Participation In Online Support Groups Research Articles

‘One-thousand miles and counting’: reflections on the trail to recovery

ABSTRACT While some studies have explored the effectiveness of self-directed participation in online support groups for survivors of cancer after treatment, there is a dearth of focus on participation in nontraditional support groups for extended periods of time, whether the individuals have ongoing treatment, metastatic cancer, or show no evidence of disease. This study is the second instalment of a longitudinal investigation into the benefits of a hiking programme for cancer survivors, four years after the original investigation. The purpose of the study is to determine whether participation in the hiking program contributes to members’ subjective sense of wellbeing and quality of life over the course of time.

Use of YouTube to watch health-related videos and participation in online support groups among US adults with heart disease, diabetes, and hypertension.

ObjectiveSocial media use has grown over time. However, it is unclear how people with a self-reported history of cardiovascular disease or cardiovascular disease-related risk factors such as diabetes and hypertension use social media.MethodsData from the 2020 Health Information National Trends Survey (HINTS 5, Cycle 4) were analyzed (N = 3865). Only respondents with complete data for all variables of interest were included in the analyses, resulting in 306 respondents with a heart condition, 1291 with hypertension, and 608 with diabetes. We explored associations between two dependent variables: (1) participated in an online forum or support group and (2) watched a health-related video on YouTube, and sociodemographic factors and patient-provider communication. Analyses were conducted separately by medical condition. Odds ratios, 95% confidence intervals, and p-values were calculated.ResultsIn respondents with a heart condition, hypertension, or diabetes, 5.4%, 8.4%, and 10.3% had participated in an online support group and 29.6%, 40.4%, and 36.6% had watched health-related videos on YouTube, respectively. Univariately, the odds of using online support groups was associated with younger age (vs. > = 65) in people with a heart condition and hypertension, but not diabetes. Regarding YouTube, younger age was associated with watching health-related videos across all three medical conditions, with additional gender and education associations observed in those with hypertension. There were no associations between social media use and patient-provider communication.ConclusionsThese findings may inform the selection of social media platforms for behavioral interventions depending on the intended patient population and goals (e.g. social support vs. video-based health education).

Impacts of online support groups on quality of life, and perceived anxiety and depression in those with ME/CFS: a survey

ABSTRACT Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating condition that can negatively affect physical and mental health [1,2]. People with ME/CFS report lower perceived levels of social support, which further exacerbate challenges with mental health and has been linked to a higher prevalence of depression and anxiety in this population [3]. There are many mental health benefits associated with participation in in-person support groups; however, it is unknown if these benefits translate to online support groups [5]. Purpose To examine the perceived impacts of participation in online support groups on depression, anxiety and quality of life among people with ME/CFS. Results Responses (n = 76) to an online survey indicated positive and negative experiences with participation in online support groups. Positive experiences included a sense of belonging, validation, supportive friendships and feelings of positively impacting others. Negative experiences included jealousy, decreased hope and optimism and disagreement regarding treatment strategies. Conclusion Participation in online support groups was believed to decrease perceived feelings of depression and increase the quality of life in those with ME/CFS. No significant impacts on anxiety were found. Overall, participants reported engagement in online support groups to be a positive experience.

Persistent digital divide in health-related internet use among cancer survivors: findings from the Health Information National Trends Survey, 2003-2018.

