Health-related on-line forums: what's the big attraction?

This study investigates what motivates people to make use of health-related online forums, and how people feel that using these forums helps them in coping with their situation. Results are based on an online questionnaire (N = 189) among users of a variety of health forums. Findings show an overall positive effect of using forums on the degree to which people are better able to cope with the situation they are facing, both socially and with their condition. This especially holds for people who find forums a convenient tool for inclusion or gathering information. A negative effect on coping, however, is found for people who primarily use forums for discussion. The study also shows that features that often are mentioned in literature on computer-mediated communication (i.e., the anonymity it affords, its text-based character, and the possibility it offers for network expansion) are recognized but appreciated differently by users. Users who feel stigmatized especially appreciate the anonymity of online forums, while people who are restricted in their mobility appreciate the possibilities for network expansion.     

The Dark Side of Addiction Support Forums: Impacts of Poor Quality and Insufficient Emotional Support on Perceived Support Availability and Health Efficacy

Research has identified many benefits of participating in online social support forums; however, the potential negative impacts of these communities have rarely been examined. This study explored the negative impacts of low quality (i.e., low person-centered) and insufficient (i.e., under-benefitted) emotional support on online support seekers. Health stigma and perceived support availability were also examined as mediating and moderating variables, respectively, in the model. An online survey of addiction support forum users (N = 321) was conducted. Results showed that for participants with low health stigma, low person-centered support decreased health self-efficacy through reducing perceived online emotional support availability, but under-benefitted support did not impact them. For those with high health stigma, low person-centered emotional support had positive effects on health self-efficacy through increasing perceived support availability, whereas under-benefitted support reduced health self-efficacy through decreasing perceived support availability. Importantly, a considerable proportion of participants (44.86%) reported under-benefitted emotional support. These findings suggest support forum participation can have negative impacts, but not all participants are adversely impacted equally. Instead, moderating variables, such as health stigma, can play an important role. Implications for future research and health care practitioners are discussed.     

Gender, cancer experience and internet use: a comparative keyword analysis of interviews and online cancer support groups

A new method, comparative keyword analysis, is used to compare the language of men and women with cancer in 97 research interviews and two popular internet based support groups for people with cancer. The method is suited to the conjoint qualitative and quantitative analysis of differences between large bodies of text, an alternative to the 'code and retrieval' approach used in much thematic analysis of qualitative materials. Web forums are a rich source of data about illness experience and gender differences. Marked differences in the performance of gender are evident. These differences follow linguistic and other behavioural patterns (such as social network differences) established in other contexts. Men with prostate cancer indicate in research interviews that they are more likely to seek information on the internet; women with breast cancer that they are more likely to seek social and emotional support. Men's concerns cluster around treatment information, medical personnel and procedures. Their experience of disease is more localised on particular areas of the body, while women's experience is more holistic. Women's forum postings orientate much more towards the exchange of emotional support, including concern with the impact of illness on a wide range of other people. Women's use of superlatives as well as words referring to feelings indicate their enactment of greater emotional expressivity. Web forums are platforms for an intensification of men's knowledge gathering activities. Web forums, though actually quite publicly visible, appear to be subjectively experienced by both sexes as relatively private places for the exchange of intimate personal information. The 'privacy' of the breast cancer forum facilitated interactions found in other studies to be characteristic of women's friendship groups.     

Social Networking in Online Support Groups for Health: How Online Social Networking Benefits Patients

An increasing number of online support groups (OSGs) have embraced the features of social networking. So far, little is known about how patients use and benefit from these features. By implementing the uses-and-gratifications framework, the author conducted an online survey with current users of OSGs to examine associations among motivation, use of specific features of OSG, and support outcomes. Findings suggest that OSG users make selective use of varied features depending on their needs, and that perceptions of receiving emotional and informational support are associated more with the use of some features than others. For example, those with strong motivation for social interaction use diverse features of OSG and make one-to-one connections with other users by friending. In contrast, those with strong motivation for information seeking limit their use primarily to discussion boards. Results also show that online social networking features, such as friending and sharing of personal stories on blogs, are helpful in satisfying the need for emotional support. The present study sheds light on online social networking features in the context of health-related OSGs and provides practical lessons on how to improve the capacity of OSGs to serve the needs of their users.     

