Online Peer Support for People With Parkinson Disease: Narrative Synthesis Systematic Review

Abstract

Background Parkinson disease (PD) significantly impacts the lives of people with the diagnosis and their families. In addition to 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 both in person and on the internet. Some of the advantages of online peer support are that it overcomes geographical barriers and provides a form of anonymity; moreover, support can be readily available when needed. However, the psychosocial impact of PD is still underresearched, and there is no systematic synthesis of online peer support for people with PD. Objective This review aims to explore the benefits and challenges of online peer support and identify successful elements of online peer support for people with PD. Methods The method selected for this systematic review is narrative synthesis. A total of 6 databases were systematically searched in April 2020 for articles published between 1989 and 2020. The quality of the included studies was assessed using the Critical Appraisal Skills Programme qualitative research checklist and the Downs and Black quality checklist. Results A total of 10,987 unique articles were identified through a systematic database search. Of these 10,987 articles, 8 (0.07%) were included in this review. Of the 8 studies, 5 (63%) were of good or high quality, 2 (25%) were of medium or fair quality, and 1 (13%) study was of poor quality. Web-based platforms included discussion forums, a web-based virtual world, and Facebook groups. Most papers reported on text-based communication. The 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 the 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 health care professionals. Online peer support can be a solution for those who do not have access to an in-person support group or whose PD symptoms restrict them from travelling. 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.

A programme evaluation of ‘First Steps’: A peer-conceived, developed and led self-management intervention for people after a Parkinson's diagnosis

“…32 The use of peers has been advocated as a means to support selfefficacy 33 and peer-led self-management intervention have been promoted for their cost-effective potential. 9,11 Our findings that, with training, intervention fidelity was largely maintained across sites delivered by different peer facilitators is therefore promising. Involving careers was a central component of First Steps and improved self-management has been associated with informal support from 'carers'.…”

“…7,8 Peer support has also been found to produce psycho-social benefits, through sharing experiences, feelings of empowerment and social connectedness, all of which can help people with Parkinson's (PwP) develop new coping skills. 9 Peer-led interventions, by their nature, benefit from the credibility of the lived experience 10 and have been promoted as a cost-effective therapeutic opportunity to support others experiencing similar life circumstances. 11 While being peer led has the potential to add value to self-management interventions few studies have investigated this approach in Parkinson's.…”

Online peer support for people with Amyotrophic Lateral Sclerosis (ALS): a narrative synthesis systematic review

“…Additionally, this review may over represent positive aspects of online peer support, since people who are active on an online platform tend to be the ones who enjoy it, only one study reported on the negatives and potential challenges of online peer support for people with ALS ( 22 ), and we could not include views and experiences of those who are unable to use or stopped using online peer support. Finally, with the qualitative content analysis methodology the findings can still remain dependent on the researchers’ interpretation ( 19 ).…”

“…A systematic database search was conducted in April 2020 and updated in June 2022. The search was part of a wider appraisal of the literature on different chronic neurodegenerative conditions ( 19 , 20 ). Six databases were searched: CINAHL, Cochrane Library, Embase Medline, PsycINFO, Scopus, and Web of Science.…”

“…Research suggests that online peer support can be beneficial for people with chronic ( 18 ) or neurodegenerative ( 19 , 20 ) conditions. Research on online peer support for people with ALS is growing and suggests it could be beneficial (see Stewart Loane and D’Alessandro ( 21 ) and Caron and Light ( 22 ) for examples).…”