Objective: Research indicates that peer mentoring approaches can be effective in providing support as well as increasing the well-being of people with various disabilities or health conditions.  We developed a novel peer mentoring system to provide an additional support mechanism for persons with Parkinson’s (PwP).

Background: Previous studies have shown improvement in PwP quality of life after participating in support groups.  There is also documentation of improved quality of life measures for peer mentorship programs in other chronic diseases such as chronic kidney disease and ovarian cancer.  However there is no data about quality of life measures and peer mentorship in Parkinson’s Disease.

Method: Volunteers were selected with a set of core characteristics in mind including strong communication skills, empathy, a history of living well with Parkinson’s, and a desire to support the community.  Volunteer mentors are further screened and oriented by the project co-director. The orientation includes coaching on mentoring processes, privacy issues, difficult conversations, and available resources for people living with Parkinson’s. Mentor relationships are highly personalized based on the needs and schedules, but mentors and mentees are encouraged to maintain regular contact with their mentee (at a minimum of once per month).  To date, there have been 24 mentees served by ten active mentors. Quarterly meetings and an annual end of year gathering help to ensure that the group remains unified in their approach.

Mentees are typically newly diagnosed individuals but may also have longer standing diagnoses and facing new challenges related to their diagnosis. Potential mentees are either self-referred or referred by their neurologists.  The project co-director interviews potential mentees and pairs them with an appropriate mentor.  Every attempt is made to match mentors and mentees based on common interests, work experiences, gender, and age.

Results: Preliminary data from the project’s first year indicate that both mentors and mentees feel the connections are very beneficial for their well-being.

Conclusion: We hope to demonstrate that one-on-one peer support systems fills an important gap in current support systems available for Parkinson’s.  Future directions include a care partner component, standardization of the mentor-mentee selection and pairing process.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/a-novel-peer-mentoring-support-system-for-persons-with-parkinsons-disease/