scale) comprising of six subscales. The scale was administered with a (non-forensic)
satisfaction self-report scale, the Verona Service Satisfaction Scale (VSSS) (Ruggeri et al.,
2000). The results indicate the scale is valid for assessing service-user satisfaction with
forensic mental health in-patient services. A paper examining the development of the scale is
currently being reviewed for publication (MacInnes et al.).
Service-user involvement
The second stated aim was to have service-user involvement at all stages of the research
process. This was able to be achieved. A service-user suggested the initial question to
examine how services gauged service-user satisfaction. The original outline proposal was
developed in conjunction with two service-users while three service-users from two separate
forensic mental health units were part of the research team from the start to completion of
the project. The importance of incorporating service-users as participants and researchers
when developing a measure of service-user satisfaction in a secure setting, has been noted in
other studies (Godin et al., 2007; Wood, Thorpe, Read, Eastwood, & Lindley, 2008). A
review of service-users’ views in secure settings by Coffey (2006) concluded most had a weak
methodology and in studies that clearly described their methods (Wykes & Carroll, 1993;
Morrison, Burnard, & Philips, 1996) the validity of the outcome measures was questionable
due to the lack of service-user involvement in their development.
The team met on average once a fortnight which helped to develop a rapport between
team members (Faulkner, 2007). The regular meetings ensured the professional researchers
were fully aware of the needs and expectations of the service-users and vice versa. It also
allowed ongoing informal discussions to take place between professionals and service-users.
Godin et al. (2007) commented this allows service-users to communicate, learn and act with
professionals in different ways from their ‘‘patient’’ role.
Overview of evaluation
At the end of the project, each member of the team wrote down five areas perceived as
important for developing collaborative working. Similar comments were grouped together.
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Twelve main categories were formally identified and subsequently grouped into three broad
thematic areas; administration, formal collaboration and informal collaboration, with three
categories overlapping the formal and informal collaboration themes. These are detailed in
Figure 1. The themes are the focus of this paper.
Administration
The categories in this area are indicative of the formal administrative tasks required when
developing collaborative work. They need to be in position prior to formal and informal
collaborations taking place.
Access
Faulkner and Morris (2003) note it is difficult gaining access to service-users when
developing collaborative research in secure settings. However, Faulkner (2004) and Lockey
et al. (2004) suggest service-users want to be involved in developing ideas from the
beginning. The principal investigator was already working in two of the units in a research
capacity and had informal access to service-users. Initial meetings helped advance the initial
project outline, discuss the project with service-users and user councils, and work with
service-users to develop a protocol. Informal discussions also allowed the majority of
service-users to be informed of the project and discuss potential involvement. Smith et al.
(2008) state some service-users become professional researchers and less representative of
the service-user population. In this case, informal discussions allowed all service-users to
make an informed choice about being involved in the project (Trevedi & Wykes, 2002) with
all three subsequent service-user members having no previous research experience.
Discussions with service managers regarding service involvement with the project were
held to ensure service agreement prior to formalizing a research protocol. This helped allay
Figure 1. Areas to consider when undertaking collaborative research in forensic mental health settings.
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institutional security concerns that Faulkner and Morris (2003) noted were a major
drawback in developing collaborative projects such as confidential information being passed
on to third parties or contraband being brought on the units.
Payment
Many authors have noted the need for remuneration for the work undertaken (Telford &
Faulkner, 2004) and that payment was not a token gesture (Faulkner, 2004). The costs were
included in the research proposal. They were determined following discussions with Trust
finance departments and service-users to ensure a valid payment was made that did not
affect benefit payments. One area of frustration for service-user members was the problem of
arranging the electronic transfer of money between different institutions.
Staff liaison
Faulkner (2007) noted access and communication problems, even though the project was
endorsed by services. A specified liaison member of staff was identified in each of the
participating sites. Although no description of this role was found in the published literature,
it proved valuable in the conduct of this study, providing a clear line of communication
between research team members and service managers. The role included booking meeting
rooms, providing information to other staff members, helping with transport arrangements,
ensuring access to computing facilities and to ward meetings (to recruit participants).
Arguably, the most important function was providing a link between the different members
of the research team allowing quick and immediate transfer of information. There were
relatively few problems in gaining access and arranging meetings in the two units where the
staff liaison member remained constant throughout the study. In the third unit, different
staff members performed the liaison role and there were more delays in arranging activities.
Service co-operation
The support of the service management allowed the research team access to participants and
supported service-user involvement in the project (Faulkner & Morris, 2004). Faulkner
(2007) found that if co-operation was absent, the research project was severely hampered
through lack of support and lack of engagement between the professionals, service-users and
the forensic service. To facilitate the ongoing support, the staff liaison received regular
updates regarding the progress of the study and this information was passed on to service
managers.
