Do online support groups help individuals affected by HIV/AIDS?: A systematic review of the quantitative and qualitative literature (Preprint)

2021 ◽  
Author(s):  
Neil Stewart Coulson ◽  
Heather Buchanan
Keyword(s):  
Systematic Review ◽  
Support Groups ◽  
Online Communication ◽  
Well Being ◽  
Qualitative Studies ◽  
Online Support ◽  
Illness Management ◽  
Online Support Groups ◽  
The Impact ◽  
Hiv Aids

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. CLINICALTRIAL N/A

scholarly journals Design, Delivery, Maintenance, and Outcomes of Peer-to-Peer Online Support Groups for People With Chronic Musculoskeletal Disorders: Systematic Review

10.2196/15822 ◽  
2020 ◽  
Vol 22 (4) ◽  
pp. e15822
Author(s):  
Liam R Maclachlan ◽  
Kathryn Mills ◽  
Belinda J Lawford ◽  
Thorlene Egerton ◽  
Jenny Setchell ◽  
...  
Keyword(s):  
Social Support ◽  
Systematic Review ◽  
Health Literacy ◽  
Support Groups ◽  
Peer To Peer ◽  
Risk Of Bias ◽  
Online Support ◽  
Online Support Groups ◽  
Musculoskeletal Conditions ◽  
Quantitative Studies

Background Online support groups (OSGs) are one way for people with chronic diseases, their family or friends, and health professionals to communicate, gain information, and provide social support. As the number of peer-to-peer OSGs for chronic musculoskeletal conditions grows, it is important to gain insight into the different designs of groups available, who is accessing them, if and how they may be effective, and what strategies are being used to implement or increase consumer engagement. Objective The objectives of this systematic review of people with musculoskeletal conditions were to (1) describe the design features (functions, usage options, moderation, and expert input) of peer-to-peer OSGs, (2) describe the characteristics of the individuals using peer-to-peer OSGs, (3) synthesize the evidence on outcomes of participation, and (4) identify strategies used in the delivery and maintenance of OSGs. Methods A search comprising terms related to the population (people with musculoskeletal disorders) and the intervention (peer-to-peer OSGs) was conducted in 6 databases. Results were filtered from 1990 (internet inception) to February 2019. Studies identified in the search were screened according to predefined eligibility criteria using a 2-step process. Quantitative studies were appraised by 2 reviewers using the Risk Of Bias In Non-Randomized Studies of Interventions tool. Qualitative studies were appraised by 2 different reviewers using the Critical Appraisal Skills Programme checklist. Extracted data were synthesized narratively. Results We examined 21 studies with low to moderate risk of bias. Of these studies, 13 studies included OSGs hosted on public platforms, 11 studies examined OSGs that were conducted in English, and 6 studies used moderators or peer leaders to facilitate engagement. Studies either reported the number of OSG members (n=1985 across all studies) or the number of posts (range: 223-200,000). The majority of OSG members were females who were not full-time employees and with varied levels of education. There were no randomized controlled trials measuring the efficacy of OSGs. Qualitative and quantitative studies identified empowerment, social support, self-management behavior, and health literacy as primary constructs to measure OSG efficacy. Neutral or marginal improvement was reported in these constructs. Sharing experiences and a greater level of engagement appeared to have an important influence on OSGs efficacy. The extent to which members posted on the website influenced engagement. Conclusions Across a diverse range of designs, languages, included features, and delivery platforms, peer-to-peer OSGs for chronic musculoskeletal conditions attract predominantly female participants of all ages and education levels. The level of participation of a member appears to be related to their perceived benefit, health literacy, and empowerment. Future studies are needed to identify which design and maintenance strategies have superior efficacy and whether there are concomitant improvements in health outcomes for people with chronic musculoskeletal conditions resulting from participation in OSGs. Trial Registration PROSPERO International Prospective Register of Systematic Reviews CRD42018090326; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42018090326

Living with HIV/AIDS and Use of Online Support Groups

2010 ◽  
Vol 15 (3) ◽  
pp. 339-350 ◽  
Author(s):  
Phoenix K.H. Mo ◽  
Neil S. Coulson
Keyword(s):  
Support Groups ◽  
Online Support ◽  
Online Support Groups ◽  
Living With Hiv ◽  
Hiv Aids

scholarly journals The Effects of Situational Peers and Support Groups on the Well-Being of Grandmothers Raising Grandchildren

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 408-409
Author(s):  
Alexandra Jeanblanc ◽  
Carol Musil ◽  
Christopher Burant ◽  
McKenzie Wallace
Keyword(s):  
Mental Health ◽  
Support Groups ◽  
Support Group ◽  
Well Being ◽  
Online Support ◽  
Online Support Groups ◽  
Multigenerational Households ◽  
Grandmothers Raising Grandchildren ◽  
Need For Support ◽  
Group Engagement

