Who presents the greatest challenge in intellectual disability research- participants or health and research professionals?

Abstract

Background The challenges of recruitment to randomised controlled trials have been well documented. The additional challenges of recruiting people with intellectual disabilities (ID) and significant health co-morbidities have been the focus of less attention. The aim of this work was to explore issues around the screening and recruitment of adults with ID and Type 2 Diabetes (T2D) into the internal pilot of the ‘My Diabetes and Me’ Randomised Controlled Trial. The findings were used to develop recommendations and implement interventions to address challenges for recruitment to the main study. Methods A multiple methods approach using the QuinteT Recruitment Intervention was employed across three National Health Service sites in the United Kingdom. Semi-structured interviews were undertaken with staff, and adults with ID/T2D recruited to the study; analysis of recruitment discussion recordings, and a review of documentation pertaining to screening logs and research meetings was also performed. Thematic analysis identified the complexity of challenges and potential enablers to recruitment in this population. Results Recruitment challenges began much earlier than anticipated with significant organisational process challenges to be overcome. The discomfort felt by some staff in putting potential participants forward was evident as they don’t feel the study is appropriate for this population, or they feel out of their depth. Engagement and ‘buy-in’ from people with ID/ T2D were much more positive. The emotional labour involved in ensuring the internal pilot progressed to the main study was noteworthy. Conclusion The use of QRI methodology within an ID RCT is a novel approach, unearthing emotional challenges and significant systemic organisational process challenges. The findings of this study clearly illustrate the informed implementation strategies that are needed to improve recruitment processes, minimise the emotional labour relating to NHS organisational ‘buy-in’ and address the preparation and readiness of NHS health and social care staff for research in under-represented populations.