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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.
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.
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.
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.
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.
Parkinson disease (PD) is a chronic and progressive, neurodegenerative condition which is characterized by motor symptoms such as tremor, bradykinesia, and rigidity. In addition to the motor symptoms, many patients experience nonmotor symptoms, such as sleep disturbances, depression, and constipation [
PD significantly impacts the lives of people with the diagnosis and their families [
The psychosocial impact of PD can be discussed within the social health framework [
One way in which people can stay socially connected and thus improve their social health is through peer support [
Peer support can be provided in different ways, including web-based settings. The internet is an important source of health-related information and provides a platform for the creation and spread of web-based patient communities [
Web-based health communities and peer support in web-based settings is a rapidly growing field [
This narrative synthesis systematic review aimed to (1) explore the benefits and challenges of online peer support and (2) identify successful elements of online peer support for people with PD. In this review, the challenges cover things that make it more difficult for a person with PD to use online peer support. This can include aspects related to technology as well as PD-related challenges. Understanding the successful elements can be helpful in improving existing and developing new online peer support opportunities for people with PD as well as other conditions. Elements of online peer support were deemed successful if studies identified positive outcomes for the people with PD engaging in online peer support.
The method that was selected for this systematic review was narrative synthesis, using the procedures outlined by Popay et al [
A systematic database search was conducted in April 2020. The search strategy was developed with the help of 2 librarians and NC, who is an academic expert on online peer support. The initial search was part of a wider appraisal of the literature and included PD, MS, ALS, and Huntington disease. This paper will only present the results for patients with PD. A total of 6 databases were searched: CINAHL, Cochrane Library, EMBASE MEDLINE, PsycINFO, Scopus, and Web of Science. The keywords used for the searches are presented in
parkinson* disease
parkinson*
online
digital
web-based
app-based
internet
social media
peer
peer support
support group
social support
online support group
online support commun*
discussion forum*
bulletin board
chat room*
computer-mediated support
internet support group*
internet support commun*
online self-help
web-based support group*
web-based support commun*
The study population included people living with Parkinson disease or a blend of people living with Parkinson disease and caregivers.
The intervention included online peer support. For this review, online peer support was regarded as communication via the internet between peers in a web- or app-based environment that is designed to facilitate social contact using either an asynchronous or synchronous text- or text and video-based platform (eg, social media platforms, forums, or chat rooms).
Publication between 1989 and 2020.
Publication in peer-reviewed journals.
The study focused solely on caregiver perspectives.
The intervention included online peer support that was part of a program that also included in-person or telephone-based peer support.
The study did not report on peer-to-peer interactions. This exclusion criterion was added after initial screening. See the
Literature reviews, opinion pieces, protocols, editorials, or conference abstracts.
Papers written in a language other than English if a translation was not available.
The search results were imported into EndNote (Clarivate), after which all duplicates were removed. The primary reviewer (EVG) reviewed each title and abstract against the eligibility criteria. The primary reviewer consulted a second reviewer (ARL) on the titles and abstracts that she was unsure about. The title and abstract screening was followed by a full-text analysis of the potentially relevant papers. The initial full-text analysis was conducted by the primary reviewer. The same procedures as used for the title and abstract screening were followed. At this stage, the main reason for labeling a paper as unsure was that although the paper met the inclusion and exclusion criteria, it mainly focused on other outcomes (eg, quality of life) rather than peer-to-peer interactions. Following a discussion with a third reviewer (OM), it was decided to refine the exclusion criteria and add the criterion that papers could be excluded if they did not report on peer-to-peer interactions. The papers that were included up to that point were reassessed against the newly added exclusion criterion.
Following the study selection, the primary reviewer (EVG) extracted the data using standardized data extraction forms. Data were extracted on (1) study information, (2) study characteristics, (3) population characteristics, (4) characteristics of the web- or app-based platform, (5) outcomes, and (6) implications for future research. ARL provided a second independent review of the completed data extraction forms.