Abstract Grandmothers raising their grandchildren face not only the demands of parenting, but the added burden of parenting a child they did not expect to raise. Similarly, grandmothers living in multigenerational households need to balance expectations and household/caregiving tasks across the generations. As part of a nationwide RCT designed to lessen the stress associated with the caregiving burden of raising grandchildren, we asked 342 grandmothers raising their grandchildren about their engagement with support groups and whether their social network included other grandfamilies. Here, we examine the effect of situational peers and support group engagement on grandmother’s stress, reward, social support, mental health, mindfulness, and resourcefulness. Of our sample, 53.8% (N=184) reported belonging to a support group. The majority of participants (138) belonged to online support groups on Facebook, 41 reported participating in in-person support groups, 3 belonged to both in-person and online support groups, and 8 did not respond. When asked whether and how well our participants knew other families like theirs, 31% (106) said they did not know any, 40.6% (139) knew of at least one, but not well, and 28.4% (97) said they had at least one friend with a family like her own. Knowing other families like their own affected self-appraised stress, but no other outcomes. Grandmothers participating in support groups had lower mindfulness scores, higher stress, and worse mental health scores than grandmothers not participating in support groups, possibly reflecting the higher need for support among those participants.

scholarly journals Design, Delivery, Maintenance, and Outcomes of Peer-to-Peer Online Support Groups for People With Chronic Musculoskeletal Disorders: Systematic Review (Preprint)

2019 ◽  
Author(s):  
Liam R Maclachlan ◽  
Kathryn Mills ◽  
Belinda J Lawford ◽  
Thorlene Egerton ◽  
Jenny Setchell ◽  
...  
Keyword(s):  
Social Support ◽  
Systematic Review ◽  
Health Literacy ◽  
Support Groups ◽  
Peer To Peer ◽  
Risk Of Bias ◽  
Online Support ◽  
Online Support Groups ◽  
Musculoskeletal Conditions ◽  
Quantitative Studies

BACKGROUND Online support groups (OSGs) are one way for people with chronic diseases, their family or friends, and health professionals to communicate, gain information, and provide social support. As the number of peer-to-peer OSGs for chronic musculoskeletal conditions grows, it is important to gain insight into the different designs of groups available, who is accessing them, if and how they may be effective, and what strategies are being used to implement or increase consumer engagement. OBJECTIVE The objectives of this systematic review of people with musculoskeletal conditions were to (1) describe the design features (functions, usage options, moderation, and expert input) of peer-to-peer OSGs, (2) describe the characteristics of the individuals using peer-to-peer OSGs, (3) synthesize the evidence on outcomes of participation, and (4) identify strategies used in the delivery and maintenance of OSGs. METHODS A search comprising terms related to the population (people with musculoskeletal disorders) and the intervention (peer-to-peer OSGs) was conducted in 6 databases. Results were filtered from 1990 (internet inception) to February 2019. Studies identified in the search were screened according to predefined eligibility criteria using a 2-step process. Quantitative studies were appraised by 2 reviewers using the Risk Of Bias In Non-Randomized Studies of Interventions tool. Qualitative studies were appraised by 2 different reviewers using the Critical Appraisal Skills Programme checklist. Extracted data were synthesized narratively. RESULTS We examined 21 studies with low to moderate risk of bias. Of these studies, 13 studies included OSGs hosted on public platforms, 11 studies examined OSGs that were conducted in English, and 6 studies used moderators or peer leaders to facilitate engagement. Studies either reported the number of OSG members (n=1985 across all studies) or the number of posts (range: 223-200,000). The majority of OSG members were females who were not full-time employees and with varied levels of education. There were no randomized controlled trials measuring the efficacy of OSGs. Qualitative and quantitative studies identified empowerment, social support, self-management behavior, and health literacy as primary constructs to measure OSG efficacy. Neutral or marginal improvement was reported in these constructs. Sharing experiences and a greater level of engagement appeared to have an important influence on OSGs efficacy. The extent to which members posted on the website influenced engagement. CONCLUSIONS Across a diverse range of designs, languages, included features, and delivery platforms, peer-to-peer OSGs for chronic musculoskeletal conditions attract predominantly female participants of all ages and education levels. The level of participation of a member appears to be related to their perceived benefit, health literacy, and empowerment. Future studies are needed to identify which design and maintenance strategies have superior efficacy and whether there are concomitant improvements in health outcomes for people with chronic musculoskeletal conditions resulting from participation in OSGs. CLINICALTRIAL PROSPERO International Prospective Register of Systematic Reviews CRD42018090326; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42018090326

Factors Underlying Engagement in Facebook Support Groups of Female Infertility Patients

2020 ◽  
pp. 003329412093470
Author(s):  
Tali Gazit ◽  
Yair Amichai-Hamburger
Keyword(s):  
Family Support ◽  
Support Groups ◽  
Online Survey ◽  
Well Being ◽  
Openness To Experience ◽  
External Factors ◽  
Future Research ◽  
Online Support ◽  
Online Support Groups ◽  
Internal Factors

Women dealing with infertility issues may well undergo a long process of treatments and they are also likely to feel empty, defective, inadequate and worthless. Some of these women join online support groups in order to share their experiences, get information and ease their pain. One important positive phenomenon of the Internet is the advent of online support groups. These are designed to foster well-being and increased social interaction, and to offer 24/7 availability with no geographical restrictions. This study, comprising 191 female participants who answered an online survey, focused on closed Facebook support groups, the members of which were women undergoing treatments for infertility. The study examined to what extent the degree of engagement by these women in online support groups could be predicted by external factors (family status, social and family support, the importance of the group and the duration of membership) and internal factors (extroversion, openness to experience, subjective happiness and loneliness). Findings show that higher levels of engagement in such Facebook support groups are predicted by the external factors, including having a child, longer duration of membership in the group, family support and the strongest predictor, perception of the group as important. Findings also show that higher levels of engagement in these groups are predicted by internal factors extroversion and openness to experience, as was found in previous studies of other populations. Results and future research are discussed.

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