PurposePrior research on the use of the internet among cancer survivors indicates a digital divide. The online landscape and patterns of information consumption, however, have notably changed over the past decade necessitating an updated examination of health-related internet use (HRIU) among cancer survivors.MethodsUsing survey data from 2003, 2005, 2007, 2011, 2013, 2017, and 2018 Health Information National Trends Survey (HINTS) iterations, the objectives of this study were to report prevalence, trends, and user profiles in HRIU in terms of emailing doctors, buying medicine online, and support group participation. Descriptive analyses and weighted multivariate logistic regression analyses were performed.ResultsCancer survivors who reported not using the internet were more likely to be older, belong to ethnic minorities, be less educated, and reside in rural areas as compared with those who reported using the internet. Except for participation in online support groups, all other types of HRIU increased in prevalence across the years.ConclusionsConsistent with the increased penetration of the internet and the altered online health communication landscape, we found increased prevalence of HRIU among cancer survivors. However, the digital divide persists in terms of internet access. These findings can inform initiatives to bridge the gap among survivors of varying profiles in using the internet for their health needs.Implications for Cancer SurvivorsThere is increased reliance on online platforms to obtain and communicate health-related information. The risk with this approach is potential oversight of ensuring equity in terms of internet access and technology literacy among survivors.Electronic supplementary materialThe online version of this article (10.1007/s11764-020-00913-8) contains supplementary material, which is available to authorized users.

Online Support Group Participation and Social Support: Incorporating Identification and Interpersonal Bonds

An increasing number of people with chronic diseases exchange social support using online support groups (OSGs). However, there is little understanding of group communication mechanisms that underpin the relationship between OSG participation and social support. Drawing on Prentice, Miller, and Lightdale’s common-identity and common-bond framework, we propose and test a theoretical model that explains group communication mechanisms through which members’ participation influences their perceived social support. In the process, we identified and empirically validated a three-factor solution for an OSG participation scale. Based on 356 users across 12 popular OSGs, we find that two group communication mechanisms—identification with the community and interpersonal bonds with other members—mediate the relationship between OSG participation and perceived social support. Specifically, identification has a stronger mediating effect than interpersonal bonds in the relationship between OSG participation and perceived social support. We also discuss theoretical and practical implications.

Seeing Others Receive Support Online: Effects of Self-Disclosure and Similarity on Perceived Similarity and Health Behavior Intention

Participation in online support groups leads to improved health. While viewing others’ interactions is one of the major activities in online support groups and lurkers comprise the majority of online support group participants, the literature on how participants benefit from viewing others’ posts and comments is sparse. Building upon the Social Penetration Theory and the narrative persuasion process, this study focused on two key features of online support groups, self-disclosure and similarity. It tested their direct effects on viewers’ perceived similarity with the poster and indirect effects on viewers’ behavior intention through three mediators: perceived similarity, identification, and perceived support availability. A 2 (similarity vs. dissimilarity) by 3 (factual vs. cognitive vs. emotional self-disclosure) online experiment involving 280 overweight adult participants was conducted. Findings showed similarity of health status led to increased level of perceived similarity and moderated the effects of self-disclosure. Self-disclosure and similarity increased dieting intention through increasing perceived similarity, identification, and perceived support availability. This study provides experimental evidence suggesting viewers can benefit from online support groups through a narrative persuasion process.

Findings and Ethical Considerations From a Thematic Analysis of Threads Within Tinnitus Online Support Groups.

Tinnitus is the perception of noise without a corresponding external stimulus. Current management typically aims to moderate associated psychosocial stressors and allow sufferers to retain an adequate quality of life. With the increasing recognition of the Internet as a repository for health advice, information, and support, the online support group has become a popular coping strategy for those living with chronic conditions such as tinnitus. Patients find that communicating with each other, providing encouragement, and sharing information in the absence of physical and temporal boundaries are invaluable ways of managing their condition. The purpose of this study was to explore the potential positive and negative consequences of participating in online support groups for tinnitus. Discussion forum threads were collated from across 4 public online support group websites. All threads were initiated between February and April 2016. Texts from these threads were coded by 3 separate analysts using both inductive and deductive thematic analysis, until data saturation was reached. Analysis of 75 threads (641 individual posts) found 9 independent themes pertaining to aspects of participation in tinnitus online support groups. The results revealed that using the forums allowed users to exchange knowledge and experiences, express complex emotions, profit from a network of support, and engage in everyday conversation away from the burden of their tinnitus. However, some experiences appeared to be compromised by negative messages, limited communication, and informational issues such as conflicting advice or information overload. This study represents the 1st research into discussion forums in tinnitus online support groups. A nonintrusive (passive) analysis method was used, whereby messages comprising the dataset were retrieved without direct interaction with the discussion forum. Individuals and the community of tinnitus online support groups are deemed to be at low risk from potential harm in this study. Most tinnitus patients likely benefit from accessing online support groups, for example, they discover they are not alone, and they find new coping strategies. However, for those who are particularly vulnerable or prone to psychological stress, accessing these groups could be detrimental.

