The self-management balancing act of spousal care partners in the case of Parkinson’s disease

Abstract

Background: Living with and caring for someone with chronic illness can lead to limitations in activity and social participation for the care partner. Past research emphasizes the importance of care partners taking care of themselves physically and emotionally so they can stay healthy to support the care recipient. There is little information regarding how the care partner takes care of their own social lives. The purpose of this study was to explore the concept of social self-management from the perspective of spousal care partners of people with Parkinson’s disease.

Method: Twenty spousal care partners of people with Parkinson’s disease were interviewed three times. A grounded theory approach informed data analysis.

Results: Findings that emerged from the data focused on balance in activities, support, and emotions and were summarized into three main themes: (1) Activities: Caregiving and beyond; (2) Strategies to support self and spouse; and (3) Emotional impact: Burden and compassion.

Conclusion: This research shows that care partners want to retain social participation and provides support for the importance of addressing the socio-emotional needs of care partners of people with a chronic disease. Interventions that guide care partners to take care of their spectrum of needs may lead to healthier, positive relationships.

Implications for rehabilitation

• The focus of rehabilitation is often on the person diagnosed with the chronic condition.

• Living with and caring for someone with a chronic illness, such as Parkinson’s disease, can lead to limitations in activity and social participation for the care partner.

• Including care partners in the rehabilitation process is key to helping maintain their health and well-being.

• Learning caregiving and self-management strategies may help care partners support their loved ones while staying socially engaged.

Keywords:

• Social participation
• self-management
• spouse caregiver
• qualitative research methods
• Parkinson’s disease

Acknowledgements

The authors acknowledge Sarah Gunnery and Michael Stevenson for their work interviewing participants and their insights and support throughout the analysis and writing of this study.

Disclosure statement

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Additional information

Funding

This work was supported by the National Institute of Nursing Research of the National Institutes of Health [Award Number R01NR013522].