Mental health service user involvement: some way to go yet: Oral presentation

Background. A pilot study was conducted in a Health Board in South Wales with 16 Mental Health Service Users (MHSUs) to find out if they were involved in their services. Ethical approval received August 2012. Data collection completed April 2013.AimThe purpose of this presentation is to report on the findings from the study and share my learning. 

MethodsThe design was qualitative i.e. focus groups and one-to-one interviews. Inclusion criteria. Used adult community mental health services and the statutory services within the last 2 years. Therefore a non probability/purposive sampling technique was used. Two focus groups and five individual interviews were conducted: generated a sample of 16 MHSUs. 
Findings. We assumed a shared understanding of Involvement, which was not understood by the MHSUs. MHSUs had views about their services but these were not being heard by those who could act on them. Barriers existed, organised into 4 themes. 1. No formal mechanisms to be heard 2. Confidence 3. Being “too ill” and 4. Infrequent/no contact with Mental Health Professionals.

DiscussionCo productive research can facilitate the research process, but we found that the MHSU participants could not relate to the MHSU researchers. This raises the question: Would we have achieved the same outcomes had we not had MHSU researchers? Arguably we cannot research involvement without MHSUs being part of the research team (Telford & Faulkner 2004, RCN 2007, Wilson et al. 2010) – but this is time consuming and we experienced barriers to their involvement e.g. applying for Honorary contracts/research passports.

ConclusionMHSU involvement in research and researching MHSU involvement can inform the development of services but only if MHSUs are actively engaged. The contribution of this paper to a wider audience is to share my learning from involving people in research, which still has some way to go. Recommended reading lists : RCN, (2007) User involvement in research by nurses. RCN Guidance, Royal College of Nursing: London. Telford, R. & Faulkner, A. (2004) Learning about service user involvement in mental health research. Journal of Mental Health 13, 549-559.Wilson, C. Fothergill, A. & Rees, H. (2010) A potential model for the first all Wales mental health service user and care-led research group. Journal of Psychiatric and Mental Health Nursing. 17, 31-38.