‘It’s not really our thing’:lessons in engaging care homes in palliative care research

Abstract

Background: In England and Wales there are just under 400,000 older adults residing in care homes at any one time. Despite this, care home residents are often excluded from epidemiological studies and little routine data are collected within care homes. Data on palliative care provided by care homes is reported to the Care Quality Commission, but the quality of care is often locally determined. There is ongoing research in this area aimed at collecting representative, internationally comparable data, such as the PACE study. Aims: To discuss the challenges encountered in engaging and recruiting care homes across England in the PACE study, a retrospective, cross sectional survey of deaths over three months. The study collected questionnaire data from care home staff, general practitioners and relatives of care home residents on their experiences of palliative care. It aimed to include 200 deceased residents in fifty care homes over a one-year period. Methods: The research team reviewed the barriers and challenges encountered throughout the research process, including developing a representative sampling framework, obtaining ethical approvals, advertising the study and recruiting care homes. Results: There is a lack of clarity regarding where care homes are located within the scope of ethical approval bodies. Recruitment through random sampling was found to be less effective compared to recruitment through ENRICH networks. Barriers to care home participation included concerns regarding sharing information, fear of opening up to potential criticism, lack of resources and misunderstandings regarding confidentiality. Conclusions: The development of care home networks and informal contacts can improve the rate and extent of research involvement. Whilst representativeness can be attained, random samples and ensuring a rigorous sample through these methods of recruitment remains a challenge.