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- JMIR Publications
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- Copyright © The Author(s). Licensed under Creative Commons Attribution cc-by 4.0
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- 10.2196/35425
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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. (JMIR Aging 2022;5(3):e35425) doi: 10.2196/35425 https://aging.jmir.org/2022/3/e35425 JMIR Aging 2022 | vol. 5 | iss. 3 | e35425 | p. 1 (page number not for citation purposes) XSL FO RenderX JMIR AGING Gerritzen et al KEYWORDS Parkinson disease; web-based health community; online peer support; narrative synthesis; systematic review One way in which people can stay socially connected and thus Introduction improve their social health is through peer support [13]. Peer support can be defined as the exchange of support between those Background (also referred to as peers) who share a similar health condition Parkinson disease (PD) is a chronic and progressive, or life experience [14,15]. Peers can provide one another with neurodegenerative condition which is characterized by motor social support; more specifically, there is reciprocity of support, symptoms such as tremor, bradykinesia, and rigidity. In addition meaning that people can develop a relationship in which they to the motor symptoms, many patients experience nonmotor can both receive and provide support. This can increase feelings symptoms, such as sleep disturbances, depression, and of empowerment [16,17]. Furthermore, peers can share constipation [1]. It was estimated that in 2016, 6.1 million people experiential knowledge, which includes information and had PD globally [2]. People with PD typically start developing perspectives that people have because of their personal symptoms in their 60s; however, it can also occur at a younger experiences of living with a certain condition [17]. These age [3]. In 2018, in the United Kingdom, >145,000 people were elements are unique to peer support and cannot be provided by living with PD, of whom 19,690 were younger than 65 years health care professionals or others who are not living with PD [4]. [14,15]. PD significantly impacts the lives of people with the diagnosis Peer support can be provided in different ways, including and their families [5,6]. Owing to its chronic and web-based settings. The internet is an important source of neurodegenerative nature, people with PD need ongoing care health-related information and provides a platform for the and support [6]. In addition to the physical symptoms associated creation and spread of web-based patient communities [16]. with PD, receiving the diagnosis and living with the condition Since the 1990s, the number of web-based patient communities also has an emotional impact. This includes anxiety for the for a variety of health conditions has been increasing [18,19]. future, difficulties in managing the condition in daily life, and Such communities can function as self-help groups in which the impact on the family [7]. PD can affect people’s social lives members share experiences and emotions and provide mutual and how they are involved in different roles, such as their role support and empathy [16,20,21]. Some of the advantages of within the family, social circles, or at work. Receiving a online peer support compared with in-person support groups diagnosis of PD and living with the condition can result in include that it overcomes geographical barriers [19,22]; provides withdrawal from such social roles, increasing the risk of social a form of anonymity, which can be particularly suitable for isolation and loneliness [8]. people with stigmatized conditions [22,23]; and online peer support can be readily available at any time of the day when The psychosocial impact of PD can be discussed within the needed [19,22]. Research has been conducted on online peer social health framework [9,10]. In this framework, health is support communities for a variety of health conditions, including viewed in the social domain and includes three dimensions: (1) chronic conditions such as multiple sclerosis (MS) [24,25], HIV being able to fulfill potential and obligations, (2) managing life or AIDS [26,27], and amyotrophic lateral sclerosis (ALS) with some level of independence despite living with a health [28,29]. The review by Kingod et al [13] shows that online peer condition, and (3) being able to participate in social activities support communities can offer people with chronic conditions and work. When focusing on coping strategies and finding a emotional, social, and practical support in managing their balance between limitations and one’s abilities, people can condition in their daily lives. Chronic conditions covered by successfully adapt to living with a chronic condition and still this review include type 1 diabetes, HIV or AIDS, and chronic live meaningful and satisfying lives [10]. Dröes et al [9] pain [13]. discussed how the concept of social health relates to people living with dementia, suggesting that it is possible for people Web-based health communities and peer support in web-based with dementia to still participate in the 3 dimensions of social settings is a rapidly growing field [16,18,19]. Especially during health and perceive a good quality of life. Within the PD context, the COVID-19 pandemic and national lockdowns, connecting Vescovelli et al [11] touch upon the social health framework with others on the web has become increasingly important. by emphasizing the importance of social support for the However, knowledge of the long-term effects of online peer well-being of people with PD. Social support is a term used to support, how it impacts users’ health and self-management, and describe receiving care and help from others. It is often linked what particular elements make it useful and meaningful need to social connectedness and being part of a social network [12]. further research [19,30]. Research into online peer support for In their systematic reviews, Vescovelli et al [11] found that for people affected by PD is also growing [31,32]; however, to