Dyadic Decision-Making in Advanced Parkinson’s Disease: A Mixed Methods Study

Abstract

People with advanced Parkinson’s disease (PD) are living at home being cared for by a family member. Decisions about health care and living preferences are made in a family context. The aims of the study were to (a) examine the types and timing of the decisions being made by dyads (person with Parkinson’s [PWP] and caregiver) in advanced PD; and (b) explore perceived decision quality relative to specific decisions made. A mixed methods design of semi-structured dyad interviews followed by individual completion of decision measures twice at six months apart was utilized. Decisions involved obtaining more services in the home, moving into assisted living communities, maintaining as is, and initiating hospice. There was high decision quality as reflected by low decisional conflict and regret without statistical differences within the dyad. The findings provide insight into the nature of decisions dyads face and suggest ways that health care providers can support decision-making.