Giving and Receiving Peer Advice in an Online Breast Cancer Support Group

People have access to experiential information and advice about health online. The types of advice exchanged affect the nature of online communities and potentially patient decision making. The aim of this study was to examine the ways in which peers exchange advice within an online health forum in order to better understand online groups as a resource for decision making. Messages collected over a one-month period from an online breast cancer support forum were analyzed for examples of advice exchange. The majority of the messages solicited advice through problem disclosure or requests for information and opinion. A novel form of advice solicitation—“anyone in the same boat as me”—was noted as was the use of personal experience as a form of advice giving. Women construct their advice requests to target like-minded people. The implications in terms of decision making and support are discussed

“You get to know the people and whether they’re talking sense or not”: Negotiating trust on health-related forums

AbstractThe internet is increasingly being used as a source of health advice and information by individuals with long term conditions (LTCs). Specifically, online forums allow people to interact with others with similar conditions. However, it is not clear how online health information is assessed by those with LTCs. This study aims to address this gap by exploring how individuals with contested and uncontested LTCs utilise internet forums. Semi-structured interviews were conducted with 20 participants with ME/CFS and 21 participants with type 1 and 2 diabetes and analysed using thematic analysis. Participants were recruited via online and offline routes, namely forums, email lists, newsletters, and face-to-face support groups. The findings indicate that the use of online forums was a complex and nuanced process and was influenced by a number of individual and illness-specific factors. Participants trusted those with similar experiences and perspectives as themselves, while also valuing conventional biomedical information and advice. By accessing support online, forum users were able to draw on a personalised form of support based on the lived experiences of their peers. However, the role of digital literacy in developing and maintaining online relationships must be acknowledged

SOLICITATION OF ONLINE SOCIAL SUPPORT: SELF-DISCLOSURE OF EATING DISORDER PATIENTS

This paper focuses on the online construction of self-disclosure of individuals suffering from eating disorders and demonstrates how strategies of soliciting online social support are mediated within the public sphere. McCormack (2010) indicates that participation of individuals suffering from eating disorders in online support groups, where they anonymously share their feelings and issues via the Internet, is more accessible and non-costly compared to offline settings. This serves as motivation for data to be collected from the discussion forums on the National Eating Disorders Association (NEDA) website. Relevant posts of self-disclosure containing instances of online solicitation of support dated from January 2018 to March 2018 were analysed using the computer-mediated discourse analysis (CMDA) method and North’s (1997) Strategies of Soliciting Social Support. The findings reveal that the sharing of experience is regarded as the most frequent strategy of soliciting support opted by ED patients. This result in a lengthier posts where detailed explanation of their problems were disclosed. It appears that the strategy utilized in online support-solicitation is merely a channel used in portraying the actual state of the support-seekers in handling their illness. In addition, as ED is perceived to be uncommon and unprioritized in Asia (Miller & Pumariega, 2001), the possibility of getting help from various channels may be scarce. Thus, this study’s outcome provides a vivid image on how online social support discussions can be considered as one of the potential effective platforms to help individuals in the Southeast Asia who suffer from ED in their recovery process. Keywords: Computer-mediated discourse, eating disorders, online social support, self-disclosure, soliciting. Cite as: Zulkarnain, N. A. & Mohd Jan, J. (2019). Solicitation of online social support: Self-disclosure of eating disorder patients. Journal of Nusantara Studies, 4(1), 344-364. http://dx.doi.org/10.24200/jonus.vol4iss1pp344-36

Measuring levels of preparation for decision-making and patient satisfaction in a breast cancer support group