the people with PD, social support is associated with greater social best of our knowledge, there is no systematic synthesis of this inclusion and opportunities to remain involved with work, research yet. supporting people to keep living meaningful and satisfying lives Objectives despite their PD. Thus, social support could improve the social health of people with PD [11]. However, despite these findings, This narrative synthesis systematic review aimed to (1) explore Hellqvist et al [8] and Vescovelli et al [11] conclude that the the benefits and challenges of online peer support and (2) psychosocial impact of PD is still underresearched. identify successful elements of online peer support for people https://aging.jmir.org/2022/3/e35425 JMIR Aging 2022 | vol. 5 | iss. 3 | e35425 | p. 2 (page number not for citation purposes) XSL FO RenderX JMIR AGING Gerritzen et al with PD. In this review, the challenges cover things that make [33]. Furthermore, this review followed the PRISMA (Preferred it more difficult for a person with PD to use online peer support. Reporting Items for Systematic Reviews and Meta-Analyses) This can include aspects related to technology as well as 2020 guidelines [34]. More details on the narrative synthesis PD-related challenges. Understanding the successful elements methods can be found in Multimedia Appendix 1 can be helpful in improving existing and developing new online [9,10,14,16,33,35]. peer support opportunities for people with PD as well as other Search Strategy conditions. Elements of online peer support were deemed A systematic database search was conducted in April 2020. The successful if studies identified positive outcomes for the people search strategy was developed with the help of 2 librarians and with PD engaging in online peer support. NC, who is an academic expert on online peer support. The initial search was part of a wider appraisal of the literature and Methods included PD, MS, ALS, and Huntington disease. This paper Narrative Synthesis will only present the results for patients with PD. A total of 6 databases were searched: CINAHL, Cochrane Library, The method that was selected for this systematic review was EMBASE MEDLINE, PsycINFO, Scopus, and Web of Science. narrative synthesis, using the procedures outlined by Popay et The keywords used for the searches are presented in Textbox al [33]. This entails including the following elements: (1) theory 1. A search filter for the year of publication, 1989 to 2020, was development, (2) development of a preliminary synthesis, (3) applied. This was because the World Wide Web was introduced exploration of relationships in the data, and (4) assessment of in 1989. No filters on the study design were applied. Finally, robustness of the synthesis. With a narrative synthesis, the the reference lists of the included papers were searched presentation of the findings is mainly words- and text-based, manually. This did not result in any new papers being added. and it is a useful method to identify elements of best practice Textbox 1. Search terms. Search term 1 parkinson* disease parkinson* Search term 2 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* https://aging.jmir.org/2022/3/e35425 JMIR Aging 2022 | vol. 5 | iss. 3 | e35425 | p. 3 (page number not for citation purposes) XSL FO RenderX JMIR AGING Gerritzen et al Textbox 2 lists the inclusion and criteria followed while selecting papers for this review. Textbox 2. Inclusion and exclusion criteria. Inclusion criteria 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. Exclusion criteria 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 Study Selection section for more details. Literature reviews, opinion pieces, protocols, editorials, or conference abstracts. Papers written in a language other than English if a translation was not available. assessment and ARL provided a second independent review. Study Selection For the assessment of the risk of bias in qualitative studies, the The search results were imported into EndNote (Clarivate), after Critical Appraisal Skills Programme (CASP) qualitative research which all duplicates were removed. The primary reviewer (EVG) checklist was used [36]. This checklist consists of 10 questions reviewed each title and abstract against the eligibility criteria. related to “rigour, credibility and relevance” [37]. For studies The primary reviewer consulted a second reviewer (ARL) on that could not be assessed using the CASP checklist, the Downs the titles and abstracts that she was unsure about. The title and and Black quality checklist was used. This tool consists of 27 abstract screening was followed by a full-text analysis of the items and is suitable for both randomized and nonrandomized potentially relevant papers. The initial full-text analysis was studies [38]. Both the CASP checklist and the Downs and Black conducted by the primary reviewer. The same procedures as quality checklist were recommended by the Centre for Reviews used for the title and abstract screening were followed. At this and Dissemination guidance for undertaking reviews in health stage, the main reason for labeling a paper as unsure was that care [37] and have been successfully used in previous systematic although the paper met the inclusion and exclusion criteria, it reviews [39,40]. mainly focused on other outcomes (eg, quality of life) rather For the CASP checklist, studies will be graded high, if they met than peer-to-peer interactions. Following a discussion with a or partially met 8 to 10 items; medium, if they met or partially third reviewer (OM), it was decided to refine the exclusion met 5 to 7 items; and low, if they met or partially met 0 to 4 criteria and add the criterion that papers could be excluded if items [41]. For the Downs and Black quality checklist, papers they did not report on peer-to-peer interactions. The papers that are labeled excellent, if they have 24 to 28 points; good, if they were included up to that point were reassessed against the newly have 19 to 23 points; fair, with 14 to 18 points; and poor, when added exclusion criterion. they have less than 14 points [42]. Data