Online support groups for women with breast cancer.

Online support groups for women with breast cancer.

Online Support Groups for Depression

This mixed-methods study aimed to explore the initial process of engagement with an online support group (OSG) for depression. Fifteen British National Health Service patients experiencing depression who had not previously used an OSG for depression were offered facilitated access to an existing peer-to-peer OSG for 10 weeks. Pre- and post-measures of depression, social support, and self-stigma were taken in addition to a weekly measure of OSG usage. A follow-up qualitative interview was conducted with a subsample of nine participants. Depression and self-stigma reduced over the 10-week period, but perceived social support did not change. There was no evidence of adverse outcomes. Perceived benefits of OSG participation included connection to others, normalization of depression, and stigma reduction. However, engagement with the OSG was generally low. Barriers included concerns over causing harm to others or being harmed oneself, feeling different from others in the group, and fears of being judged by others. OSGs may potentially reduce depressive symptoms and perceived self-stigma. However, considerable barriers may hinder people with depression from engaging with OSGs. Further work is needed to determine who will benefit most from participating in OSGs for depression and how best to facilitate engagement.

Emotional approach coping and the effects of online peer-led support group participation among patients with breast cancer: a longitudinal study.

BackgroundPrevious research on the effects of online peer support on psychological well-being of patients with cancer showed mixed findings. There is a need for longitudinal studies explaining if and when online peer-led support groups are beneficial. How patients cope with emotions that come along with the cancer diagnosis might influence effectiveness of online participation. Emotional approach coping is a construct encompassing the intentional use of emotional processing and emotional expression in efforts to manage adverse circumstances.ObjectiveIn this longitudinal study, we hypothesize that mixed findings in previous research are partly caused by individual differences in coping with emotions, which may moderate the effects of online support group participation on patients’ well-being.MethodsA total of 133 Dutch patients with breast cancer filled out a baseline (T0) and a follow-up (T1, 6 months later) questionnaire assessing intensity of online participation within the online support community, emotional approach coping (ie, actively processing and expressing emotions), and psychological well-being (depression, emotional well-being, and breast cancer–related concerns). There were 109 patients who visited an online support community at both points in time. Repeated measures ANOVAs assessed change in well-being over time.ResultsResults showed 3-way interactions of time, online intensity of participation, and emotional approach coping on emotional well-being (F 1,89=4.232, P=.04, η2 ρ=.045) and depression (F 1,88=8.167, P=.005, η2 ρ=.085). Online support group participation increased emotional well-being over time for patients who scored low on emotional approach coping at T0, provided that they were highly active online. Patients who were highly active online with a high score on emotional approach coping reported no change in sense of well-being, but showed the highest score on well-being overall. Participating less frequently online was only beneficial for patients who scored high on emotional approach coping, showing an increase in well-being over time. Patients participating less frequently and with a low score on emotional approach coping reported no significant change in well-being over time.ConclusionsThis study extends previous findings on the effects of online peer support in two ways: by testing changes in well-being as a function of intensity of online support group participation and by examining the role of individual differences in emotional coping styles. Findings showed no negative effects of intense support group participation. Participating frequently online was especially helpful for patients who approach their emotions less actively; their emotional well-being increased over time. In contrast, frequent online users who actively approach their emotions experienced no change in well-being, reporting highest levels of well-being overall. For patients who participate less intensively within the support community, coping style seems to outweigh effects of online participation; over time, patients who actively approached emotions experienced an increase in psychological well-being, whereas patients with a low score on emotional approach coping reported no change in depression and emotional well-being.