Who can you trust? Credibility assessment in online health forums

As the cost of health care rises governments everywhere are examining how on-line services can replace or augment face-to-face services. Consequently, many health bodies are establishing on-line health forums where patients can share ideas with, or solicit information from, both other patients and health professionals. In the wake of this trend, many on-line forums have arisen which do not have the imprimatur of official government services but are run and managed by private individuals sharing experiences outside of the patient-clinician channel. This phenomenon creates risks and challenges for users who need to evaluate the credibility of unknown and often anonymous contributors to these forums. This paper examines how users assess the credibility of the information in these forums. Five criteria were discovered in the first stage of the work. We then quantitatively tested the relationship between those criteria based on two types of information. Our analysis shows that different criteria are used by participants in online health forums for scientific information and experiential information. We used these novel findings to develop a model for how information credibility is assessed in online health forums. These findings provide important lessons for health promotion bodies considering how to encourage the sharing of valuable health information on-line as well as guidelines for improved tools for health self-management.     

The Exchange of Social Support on Online Bariatric Surgery Discussion Forums: A Mixed-Methods Content Analysis

Bariatric surgery patients often experience physical and psychosocial stressors, and difficulty adjusting to significant lifestyle changes. As a result, social support groups that provide patients with support, coping skills, and nutritional information are valuable components of bariatric care. Support group attendance at bariatric centers is associated with greater post-surgery weight loss; however, several barriers hinder attendance at in-person support groups (e.g., travel distance to bariatric centers). Consequently, online support forums are an increasingly utilized resource for patients both before and after surgery. This study examined and described the type and frequency of social support provided on a large online bariatric surgery forum. A total of 1,412 messages in the pre- (n = 822) and post-surgery (n = 590) sections of the forum were coded using qualitative content analysis according to Cutrona and Suhr’s (1992) Social Support Behavior Code model (i.e., including informational, tangible, esteem, network, and emotional support types). The majority of messages provided informational and emotional support regarding: a) factual information about the bariatric procedure and nutrition; b) advice for coping with the surgery preparation process, and physical symptoms; and c) encouragement regarding adherence to surgical guidelines, and weight loss progress. Network, esteem, and tangible support types were less frequent than informational and emotional support types. The results inform healthcare providers about the types of social support available to bariatric patients on online support forums and, thus, encourage appropriate referrals to this resource.     

Community‐consumerism: negotiating risk in online drug communities

This study explores the social organisation of risk within online drug‐related communities. Drawing on in‐depth interviews with participants from two Norwegian Internet drug forums, the paper illustrates how participation in such forums influenced notions of risk, and how it supported notions of participants as being informed, responsible and empowered. First, the forums facilitated an easy exchange of user‐generated drug information, which helped members present themselves as informed and competent. Second, members used the communal resources on the forums to negotiate their drug‐using identities, in which they resisted stigma and argued for a responsible drug‐using identity. Third, the social inclusion and sense of community within the forums formed the basis for collective support, which helped empower those involved. Conceptualised as community‐consumerism, these findings highlight the social mechanisms involved in the information self‐sufficiency and decentralisation of authority on the Internet, in which members created an alternative frame of reference for drug use and associated health. The concept of community‐consumerism offers a perspective on the social organisation of risk within online communities and ought to be of relevance for future studies on online health‐related discourses, not only those related to drugs.     

The commodification of patient opinion: the digital patient experience economy in the age of big data

As part of the digital health phenomenon, a plethora of interactive digital media platforms have been established in recent years to elicit lay people's experiences of illness and health care. The overt function of these platforms is to provide forums where patients and caregivers can share their experiences with others, benefit from the support and knowledge of other users and contribute to large aggregated data archives as part of developing better medical treatments and services and conducting medical research. However, what may not always be readily apparent to the users of these platforms are the growing commercial uses by many of the platforms’ owners of the data they contribute. This article examines this phenomenon of what I term ‘the digital patient experience economy’. Such aspects of this economy as prosumption (the combination of content consumption and production that is characteristic of the use of Web 2.0 technologies), the valorising of big data, the discourse and ethic of sharing and the commercialisation of affective labour are discussed. It is argued that via these online platforms patients’ opinions and experiences may be expressed in more diverse and accessible forums than ever before, but simultaneously they have become exploited in novel ways.     

