Exploring patients' engagement with web-based peer support for Inflammatory Bowel Disease: forums or Facebook?

Whilst the popularity of health-related peer-to-peer web-based support shows no sign of diminishing, comparatively little is known about the factors associated with engagement in alternative web-based types of support (e.g. chat rooms, discussion forums, social networking sites). In this study, 147 patients living with Inflammatory Bowel Disease (IBD) completed an online questionnaire and described their use of either IBD forums or IBD Facebook groups along with a range of socio-demographic, disease-related and psychosocial factors. The findings revealed that over half (59 per cent) of respondents accessed forums with the remaining accessing Facebook groups. Members of Facebook groups were more likely to be younger, single and achieved a higher level of educational attainment compared with forum members but there was no difference in terms of disease-related characteristics. However, differences did exist in how they used web-based support with forum members having been members for longer, accessing them more frequently and spending longer online as well as posting more messages. Taking into account these background variables, there were no differences in terms of perceived stress, perceived social support and health-related quality of life between members of these two types of support communities

Patterns of engagement with inflammatory bowel disease online support groups: comparing posters and lurkers

Little is known about the varying patterns of member engagement within inflammatory bowel disease online support groups. The aim of the study was, therefore, to compare posters and lurkers (i.e., those who read messages but choose not to post) in terms of engagement and motives for accessing online groups as well as to explore reasons why lurkers do not make an active contribution through posting messages. The findings revealed that those who posted messages visited groups more often and spent longer periods of time accessing them. However, there was no difference between posters and lurkers in terms of length of time as a group member. Furthermore, posters were more inclined to access online support groups to both seek and provide emotional, informational, and experiential support. Finally, four main reasons were described by lurkers for not posting messages and these focused on personal factors, illness severity, being helpful, and new member. For those healthcare professionals or patient volunteers who are involved in supporting inflammatory bowel disease online support groups, there are a number of practical strategies arising from these results which can be implemented to help integrate and encourage active participation by all members

Nurturing health-related online support groups:exploring the experience of patient moderators

The aim of this study was to examine the views of moderators across a diverse and geographically broad range of online support groups about their moderator experiences and to explore both the personal benefits as well as challenges involved. Thirty-three patient moderators completed an online questionnaire which included a series of open-ended questions. Thematic analysis identified three themes: emergence, empowerment, nurturing. Several moderators declared their own diagnosis and for some, being able to share personal insights motivated them to establish the group and in turn offered validation. They felt empowered by helping others and learned more about the condition through accessing the "communal brain". Some felt the group aided patients' access to health services and their ability to communicate with health professionals while others worried about them becoming over-dependent. Moderators described needing to nurture their group to ensure it offered a safe space for members. Clear rules of engagement, trust, organisation skills, compassion and kindness were considered essential. Patient moderated online support groups can be successfully developed and facilitated and can be empowering for both the group member and moderator alike

Accessing dental anxiety online support groups: An exploratory qualitative study of motives and experiences

Objectives: In recent years, Internet access has grown markedly providing individuals with new opportunities for online information retrieval, psychological advice and support. The objectives of the present study were to explore the context through which dentally anxious individuals access an online support group and the nature of their online experiences. Methods: An online questionnaire was completed by 143 individuals who accessed the Dental Fear Central online support group bulletin board. Qualitative analysis was conducted on the responses. Results: Analysis revealed three emergent themes which reflected the motives and experiences of individuals: ‘Searching for help’, ‘Sharing fears’ and ‘I feel empowered’. Conclusion: This exploratory study suggests that for most individuals accessing this online support group was a positive and beneficial experience. Practice Implications: Online support groups may represent a convenient and beneficial tool that may assist certain individuals to confront their debilitating anxiety/phobia and successfully receive dental care

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

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

Genetic testing for Huntington’s disease: A thematic analysis of online support community messages

Huntington’s disease is a fatal late-onset genetic illness that causes motor, cognitive and psychiatric disorders. Individuals considering genetic testing may benefit from online social support. This study investigates how genetic testing is discussed within health forums. 337 messages written by 58 individuals were analysed using deductive thematic analysis. Discussions examined three themes: deciding to be tested (enquiring about symptoms, starting a new family), preparing for the test (information seeking, attending appointments), and receiving the results (positive results, negative results). Forums can reduce the uncertainty of ambiguous symptoms, and provide ongoing personalized support before, during and after a genetic test

