Impacts of online support groups on quality of life, and perceived anxiety and depression in those with ME/CFS: a survey

Morehouse, Samantha; Schaible, Krystal; Williams, Olivia; Herlache-Pretzer, Ellen; Webster, Stacey

doi:10.1080/21641846.2021.1950406

Cited by 6 publications

(6 citation statements)

References 12 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…[Forum moderator 1] However, this same feature can lead to different user responses. Therefore, CMO 7.2 represents a rival theory [31], stating that anonymity may render interactions impersonal and limit consequences for "toxic" or "trolling" behaviors [61], including hostile comments and harassment [18,62]:…”

Section: And You Can Leave When You Want Whereas If You Go To a Group...mentioning

confidence: 99%

“…The stakeholder workshop highlighted the possibility that forum use may alleviate pressures on health services by meeting users' needs without them requiring other support (CMO 12). However, in some circumstances, users may be exposed to posts describing unsuccessful attempts to access services or negative experiences in health care that could discourage readers from seeking support (CMO 13) [62,71], an issue noted by one interviewee: ...it could be quite triggering if someone's having an experience that's very similar to yours and it could be quite depressing I suppose just thinking, "god, I'm struggling but these people are struggling even more..." No one's got an answer to this. Quite hopeless.…”

Section: [Forum Host 3]mentioning

confidence: 99%

“…The social connection offered by online mental health forums facilitates several distinct positive impacts. Others' accounts of similar circumstances validate users' own thoughts and behaviors [73], contributing to a recognition that they are not isolated in their mental health experiences (CMO 18) [62]:…”

Section: Theory Area 5: Social Connectionmentioning

confidence: 99%

“…[76]. Community members may derive benefit from offering such support (CMO 20) [50,55,77], particularly in cases in which users are motivated to support others through situations that they have personally experienced [62]: I find great joy in helping others find resources and helping them to learn about this condition and its comorbid conditions, as well as relating my personal experiences to theirs so that they, in turn, don't feel so alone.…”

Section: Theory Area 5: Social Connectionmentioning

confidence: 99%

See 3 more Smart Citations

Understanding the Impacts of Online Mental Health Peer Support Forums: Realist Synthesis

Marshall,

Booth,

Coole

et al. 2024

JMIR Ment Health

View full text Add to dashboard Cite

Background Online forums are widely used for mental health peer support. However, evidence of their safety and effectiveness is mixed. Further research focused on articulating the contexts in which positive and negative impacts emerge from forum use is required to inform innovations in implementation. Objective This study aimed to develop a realist program theory to explain the impacts of online mental health peer support forums on users. Methods We conducted a realist synthesis of literature published between 2019 and 2023 and 18 stakeholder interviews with forum staff. Results Synthesis of 102 evidence sources and 18 interviews produced an overarching program theory comprising 22 context-mechanism-outcome configurations. Findings indicate that users’ perceptions of psychological safety and the personal relevance of forum content are foundational to ongoing engagement. Safe and active forums that provide convenient access to information and advice can lead to improvements in mental health self-efficacy. Within the context of welcoming and nonjudgmental communities, users may benefit from the opportunity to explore personal difficulties with peers, experience reduced isolation and normalization of mental health experiences, and engage in mutual encouragement. The program theory highlights the vital role of moderators in creating facilitative online spaces, stimulating community engagement, and limiting access to distressing content. A key challenge for organizations that host mental health forums lies in balancing forum openness and anonymity with the need to enforce rules, such as restrictions on what users can discuss, to promote community safety. Conclusions This is the first realist synthesis of online mental health peer support forums. The novel program theory highlights how successful implementation depends on establishing protocols for enhancing safety and strategies for maintaining user engagement to promote forum sustainability. Trial Registration PROSPERO CRD42022352528; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=352528

show abstract

Section: And You Can Leave When You Want Whereas If You Go To a Group...mentioning

confidence: 99%

Section: [Forum Host 3]mentioning

confidence: 99%

Section: Theory Area 5: Social Connectionmentioning

confidence: 99%

Section: Theory Area 5: Social Connectionmentioning

confidence: 99%

See 2 more Smart Citations

Understanding the Impacts of Online Mental Health Peer Support Forums: Realist Synthesis

Marshall,

Booth,

Coole

et al. 2024

JMIR Ment Health

View full text Add to dashboard Cite

show abstract

“… 33 The benefits of using social media in health communication include interaction with others, the availability of shared knowledge, widened access to health information, social and emotional support, and empowerment in their healthcare process. 34 35 Investigating the perceived impact of online participation, Morehouse et al 36 found people gained a sense of belonging, validation and supportive friendships, decreasing feelings of depression and increasing quality of life. As much as 75% of a sample studied by Kummervold et al 37 found it easier to discuss personal problems online than face-to-face.…”

Section: Introductionmentioning

confidence: 99%

Protocol for a scoping review of how people with ME/CFS use the internet

Shortland,

Fazil,

Hallett

et al. 2024

BMJ Open

View full text Add to dashboard Cite

IntroductionMyalgic encephalomyelitis (ME) is a chronic neurological illness affecting many bodily systems, commonly the nervous and immune systems. Also known as chronic fatigue syndrome (CFS), key symptoms are extreme fatigue, post-exertional malaise, cognitive problems and sleep disturbance. With reported higher levels of online activity for people with ME/CFS than other patient groups (Westerby 2013 cited in Ytre-Arne) it is crucial to gain more knowledge of usage characteristics and experience of online use, and its integration into everyday life. This scoping review protocol details the proposed methods for gaining insight into this little known phenomenon.Methods and analysisThis review uses the methodological framework for conducting a scoping review by Arksey and O’Malley, with further guidance by Levacet al, and the Joanna Briggs Institute. It also refers to the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols reporting guidelines. The following bibliographic databases will be searched: Embase, Medline, PsychINFO, Cinahl, AMED, and ASSIA, plus Web of Science, ProQuest Dissertations and Theses Global, Scopus, and Google Scholar for grey literature. Reference lists of included papers will be studied. Two reviewers will independently screen title abstracts, and then full text of studies against inclusion criteria. Remaining studies will be quality assessed using appropriate critical appraisal tools. Findings will be charted and mapped to gain in-depth knowledge of the use of the internet in people with ME/CFS.Ethics and disseminationThe findings from this review will be disseminated through peer-reviewed publication and a report for leading charities of ME/CFS. The review will collect secondary data only and therefore does not need ethical approval.

show abstract