Extraction Results Following the study selection, the primary reviewer (EVG) extracted the data using standardized data extraction forms. Overview Data were extracted on (1) study information, (2) study characteristics, (3) population characteristics, (4) characteristics The results section covers element 2 of a narrative synthesis: of the web- or app-based platform, (5) outcomes, and (6) developing a preliminary synthesis. A web-based database implications for future research. ARL provided a second search returned 10,987 unique titles and abstracts. After independent review of the completed data extraction forms. screening of the titles, abstracts, and full texts, of the 10,987 papers, 8 (0.07%) met the inclusion criteria for this review. An Quality Assessment overview of the web-based database search and screening In all, 2 quality assessment tools were used to assess the risk of process can be found in Figure 1. bias in individual studies. EVG completed the initial quality https://aging.jmir.org/2022/3/e35425 JMIR Aging 2022 | vol. 5 | iss. 3 | e35425 | p. 4 (page number not for citation purposes) XSL FO RenderX JMIR AGING Gerritzen et al Figure 1. PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) diagram of the search and review process. PD: Parkinson disease. a discussion forum [31,32,43], 3 (38%) papers reported the Study Characteristics findings of a pilot study [44-46], 1 (13%) paper conducted an An overview of the study characteristics is presented in Table ethnographic study in a virtual world [47], and 1 (13%) paper 1. This review includes a variety of methods. Of the 8 papers, conducted a survey and interviews [48]. 3 (38%) papers used a qualitative content analysis of posts on https://aging.jmir.org/2022/3/e35425 JMIR Aging 2022 | vol. 5 | iss. 3 | e35425 | p. 5 (page number not for citation purposes) XSL FO RenderX JMIR AGING Gerritzen et al Table 1. Study characteristics. Study (year) Aim or aims Design (methods) Intervention Setting Study popula- Eligibility Sample QA score (country) tion criteria Attard and Experiences of Qualitative con- On the internet, Study con- People living PD online A total of 4 web- 9 (high) Coulson [31] tent analysis of public, asyn- ducted in the with PD support based communi- PD forum (2012) posts on 4 discus- chronous discus- United King- groups with ties; 1000 to users sion forums sion forum dom; data a discussion 10,000 members collected forum per group; approx- from the imately 100 ac- United tive members per States, Cana- group; age un- da, and Aus- known (only tralia what members decided to share); more women than men; 1013 messages (approx- imately 250 per group) Bakke et al Interaction be- Qualitative con- On the internet, Unknown People living Physician- In all, 1 web- 8 (high) [32] (2018) tween profes- tent analysis of public, asyn- with PD and moderated based communi- sional and per- posts on discus- chronous discus- carers forum for ty: 107 threads, sonal expertise sion forum sion forum PD 409 individual in web-based comments; age PD community and gender un- known (only what members decided to share) Stewart Social support Qualitative con- On the internet, Unknown People with Not reported PD community: 8 (high) Loane et al and consumer tent analysis of asynchronous PD 35 members, 30 [43] (2014) value in web- posts on discus- discussion fo- threads, 137 based health sion forum rum posts; age and communities gender not report- ed Davis and Creativity of Qualitative Second Life, a Study con- People living Members of A total of 2 peo- 7 (medi- Boellstorff people with PD ethnographic virtual world ducted in the with PD a PD commu- ple living with um) [47] (2016) in a virtual web-based study United nity in a vir- PD (1 male and 1 world in a virtual world States (based tual world female); female on ethics ap- (recruited patient with proval) through prior young onset PD, fieldwork in male patient with 2004) unknown onset Lieberman et Impact of group Pre-post measure- A total of 6 Study con- People living People living A total of 66 par- 16 (good) al [46] composition ment study com- web-based PD ducted in the with PD with PD in ticipants: 12 were (2005) and utility of paring homoge- support groups United California unable to attend, computer-based neous and hetero- delivered by States and attend- 12 dropouts from text analysis in geneous groups professionals; ing web- homogenous developing weekly meet- based PD groups, and 9 web-based ings for 20 support dropouts from groups weeks; 3 homo- groups, de- heterogeneous geneous groups scribed in groups; homoge- (2 young onset, the study by neous groups: aged <60 years; Lieberman et mean age 55.6 1 newly diag- al [46] (SD 6.4) years, nosed in the last 77.8% female; 2 years); 3 het- heterogeneous erogeneous groups: mean age groups (mix of 63.9 (SD 8.5) age and time years, 46.2% fe- since diagnosis) male https://aging.jmir.org/2022/3/e35425 JMIR Aging 2022 | vol. 5 | iss. 3 | e35425 | p. 6 (page number not for citation purposes) XSL FO RenderX JMIR AGING Gerritzen et al Study (year) Aim or aims Design (methods) Intervention Setting Study popula- Eligibility Sample QA score (country) tion criteria Lieberman et Willingness to Pilot study of ef- See above for Study con- People living People living A total of 66 par- 16 (good) al [45] participate in fectiveness of Lieberman et al ducted in the with PD with PD in ticipants: 32 (2006) (same professionally professionally led [46] United California completed pre- population led web-based web-based PD States post measure- [46]) groups; charac- support groups ments; mean age teristics of par- 60.2 (SD 9.2) ticipants; out- years, 68% male comes; group composition Lieberman Characteristics Pilot study See above for Study con- People living People living A total of 66 par- 15 (fair) [44] (2007; of people with Lieberman et al ducted in the with PD with PD ticipants: 26 pre- same popula- PD in online [46]; weekly United mature termina- tion [46]) support groups meetings, 90 States tors and 40 contin- and impact of min per meet- uers fear on dropout ing, 25 weeks; rates premature termi- nation: attend- ing <10 meet- ings Martínez- Characteristics