Social support in cyberspace: A content analysis of communication within a Huntington’s Disease online support group

Objective: Huntington’s Disease (HD) is an inherited disorder, characterised by a progressive degeneration of the brain. Due to the nature of the symptoms, the genetic element of the disease and the fact that there is no cure, HD patients and those in their support network often experience considerable stress and anxiety. With an expansion in Internet access, individuals affected by HD have new opportunities for information retrieval and social support. The aim of this study is to examine the provision of social support in messages posted to a HD online support group bulletin board. Methods: In total, 1313 messages were content analysed using a modified version of the Social Support Behaviour Code developed by Cutrona & Suhr (1992). Results: The analysis indicates that group members most frequently offered informational (56.2%) and emotional support (51.9%) followed by network support (48.4%) with esteem support (21.7%) and tangible assistance (9.8%) least frequently offered. Conclusion: This study suggests that exchanging informational and emotional support represents a key function of this online group. Practice implications: Online support groups provide a unique opportunity for health professionals to learn about the experiences and views of individuals affected by HD and explore where and why gaps may exist between evidence-based medicine and consumer behaviour and expectations

Affordance theory can help understanding of individuals' use of online support communities

In the early days of the Internet limited interaction existed between websites and individual users and as a result individuals were largely confined to searching for and reading health-related information. Searching for health-related information remains commonplace (i.e. in 2016, 51% searched for health information online in the UK, ONS, 2016). In addition, more recent technological advances have created forms of electronic communication which have encouraged participation, collaboration and information sharing between users (often referred to as ‘Web 2.0’). One specific way in which this ability to interact with other users has manifest itself is through the development of online support communities (also known as ‘online support groups’). Online support communities are a type of virtual community with a health-related focus, which provide an online environment where individuals can interact with other people who share common interests, experiences or concerns

Understanding user reactions and interactions with an internet-based intervention for tinnitus self-management: mixed-methods process evaluation protocol

Background: Tinnitus is a common medical symptom that can affect an individual’s emotional and functional quality of life. Psychological therapies are acknowledged as beneficial to people with tinnitus; however, such therapies are not always readily accessible. With their global reach, automated Internet-based interventions have the potential to reduce the disparity in access to psychological support that people with tinnitus currently experience. However, the evidence on the acceptability and efficacy of these interventions is lacking. Process evaluations that develop an in-depth understanding of how users experience these interventions provide an essential first step when evaluating complex psychological interventions. Objective: To describe the protocol for a study that will explore past, current, and new users’ reactions to and interactions with the Tinnitus E-Programme, an Internet-based intervention for the self-management of tinnitus. Methods: Two parallel mixed-methods studies will be carried out with 2 different populations. Study 1 will use an online survey to gather past and current users’ views of the program. Study 2 will recruit new program users to take part in an interview and complete a relaxation log to explore how well they were able to implement the skills they learned during the program in their everyday lives. The findings from both studies will be triangulated to develop an in-depth understanding of the program’s mechanisms of impact and identify any implementation or contextual factors that strengthen or impede its delivery and functioning. Results: Study 1 is open for recruitment with a projected completion in June 2016 and Study 2 was completed November 2015. At the time of submission, 36 participants have been recruited to Study 1 and 12 participants have taken part in Study 2. Conclusions: Findings will inform the optimization of the Tinnitus E-Programme and guide future evaluation work to assess the program’s effectiveness as a therapy for people with tinnitus

Applying theories of health behaviour and change to hearing health research: time for a new approach

Objective: In recent years, there has been an increase in the application of behavioural models, such as social cognition models, to the promotion of hearing health. Despite this, there exists a well-developed body of literature that suggests such models may fail to consistently explain reliable amounts of variability in human behaviours. Design: This paper provides a summary of this research across selected models of health-related behaviour, outlining the current state of the evidence. Results: Recent work in the field of behaviour change is presented together with commentary on the design and reporting of behaviour change interventions. Conclusions: We propose that attempts to use unreliable models to explain and predict hearing health behaviours should now be replaced by work which integrates the latest in behaviour change science, such as the Behaviour Change Wheel and Theoretical Domains Framework