In all, 2 quality assessment tools were used to assess the risk of bias in individual studies. EVG completed the initial quality assessment and ARL provided a second independent review. For the assessment of the risk of bias in qualitative studies, the Critical Appraisal Skills Programme (CASP) qualitative research checklist was used [
For the CASP checklist, studies will be graded
The results section covers element 2 of a narrative synthesis: developing a preliminary synthesis. A web-based database search returned 10,987 unique titles and abstracts. After screening of the titles, abstracts, and full texts, of the 10,987 papers, 8 (0.07%) met the inclusion criteria for this review. An overview of the web-based database search and screening process can be found in
PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) diagram of the search and review process. PD: Parkinson disease.
An overview of the study characteristics is presented in
Study characteristics.
Study (year) | Aim or aims | Design (methods) | Intervention | Setting (country) | Study population | Eligibility criteria | Sample | QAa score | |||||||
Attard and Coulson [ |
Experiences of PDb forum users | Qualitative content analysis of posts on 4 discussion forums | On the internet, public, asynchronous discussion forum | Study conducted in the United Kingdom; data collected from the United States, Canada, and Australia | People living with PD | PD online support groups with a discussion forum | A total of 4 web-based communities; 1000 to 10,000 members per group; approximately 100 active members per group; age unknown (only what members decided to share); more women than men; 1013 messages (approximately 250 per group) | 9 (high) | |||||||
Bakke et al [ |
Interaction between professional and personal expertise in web-based PD community | Qualitative content analysis of posts on discussion forum | On the internet, public, asynchronous discussion forum | Unknown | People living with PD and carers | Physician-moderated forum for PD | In all, 1 web-based community: 107 threads, 409 individual comments; age and gender unknown (only what members decided to share) | 8 (high) | |||||||
Stewart Loane et al [ |
Social support and consumer value in web-based health communities | Qualitative content analysis of posts on discussion forum | On the internet, asynchronous discussion forum | Unknown | People with PD | Not reported | PD community: 35 members, 30 threads, 137 posts; age and gender not reported | 8 (high) | |||||||
Davis and Boellstorff [ |
Creativity of people with PD in a virtual world | Qualitative ethnographic web-based study in a virtual world | Second Life, a virtual world | Study conducted in the United States (based on ethics approval) | People living with PD | Members of a PD community in a virtual world (recruited through prior fieldwork in 2004) | A total of 2 people living with PD (1 male and 1 female); female patient with young onset PD, male patient with unknown onset | 7 (medium) | |||||||
Lieberman et al [ |
Impact of group composition and utility of computer-based text analysis in developing web-based groups | Pre-post measurement study comparing homogeneous and heterogeneous groups | A total of 6 web-based PD support groups delivered by professionals; weekly meetings for 20 weeks; 3 homogeneous groups (2 young onset, aged <60 years; 1 newly diagnosed in the last 2 years); 3 heterogeneous groups (mix of age and time since diagnosis) | Study conducted in the United States | People living with PD | People living with PD in California and attending web-based PD support groups, described in the study by Lieberman et al [ |
A total of 66 participants: 12 were unable to attend, 12 dropouts from homogenous groups, and 9 dropouts from heterogeneous groups; homogeneous groups: mean age 55.6 (SD 6.4) years, 77.8% female; heterogeneous groups: mean age 63.9 (SD 8.5) years, 46.2% female | 16 (good) | |||||||
Lieberman et al [ |
Willingness to participate in professionally led web-based groups; characteristics of participants; outcomes; group composition | Pilot study of effectiveness of professionally led web-based PD support groups | See above for Lieberman et al [ |
Study conducted in the United States | People living with PD | People living with PD in California | A total of 66 participants: 32 completed pre-post measurements; mean age 60.2 (SD 9.2) years, 68% male | 16 (good) | |||||||
Lieberman [ |
Characteristics of people with PD in online support groups and impact of fear on dropout rates | Pilot study | See above for Lieberman et al [ |
Study conducted in the United States | People living with PD | People living with PD | A total of 66 participants: 26 premature terminators and 40 continuers | 15 (fair) | |||||||
Martínez-Pérez et al [ |
Characteristics of Facebook groups and Twitter and their purposes and functions | Mixed methods survey and interviews with Facebook and Twitter users | Facebook and Twitter groups for PD | Unknown | People affected by PD | Facebook and Twitter focused on prevention, treatment, fund raising, cures, or general information | A total of 257 Facebook groups and 100 Twitter groups; no demographic information about group members was presented | 4 (low) |
aQA: quality assessment.
bPD: Parkinson disease.