Mixed methods Facebook and Unknown People affect- Facebook A total of 257 4 (low) Pérez et al of Facebook survey and inter- Twitter groups ed by PD and Twitter Facebook groups [48] (2014) groups and views with Face- for PD focused on and 100 Twitter Twitter and book and Twitter prevention, groups; no demo- their purposes users treatment, graphic informa- and functions fund raising, tion about group cures, or members was general infor- presented mation QA: quality assessment. PD: Parkinson disease. labeled as poor quality. In total, 63% (5/8) of papers were Summary of Interventions assessed using the CASP checklist. Of these5 papers, 3 (60%) In all studies, the mode of communication between the were labeled as high quality [31,32,43], 1 (20%) as medium participants was text-based. In 50% (4/8) of studies, [47], and 1 (20%) was assessed to be of low quality [48]. The communication was asynchronous [31,32,43,48], meaning that 38% (3/8) of remaining papers were assessed using the Downs participants did not necessarily communicate with each other and Black quality checklist. Of these 3 papers, 2 (67%) were in real time. This is one of the characteristics of discussion labeled as good [45,46] and 1 (33%) was labeled as fair [44]. forums, where people can post a message and others can respond An overview of the CASP checklist, Downs and Black quality at a time that is convenient for them. A total of 50% (4/8) of checklist, and the scores for each study can be found in studies [44-47] used real-time communication (synchronous). Multimedia Appendix 2 [31,32,43-48]. Other than in a study [48], all online peer support communities Key Findings analyzed in this review were moderated. This means that one or multiple people either guided the discussion or monitored Overview posts. Although 75% (6/8) of studies only included people living An overview of the web-based platform characteristics is with a PD diagnosis [31,43-47], 25% (2/8) of studies included presented in Table 2. An overview of the study outcomes is both caregivers and people with a PD diagnosis [32,48]. presented in Table 3. Quality Assessment 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 https://aging.jmir.org/2022/3/e35425 JMIR Aging 2022 | vol. 5 | iss. 3 | e35425 | p. 7 (page number not for citation purposes) XSL FO RenderX JMIR AGING Gerritzen et al Table 2. Web-based platform characteristics. Study Platform Communication Moderation Attard and Coulson [31] Discussion forums Text-based (asynchronous) Yes Bakke et al [32] WebMD (discussion forum) Text-based (asynchronous) Physician Loane et al [43] Discussion forum Text-based (asynchronous) Unknown Davis and Boellstorff [47] Virtual world Verbal (synchronous) Researchers Lieberman et al [46] Online support group in chat room Text-based (synchronous) Professional Lieberman et al [45] Online support group in chat room Text-based (synchronous) Professional Lieberman [44] Online support group in chat room Text-based (synchronous) Professional Martínez-Pérez et al [48] Facebook and Twitter Text-based (asynchronous) Unknown https://aging.jmir.org/2022/3/e35425 JMIR Aging 2022 | vol. 5 | iss. 3 | e35425 | p. 8 (page number not for citation purposes) XSL FO RenderX JMIR AGING Gerritzen et al Table 3. Study outcomes. Study Reported outcomes Successful elements Implications Attard and Coulson Positives: Variety in experience, opinions, and Explore the use of voice tools for • • • [31] Social support, mutual understand- advice people with PD who have difficul- ing, and empathy Tailored advice to individual mem- ties typing because of their symp- Sharing experiences and advice bers in simple, nonmedical lan- toms Being part of a community, feel- guage Ask users directly about experi- ing less alone, and friendship Writing may help people to reflect ences Encouragement, positive think- on their situation and share things Evaluate: ing, and resilience that are difficult to express face to accuracy of shared informa- face tion Negatives: Anonymous nature may help mem- impact of public nature of fo- Lack of replies bers to discuss taboo topics more rum on members’ experience Symptoms restricting ability to openly and concerns about privacy use computer impact of the presence of pro- Lack of personal information fessional moderators Absence of nonverbal communi- cation Members leaving could be dis- tressing for other members Bakke [32] Role of professional expertise: Having a physician moderator For designing future forums: • • • Trust in physician’s opinion Opportunity to directly ask include badges and ratings to • • • Acknowledging value of lived questions to physician add validity to forum users’ experience Physician using understanding contributions and supportive tone clear norms and values pinned Role of lay expertise: to home page Value and trust peer’s experi- Peer interaction, receiving advice • • ences. Mutual understanding and from others going through some- Moderation (professional or nonpro- empathy thing similar fessional) Sharing personal experiences Forum design: clearly labeling posts • • Reciprocity in answering ques- and profiles of physicians may play tions and info sharing a role in building trust Referring to physician for advice Trust increased over time as members shared more Stewart Loane et al Information support most frequent, People with PD developed value Using different methods to directly • • • [43] emotional support second. through discussion without needing explore members’ experiences Initial posts often request informa- health care professionals to be Further explore what features of a • • tion. Responses include answers present. This is helpful for health web-based community promote a and network and emotional sup- care professionals and managers. sense of community among mem- port Web-based discussion forums can bers When sharing info, the posters remove barriers of information Explore a variety of web-based • • receive positive feedback asymmetry and they create value communities to identify whether Spiritual support (expression of and support for people with PD. specific features lead to greater gratitude and feelings of