Are online support groups always beneficial? A qualitative exploration of the empowering and disempowering processes of participation within HIV/AIDS-related online support groups

Mo, Phoenix K. H.; Coulson, Neil

doi:10.1016/j.ijnurstu.2013.11.006

Cited by 89 publications

(93 citation statements)

References 55 publications

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“…Forums provide access to a range of information, support and advice [9,37], and these findings indicate that moderators and members both play an active role in the provision of support. Members often replied saying how much they appreciated this support, and how much it helped them.…”

Section: Discussionmentioning

confidence: 99%

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A thematic analysis of messages posted by moderators within health-related asynchronous online support forums

Smedley

Coulson

2017

Patient Education and Counseling

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Objective: To identify and describe the activities performed by online support community moderators.Methods: A total of 790 messages were downloaded for analysis. Messages were written by 59 moderators from 6 forums that represent a diverse range of conditions (arthritis, complex regional pain syndrome, Crohn's disease, depression, diabetes and Huntington's disease).Results: Thematic analysis revealed four themes: supportive tasks involve providing help to members, moderators sharing experiences shows how they use forums to fulfil their own personal support needs, making announcements about new discoveries and upcoming events, and administrative tasks such as enforcing rules and deleting spam. Conclusion:These results are consistent with the helper-therapy principle and provide a new insight into the diverse and varied range of activities carried out by moderators.Practice implications: Moderators perform many roles, including using forums for their own support needs.

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Section: Discussionmentioning

confidence: 99%

“…Researchers have examined many aspects of OSCs including the socio-demographic and medical profile of members [5,6], how new members introduce themselves [7,8], the benefits and disadvantages of engagement [2,9], what kind of social support individuals exchange [10,11], and empowering processes that can arise from using them [9,12].…”

Section: Introductionmentioning

confidence: 99%

A thematic analysis of messages posted by moderators within health-related asynchronous online support forums

Smedley

Coulson

2017

Patient Education and Counseling

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“…11 As a result, forum users are facilitated in developing a new identityone which differs from the passive sick role construct described by Parsons,5 but one which is also distinct from an individual's offline persona. Sharing experiences with others online provided interviewees with an opportunity to engage in mutually supportive relationships in which they could mobilize the resources available to them to assist others 49,61,62 and which offered them an opportunity to discuss topics that they were not able to share with family and friends. 16,65 Finally, it should be acknowledged that online support may have a particular resonance for different individuals at different points during their illness trajectory.…”

Section: Discussionmentioning

confidence: 99%

Accessing support and empowerment online: The experiences of individuals with diabetes

Brady

Segar

Sanders

2017

Health Expectations

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ContextThe use of the internet for health information by those with long‐term conditions is growing. It has been argued that this represents a form of empowerment by patients, as it enables them to control the content and flow of the information available to them. To explore this, the use of online discussion groups by those with diabetes was examined.MethodSemi‐structured interviews were conducted with 21 participants with type 1 and 2 diabetes and analysed using thematic analysis. Participants were recruited via online and offline routes, namely discussion boards, newsletters, and research networks related to diabetes.ResultsBy drawing on the advice, information, and support shared online, participants were empowered to position themselves as active participants in their own health care and to further engage with health‐care professionals.ConclusionThe findings indicate that forums can play a valuable role in aiding and motivating individuals in the daily management diabetes and highlight how this support is used to complement formal health services. However, more work needs to be carried out to determine to explore when and under what circumstances online support may be particularly beneficial to those with long‐term conditions.

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“…The perceived benefits for OHC patients and other users may thus be understood as empowering processes, in which health professional moderators are catalysts of users' empowerment as they 'bestow power upon' (Lincoln, Travers, Ackers, & Wilkinson, 2002) ordinary OHC users. Health professional moderators enable OHC users to actively confront their health issues, develop appropriate competences, and gain health-related knowledge and greater control over their own health situations or health situations of those they care for (Mo & Coulson, 2014;van Uden-Kraan et al, 2008). Indeed, Barak, Boniel-Nissim, and Suler (2008) use of health care services, and even public health care costs (Jin, Yan, Li, & Li, 2016;Nutbeam, 2008).…”

Section: Discussionmentioning

confidence: 99%

Exploring the benefits and challenges of health professionals’ participation in online health communities: Emergence of (dis)empowerment processes and outcomes

Atanasova

Kamin

Petrič

2017

International Journal of Medical Informatics

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This small study demonstrates that health professional participating in OHCs as moderators perceive themselves as facilitators of patients and other OHC's users empowering processes and outcomes, in which OHC's users improve their health literacy, develop skills, expand their social support, and gain other important resources necessary when dealing with health-related issues. Health professional moderator's role, however, also involves several duties, responsibilities and limitations that are often experienced as difficulties in providing patients and other users with adequate counselling and online medical service. OHCs also represent an important terrain for personal and professional empowerment of health professional moderators, although the presence of disempowering processes also needs to be noted.

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Are online support groups always beneficial? A qualitative exploration of the empowering and disempowering processes of participation within HIV/AIDS-related online support groups

Abstract: Background: Human immunodeficiency virus/ acquired immunodeficiency syndrome (HIV/AIDS)

Cited by 89 publications

References 55 publications

A thematic analysis of messages posted by moderators within health-related asynchronous online support forums

A thematic analysis of messages posted by moderators within health-related asynchronous online support forums

Accessing support and empowerment online: The experiences of individuals with diabetes

Exploring the benefits and challenges of health professionals’ participation in online health communities: Emergence of (dis)empowerment processes and outcomes

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