preparing patient-caregiver dyads with parkinson's disease for future decision making

Conditions: Parkinson Disease

Summary: persons with parkinson's disease and family care partners are often unprepared to make difficult, future medical decisions. earlier conversations about future medical decisions between persons with parkinson's disease and family care partners are needed before communication and cognitive difficulties become severe. in this study, the investigators will pilot test a novel dyadic intervention to help persons with parkinson's disease and family care partners make future medical decisions. the investigators hypothesize the intervention will be feasible and acceptable among persons with parkinson's disease and family care partners.

investigators are looking for pairs of participants consisting of a person with a diagnosis of parkinson's disease, and a family care partner who is most likely to help make medical decisions in the future. for this study, pairs will complete a survey to understand how engaged participants are in discussing future medical decisions, demographics, and the severity of parkinson's disease. this survey will take about 15 minutes. then, participants will work through a medical decision making support intervention together. completing the intervention in-person, on the phone, or via video conferencing is acceptable. the resources will provide information on future medical decisions participants may need to make. the intervention is completely online and will take about 60 minutes to complete. participants will have 2 weeks to complete the intervention. the investigators will call participants a week after enrollment to ask about technical difficulties completing the intervention, provide assistance with intervention material navigation as needed, and answer questions about the intervention. participants will receive another online survey 2 weeks after enrollment to understand engagement in discussing future medical decisions, and acceptability of the intervention. the 2 week survey will take about 15 minutes to complete.

Eligibility criteria:
person with parkinson's disease inclusion criteria: * self-report a clinical diagnosis of parkinson disease * does not have a diagnosis of dementia * speak and read english * have access to a reliable phone or internet connection * have access to an online connection through a smartphone, tablet, or computer device * be comfortable navigating websites or have someone available to assist * agree to be audio recorded during intervention care partner inclusion criteria: * self-identify as the family member who will likely make medical decisions for the person with parkinson disease in the future or who is the legally appointed health care representative * self-report not having a diagnosis of dementia * speak and read english * have access to a reliable phone or internet connection * have access to an online connection through a smartphone, tablet, or computer device * be comfortable navigating websites or have someone available to assist * agree to be audio recorded during intervention exclusion criteria: * cannot see well enough to see words on a newspaper even with corrective lenses * used the intervention resources before * if cognition is questionable and cannot pass consent understanding questions

Keywords: end of life medical decision making advanced illness family