Personality, Attitudes, and Behaviors Predicting Perceived Benefit in Online Support Groups (Preprint)

BACKGROUND Online Support Groups (OSGs) are distance-delivered, easily accessible health interventions offering emotional support, informational support, experience-based support, and companionship or network support for patients/caregivers managing chronic mental and physical health conditions. OBJECTIVE This study aimed to examine the relative contribution of extraversion, agreeableness, neuroticism, positive attitudes toward OSGs, and typical past OSG usage patterns in predicting perceived OSG benefit in an OSG for parent caregivers of children with neurodevelopmental disorders. METHODS A mix method longitudinal design was used to collect data from 81 parents across Canada. Attitudes toward OSGs and typical OSG usage patterns were assessed using author-developed surveys administered at baseline, before OSG membership. The personality traits of extraversion, agreeableness, and neuroticism were assessed at baseline using the Ten-Item Personality Inventory (TIPI). Perceived OSG benefit was assessed using an author-developed survey, administered two months after initiation of OSG membership. RESULTS A hierarchical regression analysis found that extraversion was the only variable that significantly predicted perceived OSG benefit. CONCLUSIONS The key suggestions for improving future OSGs were facilitating more in-depth, customized, and interactive content in OSGs.

Online Social Support Groups/Communities

Numerous studies over the past two decades suggest that people with a variety of health concerns are increasingly turning to online networks for social support. This has led to the rise of online support groups/communities for people facing health concerns. Researchers have found that these groups/communities provide patients, disease survivors, and caregivers a number of advantages and disadvantages in terms of mobilizing social support for their health-related concerns. This chapter will examine these issues in greater detail as well as the theoretical and practical implications of this body of research for patients who use online support communities to help cope with and manage a variety of health issues. It will provide an overview of online social support and health outcomes, discuss key processes and theoretical explanations for the efficacy of online support communities for people facing health concerns, and the limitations of this body of research as well as an agenda for future communication research on health-related online support groups/communities.

Social Support Through Digital Media?

This chapter aims to analyze the use of online support groups for breast cancer in Turkey. After describing the general characteristics of such groups, the authors closely analyze the two Facebook groups on breast cancer. The analysis focuses on how the patients read the illness and their struggle to cope with the illness; how social support mechanisms are used; and which aims and motivations are foregrounded. Both quantitative and qualitative techniques are used in the research. Informed by the international research literature, the chapter also tries to underline the similarities and differences of online social media in the Turkish context. Although the main purpose of the groups is to share information, emotional empathy and shared personal experience are also obvious.

The Use of Social Media, Online Support Groups, and Apps for Pregnant Women During COVID-19

At the start of 2020, the World Health Organisation (WHO) declared COVID-19 as a global pandemic. Pregnant women were deemed a vulnerable group globally and advised to shield. Due to social distancing and the changes in maternity services, it was a reasonable assumption that pregnant women would turn to the online platform for advice and guidance. Using reflexive thematic analysis, this chapter explored the effect of social media, support groups, and app usage on pregnant women during the outbreak. Results evidenced that pregnant women utilised social media, support groups, and apps for information and support. Positive aspects were maintaining social connections whilst adhering to social distancing guidelines, access to support groups and people in similar situations, and ease of access to information. Negative aspects were excessive amounts of and overwhelming information, misinformation, judgement from others, and increased anxiety. Apps were deemed positive for general pregnancy but lacked COVID-19-related information.

Providing care beyond the therapy session — a natural language processing–based recommender system that identifies cancer patients who experience psychosocial challenges and provides self-care support (Preprint)

BACKGROUND The negative psychosocial impacts of cancer diagnoses and treatments are well documented. Virtual care has become an essential mode of care delivery during the COVID-19 pandemic and online support groups (OSGs) are shown to improve accessibility to psychosocial and supportive care. The de Souza Institute offers CancerChatCanada, a therapist-led OSG service where sessions are monitored by an artificial intelligence-based co-facilitator (AICF). AICF is equipped with a recommender system that uses natural language processing to tailor online resources to patients according to their psychosocial needs. OBJECTIVE To outline the development protocol and to evaluate AICF on its precision and recall in recommending resources to cancer OSG members. METHODS Human input informed the design and evaluation on its ability to 1) appropriately identify key words indicating a psychosocial concern and 2) recommend the most appropriate online resource to the OSG member expressing each concern. Three rounds of human evaluation and algorithm improvement were performed iteratively. RESULTS We evaluated 7,190 outputs and achieved .797 precision, .981 recall, and an F1 score of .880 by the third round of evaluation. Resources were recommended to 48 patients and 25 (52.1%) accessed at least one resource. Of those who accessed the resources, 75.4% found them useful. CONCLUSIONS The preliminary findings suggest that AICF can help provide tailored support for cancer OSG members with high precision, recall, and satisfaction. AICF has undergone rigorous human evaluation and the results provide much-needed evidence, while outlining potential strengths and weaknesses for future applications in supportive care.

