The daily living for informal caregivers with a partner with Parkinson's disease - an interview study of women's experiences of care decisions and self-management

Aim.  To throw light on the lived experiences of female partners of patients with Parkinson disease living at home.

Background.  It is known that daily life with a partner with Parkinson’s disease entails radical upheaval in the family, in particular for the female partner.

Methodology.  A phenomenological hermeneutic approach was used. Interviews with female partners (N = 10) of patients with Parkinson disease who were living at home were conducted in Denmark in 2008. The French philosopher Ricoeur’s theory of interpretation guided the data analysis.

Conclusion.  This study shows that essential to the women’s experiences was the impact on daily life and changes to their quality of life in living close to a partner with Parkinson’s disease. As the disease gradually developed to affect motor, cognitive and emotional functioning, the need for care decisions related to help with daily activities and functions arose, and the women became informal caregivers.

Relevance to clinical practice.  The results could add to health providers’ understanding of the significance of informal care and raise the consciousness of women caregivers about how their own quality of life diminishes by setting aside their own needs in favour of the care needs of their chronically ill partner. The women’s contribution should be better valued, and they should be supported to a greater extent to retain/maintain their self-management capacity. Respite and relief from the care burden should especially be provided for women who live at home with a chronically ill partner.