The role and contribution of experts by experience in building research capacity in adult social care services: findings from the script study

Abstract

BACKGROUND: Engaging individuals with lived experience in social care research is crucial for transforming how knowledge is generated and applied in practice. This study explores the involvement and perceptions of experts by experience in the SCRiPT study, which aimed to build research capacity in social care through Research in Practice Teams (RiPTs). These teams included social care professionals and experts by experience who contributed their lived expertise to research design and execution. METHODS: A qualitative approach was used to analyse data from semi-structured interviews and focus groups with RiPT members, social care staff, and experts by experience. RESULTS: Despite the challenges of recruiting experts by experience into social care research, it was found that experts by experience made significant contributions, offering unique perspectives based on their personal experience with health and social care services. Their input improved the relevance of research, helped shape study design, and ensured the research was more applicable to practice. They also brought valuable research experience, with some contributing to data analysis and ethical discussions. Furthermore, their involvement added enthusiasm and energy to the teams, inspiring greater engagement. Efforts to ensure accessibility and inclusivity were made, including clear communication, adjustments for different impairments, and additional support from a user-led organisation. Experts by experience were seen as equal partners, and their involvement led to positive changes in team dynamics and attitudes. Initially, some team members were unsure of the experts' role, but later interviews revealed a shift in perspectives, with many recognising the contributions. CONCLUSIONS: This study underscores the positive impact of involving experts by experience in social care research. It highlights the potential for co-production to enhance research capacity, improve service delivery, and influence future research practices. Findings suggest that a participatory, collaborative approach can lead to meaningful involvement and improved outcomes, reinforcing the need for experts by experience to be recognised as essential, equal contributors in research teams.; People who work in adult social care want to make sure their services are based on good evidence. But in the past, there hasn’t been much money or the ability to do research. To help change this, a project called ‘SCRiPT’ (which stands for Social Care Research in Practice Teams), led by the University of Hertfordshire, worked with two local councils in the East of England.In this study, four small research teams were set up. Each team was led by a social worker or occupational therapist. These team leaders got help and training from university researchers to do studies in their own workplaces. Each team included social care staff and people who have used social care, also called Experts by Experience, or EbEs. Some were already working for the council, and others were brought in by an organisation called Shaping Our Lives, which helps make sure everyone has a voice. This group also supported the EbEs throughout the study.During and at the end of the study, the people in the research teams asked what they thought about involving EbEs in the teams. Most people said it was a really good experience. How much each EbE was involved depended on things like how well they knew them previously and whether they had done research before. The study showed that it’s important to include people with lived experience. It also showed they can be equal partners in research. This is a step forward for future involvement work in social care.