Being the infidelity partner: Narratives of lived experiences in an online support group

Taking into account the secretive nature of infidelity experiences and their adverse impact on the involved partners, the aim of the present qualitative study was to examine how individuals—who have been engaged in extradyadic relationships, as “affair partners”—narrate their experiences in an online support group. The study analyzed 60 posts, published over a period of 6 months in an online support community. Three main themes emerged through the thematic analysis conducted. The first theme involved conflicting dimensions of affair partner experience, in which the following sub-themes were identified: 1) living in the shadow of loss, and 2) the prevalence of ambivalence: when opposite impulses coexist. The second theme refers to the centripetal aspects of the relationship and within this section the following sub-themes are defined: 1) the relationship as a supportive environment and 2) between plenitude and dearth: the desire for exclusivity. Finally, the third theme refers to the lessons learned by the affair partners and their generalizing conclusions such experiences. The present study underlines how group participants reconstruct their experiences of extradyadic relationships and how they create new ways of meaning making about them. The findings involve reflexive conclusions about intimate relationships capturing elements of broader cultural narratives, representations and dilemmas of self and relationships, as presented in written transactions in online support groups.

Online Sobriety Communities for Women's Problematic Alcohol Use: A Mini Review of Existing Qualitative and Quantitative Research

The increase in women's drinking is one of the most prominent trends in alcohol consumption in the UK in recent history, possibly exacerbated by COVID-19 lockdown measures. Higher rates of drinking are associated with substantial economic, health, and social costs. However, women are less likely to seek treatment for Alcohol Use Disorder (AUD) than men and have less successful treatment outcomes from traditional treatment paths, such as 12-step programs and in-patient care. Female heavy drinkers may also experience particular forms of gendered stigma that affect their experiences of addiction and recovery and their desire or ability to access these more “traditional” services. This review provides an overview of existing qualitative and quantitative research regarding online sobriety communities that are predominantly utilised by women, such as non-12-step alcohol online support groups (AOSGs) and temporary abstinence initiatives (TAIs). This is a small—but expanding—body of literature emerging as “sober curiosity” and “mindful drinking” are trending in Western contexts such as the UK, particularly amongst young women who do not identify with traditional, binary recovery language such as “alcoholic” and “addict.” This review highlights the gaps in research and concludes that further research regarding these new treatment pathways, and women's experiences when utilising them, must be conducted to provide more evidence-based options for women who want to address problematic drinking. Public health bodies could also learn more effective strategies from these innovative solutions to reduce alcohol consumption generally.

Seeking Support, Posting Your Sorrows, and Getting Misinformed in Return A codebook for a quantitative content analysis on mental health online support groups (Preprint)

BACKGROUND The potential of the Internet to help chronic patients to cope with their condition was present from the times when it had become clear what types of services the new device would provide. Expected changes were beneficial, many thought, for communication between patients and physicians, patients and health care institutions. Some reserve was discernible when Web 2.0 came, and increased communication from patient to patient with it. OBJECTIVE Keeping this development in mind, the projected study is intended to find out how and why such online support groups for mental health can have negative outcomes for the people who turn there for help. It aspires to reach beyond the simple equations that communication between patients and physicians is good, while patient-to-patient communication is dangerous. METHODS A codebook for the content analysis of Facebook online support groups has been developed and a content analysis will be conducted on bundles of posts. Three consecutive periods of one year will be studied. The sample will consist of utterances in two groups, one moderated the other unmoderated. The major analysis will bring together indications of health care shortcomings, medical errors, and holding wrong health beliefs on the one side and conditions and perceptions on the other. Aside from a few analyses comparing different bundles, individual utterances will be the unit of analysis in most cases. A bundle will be selected (in a time-stratified sample) if a group member asks a declarative or procedural knowledge question, seeks help in making a decision, or wants to be emotionally supported. The design will allow three more minor perspectives: comparing moderated and unmoderated support groups, describing the effects of the COVID-19 pandemic by separating the study period into before Covid (year 2019), Year 1 (2020) and Year 2 (2021) of the COVID-19 Pandemic. RESULTS We demonstrated the usability of the proposed systematic framework with 11 threads (61 utterances) coded independently by two coders: using Krippendorff’s alpha, the coders met intercoder reliability (α = .88, range: .73- 1). CONCLUSIONS The codebook is a rigorous and standardized method for the analysis of discussions in online support groups. For discussion and interpretation, we expect unhealthy present relations between health literacy and patient empowerment or a development towards such a state to decisively explain an output by the health care system that falls short of an optimum.