Good-quality social care for people with Parkinson’s disease : a qualitative study

Objectives: The study examines the meaning of good-quality social care for people with Parkinson’s disease and their carers. It identifies, from their perspective, the impact of good-quality social care on health and well-being. Design: Qualitative case study methodology, interview and framework analysis techniques were used. Setting: community locations in the north and midlands of England. Participants: Data were collected from 43 participants including individual interviews with people with Parkinson’s disease (n=4), formal and informal social care providers (n=13), 2 focus groups, 1 with people with Parkinson’s disease and their carers (n=17), and 1 with professionals (n=8), plus a telephone interview with a former commissioner. Findings: Good-quality social care, delivered in a timely fashion, was reported to have a positive impact on health. Furthermore, there is an indication that good-quality social care can prevent untoward events, such as infections, symptom deterioration and deterioration in mental health. The concept of the ‘Impact Gap’ developed from the findings, illustrates how the costs of care may be reduced by delivering good-quality social care. Control, choice and maintaining independence emerged as indicators of good-quality social care, irrespective of clinical condition. Participants identified characteristics indicative of good-quality social care specific to Parkinson’s disease, including understanding Parkinson’s disease, appropriate administration of medication, timing of care and reassessment. ‘Parkinson’s aware’ social care was seen to generate psychological, physical and social benefits that were inter-related. Conclusions: The findings indicate how maximising quality in social care delivery for people with Parkinson’s disease can impact on health and wellbeing. Long-term or short-term benefits may result in prevented events and reductions in health and social care resource. Health professionals can be instrumental in early detection of and signposting to social care.