Social Media Use and Well-Being in People with Physical Disabilities: Influence of SNS and Online Community Uses on Social Support,Depression, and Psychological Disposition

This study examined the relationships across social media use, social support, depression, and general psychological disposition among people with movement or mobility disabilities in Korea. First, with survey data (n = 91) collected from users of social network sites (SNSs) and online communities, hypotheses regarding positive associations between intensity of an individual’s engagement in social media and four different types of social support—emotional, instrumental, informational, and appraisal support—were tested as well as hypotheses regarding mediation effects of the social support variables in the association between social media use and depression. Second, through focus group interviews (n = 15), influences of social media use on social support were more thoroughly explored as well as their influences on general psychological disposition. Results from hierarchical regression analyses confirmed that both intensity of SNS use and online community use significantly predicted instrumental, informational, and appraisal support, while they did not predict emotional support. Further regression and Sobel tests showed that higher levels of intensity of SNS use and of online community use both led to lower levels of depression through the mediation of instrumental and informational support. Analysis of the interviews further revealed the positive roles of social media use in building social support and healthy psychological dispositions. However, analysis also revealed some negative consequences of and limitations to social media use for those with physical disabilities. These findings expand our knowledge of the context and implications of engaging in online social activities for people with physical disabilities.     

Torrenting values,feelings, and thoughts—Cyber nursing and virtual self-care in a breast augmentation forum

Earlier research shows that breast augmentation is positively correlated with positive psychological states. The aim of this study was to explore the shared values, feelings, and thoughts within the culture of breast enlargement among women visiting Internet-based forums when considering and/or undergoing esthetic plastic surgery. The study used a netnographic method for gathering and analyzing data. The findings show that the women used the Internet forum to provide emotional support to other women. Through electronic postings, they cared for and nursed each others’ anxiety and feelings throughout the whole process. Apart from the process, another central issue was that the women''s relationships were frequently discussed; specifically their relationship to themselves, their environment, and with the surgeons. The findings suggest that Internet forums represent a channel through which posters can share values, feelings, and thoughts from the position of an agent of action as well as from a position as the object of action. These dual positions and the medium endow the women with a virtual nursing competence that would otherwise be unavailable. By introducing the concept of torrenting as a means of sharing important self-care information, the authors provide a concept that can be further explored in relation to post modern self-care strategies within contemporary nursing theories and practice.     

Correlates of partner support to abstain from prenatal alcohol use: a cross‐sectional survey among Dutch partners of pregnant women

Partners can play an important role, but are often ignored in interventions targeting the prevention of prenatal alcohol use. A better understanding of the correlates of partner support to abstain from prenatal alcohol use can help to make a better use of partner support. The aim of this study was to identify correlates of this support by analysing differences between partners reporting low versus high support. An online cross‐sectional study among 237 Dutch partners of pregnant women was conducted. Respondents were recruited through Dutch midwifery practices in September–October 2009. Questionnaires were based on the I‐Change Model. Chi‐square and t‐test showed that partners reporting high support were more likely to desire their partner to abstain from alcohol use and to have received advice from their pregnant spouse or midwife that abstinence was desirable. They also had stronger perceptions that the baby would experience harm from prenatal alcohol use and that harm could be more severe, and they saw more advantages and fewer disadvantages of providing support. They also reported more influence from their social environment encouraging their support, had greater self‐efficacy and had a stronger intention to support their partner during the remainder of the pregnancy compared to partners reporting low support. Health professionals may improve their alcohol advice by discussing the advantages and disadvantages of support with the partner and by encouraging couples to discuss and propose solutions for the situations in which partners find it difficult not to support alcohol abstinence. By providing an insight into important correlates of partner support, this study expands the research area aiming to reduce prenatal alcohol use.     

Online support for transgender people: an analysis of forums and social networks

Transgender people face a range of personal and social conflicts that strongly influence their well‐being. In many cases, the Internet can become the main resource in terms of finding support. The aim of this study was to understand how transgender people give and receive help online. Between 2013 and 2015, 122 online community conversations were collected on Italian forums and Facebook groups involving transgender people, and online interviews were conducted with 16 users of these communities. A qualitative content analysis was conducted by using the software package, NVivo10. The main categories that emerged were: motivations to join an online community, online help, differences between online and offline interactions, status, conflicts and professional help. Results indicate that participation in online communities often derives from the users’ need for help. This help can be given by peers who have had similar experiences, and by professionals who participate in the discussions as moderator. The need to test one's own identity, to compare oneself with others and to share one's personal experiences made online communities at risk of exposing users to invalidation and transphobic messages. Administrators and moderators try to ensure the safety of users, and suggest that they ask for professional help offline and/or online when over‐specific medical advice was sought. This study confirms that transgender people might find benefit from an online platform of help and support and might minimise distance problems, increase financial convenience and foster disinhibition.     

