“We don’t get asked”: including people with workforce experience as public contributors in a workforce-related study about homecare work towards the end-of-life

BACKGROUND: Homecare workers are an undervalued but essential part of the health and care workforce in England, providing vital end-of-life care without adequate training or support. Through the SUPPORTED study we explored the experiences, training and support needs of homecare workers who care for people with advanced illness, and co-developed (with homecare workers, managers, and educators) new training resources and recommendations to improve policy and practice. MAIN BODY: This paper explores the public involvement in this study and the contribution made to the research process, research outputs, relationships between the people involved, and our understanding and practice of public involvement. We involved 23 people with personal experience of this topic in different roles. We worked with five public contributors (homecare workers and family carers) during the study inception and grant application stage. Following successful funding, we set up two advisory groups (homecare workers; service users and family carers) which met regularly to support and inform the study from protocol development onwards, including sense-checking interview findings and training resource development. We also included lay people with topic experience in research team management meetings and study oversight. The distinctive features of our approach included creating parallel streams of public involvement; giving voice to the workforce being studied; involving lay people in multiple roles and levels of study governance; integrating public involvement with qualitative research and co-design methods; sustaining a flexible, listening and adaptive approach; and using creative methods to understand and evaluate our work. CONCLUSION: By using this approach, we successfully involved a workforce historically absent from research, with little influence on decision making in their working lives. Involving many people over a sustained period helped us learn from diverse perspectives and resulted in changes to our approach, for example, recruiting homecare workers directly instead of through managers, and better language to describe the study population. A dedicated coordinator role was critical in sustaining relationships and ensuring public voices were immersed into all aspects of the study. This had reciprocal benefits for public contributors, the research team, and the quality of the research, shaping our research and involvement practice and influencing the direction of the study.