connect- value for members edness) Ethics and morality: participants refusing to provide a diagnosis or medical advice Sharing poems and photos, hu- mor, and banter. Sense of commu- nity Davis and Boell- Users: The Second Life platform was used Explore the influence of factors • • • storff [47] discovered new ways of creativity for offline work purposes such as gender, age, and young on- continued creative parts of previ- Art works created in Second Life set or late-onset PD on creativity • • ous jobs which gave sense of to express how it feels to have PD Explore to what extent creativity is purpose can be used for educational purpos- experienced as a community or an created art works in the platform es individual phenomenon to express what it feels like to It can be difficult to find age-appro- have PD priate in-person support groups for felt part of a community beyond younger people with PD. Web- PD based platforms are accessible to learned new web-based skills people from different areas https://aging.jmir.org/2022/3/e35425 JMIR Aging 2022 | vol. 5 | iss. 3 | e35425 | p. 9 (page number not for citation purposes) XSL FO RenderX JMIR AGING Gerritzen et al Study Reported outcomes Successful elements Implications Lieberman et al Quality of life of all groups improved Homogeneous groups based on age Explore: • • • [46] Homogeneous groups: or time since diagnosis the impact of writing in online • • were more committed to their The internet makes it easier to cre- peer support groups • • group ate homogeneous groups, with ac- the impact of the absence of had higher levels of commitment cess to a larger group of patients visual and auditory cues and attraction, and positive feel- Lurking (reading posts but not cre- Internet support groups could target ings in initial 5 meetings ating own posts) can help with a more specific audience to enhance had significantly greater positive learning more about the group and similarity between members changes compared with heteroge- finding similarities with other neous groups members Option for subgroups Lieberman et al Members of web-based groups: Homogeneous groups based on age Explore why people drop out of • • • [45] had lower average age or time since diagnosis online support groups were living with diagnosis for Explore opportunities of using • • fewer years voice recognition software had better scores for depression and QoL before and after the in- tervention 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 on- line support groups through the inter- net, only a small percentage through their physician. Lieberman [44] Participants who dropped out: Homogeneous groups showed sig- Explore what effective strategies • • • had higher levels of anxiety nificantly greater improvement are to prevent people from dropping did not score differently on de- compared with heterogeneous out (eg, group structure, group pression, quality of life, and inten- groups composition, and preparation) sity of PD symptoms measure- ments Martínez-Pérez et On Facebook, the majority was self- Directly explore the experiences of • • • N/A al [48] help groups users On Twitter, the goals of people were to share information and create awareness There is a need for dedicated network- ing sites for peer support PD: Parkinson disease. QoL: quality of life. N/A: not applicable. Hi, I feel your fear and confusion. Social Support [...] I am responding to you mainly because I wanted One of the main characteristics of online and in-person peer to tell you that you are NOT alone with your support is social support [14,16]. This finding also came forward medication problems. in this review, and studies reported on different elements of An example of informational support was provided in the work social support. Through content analysis of discussion forums, of Stewart Loane et al [43]. A person asked the following: studies [31,32,43] observed mutual understanding and empathy among the members of the forum and an exchange of different Does anyone ever experience freezing that lasts for types of support. This was observed through members sharing hours on end? Please reply urgently. personal experiences and both providing and receiving support. Another member responded quickly, and the person who asked The most frequently observed types of support were emotional the question replied as follows: and informational support. Examples of emotional support and [...] I tried several of the methods that you suggested expressions of understanding and empathy from the work of and I have found one that works for me. I’m telling Bakke [32] are as follows: you it WORKS. I’m so excited! I have been so worried https://aging.jmir.org/2022/3/e35425 JMIR Aging 2022 | vol. 5 | iss. 3 | e35425 | p. 10 (page number not for citation purposes) XSL FO RenderX JMIR AGING Gerritzen et al about what would happen if I were alone and I froze, some posts showed that, at times, it was difficult for people and now I have a new freedom. Thank you. with PD to use a computer or other types of technology because of their symptoms: “Sometimes my PD prevents my fingers Stewart Loane et al [43] observed that new posts on the forum from being able to type. At other times they work fine, but my often started with a request for information and that in their brain is a blob!” [31]. responses, other members shared information, personal experiences, and emotional support. Overall, the authors of all Furthermore, a study investigated the reasons why people would 3 papers observed a real sense of community, belonging, and drop out of online PD support groups. Findings show that people friendship on each of the platforms, which can be described as who dropped out of the online peer support sessions had similar network support [43]. An example that illustrates this type of scores on depression, quality of life, and PD symptoms scales support was seen in the work of Attard and Coulson [31]: “I am but had higher levels of anxiety before starting their participation glad I found this forum, makes me feel like I am not alone.” [44]. In the study by Lieberman et al [46], the authors researched the Successful Elements of Online