BACKGROUND
Parkinson’s Disease (PD) significantly impacts the lives of people with the diagnosis and their families. Besides the physical symptoms, living with PD also has an emotional impact. This can result in withdrawal from social roles, increasing the risk for social isolation and loneliness. Peer support is a way to stay socially connected, share experiences, and learn new coping skills. Peer support can be provided in-person, but also online. Advantages of online peer support include that it overcomes geographical barriers, provides a form of anonymity, and support can be readily available when needed. However, the psychosocial impact of PD is still under researched and there is no systematic synthesis of online peer support for people with PD yet.
OBJECTIVE
(1) explore the benefits and challenges of online peer support for people with PD, and (2) identify successful elements of online peer support for people with PD.
METHODS
The method selected for this systematic review is a narrative synthesis. Six databases were systematically searched in April 2020 for articles published between 1989 and 2020. The quality of the included studies was assessed with the Critical Appraisal Skills Programme qualitative research checklist and the Downs and Black checklist.
RESULTS
10,987 unique articles were identified through the systematic database search. Of those, 8 were included in this review. One study was of poor quality, two were of medium/ fair quality, while the rest were of good/ high quality. Online platforms included discussion forums, an online virtual world, and Facebook groups. Besides one, all papers reported on text-based communication between users. Included studies reported on sharing social support and personal experiences. Successful elements included increasing similarity between members and offering the opportunity to directly ask questions to a physician. Challenges included members leaving without a warning and PD symptoms hindering use of technology.
CONCLUSIONS
Peer support can improve social support and help people with PD in living meaningful and satisfying lives. Peer support is unique and cannot be replaced by family members, friends, or healthcare professionals. Online peer support can be a solution for those who do not have access to an in-person support group, or who’s PD symptoms restrict them to travel. However, research on the personal experiences of those who engage in online peer support and potential barriers in accessing it remains limited. Future research could use qualitative methods to explore these fields further.
Nursing creative technology for mutual help group to people with Parkinson’s disease and their families