Care Partners' Information Needs When Caring for a Family Member With Parkinson's Disease: An Explorative Study

Parkinson's disease (PD) is a progressive neurodegenerative disorder that increasingly impacts many aspects of everyday life for those affected. The involvement of family members becomes increasingly important as PD progresses. Although family members are often willing and ready to help and support as a care partner, their role can be demanding, with consequences for their own health and well-being. One way to offer care partners support could involve providing information to increase insight into the progress of PD.

To explore care partners' information needs when caring for a family member with Parkinson's disease.

Fifteen care partners were interviewed in focus groups, dyadic or individually, with open-ended questions. The interviews were recorded and transcribed. Data were analysed using reflexive thematic analysis.

The analysis revealed four themes reflecting care partners' information needs in their caregiving role: (1) to be prepared when symptoms limit daily life; (2) to preserve participation and social life; (3) to find reassurance together with others; and (4) to cope with feelings of uncertainty.

The results demonstrate the need for personalised information meeting the care partners' physical, social, emotional and existential needs. This calls for holistic information-based interventions built on collaboration between healthcare professionals, the person with PD and the care partner, aimed at promoting care partners' well-being and helping them support their family member with PD. The themes identified here may be seen as a framework for such information-based interventions.