Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Feb 1, 2021
Date Accepted: Apr 29, 2022
The role of online support groups in supporting individuals affected by HIV/AIDS: A scoping review of the literature
ABSTRACT
Background:
Online support groups provide opportunities for individuals affected by HIV/AIDS to seek information, advice and support from peers. However, if and how engagement with online support groups helps individuals affected by HIV/AIDS remains unclear.
Objective:
To systematically review the evidence (both quantitative and qualitative) around the benefits of online support groups for individuals affected by HIV/AIDS in terms of psychosocial wellbeing and/or illness management. In addition, the review sought to identify and describe any negative aspects experienced by individuals as well as the types of social support exchanged within such online groups.
Methods:
A systematic review of English language articles was undertaken using Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Databases searched included Medline, PubMed, EMBASE, CINAHL, PsycINFO, CENTRAL (Cochrane Register of Controlled Trials) and SCOPUS. Key findings were critically synthesized using a narrative and thematic approach.
Results:
22 papers met the inclusion criteria from an initial pool of 4501 abstracts. These papers included 5 quantitative, 2 mixed-methods and 15 qualitative studies published between 2007 and 2019.
Conclusions:
Some cross-sectional and qualitative studies suggest there may be an association between engagement and a range of psychosocial processes and outcomes. However, studies with robust methodological designs are needed to definitively establish whether HIV/AIDS-related online support groups improve psychosocial well-being and/or illness management. Qualitative data highlights users can have negative experiences in terms of interpersonal conflict and the challenges of encountering negative content. In addition, there may be aspects of the internet-mediated nature of the online communication which compromise member experiences. Finally, HIV/AIDS-related online support groups are venues through which individuals can solicit support, most commonly informational or emotional support. Future research should seek to examine the impact of engagement with online support groups over time including appropriate control or comparison groups. Clinical Trial: N/A
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