A Qualitative Exploration of the Experiences of Service Users and Carers Involved in Health and Social Care Education.

Over the last 30 years, there have been advancements in service user and carer involvement in health and social care pedagogy. This has resulted from social movements, government policies, regulatory bodies, and professional associations calling for service users and carers to be placed at the heart of developing, delivering, and evaluating services and education in the United Kingdom (UK). However, empirical evidence in the field has traditionally looked at the impact and outcomes of involvement from the student’s perspective, with fewer studies seeking to understand involvement from service users’ and carers’ perspectives. This qualitative research explores service users' and carers' experiences in health and social care education at a Higher Education Institution (HEI) in the UK. Through semistructured interviews, 10 service users and carers recruited from a Service User Reference Group (SURG) shared their experiences. Participants’ narratives were analysed using a thematic analysis approach, which revealed five key themes that expressed their experience of this phenomenon. The study gained rich insights into the areas of involvement that service users and carers experienced as empowering and the practices within academia that rendered them powerless. Service users and carers also provided explicit recommendations for what they would like involvement to look like in the future. Furthermore, the study elucidated the complexities of involvement and the importance of power relations within academic institutions to be scrutinised and challenged to ensure that involvement is not tokenistic but collaborative and meaningful for all stakeholders. Finally, it also revealed the institutional practices in operation and the infrastructures that perpetuate the power inequalities favouring theoretical knowledge over lived experience knowledge. These findings contribute to the knowledge base that seeks to understand power, empowerment, and powerlessness within involvement. It is relevant to service users and carers, policymakers, the National Health Service (NHS) and academic institutions that have established involvement initiatives or are seeking to introduce the involvement of service users and carers into their programmes. This will ensure involvement moves beyond mere rhetoric and is meaningful and empowering.