Engaging service users in the evaluation and development of forensic mental health care services: a peer reviewed report to the funders

In a year long participatory research project, funded by the NHS National Programme on Forensic Mental Health Research and Development (fmh), seven service users were recruited to lead an evaluation of forensic mental health care, with the help of academics and advocates of service user involvement (known as the research project advisory group [RPAG]). In keeping with the principles of participatory research, service user researchers (SURs) were maximally involved in all stages of the project, acting as both researchers and subjects in producing and analysing their own data. After a capacity building period of learning about research, the SURs chose to address the following three research questions: ‘How and why is the experience of using forensic mental health care/ services fundamentally bad?’ ‘How can forensic mental health care services be improved?’ and ‘How can forensic mental health care service users move forwards from the experience of being in forensic mental health care?’ In reflexive writings and focus groups about their experiences, and in an interview with a health service policy maker, SURs sought answers to these questions. In short, findings revealed that some institutions, regimes of treatment and service providers were seen as better than others. In essence, what is widely regarded by forensic mental health care service providers as good practice was appreciated by SURs. However, they also identified ingredients of the poor interpersonal relationships they had endured with those that cared for them (such as dishonesty, lack of compassion and trust). SURs also pointed to social stigma and their difficulty in gaining employment as major barriers to their ability to move forwards in their lives, wishing for help to deal with both. Though SURs led the project (setting the research questions, gathering and analysing data, and disseminating findings), they were considerably supported by RPAG members, particularly by the lead researchers and main authors of this report, who describe at length the processes and particular challenges of undertaking participatory research in this uncharted area. In the process of encouraging the SURs to be actively engaged in the process of researching their experiences of forensic mental care, it was striking to the lead researchers how uninvolved SURs felt they were in genuinely open discussion about matters of treatment, such as medication. SURs seemed to be constantly second guessing and suspicious of what clinicians were up to. As the active involvement of service users is now regarded as desirable and helpful in research, perhaps it also time to similarly regard the active involvement of service users as desirable and helpful in policy development and practice deliver

How best to engage users of forensic services in research: literature review and recommendations

Guidance on service user involvement is available to help researchers working with people with mental health problems, but there is currently no comprehensive guidance relating to forensic settings where additional issues arise. This rapid review aims to summarise the currently available information on how best to engage users of forensic mental health services in the research process, and to make appropriate recommendations. Medline and five other databases were searched to May 2016 using relevant keywords and Medical Subject Headings, supplemented by a general Internet search. Eleven peer-reviewed journal papers and 12 reports or web-based documents were identified, the majority containing information derived using a qualitative methodology. Five areas of particular relevance to forensic settings were identified: power relations & vulnerability issues (including ethical treatment; informed consent; attitudes of staff and other service users; support), practical difficulties (including ‘consultation fatigue’; tokenistic inclusion; tensions over security and risk management; access; payment; co-authoring); confidentiality and transparency; language and communication and training issues. Recommendations on engaging service users in forensic mental health research are presented