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An online forum for adult children of people with Parkinson’s allows peers living a shared experience to offer support, share tips and information, and be heard.

Living optimally despite the complex and progressive symptoms of Parkinson disease requires a team effort with caregivers and family members playing both offense and defense positions. They alternate planning and preparing for the future with responding and adjusting to the constant demands and problems encountered every day. In nearly all aging populations, adult children at some point become heavily involved in screening treatments, interventions and support. This is particularly true with PD due to the length and degenerative nature of the disease.

The Adult Children of People with Parkinson’s private Facebook group offers peers a safe, private space where they can share tips and information, offer support and inspiration, and be heard in a safe, private space. The group now grows at an average rate of 20 new members per week, engaging people from across the US, Canada and Europe. Using an UX model of design and the value proposition canvas, we created the page to address this population’s pain points based on information surfaced from conversations with hundreds adult children of people with PD.

The private group addresses the needs of adult children, helping to educate them about the disease, treatments and interventions. The group also offers them an opportunity to build skill sets based on a better understanding of PD as well as how they can support their family member with Parkinson disease and the primary care partner. The group offers an important forum for discussion, learning, and building support. In addition to conversations among the adult children, PMD Alliance posts regular information about treatments, tools and assistive devices, medical professions that assist in navigating PD, and more.


Poster presented at the Brain & Behavioral Health Research Day 2021



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