Low-Income Adults' Preferences for Receiving Nutrition Education Communications Using Various Media Technologies

Objective: This study explores low-income adults' access to and use of various media, as well as their preferences for receiving nutrition education (NE) communications. Study Design, Setting, Participants, and Intervention: One-on-one surveys were conducted with a convenience sample of low-income adults (n1⁄4228) recruited from 13 Supplemental Nutrition Assistance Program offices in New Jersey. Outcome, Measures and Analysis: Participants' media use, how they sought nutrition information, and how they preferred to receive NE was recorded; descriptive statistics were run. Results: The participants, aged 18-67 years (mean1⁄435.6 13.0); were mostly female (74.1%), and black (58.2%). Internet use was high (93%). The more media technologies were used, the more they were used for NE, although NE use was consistently low. Respectively percentage use, and use for NE were: websites (80%, 28%), You Tube (64%, 25%), emails (63%, 19%), and Facebook (54%, 14%). When asked if they would like to receive NE via the media used by half or more of the population, on a 5-point Likert scale (11⁄4not interested; 51⁄4really interested), means preferences were: websites (m1⁄43.8 1.6), emails (m1⁄43.6 1.6), online videos (m1⁄43.6 1.6), online exercise games (m1⁄43.5 1.7), Facebook pages (3.4 1.8), YouTube (m1⁄43.4 1.6), Nutrition DVD's (m1⁄43.4 1.7). Least favored technologies for receiving NE included: participation in online support groups (3.0 1.7), online nutrition games (m1⁄43.0 1.7), podcasts 2.6 1.7, blogs (m1⁄4 2.4 1.7) and Twitter (m1⁄41.8 1.4), all of which were used by <50%. Conclusions and Implications:Various media are used by low-income adult participants, but preferences to seek nutrition information vary. Nutrition communications should be tailored accordingly to maximize outreach and acceptability. Funding: Supplemental Nutrition Assistance Program Education

Adopting a survivor identity after cancer in a peer support context

The term cancer survivor can refer to individuals from diagnosis through the rest of their life. However, not all people with cancer identify as a survivor, and underlying factors and correlates are yet to be well-explored empirically. Study 1 surveyed men in a prostate cancer peer support network (n = 514), exploring psychosocial variables related to adopting a survivor identity. Study 2 interviewed 160 women with breast cancer in an online support group and collected observational data, assessing how survivor identity relates to perceptions of and participation in online support groups. For men, survivor identity (35 %) was related to lower levels of threat appraisal (p = .000), more deliberate rumination (p = .042), gaining greater understanding of cancer experience through peers (p = .041) and a higher, though marginally significant, level of posttraumatic growth (p = .052). Women adopting a survivor identity (50 %) had higher rates of online support group posts (p = .048), a greater feeling of mattering to the group (p = .002), rated the group as more helpful (p = .004 to .01) and had less difficulty in relating to the group (p = .002) than women not identifying as a survivor. Survivor identity was related to active and positive engagement with peers, and cognitive processing. While the cancer survivor metaphor may be salient for some people diagnosed with cancer, many did not associate with the term, highlighting the complexity surrounding survivorship discourse and the need to be sensitive to unique individual needs in psychosocial interventions that involve groups.

Emotional Coping Differences Among Breast Cancer Patients From an Online Support Group: A Cross-Sectional Study

