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.

Parkinson’s disease in primary health care and nursing care: a scoping review

“…As PD may affect the life not only of the people with the disease, but also for their whole family, education for selfmanagement of the disease for people with PD and their care partners (13,14,17,18,(21)(22)(23)(24)28,30,(33)(34)(35)(36)(37)(38)(39)(40)(41)(42)(44)(45)(46)48,50,52) , is an essential part of nursing care. On the theme, it was observed that managing the patient-caregiver binomial includes interventions that aim at the coordination of care for the psychosocial effects of illness that can interfere with relationship interactions, with particular emphasis on strengthening caregiver support networks.…”

“…Clinical evidence (13,14,17,18,(21)(22)(23)(24)28,30,(33)(34)(35)(36)(37)(38)(39)(40)(41)(42)(44)(45)(46)48,50,52) available on self-management education of the disease for people with PD and their care partners involves promoting health for family members and caregivers, providing family education (13,14,24,37,41,44,48,50) and safe sharing space for conversations on sensitive issues ranging from sexual issues of the couple after diagnosis to issues related to palliative care for patients at the end of life (39) .…”

“…Findings (21,28,36,46) indicate that, for promoting education for self-management of the disease, it is necessary to know family functionality, access to community resources, social support network and tracking the participation of each individual involved, being part of nursing care and directly related to people with PD's quality of life.…”