In all studies, the mode of communication between the participants was text-based. In 50% (4/8) of studies, communication was asynchronous [
Of the 8 papers, 5 (63%) were of good or high quality, 2 (25%) were labeled medium or fair quality, and 1 (13%) paper was labeled as poor quality. In total, 63% (5/8) of papers were assessed using the CASP checklist. Of these5 papers, 3 (60%) were labeled as high quality [
An overview of the web-based platform characteristics is presented in
Web-based platform characteristics.
Study | Platform | Communication | Moderation |
Attard and Coulson [ |
Discussion forums | Text-based (asynchronous) | Yes |
Bakke et al [ |
WebMD (discussion forum) | Text-based (asynchronous) | Physician |
Loane et al [ |
Discussion forum | Text-based (asynchronous) | Unknown |
Davis and Boellstorff [ |
Virtual world | Verbal (synchronous) | Researchers |
Lieberman et al [ |
Online support group in chat room | Text-based (synchronous) | Professional |
Lieberman et al [ |
Online support group in chat room | Text-based (synchronous) | Professional |
Lieberman [ |
Online support group in chat room | Text-based (synchronous) | Professional |
Martínez-Pérez et al [ |
Facebook and Twitter | Text-based (asynchronous) | Unknown |
Study outcomes.
Study | Reported outcomes | Successful elements | Implications |
Attard and Coulson [ |
Positives: Social support, mutual understanding, and empathy Sharing experiences and advice Being part of a community, feeling less alone, and friendship Encouragement, positive thinking, and resilience Negatives: Lack of replies Symptoms restricting ability to use computer Lack of personal information Absence of nonverbal communication Members leaving could be distressing for other members |
Variety in experience, opinions, and advice Tailored advice to individual members in simple, nonmedical language Writing may help people to reflect on their situation and share things that are difficult to express face to face Anonymous nature may help members to discuss taboo topics more openly |
Explore the use of voice tools for people with PDa who have difficulties typing because of their symptoms Ask users directly about experiences Evaluate: accuracy of shared information impact of public nature of forum on members’ experience and concerns about privacy impact of the presence of professional moderators |
Bakke [ |
Role of professional expertise: Trust in physician’s opinion Acknowledging value of lived experience Role of lay expertise: Value and trust peer’s experiences. Mutual understanding and empathy Sharing personal experiences Reciprocity in answering questions and info sharing Referring to physician for advice Trust increased over time as members shared more |
Having a physician moderator Opportunity to directly ask questions to physician Physician using understanding and supportive tone Peer interaction, receiving advice from others going through something similar Forum design: clearly labeling posts and profiles of physicians may play a role in building trust |
For designing future forums: include badges and ratings to add validity to forum users’ contributions clear norms and values pinned to home page Moderation (professional or nonprofessional) |
Stewart Loane et al [ |
Information support most frequent, emotional support second. Initial posts often request information. Responses include answers and network and emotional support When sharing info, the posters receive positive feedback Spiritual support (expression of gratitude and feelings of connectedness) Ethics and morality: participants refusing to provide a diagnosis or medical advice Sharing poems and photos, humor, and banter. Sense of community |
People with PD developed value through discussion without needing health care professionals to be present. This is helpful for health care professionals and managers. Web-based discussion forums can remove barriers of information asymmetry and they create value and support for people with PD. |
Using different methods to directly explore members’ experiences Further explore what features of a web-based community promote a sense of community among members Explore a variety of web-based communities to identify whether specific features lead to greater value for members |
Davis and Boellstorff [ |
Users: discovered new ways of creativity continued creative parts of previous jobs which gave sense of purpose created art works in the platform to express what it feels like to have PD felt part of a community beyond PD learned new web-based skills |
The Second Life platform was used for offline work purposes Art works created in Second Life to express how it feels to have PD can be used for educational purposes It can be difficult to find age-appropriate in-person support groups for younger people with PD. Web-based platforms are accessible to people from different areas |