BackgroundDue to mixed findings in research on the effect of online peer-to-peer support on psychological well-being, there is a need for studies explaining why and when online support communities are beneficial for cancer patients.ObjectivePrevious studies have typically not taken into account individual coping differences, despite the fact that patients have different strategies to cope with cancer-related emotions. In the current study, it was predicted that the effects of online support group participation would partly depend on patients’ ability to cope with thoughts and emotions regarding the illness.MethodsFor this study, 184 Dutch breast cancer patients filled out a questionnaire assessing activity within a peer-led online support community, coping with emotions and thoughts regarding the illness (cognitive avoidance, emotional processing, and expression) and psychological well-being (depression, breast cancer-related concerns, and emotional well-being). Of these, 163 patients were visiting an online peer-led support community.ResultsResults showed interactions of the intensity of support group participation and coping style on psychological well-being. Specifically, we found an interaction of online activity and emotional expression on depression (beta=–.17, P=.030), a marginally significant interaction of online activity and emotional expression on emotional well-being (beta=.14, P=.089), and an interaction of online activity and cognitive avoidance on breast cancer–related concerns (beta=.15, P=.027). For patients who actively dealt with their emotions and thoughts, active online support group participation was positively related to psychological well-being. For patients high on avoidance of illness-related thoughts or low on emotional expression, active participation was negatively related to measures of well-being.ConclusionsThe current study revealed the role of individual differences in coping in online support group participation. Results suggest that breast cancer patients’ ability to cope with emotions and thoughts regarding the illness influence the relationship between online support group participation and psychological well-being.

Trends in U.S. Consumers’ Use of E-Health Services: Fine-Grained Results from a Longitudinal, Demographic Survey

Although growth in U.S. consumers’ overall use of e-health is strong, it is being driven by only a portion of the e-health services that are offered through online health portals. Fine-grained, longitudinal analysis of three representative e-health services shows that, while online communication with medical personnel has grown consistently between 2003 and 2012, the purchase of health supplies online plateaued by 2007, and participation in online support groups has been flat since 2003. Socio-economic factors of income and education level continue to have an impact on consumers’ use of e-health; however, differences based on age, sex, and race/ethnicity are trending lower during this period. The findings caution against the common practice of studying e-health adoption principally at the level of online health portals, which can mask substantial variation in adoption trends among the underlying e-health services, and suggest that it is important to update trend studies on a regular basis to maintain currency.

A qualitative investigation of the impact of peer to peer online support for women living with Polycystic Ovary Syndrome

BackgroundPolycystic Ovary Syndrome is a common, chronic condition which affects women living with the condition both physically and psychologically. Social support may be beneficial to sufferers in coping with chronic conditions and the Internet is becoming a common place for accessing social support and information. The aim of this study was to consider the experiences of women living with Polycystic Ovary Syndrome who access and participate in an online support group discussion forum dedicated to issues surrounding this condition.MethodsFifty participants responded to a series of open-ended questions via an online survey.ResultsThematic analysis revealed a number of empowering and disempowering experiences associated with online support group participation. The empowering processes reported by members of the group included: Connecting with others who understand; Access to information and advice; Interaction with healthcare professionals; Treatment-related decision making; Improved adjustment and management. In terms disempowering processes, only two were described by group participants: Reading about the negative experiences of others and Feeling like an outsider.ConclusionsFor women living with Polycystic Ovary Syndrome, participation within an online support group may help to empower them in a range of important ways however, there may be some disempowering consequences.

Online support group use and psychological health for individuals living with HIV/AIDS

ObjectiveThe Internet provides an opportunity for individuals with HIV/AIDS to obtain support and information in a timely and convenient manner. The present study examines the psychological effects of online support group use for individuals living with HIV/AIDS. MethodsA total of 340 HIV positive online support group users completed an online survey. ResultsResults from structural equation modeling showed that individuals with higher levels of online support group participation had higher levels of empowering processes, which in turn, had higher levels of optimism toward life. Optimism was related to lower levels of loneliness and depression while loneliness was also related to higher levels of depression. ConclusionThe findings suggest that participants with higher levels of online support group participation had better psychological health than those with lower levels of participation. Practice implicationsFindings suggest that the use of online support groups could be promoted to individuals with HIV/AIDS. Healthcare professionals should work to increase the motivation and confidence patients have in using online support groups. Health education should also be provided to patients with HIV/AIDS so to improve their skills and literacy in using online support groups.

