Objective: To assess (1) the types of healthcare and life preferences decisions the family dyad is making in advanced stages of Parkinson’s disease (PD) and (2) the degree of satisfaction with decisions for the family dyad at time periods six months apart.

Background: PD manifests with a significant progression of motor and non-motor symptoms as the disease advances. In advanced stages of the disease, family members are heavily involved in the day to day care of the person with PD as most often care is provided in the home setting.

Methods: The Ottawa Decision Support Framework guided the study. A mixed method approach was utilized that included structured questionnaires on decisional self-efficacy, decisional conflict and decisional regret following a semi-structured qualitative interview. Questionnaires were completed independently whereas the interview was conducted as a dyad. Data was collected on two time periods. Qualitative content analysis of the interviews was used. T-tests were performed on the decisional scales scores.

Results: Fifteen dyads participated (N=30). The mean age of the person with PD (PWP) was 75.33 years, the family member mean age was 68.87 years and the mean time since diagnosis was 10 years. All PWP were assistive device dependent with a smaller number being home dependent. Content analysis revealed decisions in three themes: 1) housing versus placement; 2) getting more help around the clock; and 3) equipping with more assistive and supportive devices. Decisions made at initiation of the study remained the decision that the dyad continued to do six months later. Time 1 and Time 2 decisional conflict and decisional regret scores were statistically insignificant between the PWP and the family member. However, there was a statistically significant increase in the family members’ regret and conflict scores at time 2.

Conclusions: While joint decision making was reported by the dyads and the decisions made were being followed over time, family members experienced higher decisional conflict and regret as time passed suggesting the enacted decisions were more difficult to live with over time. These findings are being incorporated into a dyadic decision intervention based on the guiding framework to support families in advanced illness decision making.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/dyadic-decision-making-decisional-satisfaction-in-advanced-parkinsons-disease/