An Exploratory Analysis of the Chronic Rhinosinusitis Online Support Community.

Objective: To characterize the users of the largest chronic rhinosinusitis (CRS) online support communities (OSCs), describe the perceived benefits of OSCs for their users, and understand how patient medical decision making is affected by membership in OSCs. Study Design: Cross-sectional online survey. Setting: Online. Methods: A cross-sectional online survey was adapted from the existing literature on patient support groups and modified for CRS patients. The survey was posted on multiple Facebook/Reddit groups aimed at providing support toward patients with CRS. Survey data was collected over 3 months and analyzed thereafter. Results: There were 127 total participants. The majority were female (65.35%), white (76.98%), and the median age was 38 years. Just under half of patients had nasal polyps (48.67%) and 54.54% had undergone surgery. Many participants (69.42%) reported engaging in the OSC at least multiple times per month. The most common reason for joining an OSC was to learn tips on how to manage CRS (89.7%) and the most achieved goal from membership was hearing from others undergoing a similar experience (79.5%). Involvement in an OSC impacted knowledge of CRS in 87.41% of participants. Most users (81.1%) would recommend membership in an OSC and 54.33% reported the OSC influenced their medical decision-making. Conclusion: A majority of patients with CRS who frequently engage in an OSC for CRS have a positive experience. OSCs are a resource that CRS patients utilize to manage their disease.

Head and Neck Cancer Online Support Groups: Disparities in Participation and Impact on Patients.

Objective: To characterize the users of the head and neck cancer (HNC) online support group (OSG) and describe the perceived benefits of membership. Study Design: Cross-sectional. Setting: Online. Methods: An administered survey with questions asking about demographics, cancer history, treatment choices, and feelings about OSGs was posted on the 5 largest HNC OSGs on Facebook. Results: A total of 97 participants completed the survey. Mean age was 57.8 years old (standard deviation = 10.7 years). Most participants were female (50.5%) and Caucasian (92.8%). This cohort was well educated with 65.5% holding at least a college degree. Annual income was high with 41.8% reporting annual income of $100,000 or greater. The most common treatment modality was radiation (88.7%). The most common surgery was neck dissection (46.4%). Most participants preferred OSGs (70.8%) over other support group types. OSGs were heavily utilized with our cohort reporting using the OSG at least several times a week (80.0%). The top reasons for joining the OSG were sharing one's experience of HNC (76.3%) and gaining support from others with HNC (85.6%). OSGs were ranked as the #3 source of medical information for HNC behind otolaryngologists and oncologists. Membership in a HNC OSG had a minimal impact on decision-making. Conclusion: HNC OSGs appear to provide a beneficial community for HNC patients. Otolaryngologists should consider incorporating HNC OSG as a possible supplemental resource for their HNC patients.

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. A total of 337 messages written by 58 individuals were analysed using deductive thematic analysis. Discussions examined three themes: deciding to be tested (enquiring about symptoms and starting a new family), preparing for the test (information seeking and attending appointments) and receiving the results (positive and negative results). Forums can reduce the uncertainty of ambiguous symptoms and provide ongoing personalised support before, during and after a genetic test.

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.

Variation of Kozinets' framework and application to nursing research.

BACKGROUND: Online communities are new sites for undertaking research, with their textual interactions providing a rich source of data in real time. 'Ethnonetnography' is a research methodology based on ethnography that can be used in these online communities. In this study, the researcher and a specialist breast care nurse (SBCN) were immersed in the online community, adding to patients' breast cancer care and providing a nursing research component to the community. AIM: To examine Kozinets' ( 2010 ) framework for ethnonetnography and how it may be varied for use in a purpose-built, disease-specific, online support community. DISCUSSION: The online community provided an area where members could communicate with each other. Kozinets' ( 2010 ) framework was varied in that the research was carried out in a purpose-built community opf which an SBCN was a member who could provide support and advice. The application of the ethnonetnographic methodology has wide implications for clinical nursing practice and research. CONCLUSION: Ethnonetnography can be used to study disease-specific communities in a focused manner and can provide immediate benefits through the inclusion of an expert nurse and contemporaneous application of research findings to patient care. IMPLICATIONS FOR PRACTICE: With ethical permission and the permission of online community members, nurse researchers can enter already established online communities. Ethnonetnography is ideally suited to nursing research as it provides the immediacy of evidence-based interaction with an expert nurse. These real-time responses improve support for those experiencing a critical life event.