Empowering processes within prostate cancer online support groups

A growing body of literature suggests that participation in online support groups may empower patients. Indeed, a number of potentially empowering processes have been identified, however to date these processes have been described using data derived from either female or mixed gender support groups. Little is known about how participation in predominantly male online support groups (e.g., prostate cancer) may potentially empower members. A total of 682 messages from two prostate cancer online support groups were analysed using deductive thematic analysis, coding for the presence of potentially empowering processes, as described by van Uden-Kraan et al. (2008). The analysis confirmed the existence of all six potentially empowering processes, including: ‘information provision’, ‘provision of emotional support’, ‘provision of esteem support’, ‘noting similarity of experiences’, ‘discussion of sensitive topics’ and ‘chit-chat’. The discussion between members illustrated the value they attached to knowledge, mastery and control over their lives with cancer, strongly favouring informed choice and active participation in disease management. In conclusion, the findings from this study extend our knowledge of the potentially empowering processes which members may encounter as a result of participation in online support groups and suggest that similar processes may be found in predominantly male support groups, such as prostate cancer.

Looking Similar Promotes Group Stability in a Game-Based Virtual Community.

Online support groups are popular Web-based resources that provide tailored information and peer support through virtual communities and fulfill the users' needs for empowerment and belonging. However, the therapeutic potential of online support groups is at present limited by the lack of systematic research on the cognitive mechanisms underlying social group cohesion in virtual communities. We might increase the benefits of participation in online support groups if we gain more insight into the factors that promote long-term commitment to peer support. One approach to foster the therapeutic potential of online support groups could be to increase social selection based on visual similarity. We performed a case study using the popular virtual setting of "World of Warcraft" (Blizzard Entertainment, Irvine, CA). We monitored the social dynamics of a virtual community composed of avatars whose appearance was identical during a period of 3 months, biweekly, for a total of 24 measures. We observed that this homogeneous community displayed a very high level of group stability over time in terms of the total number of members, the number of members that stayed the same, and the number of arrivals and departures, despite the fact that belonging to a heterogeneous group typically favors the success of the group with respect to game progression. Our results confirm that appearance can trigger social selection in online virtual communities. Displaying a similar appearance could be one way to strengthen social bonds among peers who share various health and well-being issues. Thus, the therapeutic potential of online support groups could be promoted through visual cohesion.

Developing a model for online support group use, empowering processes and psychosocial outcomes for individuals living with HIV/AIDS

This study examined the mechanism through which online support group (OSG) participation may promote patient empowerment among 340 individuals living with HIV/AIDS. Results from structural equation modelling revealed that greater use of OSGs was associated with more frequent occurrence of the empowering processes as measured by receiving useful information, receiving social support, finding positive meaning and helping others. Receiving useful information and finding positive meaning were related to higher levels of adaptive coping and lower levels of maladaptive coping, while receiving social support and helping others were related to higher levels of self-care self-efficacy, which in turn was related to higher levels of adaptive coping, and lower levels of maladaptive coping. Finally, higher levels of maladaptive coping were related to poorer quality of life, while higher levels of adaptive coping were related to better quality of life. Results suggest that OSG participation may offer some benefits for those living with HIV/AIDS.

Empowering processes in online support groups among people living with HIV/AIDS: A comparative analysis of ‘lurkers’ and ‘posters’

The proliferation of online support groups provides an opportunity for individuals living with HIV/AIDS to obtain support online. The present study aimed to explore how different levels of participation in online support groups are associated with empowering processes and outcomes for individuals living with HIV/AIDS. A total of 340 individuals living with HIV/AIDS were recruited. They completed an online questionnaire consisting of measures on satisfaction with online support groups, empowering processes, self-care self efficacy, loneliness, optimism, coping, depression, and health-related quality of life. Results revealed that compared to posters, members who only read the messages (lurkers) scored lower in receiving social support and receiving useful information in empowering processes, and lower in satisfaction with their relationship with group members. They also scored higher in distraction and lower in planning in the brief COPE. In addition, they scored lower in social function and higher in energy. There were no significant differences in self-care self efficacy, loneliness, depression, or optimism between posters and lurkers. Our results suggest that lurking in the online support groups may be as empowering as reading and posting messages to the groups. More research is needed to identify the long term effects of online support group use.