Explore the influence of factors such as gender, age, and young onset or late-onset PD on creativity Explore to what extent creativity is experienced as a community or an individual phenomenon |
Lieberman et al [ |
Quality of life of all groups improved Homogeneous groups: were more committed to their group had higher levels of commitment and attraction, and positive feelings in initial 5 meetings had significantly greater positive changes compared with heterogeneous groups |
Homogeneous groups based on age or time since diagnosis The internet makes it easier to create homogeneous groups, with access to a larger group of patients Lurking (reading posts but not creating own posts) can help with learning more about the group and finding similarities with other members |
Explore: the impact of writing in online peer support groups the impact of the absence of visual and auditory cues Internet support groups could target a more specific audience to enhance similarity between members Option for subgroups |
Lieberman et al [ |
Members of web-based groups: had lower average age were living with diagnosis for fewer years had better scores for depression and QoLb before and after the intervention felt freer to talk about certain topics compared with in-person groups Only homogeneous groups continued to stay in touch after intervention Most participants heard about the online support groups through the internet, only a small percentage through their physician. |
Homogeneous groups based on age or time since diagnosis |
Explore why people drop out of online support groups Explore opportunities of using voice recognition software |
Lieberman [ |
Participants who dropped out: had higher levels of anxiety did not score differently on depression, quality of life, and intensity of PD symptoms measurements |
Homogeneous groups showed significantly greater improvement compared with heterogeneous groups |
Explore what effective strategies are to prevent people from dropping out (eg, group structure, group composition, and preparation) |
Martínez-Pérez et al [ |
On Facebook, the majority was self-help groups On Twitter, the goals of people were to share information and create awareness There is a need for dedicated networking sites for peer support |
N/Ac |
Directly explore the experiences of users |
aPD: Parkinson disease.
bQoL: quality of life.
cN/A: not applicable.
One of the main characteristics of online and in-person peer support is social support [
Hi, I feel your fear and confusion.
[...] I am responding to you mainly because I wanted to tell you that you are NOT alone with your medication problems.
An example of informational support was provided in the work of Stewart Loane et al [
Does anyone ever experience freezing that lasts for hours on end? Please reply urgently.
Another member responded quickly, and the person who asked the question replied as follows:
[...] I tried several of the methods that you suggested and I have found one that works for me. I’m telling you it WORKS. I’m so excited! I have been so worried about what would happen if I were alone and I froze, and now I have a new freedom. Thank you.
Stewart Loane et al [
In the study by Lieberman et al [
Davis and Boellstorff [
In an internet group, you are much freer to talk about things that you probably wouldn’t in a F2F [face to face]. We got into discussion of sex [meds affecting sexual desire]. I know I wouldn’t have discussed in a F2F.
Of the 4 studies, only 1 (25%) reported on the challenges related to online peer support communities for people with PD—a qualitative content analysis of a PD discussion forum [
Furthermore, a study investigated the reasons why people would drop out of online PD support groups. Findings show that people who dropped out of the online peer support sessions had similar scores on depression, quality of life, and PD symptoms scales but had higher levels of anxiety before starting their participation [
Several successful elements of online peer support for people with PD have been identified in this review. First, writing may help people reflect on their own situation and share things that may be difficult to express face to face [
This section presents the summary and interpretation of the findings, covering narrative synthesis element 3: exploring relationships within and between studies. To the best of our knowledge, this is the first review to systematically synthesize the literature on online peer support for people with PD. This review shows that online peer support can be a way for people with PD to stay socially connected, share experiences, and exchange support for managing daily life with PD. Furthermore, this review identified the successful elements of online peer support.
