The Use of a Digital Social Forum in a Parkinson’s Disease Risk Cohort: A Thematic Analysis of Forum Messages

TL;DR

An online forum for people at risk of Parkinson's disease helped build community and share support, suggesting digital engagement could help reduce PD risk.

Contribution

The study demonstrates the feasibility of using a digital forum to foster social engagement among individuals at risk of Parkinson’s disease.

Findings

Users created a sense of community through personal disclosures and outreach.

The forum facilitated sharing of symptom management advice and discussions on healthcare and research.

Technical issues and accessibility barriers were reported by users.

Abstract

Reduced social engagement is associated with increased risk of incident Parkinson’s disease (PD). Online peer support provides opportunities to develop new social connections. A digital social forum was recently embedded within PREDICT‐PD, an online UK cohort study that stratifies participants for risk of future PD, to explore the feasibility of digital social engagement as an intervention to modify PD risk.

This study reports on the content of messages exchanged on the forum to better understand how this was used and experienced.

364 public posts from 218 distinct users were analysed using thematic analysis.

Members created a sense of community through disclosing personal information and reaching out to others. Experiences were shared in relation to symptom appraisal, emotional impacts and routes to diagnosis. Practical advice, resources and information were exchanged to aid symptom management and proactive lifestyle changes. Users discussed their aspirations for timely diagnosis and treatment within healthcare, further research funding to aid prevention and treatment, and greater awareness of PD within society. Technical issues with the forum were reported, and accessibility was viewed as a potential barrier.

The online forum provided a peer support environment for people with similar health experiences to connect, exchange information and emotional support, and engage in discussions around political and social issues unique to PD. This highlights the potential of leveraging online peer support to promote social engagement in prodromal PD. Further research is needed to examine the effect on PD risk and develop accessible technologies.