The research governance framework for health and social care developed by the Department of Health in 2001 was the first government document in Europe to recommend the active involvement of service users and carers at every stage of research. Indeed, it is now a requirement of UK research funding applications to demonstrate how service users will be involved at each stage of the research.
Since then, service users of health services have been increasingly encouraged to become actively involved in the research process, by engaging with research being carried out “’with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.” (INVOLVE, 2012). Patients or members of the public are invited to assist with all stages of the research cycle from helping to prioritise research topics all the way through to the dissemination of findings. Involvement in research tends to fall into one of three categories (Sainsbury Centre, 2008):
- User-led research
In the world of mental health research, several guidance and evaluation documents have been published which focus on how to ensure service user research is conducted in the best manner (e.g. MHRN guidelines and SURGE guidelines). Indeed, organisations such as The McPin Foundation exist solely to champion the benefits of placing lived experience at the heart of mental health research.
Despite this positive response to the involvement of patients or members of the public in research, a similar transformation has yet to be seen in the world of forensic service research. For instance, there is (as yet) no general guidance on how to involve service users in forensic research nor is there any evidence synthesis of the extent of service user involvement in research in forensic settings.
The aim of this current paper is therefore:
To summarise what is currently known on the topic of involving or engaging forensic service users in the research process and to make appropriate recommendations.
This aim was itself developed following consultation with a carer and a service user reference group.
Involvement and engagement
It is important to note that the terms involvement and engagement are not always used consistently in relation to service user research.
- Involvement has been defined as members of the public becoming involved in research projects to aid with the research process including the identification of research priorities, to comment as part of a steering group or to undertake interviews with research participants.
- Engagement, by comparison, is sometimes seen as relating only to situations where information about research is provided and disseminated (INVOLVE, 2012).
In the current paper, involvement and engagement are not differentiated due to the scope of the paper which encompasses both aspects and also due to their interchangeable use elsewhere in the literature.
This paper uses a rapid review to synthesise the available evidence on the involvement of service user researchers in forensic settings. In a rapid review, components of the systematic review process are simplified or omitted to produce information in a short period of time.
The search strategy was based on 3 main concepts; patient involvement, forensic setting and research activity. Six databases (Medline, Embase, PsycINFO, King’s Fund, HMIC, Cochrane Library) were searched from 1980 to 20 May 2016. Additional hand checks of reference lists of included documents were conducted. Documents were included based on strict inclusion and exclusion criteria. Documents were not assessed for quality, due to no appropriate assessment tool being available for the nature of these documents.
For documents that were included on the basis of these criteria, the content of the article was summarised, focussing on the issues that were specific to forensic settings. The main steps of grounded theory analysis were then applied. Contents of included documents were compared against the MHRN (2012) guidelines on service user involvement in mental health research.
The initial search returned 5,304 documents. Following initial screening and further inspection, 23 documents were identified for inclusion in the review. Of these, 5 documents were guidance for good practice, 11 were qualitative or empirical studies and 7 were overview or discussion documents.
Of the 23 included documents, there was no disagreement with MHRN guidelines in relation to any of the main themes. However, the documents highlighted a number of issues related to these themes which were specific to research taking place in forensic settings. These issues are presented under the following 5 headings: power relations and vulnerability, practical difficulties, confidentiality and transparency, language and communication and training.
Power relations and vulnerability
Several documents mentioned difficulties with the balance of power in forensic research settings and recognised the need for researchers to share power and provide appropriate support to service users:
- Obtaining informed consent: informed consent was given particular importance in the forensic setting due to poor literacy levels often hindering understanding. For example, Faulkner (2007) found that simply changing the word “consent” to “agree or disagree” had a huge impact on understanding.
- Tensions from staff or other service users as a result of service user involvement in the research process. The documents included in the review suggested multiple support measures to address this tension including: mentoring schemes, conducting interviews in pairs, holding regular meetings between service user researchers and principal investigator and peer support schemes (CLINKS, 2013; Faulkner & Morris, 2003; MacInnes et al, 2011; Shaw, 2014).
- Interview specific challenges: although service user interviewing was generally seen as a positive contribution to the research, it was also acknowledged that there was a possibility that this could introduce bias, for instance by limiting topics of discussion to only those which are “shared experiences” between the interviewer and interviewee (Livingston et al, 2013). Despite this, INVOLVE (2009) noted that appropriate support and training may minimise the risk of this substantially.
