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

Abstract

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.

Yonder: Parkinson’s spouses, weight-loss surgery, pension participation, and male nurses

“…This led an Israeli research team to investigate the experiences of spouses who do not identify as primary caregivers. 1 They found that the progressive nature of PD led to a dynamic nature to the participants' experiences; as the disease progressed, it intensified in their experience. In a similar fashion to the 'on-off' phenomenon experienced by levodopatreated PD patients, where patients go through cycles of fluctuating symptoms, spouses experienced a 'seesaw' dynamic where the disease took up more (off) or less (on) space in their lives.…”