The Carilion Clinic Breast Diagnostic Center diagnoses approximately 250 women with breast cancer annually, all of whom are invited to attend the Carilion Clinic Breast Cancer Support Group (CCBCSG). The primary aim of this project was to evaluate if participants with more frequent attendance of CCBCSG had increased levels of preparation for decision-making (PDM) and higher satisfaction with breast cancer treatment decisions. A REDCap survey was emailed to 137 patients who participated in at least one CCBCSG within the past five years, with a 39.4% response rate. The survey assessed levels of patient PDM, patient satisfaction about treatment decisions, and asked the open-ended question, “What else would you like to share about your CCBCSG experience and treatment decision making?” Attendance for the CCBCSG was the independent variable with four levels: one meeting (27.8%), 2-5 meetings (24.1%), 6-10 meetings (20.4%) and 10+ meetings (27.8%). The non-parametric ANOVA test, Kruskal-Wallis, was used to test for differences in the PDM and patient satisfaction among the groups of participants, based on the number of support groups they attended. Descriptive analysis and testing of statistical assumptions were performed with all quantitative variables. Although the study demonstrated that though the PDMS scores were not statistically significantly different (p=0.0934) for the four attendance groups, trends demonstrated that those who attended the most meetings (\u3e10) were more prepared for decision-making than any other group. Similarly, those who attended 10+ meetings were also statistically more likely to be satisfied with their experience (p=0.0290)

Development of Trust in an Online Breast Cancer Forum: A Qualitative Study

Background: Online health forums provide peer support for a range of medical conditions, including life-threatening and terminal illnesses. Trust is an important component of peer-to-peer support, although relatively little is known about how trust forms within online health forums. Objective: The aim of this paper is to examine how trust develops and influences sharing among users of an online breast cancer forum. Methods: An interpretive qualitative approach was adopted. Data were collected from forum posts from 135 threads on nine boards on the UK charity, Breast Cancer Care (BCC). Semi-structured interviews were conducted with 14 BCC forum users. Both datasets were analysed thematically using Braun and Clarke’s [2006] approach and combined to triangulate analysis. Results: Trust operates in three dimensions, structural, relational and temporal, which intersect with each other and do not operate in isolation. The structural dimension relates to how the affordances and formal rules of the site affected trust. The relational dimension refers to how trust was necessarily experienced in interactions with other forum users: it emerged within relationships and was a social phenomenon. The temporal dimension relates to how trust changed over time and was influenced by the length of time users spent on the forum. Conclusions: Trust is a process that changes over time, and which is influenced by structural features of the forum and informal but collectively understood relational interactions among forum users. The study provides a better understanding of how the intersecting structural, relational and temporal aspects that support the development of trust facilitate sharing in online environments. These findings will help organisations developing online health forums

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

BACKGROUND: Human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) is one of the leading concerns in healthcare. Individuals living with HIV/AIDS are often confronted with tremendous physical and psychosocial challenges. Online support groups can provide a valuable source of information, advice and support, and a medium through which individuals living with HIV/AIDS can interact with each other and share their experiences. However, very little is known about how online support group might promote empowerment and the potential disadvantages associated with online support group use among individuals living with HIV/AIDS. OBJECTIVES: The present study explored the potential empowering and disempowering processes, and empowering outcomes of online support group use among individuals with HIV/AIDS. DESIGN, SETTINGS, PARTICIPANTS: A total of 115 HIV-positive online support group members were recruited from HIV-related online support groups. They completed an online survey exploring their experiences of online support group use. RESULTS: Thematic analysis revealed six empowering processes arising from use of online support groups: exchanging information, sharing experiences, connecting to others, encountering emotional support, finding recognition and understanding, and helping others. Six empowering outcomes were identified: increased optimism, emotional well-being, social well-being, being better informed, improved disease management, and feeling confident in the relationship with physicians. Potentially disempowering processes were also identified which included: being unable to connect physically, inappropriate behaviour online, declining real life relationships, and information overload and misinformation. CONCLUSION: Findings suggest ways through which individuals with HIV/AIDS may be empowered although some problematic features specific to the online context may also be present

Contemporary interventions tackling complex issues: exploring pathways from online mental health forums to personal resilience

