What was required?
We were keen to move away from fairly low key involvement and reliance on one or two people and to broaden the diversity of people and range of experiences that we could draw on and involve throughout our programme of research. We also wanted to develop research capacity amongst service users through the provision of training.
How did you address it?
In 2009, SUGAR (Service User and Carer Group Advising on Research) was established with the help of funding awarded through a National Institute of Health Research, as part of a wider programme of research. This allowed the facilitated involvement and collaboration of mental health service users and carers in an on-going programme of mental health nursing research. Over the last four years, the group has received research training and collaborated with researchers on a large number of internal and external research projects. The group is facilitated by Professor Alan Simpson, Dr Julia Jones and other members of the mental health research team.
How did it go?
Extremely well! SUGAR currently consists of 13 members: 11 service users and two carers recruited through the local mental health service provider using a ‘job description’ and person specification designed specifically for the role. The group reflects the rich diversity of London in terms of age, gender, sexuality and ethnic mix and includes people with a range of mental and physical illness and life experiences. SUGAR meets once a month with various mental health researchers and students to discuss and collaborate on all aspects of the research process, including: the identification of research questions, project design, ethical issues, recruitment, data collection, analysis, report and paper writing, dissemination and implementation of results. Members are provided with honorary university contracts that allows them access to the library, computer systems and other university services. They are remunerated for involvement in meetings and for any additional input. In addition, members of SUGAR receive on-going support, education, training and development with individual and group teaching and self-directed learning.
What worked well? Any particular challenges?
Over the last four years, members of the research team, research students and external collaborators have attended and discussed aspects of research projects with SUGAR on 46 occasions. On average, 11 SUGAR members and at least three members of the research team attend each meeting. Usually, two research topics are discussed at each meeting and a range of methods are used to maximise service user and carer input, including large and small group work, written exercises, brainstorming, discussions and presentations.
Research projects have included reducing conflict and containment in acute settings; peer support in mental health and haemodialysis settings; protected engagement time; care planning and coordination; suicidal behaviour and self-harm; measuring health utilities; substance use and intoxication; using technologies; carers in crisis and acute care; seclusion, observation, and sensory rooms; medication information; acceptance and commitment therapy; self-stigma; staff attitudes; mental health of mental health professionals; HIV screening in mental health settings and supporting parents on acute wards. Topics discussed have included: • Exploring a range of ideas for research studies • Potential interventions to be used in studies • Recruiting patients to studies • Designing patient participation leaflets • Writing the preface to a monograph • Ethical issues • Developing research questions for staff and patients • Developing interview schedules for staff and patients • Piloting interview schedules and questionnaires • Initial findings and results, including systematic reviews of literature • Dissemination of results
Additionally, SUGAR members have been recruited as members of study steering groups and lived experience advisory groups by core and external research staff and contributed to educational programmes at the University. Joint presentations and workshops have been given at a number of international and national mental health nursing research conferences and events. The SUGAR model has been cited as an example of good practice and has now been replicated within the School of Health Sciences through the establishment of the Kidney Research and Education Initiative. More information about the work of SUGAR, some of the challenges, and the impact on our research activities can be found in a jointly written paper here: http://tinyurl.com/p7ojxna