Couples coping with Parkinson's disease: Implications for the Patient, Partner, and Relationship

Parkinson’s disease (PD) is a degenerative, progressive neurological disorder that primarily occurs in older adults. Psychosocial research related to persons with PD (PWPs) is relatively scarce. In particular, the ways in which the disease impacts, and is experienced by, the couple (i.e., the PWP and his or her spouse or other romantic partner) is a largely underexplored area. Such research is strongly warranted because, if chronic illness occurs in the context of a romantic partnership, it can cause major distress for not only the patient, but also, for his or her partner and their relationship. Furthermore, how a couple copes with these stressors may have important implications for the quality of their relationship as well as each individual’s mental and physical health. Therefore, the aims of this project were to (a) describe the ways in which PD affects not only the PWP, but also his or her partner and the relationship, and (b) examine how PWPs and their partners cope with these changes in a relational context via social support. Forty-four individual, in-depth interviews were conducted (with 21 PWPs and 23 partners). Interviews were transcribed and then analyzed using grounded theory techniques. Results clearly demonstrate that PWPs and partners encounter a host of difficulties that extend far beyond the physical manifestations of the disease. In addition, data reveal that PWPs and partners help one another in a number of important ways, but that social support is sometimes accompanied by costs and complications. Findings of this study also illuminate strategies that PWPs and partners consider to be effective in managing these costs and complications of support. Results inform the theoretical development of a normative/rhetorical model of social support for couples coping with PD (which explains why and when certain strategies are likely to be effective in managing costs and complications of support in the PD context). The findings have significant practical implications for PWPs and partners in terms of interventions and medical care