Developing patient-centred information for back pain sufferers

Objective To identify information needs among a group of back pain sufferers as well as the barriers that may prevent them from accessing this information. Design Data were collected through the use of open, in‐depth interviews, through contributions to the Norwegian Back Pain Association's online discussion list, and through a search of the literature. Participants Norwegian back pain sufferers and their carers. Main variables studied Information needs and barriers. Results The informants described information needs that covered a wide range of topics, clinical, financial, emotional and social. Informants wanted to understand the cause of their pain and wanted information about existing diagnoses and diagnostic procedures. Informants asked for information about treatment alternatives, both within and outside the established health‐care system, the effects of these treatment alternatives, their procedures, side‐effects and costs. In addition, informants wanted information about the social and emotional effects of long‐term pain; coping with everyday life; other people's experiences; and about welfare benefits and patient rights. Barriers to this information included the use of medical, legal and other jargon, doctors’ lack of time, lack of communication skills, lack of knowledge about back pain and attitudes to back pain patients. Conclusions To successfully address the questions and concerns of users, there should be an attempt to present information on as many of these topics as possible. Information should be presented in the user's own language, at several levels of understanding, and should include both evidence‐ and experienced‐based knowledge.     

‘No one is as invested in your continued good health as you should be:’ an exploration of the post‐surgical relationships between weight‐loss surgery patients and their home bariatric clinics

This article traces the post‐surgical relationship between weight‐loss surgery (WLS) patients and their home bariatric clinics. Following surgery, there is substantive drop off in patient attendance at both follow‐up appointments and support groups. While barriers to follow‐up are often discussed with the bariatric literature, patients themselves are typically defined as the problem. Based upon a thematic analysis of 217 blog posts and comments in two top patient‐led online forums, I demonstrate that bariatric patients tell a more complex story about their post‐surgical lives. I argue that WLS patients constitute a population with highly specialised medical needs that is caught between the requirements for living with surgically altered digestive systems and a lack of sufficient post‐operative follow‐up care from their home bariatric clinics. Although online forums provide spaces for patients to examine these post‐operative social and clinical experiences in critical terms, seek information and get support, ultimately the conversations serve to underline the value of personal responsibility for post‐operative outcomes–a framing that echoes that of the bariatric profession. This framing should be understood within a larger climate of weight‐based stigma and discrimination as well as neoliberal healthism.     

Postpartum Health Information Seeking Using Mobile Phones: Experiences of Low-Income Mothers

Objectives To assess low-income mothers’ perceptions of their postpartum information needs; describe their information seeking behavior; explore their use of mobile technology to address those needs; and to contribute to the sparse literature on postpartum health and wellness. Methods Exploratory community-based qualitative approach. Interviewees were recruited among clients of community partners and had children aged 48 months and under. A survey assessing demographics was used to identify low-income mothers. 10 low-income mothers were recruited from survey participants to complete in-depth interviews regarding postpartum information needs, information seeking, and technology use. Interviews were transcribed verbatim and coded by three researchers independently. Narratives were analyzed along predetermined (etic) and emergent (emic) categories. Results Establishing breastfeeding and solving breastfeeding problems were central postpartum concerns leading to information seeking. Interviewees reported almost exclusive use of mobile phones to access the Internet. Mobile applications were widely used during pregnancy, but were not valuable postpartum. Face-to-face information from medical professionals was found to be repetitive. Online information seeking was mediated by default mobile phone search engines, and occurred over short, fragmented time periods. College graduates reported searching for authoritative knowledge sources; non-graduates preferred forums. Conclusions for Practice Low-income postpartum women rely on their smartphones to find online infant care and self-care health information. Websites replace pregnancy-related mobile applications and complement face-to-face information. Changes in searching behavior and multitasking mean information must be easily accessible and readily understood. Knowledge of page-rank systems and use of current and emergent social media will allow health-related organizations to better engage with low-income mothers online and promote evidence-based information.     

Received social support for sexually transmitted disease-related care-seeking among adolescents.

OBJECTIVE: To describe the types and sources of social support received by adolescents obtaining care at a large urban sexually transmitted diseases (STD) clinic. METHOD: A total of 140 females and 82 males (ages 13-20 mean, 17.6 years) indicated whether they had received any of 11 types of social support, and, if so, from whom. Types of support included: companionship to clinic, advice on symptom interpretation, advice to seek clinical care, advice on potential sources of care, help making appointments, prior provision of medications, supportive talking, help talking to sex partner, provision of money, provision of transportation, and help getting STD protection. RESULTS: Eighty percent received at least one type of social support of whom 77% of subjects reported at least two types of support. The most frequently received support was information about symptom interpretation and appropriate clinic use (47% for each); 41% were accompanied to their clinic visit, and 37% received emotional support. A total of 15% of men but only 4% of women (p < .05 by Chi-square) received medication (usually antibiotics) but women were more likely to receive financial help (5% vs. 0% for women and men, respectively; p < .05). Although women obtained support earlier in the care-seeking process than men, there were no other significant gender differences in types of received support. Friends and sex partners were the most frequently cited sources of companionship and transportation, but parents provided transportation, information, medicine, and money for 15-20% of subjects receiving these types of support. CONCLUSION: Most adolescents receive a social support as part of seeking care for STD-related problems.     