The main positive elements related to peer support are reciprocity and social support [
There are also additional benefits to peer support in a web- or app-based setting. First, online peer support groups are available to a wide range of people, including those living in remote areas. For these people, it might be difficult to find in-person peer support groups in their local areas. PD symptoms may also impose additional challenges on people to travel to in-person peer support groups. Finally, the internet provides a form of anonymity. The anonymous nature of online peer support groups can make it easier for people to discuss taboo topics that are difficult to talk about in an in-person setting [
Only a few studies in this review provided information on users’ age or gender [
Qualitative content analysis was conducted in 38% (3/8) of papers included in this review. Although this method provides insights into what is happening and being shared on the platform, it does not provide information about members’ personal experiences. A number of aspects of this methodology remain unknown. First, the findings are highly dependent on researchers’ interpretations. Although researchers can interpret the intention or underlying meaning of a post, it is often not possible to directly contact the author of the post and ask if this was indeed how they intended their message. Similarly, it is often not possible to directly contact the intended receiver of the post to confirm if they perceived the message in the way that the researcher interpreted it. These challenges can be addressed using qualitative research methods to directly explore users’ experiences, as was done by Davis and Boellstorff [
Third, the research into online peer support presented in this review might show an overly positive image of the online peer support group, as people who are active on the platform and post messages are often the ones that enjoy being part of the community. In many web-based communities, people can come and go when they want, and those who have negative experiences can leave the group without giving a reason. This means that negative experiences and potentially harmful aspects of online peer support groups remain underresearched. A potential negative experience identified in this review is the lack of response to messages [
This section covers narrative synthesis element 4: assessing the robustness of the synthesis. This systematic review only included studies on written communication between people with PD on publicly available platforms. The database search did not identify any papers that included other platforms that can potentially be used for online peer support, such as videoconferencing platforms or social media platforms such as WhatsApp or Instagram. Therefore, the findings of this review are limited to the platforms covered in this review (discussion forums and Facebook groups) and cannot be generalized beyond these. Moreover, of the 8 studies, only 1 (13%) study has included findings on the potential challenges of online peer support [
For this review, no papers were identified that covered videoconferencing platforms that can be used for peer support; for example, Zoom, Skype, or Microsoft Teams. As these platforms have become more widely used since the COVID-19 pandemic, future research could explore how widely they are used among people with PD, and if and how they are used for peer support. Furthermore, research could focus on how people experience this form of online peer support and how it impacts their lives, as it is different in nature than what has been discussed in this review. More specifically, videoconferencing platforms include synchronous and verbal communication, often where one sees the other members. This reduces anonymity and adds a face-to-face element, in which nonverbal communication can be more prevalent.
Future research could also focus on using different methodologies for analyzing online peer support for people with PD. Direct assessment of users’ personal experiences was also recommended by some of the studies included in this review [
Peer support can be an extremely valuable source of social support for people with PD. More specifically, peer support can improve social health and support people with PD in living meaningful and satisfying lives, despite their condition. Sharing experiences with peers can improve feelings of empowerment and social connectedness and help people with PD develop new coping skills. Peer support is unique and cannot be replaced by family members, friends, or health care professionals who do not live with PD. The benefits of peer support are not limited to physical, in-person support groups but can be transferred via the internet. Online peer support is accessible to a wide range of people and is not limited by geographical barriers. This could make online peer support particularly suitable for those who do not have an in-person peer support group in their local area, or whose PD symptoms hinder them from traveling. However, research on the personal experiences of those who engage in online peer support and potential barriers to accessing online peer support remains limited. Future research could use qualitative methods, such as individual interviews, focus groups, and open-question surveys to explore these fields further.
Narrative synthesis methods.
Quality assessment tables.
amyotrophic lateral sclerosis
Critical Appraisal Skills Programme
multiple sclerosis
Parkinson disease
Preferred Reporting Items for Systematic Reviews and Meta-Analyses
The authors would like to thank Emma Young (deputy head of knowledge services) and Naomi Thorpe (senior information specialist) from the Library and Knowledge Services at Nottinghamshire Healthcare National Health Service Foundation Trust for their support in defining the search strategy and running the pilot searches for this review. The research presented in this paper was conducted as part of the Marie Curie Innovative Training Network action, H2020-MSCA-ITN-2018, under grant agreement 813196.
EVG conducted the review and narrative synthesis and was the lead in writing of the manuscript. ARL provided a second review during all stages. OM was consulted as a third reviewer during the screening process. NC provided support for developing the search strategy. OM and MO provided feedback regarding the narrative synthesis process. All authors contributed to the writing of the manuscript.
None declared.