What are the barriers and support systems for service user‐led research? Implications for practice

Abstract

While the involvement of service users in mental health research has increased, a review of the literature suggests that this apparent increase in involvement does not necessarily coincide with service users having a ‘louder voice’ or greater control over service delivery.The purpose of this investigative study was to explore the barriers and support systems for service user‐led research within a local NHS trust. The study focused on an original research project that set out to be service user‐led by designing and piloting an evaluation tool to measure satisfaction with care planning across the trust. The paper describes a qualitative methodology that captured stakeholder's experiences of why the original project did not reach its intended conclusion. Interviews were conducted with a range of professionals and service users, alongside participant observations of steering group meetings. Data were analysed using a grounded theory approach that led to the identification of key lessons for those intending to involve service users in research in the future. The findings suggest that there are many support systems that can assist service user‐led research, but there are still too many barriers to implementing it effectively; in particular, processes surrounding ethical approval and the stigma attributed to such research by some professional staff.The lessons learned are presented to assist in the education and training of mental health service user researchers or professionals who are conducting research collaboratively with service user colleagues.