Formal collaboration
These areas are concerned with the formalized programme developed by the research team
to support the implementation of a collaborative approach to research.
Training
Many commentators have supported the need for relevant training to be given to service-
users involved in research (Faulkner, 2004; Hanley et al., 2004) as this positively influences
the quality of the data collected and analysed (Faulkner, 2007; Smith et al., 2008). In this
project, training sessions were developed in research methodology to increase the
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confidence and skills of service-user members of the team. Lockey et al. (2004) suggest
training is more effective when it centres on the specific research tasks of the project. These
sessions focused solely on research activities related to the project with training sessions
timed to occur when knowledge/skills would be required in the study. Therefore, the session
examining the role and conduct of focus groups took place just before the groups took place.
In total, six training sessions took place, each session lasting approximately 5 hours
including breaks for lunch and refreshments. The principal investigator led the training
sessions. The focus of the sessions is detailed in Table I.
Apart from the introductory initial session, each session followed a similar format with a
brief overview of the theoretical concepts underpinning the specific topic followed by a
practical exercise. In session three, the initial part of the session examined the process of
analysing qualitative data with specific reference to focus groups. A focus group transcript
and tape recording from the study was then given out with the exercise concentrated on
analysing the transcript. This helped to identify themes from that group as well as
developing consensus within the team regarding data analysis.
Clarity of involvement
All members of the team should have a clear idea about their involvement in the project
(Hanley et al., 2004). The regular meetings and the training sessions helped team members
understand what was required at each stage of the project and allowed them to make
decisions about their level of involvement. Miller et al. (2006) suggest it allows team
members to identify who does what according to their preferences and aptitude. There have
been suggestions the role should be formalized in a job description (MHNACUK, 2005).
This was not done as it was thought this might restrict choices about individual involvement
at different stages of the project. However, a broad role description was agreed at the start
and detailed in the research protocol. It is, however, recognized that a written job
description formally defines the service-user contribution to the project and can enhance the
value of their contribution to service-users.
Clarity was also helped when the language used in discussions was clear and
understandable (Hanley et al., 2004). This resulted in any clinical or research jargon being
identified and replaced by everyday terms comprehensible to all team members.
Time scale
Telford and Faulkner (2004) note collaborative projects take longer to carry out than
professional only research. An approach advocated by Miller et al. (2006) is that regular
intermissions are built into any study design. This allows for the identification and
alleviation of any pressure points and allocates time to review progress.
Table I. Training sessions.
Session One: Overview of research process
Session Two: Focus groups
Session Three: Analysis of focus group data
Session Four: Development of questionnaires
Session Five: Piloting of questionnaires
Session Six: Questionnaire – Data analysis
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Within this project, the proposal did not take account of the additional time needed. The
team estimated the original time scale should have been extended by at least 50% to
facilitate full service-user participation. Godin et al. (2007) noted service-users in their study
perceived staff as reluctant to engage in open discussion resulting in additional time being
required before all members of the team were able to fully contribute to discussions about
the nature and conduct of the research.
Specific events also delayed a number of research activities. This included meetings
clashing with other service-user activities, serious incidents on wards, and difficulties in
finding adequate meeting rooms. One area perceived as avoidable was arrangements for
individual leave or therapeutic groups clashing with dates for proposed research team
meetings resulting in these being rearranged or cancelled.
Informal collaboration
This area is concerned with the informal approaches undertaken by members of the research
team to enhance the collaborative element of the project.
Flexibility
A flexible approach is required when involving service-users with severe and
enduring mental health problems (Faulkner, 2004) as they usually have limited research
experience so require additional support and training. Mental health problems may also
affect their volition. Faulkner and Morris (2003) reported that a lack of flexibility
from service-users and professionals in a Woman in Special Hospital (WISH)
project contributed to the project being shelved. In their study, Godin et al. (2007)
initially proposed health professional and service-users would analyse the data. However,
it became apparent that service-users found it difficult to focus on the process of
analysis. Consequently, the research team made a pragmatic decision that health
professionals would undertake the thematic analysis with feedback encouraged from
service-users.
During this project, there were occasions individual team members were unable (or
unwilling) to attend meetings. This was acknowledged at the beginning of the project and
agreed that, when this happened, team members would be given ongoing information about
the project and encouraged to have the level of involvement appropriate for them at that
point in time. While some members had brief periods of non-involvement in the project, all
of the research team remained aware of developments, and stayed as members of the team
for the duration.
Equality
Faulkner and Morris (2003) proposed there should be equality within the team for
any collaborative project to function properly while Rose (2003) noted the importance of
avoiding token service-user involvement through having an equal status in the research
team. It was agreed from the outset that each team member would have an equal say in
the conduct of the research. Disagreements were resolved through initially discussing
divergent views. If required, the team would vote on the issue with a simple majority
view holding. The research team contained three service-users as opposed to two health
professionals with the consequent potential for the professionals to be consistently
outvoted. Faulkner (2007) suggests this can redress the power imbalance associated with
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being a service-user. The need to take a vote happened infrequently with differences in
views not split along professional–service-user lines.