- Support and supervision: 5 papers specifically addressed the need to provide additional support and supervision to service user researchers. This need was thought to arise from a lack of clarity about trust and confidentiality, difficulty in knowing when and how concerns might be raised in a forensic setting and possible negative consequences arising from disclosure of “shared experiences” with interviewees (Faulkner, 2004; Faulkner, 2007; INVOLVE, 2009; MacInnes et al, 2011; McKeown et al, 2014).
A number of practical difficulties were raised in involving forensic service users in the research process:
- Consultation: some documents indicated that their service users were over-consulted, which often resulted in “consultation fatigue” (Faulkner & Morris, 2003).
- Tokenistic inclusion: there was some evidence of tokenistic inclusion of only a few service users in a consultation group mainly comprised of professionals (Sainsbury Centre, 2008). Spiers et al (2005) recommended that a commissioning panel of experts by experience should be formed to act as expert reviewers of all research proposals, particularly when commissioning and prioritising research topics.
- Staff involvement: some staff were wary of service user involvement in research due to not being consulted themselves and also due to fears that the service user may portray the service in a negative way (CLINKS, 2013). To combat this, the Sainsbury Centre (2008) recommended taking account of how research activities may conflict with prisoners usual activity and also to educate prison staff in advance about the benefits of service user involvement in research.
- Recruitment of service user researchers: many documents indicated that recruiting forensic service users to be involved in the research process could be challenging due to the need to negotiate with professionals who act as gatekeepers to patients. Some documents noted that even when this access is granted, service users may not be interested in involvement opportunities and prefer user-controlled activities (Faulkner & Morris, 2003). Various recommendations were suggested in how to improve recruitment of forensic service users; staff to relay the possibility of involvement enhancing future employment prospects (CLINKS, 2013), and highlighting a named staff member or inmate who can serve as research consultants and spread the word (Byrne, 2005).
- Employment and payment: all documents which cited this topic recommended employing service users as co- or peer-researchers and paying them a reasonable rate for their time. Despite this, there were several challenges associated with this including:
- Personnel departments being unfamiliar with employing service users in this way
- Service user views no longer being respected if they’re employed as a research assistant
- Payment leading to more formal expectations from the service user
- Making service users clear of their role and ensuring they do not feel a clinical pressure with their peers
- Slow payment of fees and expenses causing people to drop out of the project (Faulkner, 2004; Faulkner, 2007; Sainsbury Centre, 2008).
- Co-authoring: some documents noted that there was a difficulty in service users accepting the negative comments received from peer reviewers (Faulkner, 2007). To combat this, MacInnes et al (2011) recommended that team members experienced in the peer review process should provide support and assist with a constructive response to external reviewer comments.
Confidentiality and transparency
All documents included in the review supported the MHRN guidelines around the need for clarity and transparency at all times. In forensic settings, this was particularly important in relation to confidentiality and rewards for being involved (Faulkner, 2004), roles and responsibilities (SURGE, 2006) and the goals of the proposed research (Byrne, 2005). To achieve transparency around these issues it was suggested that holding regular meetings helped team members to understand what was required at each stage of the project and allowed them to make decisions on their level of involvement (MacInnes et al, 2011).
Language and communication
Many of the included documents highlighted the need for plain language and easily comprehensible terms. Patenaude (2004) reports that academic language can destroy rapport in prison due to the use of words that may infer equality between groups, or due to use of words such as ‘informant’ which may hold a different meaning within forensic settings. Further to this, several included documents in the review discussed the delicacy of terminology around service users. Shaw (2014) found that the majority of people using secure mental health services preferred to be known as patients, rather than service users. MHRN guidelines (2012) suggest a neutral term such as ‘project advisor’ which does not force disclosure of service use.
A number of included documents recommended that an individual assessment of training needs should be conducted prior to involvement in a research study. In forensic settings, it was suggested that training agendas focussed on; dealing with risk, security issues, boundary setting, the nature of the environment, the difficulties of being exposed to a range of offences and de-escalation training to peer interviewers (Faulkner, 2004; Shaw, 2014). Despite this, there were a number of barriers to providing training in forensic settings including; difficulties with ensuring appropriate venues, collecting and accompanying prisoners to training sessions and ensuring training courses are flexible enough for prison lockdowns (Sainsbury Centre, 2008).