Peer Support impact of group composition. Participants were divided into Several successful elements of online peer support for people homogeneous (based on age or time since diagnosis) and with PD have been identified in this review. First, writing may heterogeneous groups. Although all groups improved on quality help people reflect on their own situation and share things that of life scores, participants in the homogeneous groups showed may be difficult to express face to face [31]. Second, having significant improvement in depression and PD symptoms homogeneous groups based on age or time since diagnosis leads compared with heterogeneous groups. These findings suggest to increased benefits for members [44-46]. The findings of that similarities between group members can improve the Lieberman et al [46] show that people who participated in the outcomes of peer support [46]. homogeneous groups felt more committed to their group and Benefits of Online Peer Support had more positive feelings about the group during the first 5 meetings. Furthermore, only members from the homogeneous Davis and Boellstorff [47] observed how 2 people with PD used groups continued to stay in touch after the intervention ended the Second Life web-based platform. Through their ethnographic [45]. Finally, although most studies included in this review study they found that both participants were able to express analyzed moderated platforms, the study by Bakke [32] themselves creatively on the platform. Through their web-based specifically looked at a physician-moderated platform. The artworks and creative expressions, both people with PD were author observed that members appreciated the opportunity to able to continue with creative parts of their previous jobs, and ask questions directly to a professional. A helpful feature in the they also used art to express what it feels like to have PD. A forum design was clearly labeling the physician’s comments sense of community was also observed here. Furthermore, one [32]. of the participants was living in a rural area, where it was difficult to find in-person support groups. In this case, the Discussion web-based platform provided a way to connect with other people with PD [47]. The work of Lieberman et al [45] showed that Principal Findings people with PD who participated in web-based groups felt freer This section presents the summary and interpretation of the to talk about certain topics compared with in-person groups. A findings, covering narrative synthesis element 3: exploring participant shared the following [45]: relationships within and between studies. To the best of our In an internet group, you are much freer to talk about knowledge, this is the first review to systematically synthesize things that you probably wouldn’t in a F2F [face to the literature on online peer support for people with PD. This face]. We got into discussion of sex [meds affecting review shows that online peer support can be a way for people sexual desire]. I know I wouldn’t have discussed in with PD to stay socially connected, share experiences, and a F2F. exchange support for managing daily life with PD. Furthermore, this review identified the successful elements of online peer Challenges of Online Peer Support support. Of the 4 studies, only 1 (25%) reported on the challenges related to online peer support communities for people with PD—a Benefits and Successful Elements of Online Peer qualitative content analysis of a PD discussion forum [31]. Support Challenges were related to online peer support and the use of Overview technology in general. Some were related to the behavior of group members, such as a lack of replies to posts and group The main positive elements related to peer support are members leaving without warning. This could be distressing reciprocity and social support [14,16]. This finding has also for other members. An example that illustrates this is, “If you been identified in this review, indicating that the benefits of are out there please respond. I have searched the net for you peer support are not limited to in-person settings. Despite not dear friend and I would like to talk to you again” [31]. Other knowing each other in person and not being physically close, challenges were more related to the nature of discussion forums this review shows that people with PD can find emotional and web-based support in general, such as the absence of support, mutual understanding, and empathy through web-based nonverbal communication, which at times could lead to communities. Moreover, people with PD can build new misunderstandings, and the lack of personal information. Finally, friendships and expand their social networks. People can share https://aging.jmir.org/2022/3/e35425 JMIR Aging 2022 | vol. 5 | iss. 3 | e35425 | p. 11 (page number not for citation purposes) XSL FO RenderX JMIR AGING Gerritzen et al their personal experiences and provide and receive informational Impact of Research Methods support and advice from others in similar situations. For Qualitative content analysis was conducted in 38% (3/8) of example, people can share experiences with medication or how papers included in this review. Although this method provides they manage PD symptoms in daily life. This is based on insights into what is happening and being shared on the platform, experiential knowledge, which is a combination of unique it does not provide information about members’ personal knowledge and expertise that people have because of their experiences. A number of aspects of this methodology remain personal experiences of living with PD [17]. Sharing knowledge unknown. First, the findings are highly dependent on and learning from others’ experience can contribute to researchers’ interpretations. Although researchers can interpret developing coping skills for living with PD. This, in turn, can the intention or underlying meaning of a post, it is often not support people in living meaningful and satisfying lives despite possible to directly contact the author of the post and ask if this having PD [10]. Similar findings have been published on online was indeed how they intended their