Communicating health decisions: an analysis of messages posted to online prostate cancer forums

Background Experiential websites such as message forums and blogs allow Prostate Cancer (PCa) patients to communicate their health decisions to peers. The issues surrounding this form of indirect involvement in public health are little understood. Objective This paper explores the types of decision‐making processes that people are exposed to on PCa online message boards. The kinds of treatment choices patients are making and the reports of their decision‐making processes to peers through an online environment are examined in the context of the Heuristic Systematic Model. Method Messages about treatment decision making were collected from four PCa websites. In total, 137 messages were selected from blogs and online forums and their decision‐making processes coded. Results Men looking online for information about treatment options for PCa are exposed to a range of decision‐making processes. Just under half (49.6%) of the messages reported non‐systematic decision processes, with deferral to the doctor and proof of cancer removal being the most common. For systematic processing (36.5%), messages most commonly considered treatment outcomes and side‐effects. Processes did not vary between the blogs and online forums. Discussion and conclusion Compared to previous studies far fewer messages reported non‐systematic decision processes and only a small number of messages reflected lay beliefs or misbeliefs about PCa treatment. Implications for men and their clinicians of seeking health information online are discussed.     

Support during childbirth: perception of health care providers and companions chosen by women

OBJECTIVE: To understand health care providers' perception on managing laboring women in the presence of a labor companion of their choice, and the labor companion's perception of this experience. METHODS: A qualitative study was conducted based on a controlled randomized clinical trial. Sampling was intentional and determined through information saturation. Semi-structured interviews were carried out with 11 health care providers and 16 laboring companions in the obstetric unit of a maternity facility at the hospital complex, in Campinas, Southern Brazil, between October 2004 and March 2005. The thematic analysis of discourse was applied using the following methodological figures: central idea, key expressions and discourse of the collective subject. RESULTS: The most remarkable central ideas of health care providers were: no difference was observed in managing laboring women with a labor companion; positive changes were noted in labor management when a labor companion was present; the companion provided emotional support to laboring women who were more pleased, and felt safer and peaceful; many positive aspects were seen in the behavior and involvement of laboring women with a labor companion; the companion caused no problems and encouraged health providers to engage in a more humane and less routine attitude. The main central ideas of labor companions were: positive feelings, emotions, a sense of satisfaction with the experience; being with the laboring woman was a great opportunity to provide her emotional support; and they felt welcome by health care providers. CONCLUSIONS: Health providers considered positive the support provided by a labor companion and had no problems in managing laboring women in the presence of their companions. Labor companions were pleased and happy with this experience. There was no conflicting opinions.     

Building an online community to promote communication and collaborative learning between health professionals and young people who self‐harm: an exploratory study

Background

Online communities are known to break down barriers between supposed experts and non‐experts and to promote collaborative learning and ‘radical trust’ among members. Young people who self‐harm report difficulties in communicating with health professionals, and vice versa.

Aim

We sought to bring these two groups together online to see how well they could communicate with each other about self‐harm and its management, and whether they could agree on what constituted safe and relevant advice.

Methods

We allocated 77 young people aged 16–25 with experience of self‐harm and 18 recently/nearly qualified professionals in relevant health‐care disciplines to three separate Internet discussion forums. The forums contained different proportions of professionals to young people (none; 25%; 50% respectively) to allow us to observe the effect of the professionals on online interaction.

Results

The young people were keen to share their lived experience of self‐harm and its management with health professionals. They engaged in lively discussion and supported one another during emotional crises. Despite registering to take part, health professionals did not actively participate in the forums. Reported barriers included lack of confidence and concerns relating to workload, private–professional boundaries, role clarity, duty of care and accountability. In their absence, the young people built a vibrant lay community, supported by site moderators.

Conclusions

Health professionals may not yet be ready to engage with young people who self‐harm and to exchange knowledge and experience in an anonymous online setting. Further work is needed to understand and overcome their insecurities.