Quality of Life and Caregiver Burden in Parkinson’s Disease: The Role of Patients’ and Carers’ Illness Appraisals

Parkinson’s disease is common in older adult populations, with an increasing prevalence with age. Many psychosocial factors have been shown to be associated with quality of life, however there has been limited research investigating the role of illness appraisals, despite this existing for other chronic health conditions. The literature review examined experiences of caring for a spouse with Parkinson’s disease. A critical thematic synthesis of qualitative research was conducted with rigorous quality appraisal. Negative consequences to caring were evident with social restrictions and loss of previous identities and a shared future identified. However, a sense of resilience emanated throughout the studies. Ambivalence was an emergent theme, with spouses reporting a need for increased professional support but stated difficulties discussing issues, particularly those regarding end of life. Increased community support and resource is required with a dyadic focus, including both spouse and patient. The empirical study focussed on quality of life and caregiver burden in Parkinson’s disease and the role of patients’ and carers’ illness appraisals. A cross-sectional self-report design was utilised. Illness appraisals were demonstrated to be key predictors of quality of life and burden, after controlling for biomedical variables, and the importance of consideration of both patient and carer appraisals for these outcome measures was highlighted. Clinical implications of the findings are discussed with suggestions for future research. The critical appraisal discussed reflections on the research process addressing key areas, including origins of the project and development of research ideas, ethical submission, data collection and analyses, whilst making reference to specific learning points.