message. Similarly, it is peer support groups for other conditions, including people with often not possible to directly contact the intended receiver of chronic illnesses [13] and Huntington disease [49,50]. This the post to confirm if they perceived the message in the way review supports previous research in that the benefits of peer that the researcher interpreted it. These challenges can be support are not limited to a physical, in-person setting but can addressed using qualitative research methods to directly explore also be transferred via the internet. Elements that can make users’ experiences, as was done by Davis and Boellstorff [47] online peer support successful include having homogeneous and Martínez-Pérez et al [48], or by setting up an online peer groups [44-46] and having the option for participants to directly support intervention and performing pre-post measurements, ask questions to a physician [32]. However, different people as was done by Lieberman et al [45]. Second, on discussion have different needs and preferences. Some who engage in forums and social media pages, all group members can often online support may still miss in-person human interactions such read all posts (besides private messages). This means that not as having a cup of tea together or being able to give someone only the intended receiver but also other members can read the a hug when they are upset [51]. posts. Many people can read it, but not everyone will respond to or participate in the discussion. When using a content analysis There are also additional benefits to peer support in a web- or method, it remains unknown how people who only read the app-based setting. First, online peer support groups are available posts but not interact, also called lurkers, interpret the message to a wide range of people, including those living in remote areas. and experience it [23]. Steadman and Pretorius [52] explored For these people, it might be difficult to find in-person peer the impact of a Facebook group for people with MS on nonactive support groups in their local areas. PD symptoms may also members. During individual interviews, people expressed that impose additional challenges on people to travel to in-person they still experienced social support despite not being actively peer support groups. Finally, the internet provides a form of involved in the discussions [52]. anonymity. The anonymous nature of online peer support groups can make it easier for people to discuss taboo topics that are Third, the research into online peer support presented in this difficult to talk about in an in-person setting [23,45]. review might show an overly positive image of the online peer support group, as people who are active on the platform and Challenges of Online Peer Support post messages are often the ones that enjoy being part of the Only a few studies in this review provided information on users’ community. In many web-based communities, people can come age or gender [44,46,47], whereas for the other studies, it was and go when they want, and those who have negative unknown. Information on group composition and personal experiences can leave the group without giving a reason. This information, such as age, gender, or time since diagnosis, is means that negative experiences and potentially harmful aspects often unknown. A lack of such information can make it difficult of online peer support groups remain underresearched. A to determine the extent to which members have things in potential negative experience identified in this review is the common. This also highlights the challenge for people with PD lack of response to messages [31], which has also been identified in finding more specific peer support groups, such as young in another systematic review [23]. The authors stated that new onset PD groups or groups for people who are newly diagnosed. members of an online peer support group are especially at risk The importance of similarity between group members was of withdrawing after not receiving a response to their messages. presented in the work of Lieberman et al [46]. These findings The reason for this could be that new members may be more highlight a key element of peer support and something that psychologically vulnerable and have certain expectations when defines whether someone is a peer: sharing similarities [14]. A joining the online peer support group [23]. When selecting a lack of personal information was mostly the case for papers specific platform for research on online peer support, there is a analyzing discussion forums, which could be because of the risk of presenting an overly positive view of the platform and anonymous nature of such forums. The studies in this review the experiences of its users. An alternative could be to explore that analyzed a discussion forum all used a publicly accessible the experiences with and opinions on online peer support in the platform. Reasons for using publicly accessible forums include wider PD community, for example, through a survey. ethical issues regarding informed consent and respect for members’ privacy [31]. It could be that because of the public Limitations nature, either members did not have the option to share more This section covers narrative synthesis element 4: assessing the personal information or members chose not to share that robustness of the synthesis. This systematic review only included information [19]. studies on written communication between people with PD on https://aging.jmir.org/2022/3/e35425 JMIR Aging 2022 | vol. 5 | iss. 3 | e35425 | p. 12 (page number not for citation purposes) XSL FO RenderX JMIR AGING Gerritzen et al publicly available platforms. The database search did not PD. Direct assessment of users’ personal experiences was also identify any papers that included other platforms that can recommended by some of the studies included in this review potentially be used for online peer support, such as [31,43,48]. Examples of these methods include individual videoconferencing platforms or social media platforms such as interviews, focus groups, or surveys. It is necessary to learn WhatsApp or Instagram. Therefore, the