This paper identifies and examines pathways in which online mental health forums assist in building personal resilience and address the mental ill-health of rural residents. We use a resilience theory to develop a Theoretical Resilience Framework and apply it to empirical qualitative data deriving from three of Australia’s online mental health forums as well as interviews with forum users. Using thematic analysis and an abductive approach to generating new knowledge, we develop a logic model illustrating links between factors influencing personal resilience, factors acting upon resilience, and intermediate and long-term outcomes that online mental health forums have on their users. Our study demonstrates that online forums can provide ongoing and timely services to those in need, and they support the adaptive capacity of individuals to cope with stressors and a variety of challenges they face. Embedded in a rural setting, the paper adds understanding to the role of technology and online forums in addressing geographical isolation. Ultimately, our work helps to develop new sources of knowledge about rural resilience and supporting mental health service provision in rural places

Online mental health forums and rural resilience: mixed methods study and logic model

Background: Rural mental health is a growing area of concern internationally, and online mental health forums offer a potential response to addressing service gaps in rural communities. Objective: The objective of this study was to explore and identify pathways by which online peer support mental health forums help to build resilience for rural residents experiencing mental ill-health by contributing to overcoming their specific contextual challenges. Methods: We developed a Theoretical Resilience Framework and applied it to 3000 qualitative posts from 3 Australian online mental health forums and to data from 30 interviews with rural forum users. Results: Drawing on the findings and an abductive approach, a logic model was developed to illustrate links between the resilience resources built and enabling features of forums that make them spaces that facilitate resilience. Conclusions: The study demonstrated that online forums make valuable contributions to social well-being and access to a range of timely support services for rural people experiencing mental ill-health, and, while doing so, involve users in the processes of resilience building. The study provides a new way for practitioners to frame the work of and value produced by forums. It gives a logic model that can be used in evaluation and audit as it facilitates a causal framing of how forums, as an intervention, link with resilience outcomes. Ultimately, the study contributes to developing new knowledge about how rural resilience building can be conceptualized and measured while showing how forums are part of contemporary health service provision in rural places

Sharing and empathy in digital spaces: qualitative study of online health forums for breast cancer and motor neuron disease. (Amyotrophic Lateral Sclerosis)

Background: The availability of an increasing number of online health forums has altered the experience of living with a health condition, as more people are now able to connect and support one another. Empathy is an important component of peer-to-peer support, although little is known about how empathy develops and operates within online health forums. Objective: The aim of this paper is to explore how empathy develops and operates within two online health forums for differing health conditions: breast cancer and motor neuron disease (MND), also known as amyotrophic lateral sclerosis. Methods: This qualitative study analyzed data from two sources: interviews with forum users and downloaded forum posts. Data were collected from two online health forums provided by UK charities: Breast Cancer Care and the Motor Neurone Disease Association. We analyzed 84 threads from the breast cancer forum and 52 from the MND forum. Threads were purposively sampled to reflect varied experiences (eg, illness stages, topics of conversation, and user characteristics). Semistructured interviews were conducted with 14 Breast Cancer Care forum users and five users of the MND forum. All datasets were analyzed thematically using Braun and Clarke’s six-phase approach and combined to triangulate the analysis. Results: We found that empathy develops and operates through shared experiences and connections. The development of empathy begins outside the forum with experiences of illness onset and diagnosis, creating emotional and informational needs. Users came to the forum and found their experiences and needs were shared and understood by others, setting the empathetic tone and supportive ethos of the forum. The forum was viewed as both a useful and meaningful space in which they could share experiences, information, and emotions, and receive empathetic support within a supportive and warm atmosphere. Empathy operated through connections formed within this humane space based on similarity, relationships, and shared feelings. Users felt a need to connect to users who they felt were like themselves (eg, people sharing the same specific diagnosis). They formed relationships with other users. They connected based on the emotional understanding of ill health. Within these connections, empathic communication flourished. Conclusions: Empathy develops and operates within shared experiences and connections, enabled by structural possibilities provided by the forums giving users the opportunity and means to interact within public, restricted, and more private spaces, as well as within groups and in one-to-one exchanges. The atmosphere and feeling of both sites and perceived audiences were important facilitators of empathy, with users sharing a perception of virtual communities of caring and supportive people. Our findings are of value to organizations hosting health forums and to health professionals signposting patients to additional sources of support