Living with Parkinson’s disease: A qualitative study of spousal perspectives

Research has demonstrated that Parkinson’s disease can have adverse psychological effects on caregivers. Very few studies have focused on the experiences of spouses who are not primary caregivers or who do not identify as primary caregivers. The aim of this study was to explore the experiences of spouses who are not primary caregivers or do not identify as primary caregivers. Twelve Israeli women, spouses of men with Parkinson’s disease, were interviewed using a semi-structured in-depth approach. Thematic analysis revealed five themes: before diagnosis, at diagnosis, after diagnosis, interpersonal ways of coping, and intrapersonal ways of coping. A dynamic of oscillation between confronting and avoiding losses was indicated. Non-death losses were mostly unacknowledged among spouses’ social circles. Results were interpreted in the context of grieving processes after diagnosis. Findings suggest a need for psychological interventions aimed at creating safe spaces for spouses to engage in a grieving process after diagnosis.