To summarise, this rapid review has found:
- There is considerably less information available for forensic service user involvement in research than for mental health in general
- Where forensic-specific recommendations were made, these were broadly in keeping with the MHRN guidelines which relate to the broader group of people with mental health problems
- A number of issues were highlighted in relation to involving service users in research in forensic settings:
- Power relations and vulnerability
- Obtaining informed consent
- Tensions from staff or other service users
- Interview specific challenges
- Support and supervision
- Practical difficulties
- Tokenistic inclusion
- Staff involvement
- Recruitment of service user researchers
- Employment and payment
- Confidentiality and transparency
- Language and communication
- Power relations and vulnerability
Strengths and limitations
The authors should be commended for being the first to attempt a synthesis of knowledge in relation to the involvement of forensic service users in research.
Despite this, the use of the rapid review method is somewhat unreliable, due to there being no universally accepted definition of what a rapid review is and a tendency for it to yield poor quality reporting (Tricco et al, 2015). The authors themselves acknowledge that there is no guarantee that every relevant document has been identified in the review. Despite this, Watt et al (2008) found that the essential conclusions of the rapid and full reviews which they evaluated did not differ extensively, despite the scope of the rapid reviews being considerably narrower.
This paper provides a much needed review of the evidence for the involvement of forensic service users in the research process. However, the main issue with the paper for me is the authors’ apparent confusion between the definitions of ‘involvement’, ‘engagement’ and ‘participation’. As the authors themselves note, it is not uncommon for the terms involvement and engagement to be used interchangeably in relation to the research process. This, in my opinion, is not reason enough to lump both together in a rapid review, as they entail very different approaches to the research process, and sometimes entirely different research activities altogether. It is important to note that this is not a criticism of the authors themselves, but rather a commentary on the terminology used by this field of literature more widely. Perhaps it is important to first ensure a working definition of forensic service user involvement before we can begin to synthesise the evidence which claims to have used this approach?
Vollm B, Foster S, Bates P, Huband N (2017) How Best to Engage Users of Forensic Services in Research: Literature Review and Recommendations. International Journal of Forensic Mental Health 2017. Doi: http://dx.doi.org/10.1080/14999013.2016.1255282
Byrne (2005) Conducting research as a visiting scientist in a women’s prison. Journal of Professional Nursing; 21: 223-230.
Department of Health (2001) Research governance framework for health and social care. London, UK: Department of Health.
Faulkner & Morris (2003) Expert paper: User involvement in forensic mental health research and development. Liverpool, UK: NHS National Programme on Forensic Mental Health Research and Development.
Faulkner (2004) The ethics of survivor research: Guidelines for the ethical conduct of research carried out by mental health service users and survivors. Bristol, UK: Policy Press.
Faulkner (2007) Beyond our expectation: a report of the experiences of involving service users in forensic mental health research. Liverpool, UK: NHS National Programme on Forensic Mental Health Research and Development.
INVOLVE (2009) Exploring impact: public involvement in NHS, public health and social care research: Briefing notes for researchers. Eastleigh, UK: INVOLVE Support Unit.
Livingston et al (2013) Perceptions of treatment planning in a forensic mental health hospital: A qualitative, participatory action research study. International Journal of Forensic Mental Health; 12: 42-52.
MacInnes et al (2011) Service user involvement in forensic mental health care research: Areas to consider when developing a collaborative study. Journal of Mental Health; 20: 464-472.
McKeown et al (2014) It’s the talk: a study of involvement initiatives in secure mental health settings. Health expectations; 19: 570-579.
Mental Health Research Network [MHRN] (2012) Good practice guidance for involving people with experience of mental health problems in research. London, UK: Mental Health Research Network / National Institute for Health Research.
Patenaude (2004) No promises, but I’m willing to listen and tell what I hear: Conducting qualitative research among prison inmates and staff. The Prison Journal; 84: 69S-91S.
Sainsbury Centre (2008) A review of service user involvement in prison mental health research. London, UK: Sainsbury Centre for Mental Health.
Shaw (2014) Peer support in secure services.
Spiers et al (2005) Editorial: Service user involvement in forensic mental health: Can it work? Journal of Forensic Psychiatry and Psychology; 16: 211-220.
SURGE (2006) Brief guide to involving mental health service users in research. London, UK: Service User Research Group for England.
Tricco et al (2015) A scoping review of rapid review methods. BMC Medicine; 13: 224.
Watt et al (2008) Rapid versus full systematic reviews: validity in clinical practice? ANZ Journal of Surgery; 78: 1037-1040.