Overlapping categories between formal and informal collaboration
These categories could be included in either the formal or informal collaboration areas
depending on the circumstances at the time.
Information and support
Service-users involved in collaborative research require information and support to fully take
part in and influence the conduct of the study (Smith et al., 2008; Telford et al., 2004). The
NIMHE report on user involvement (2004) concluded there was a widespread lack of
information for service-users about becoming involved in collaborative research. Godin
et al. (2007) found the quality of staff/service-user communication was often perceived by
service-users as a way of distinguishing between good and bad services. A number of authors
have detailed methods of assisting service-users when conducting collaborative research
(Faulkner & Morris, 2003; Trivedi & Wykes, 2002) and these were applied when developing
support measures for service-users.
Faulkner (2004) stressed the importance of providing support encompassing emotional,
practical and research-based issues. Regular fortnightly meetings were held between the
service-user members and the principal investigator. Meetings were held with service-users
individually and in groups with a mixture of formal and informal meetings. This ensured the
team had up-to-date and accurate information about the project and provided an
opportunity for concerns to be raised. This was important as Rose (2003) noted service-
users’ ability to work effectively is increased if they are confident in their support networks
within the project. Hanley et al. (2004) noted having at least two service-users in the project
team is important as this allows users to support each other and the inclusion of three
service-users as part of the team helped develop peer support. Emotional support was in
evidence when user members discussed their anxiety about the skills required to conduct a
focus group. This was initially discussed in a group setting with specific individual concerns
then discussed on a one-to-one basis with the principal investigator. The process allowed
service-users to express their concerns and for support and advice to be given.
Practical support is required to ensure service-users can attend research meetings
(Hanley et al., 2004). Frequent team meetings meant transport arrangements had to be
in place to allow team members to travel away from their normal base. This was usually
provided through either the staff liaison person or nominated member of staff driving the
service-users to and from the meeting. The support of both the liaison staff member and
the service were needed to co-ordinate the transport to meetings and provide escorts.
Hanley et al. (2004) advise that scheduling meetings at a convenient time and place is
beneficial in reducing practical problems. Scheduling was undertaken when all of the
team were present to try and further reduce these difficulties.
Confidentiality
Faulkner and Morris (2003) noted some professionals concerns about confidentiality when
service-users were part of the research team. At the start of the project, the team discussed
the importance of not disclosing sensitive information. In addition, all the study participants
were informed that any information presented would remain confidential. There was no
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evidence of information being disclosed outside of the research meetings. It is difficult to be
definitive about the effect of service-user involvement on the project. However, the service-
user members of the team reported back that in informal discussions, the respondents stated
they had given open and honest opinions about the service. It appears service-user
involvement did not compromise the confidentiality of the information provided or the
quality of the data. However, it is acknowledged this could be problematic when more
sensitive information is being sought and worthwhile to judge issues regarding
confidentiality on a project-by-project basis.
Dissemination
Allam et al. (2004) note dissemination of the results is widely welcomed by service-users as
it indicates the research has value. It was agreed at the beginning of this project that all five
members of the research team would agree the content and be credited for all outputs arising
from the project. Godin et al.’s (2007) dissemination strategy involved service-user
presentations at conferences and being named in the final report though publications in
professional journals only included the names of health professionals. Faulkner (2007)
noted one collaborative research team perceived an unduly negative peer review had
curtailed dissemination of the findings. Team members with experience of peer reviews may
ensure constructive responses to reviewers’ comments.
Conclusion
The three themes identified (and 12 categories) helped develop a good collaborative
relationship. Both professional and service-users acknowledged the benefits of working
collaboratively allowing the project to focus on relevant areas to both groups and enhance
the validity of the findings.
Rose (2003) detailed two questions for deciding upon the degree of service-user
involvement; first, the degree of control or power sharing in operation and second, the stage
within the research process at which involvement takes place. In this project, every member
of the research team had an equal voice in the development of the project while service-user
involvement took place at every stage of the research process from developing the questions
through to dissemination of the results. This would suggest the service-user members had a
genuine and full involvement in this project and that the team worked collaboratively. It
supports Simpson and House’s (2003) view that service-users with severe and enduring
mental health problems can contribute effectively to research projects in areas with inherent
difficulties for collaborative research, such as forensic mental health care.
Funding: The original study was supported by a grant from the National Forensic Mental
Health Research and Development Programme. Grant Number: MRD 12/51.
Declaration of interest: The authors report no conflict of interest. The authors alone are
responsible for the content and writing of the paper.
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