findings of this review how people with PD truly experience being part of an online are limited to the platforms covered in this review (discussion peer support community and what the impact is on their daily forums and Facebook groups) and cannot be generalized beyond lives. Furthermore, future research is needed to explore potential these. Moreover, of the 8 studies, only 1 (13%) study has negative experiences people may have with online peer support, included findings on the potential challenges of online peer as these are currently underresearched. Qualitative methods, support [31]. As a result, this review may overrepresent the such as individual interviews and open-question surveys, can positive and beneficial aspects of online peer support and may be used for this purpose. In addition, there is a group of people not provide an accurate picture of the real-world experiences who are unable to access online peer support or use technology, of people with PD who are part of such communities. In for example, because of their PD symptoms. It is important to addition, within the studies, it was sometimes difficult to identify explore in more detail the barriers that people face and how the contributions of technological, social, and individual they could overcome them. Some of the studies included in this elements to how people experienced online peer support. Finally, review recommended investigating the use of voice assistive people have different preferences and needs, and online peer tools for people with PD [31,45]. Research into the use of such support may not be suitable for everyone living with PD. In assistive tools for online peer support has already been addition, the physical symptoms of PD may be a barrier for conducted for people with ALS; for example, in the work of people to use technology and to access online peer support Caron and Light [53]. communities. The views and experiences of people who are Conclusions unable or do not want to engage in online peer support groups Peer support can be an extremely valuable source of social have not been presented in this review. support for people with PD. More specifically, peer support can Recommendations for Future Research improve social health and support people with PD in living For this review, no papers were identified that covered meaningful and satisfying lives, despite their condition. Sharing videoconferencing platforms that can be used for peer support; experiences with peers can improve feelings of empowerment for example, Zoom, Skype, or Microsoft Teams. As these and social connectedness and help people with PD develop new platforms have become more widely used since the COVID-19 coping skills. Peer support is unique and cannot be replaced by pandemic, future research could explore how widely they are family members, friends, or health care professionals who do used among people with PD, and if and how they are used for not live with PD. The benefits of peer support are not limited peer support. Furthermore, research could focus on how people to physical, in-person support groups but can be transferred via experience this form of online peer support and how it impacts the internet. Online peer support is accessible to a wide range their lives, as it is different in nature than what has been of people and is not limited by geographical barriers. This could discussed in this review. More specifically, videoconferencing make online peer support particularly suitable for those who do platforms include synchronous and verbal communication, often not have an in-person peer support group in their local area, or where one sees the other members. This reduces anonymity and whose PD symptoms hinder them from traveling. However, adds a face-to-face element, in which nonverbal communication research on the personal experiences of those who engage in can be more prevalent. online peer support and potential barriers to accessing online peer support remains limited. Future research could use Future research could also focus on using different qualitative methods, such as individual interviews, focus groups, methodologies for analyzing online peer support for people with and open-question surveys to explore these fields further. Acknowledgments 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 Authors' Contributions 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. Conflicts of Interest None declared. https://aging.jmir.org/2022/3/e35425 JMIR Aging 2022 | vol. 5 | iss. 3 | e35425 | p. 13 (page number not for citation purposes) XSL FO RenderX JMIR AGING Gerritzen et al Multimedia Appendix 1 Narrative synthesis methods. [DOCX File , 25 KB-Multimedia Appendix 1] Multimedia Appendix 2 Quality assessment tables. [DOCX File , 20 KB-Multimedia Appendix 2] References 1. Halli-Tierney AD, Luker J, Carroll DG. Parkinson disease. Am Fam Physician 2020 Dec 01;102(11):679-691 [FREE Full text] [Medline: 33252908] 2. GBD 2016 Parkinson's Disease Collaborators. Global, regional, and national burden of Parkinson's disease, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. 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[doi: 10.1044/2015_AJSLP-15-0010] [Medline: 26254447] Abbreviations ALS: amyotrophic lateral sclerosis CASP: Critical Appraisal Skills Programme MS: multiple sclerosis PD: Parkinson disease PRISMA: Preferred Reporting Items for Systematic Reviews and Meta-Analyses Edited by J Wang; submitted 04.12.21; peer-reviewed by J Taylor, S Choemprayong; comments to author 14.03.22; revised version received 27.03.22; accepted 31.03.22; published 27.07.22 Please cite as: Gerritzen EV, Lee AR, McDermott O, Coulson N, Orrell M JMIR Aging 2022;5(3):e35425 URL: https://aging.jmir.org/2022/3/e35425 doi: 10.2196/35425 PMID: ©Esther Vera Gerritzen, Abigail Rebecca Lee, Orii McDermott, Neil Coulson, Martin Orrell. Originally published in JMIR Aging (https://aging.jmir.org), 27.07.2022. 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JMIR Aging – JMIR Publications
Published: Jul 27, 2022
Keywords: Parkinson disease; web-based health community; online peer support; narrative synthesis; systematic review