“…their opinions mean something”: Care staff's attitudes to health research involving people with intellectual disabilities

Accessible summary It is important for people with intellectual disabilities to be involved in research about their health care. Eight people working in the care sector were interviewed about their views about supporting people with intellectual disabilities to take part in research. Care staff were positive about research but talked about things that may make it difficult for people with intellectual disabilities to take part in research. We suggest some ideas that could help care staff and researchers to support people with intellectual disabilities to take part in research. Background Despite experiencing health inequalities, people with intellectual disabilities are under‐represented in health research. Previous research has identified barriers but has typically focused on under‐recruitment to specific studies. This study aimed to explore care staff's attitudes to health research involving people with intellectual disabilities, identify barriers to conducting such research and consider solutions to those barriers. Materials and Methods Eight members of care sector staff took part in a focus group or telephone interview, to explore their views on health research involving people with intellectual disabilities. The transcriptions were analysed using thematic analysis; 50% were double‐coded, and the emerging themes were agreed by three researchers. Results Three themes were identified: perceptions of research; barriers to conducting research; solutions to maximise recruitment and project success. Benefits to research were identified, but there were concerns that the time and effort required may outweigh these benefits. Barriers were identified including organisational policy and following the Mental Capacity Act 2005. There was some indication that such barriers may differ according to the severity of intellectual disabilities and the type of care setting. Solutions were proposed that involved greater collaboration between researchers and the care sector, and a more flexible approach to research. Conclusions Care staff are largely supportive of research that is appropriate and relevant to their service users. However, there is a need for clear communication from researchers and flexible recruitment and data collection strategies. This is likely to be facilitated by closer collaboration between researchers and the social care sector.