Caring for persons with Parkinson’s disease in care homes: Perceptions of residents and their close relatives, and an associated review of residents’ care plans

Abstract

Abstract Through qualitative in-depth interviews, we collected the views of persons with Parkinson’s disease (pwPD) and their close relatives in care homes to establish their collective views of the effectiveness of care. We also reviewed the corresponding care plans. Drawing on these two forms of data collection, we compared similarities and differences between the qualitative interview data and the care plan analysis to elaborate on the experience of residential care for pwPD. Close relatives of care home residents can be a fruitful source of information for care home staff, throughout the care planning process, especially in relation to the specific needs of a pwPD. Although health and social policy advocate active collaboration between people with long-term conditions, their families, and their formal carers, there is limited evidence of such collaboration in the data examined here. There is an apparent shortfall in the knowledge and understanding of PD among care home staff. There are important pragmatic (e.g. drug administration) as well as psycho-social reasons for flexibility in routine care provision to meet the dynamic needs of pwPD. The findings here support the need for further, larger scale research into the quality of care for pwPD who are care home residents.