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dc.contributor.authorDe Simoni, Aen_US
dc.contributor.authorShah, ATen_US
dc.contributor.authorFulton, Oen_US
dc.contributor.authorParkinson, Jen_US
dc.contributor.authorSheikh, Aen_US
dc.contributor.authorPanzarasa, Pen_US
dc.contributor.authorPagliari, Cen_US
dc.contributor.authorCoulson, NSen_US
dc.contributor.authorGriffiths, CJen_US
dc.date.accessioned2020-06-22T15:39:53Z
dc.date.available2020-05-13en_US
dc.date.issued2020-06-23en_US
dc.identifier.urihttps://qmro.qmul.ac.uk/xmlui/handle/123456789/65123
dc.description.abstractBACKGROUND: Superusers, defined as the 1% of users who write a large number of posts, play critical roles in online health communities (OHCs), catalyzing engagement and influencing other users' self-care. Their unique online behavior is key to sustaining activity in OHCs and making them flourish. Our previous work showed the presence of 20 to 30 superusers active on a weekly basis among 3345 users in the nationwide Asthma UK OHC and that the community would disintegrate if superusers were removed. Recruiting these highly skilled individuals for research purposes can be challenging, and little is known about superusers. OBJECTIVE: This study aimed to explore superusers' motivation to actively engage in OHCs, the difficulties they may face, and their interactions with health care professionals (HCPs). METHODS: An asynchronous web-based structured interview study was conducted. Superusers of the Asthma UK OHC and Facebook groups were recruited through Asthma UK staff to pilot and subsequently complete the questionnaire. Open-ended questions were analyzed using content analysis. RESULTS: There were 17 superusers recruited for the study (14 patients with asthma and 3 carers); the majority were female (15/17). The age range of participants was 18 to 75 years. They were active in OHCs for 1 to 6 years and spent between 1 and 20 hours per week reading and 1 and 3 hours per week writing posts. Superusers' participation in OHCs was prompted by curiosity about asthma and its medical treatment and by the availability of spare time when they were off work due to asthma exacerbations or retired. Their engagement increased over time as participants furthered their familiarity with the OHCs and their knowledge of asthma and its self-management. Financial or social recognition of the superuser role was not important; their reward came from helping and interacting with others. According to the replies provided, they showed careful judgment to distinguish what can be dealt with through peer advice and what needs input from HCPs. Difficulties were encountered when dealing with misunderstandings about asthma and its treatment, patients not seeking advice from HCPs when needed, and miracle cures or dangerous ideas. Out of 17 participants, only 3 stated that their HCPs were aware of their engagement with OHCs. All superusers thought that HCPs should direct patients to OHCs, provided they are trusted and moderated. In addition, 9 users felt that HCPs themselves should take part in OHCs. CONCLUSIONS: Superusers from a UK-wide online community are highly motivated, altruistic, and mostly female individuals who exhibit judgment about the complexity of coping with asthma and the limits of their advice. Engagement with OHCs satisfies their psychosocial needs. Future research should explore how to address their unmet needs, their interactions with HCPs, and the potential integration of OHCs in traditional healthcare.en_US
dc.format.extente18185 - ?en_US
dc.languageengen_US
dc.relation.ispartofJ Med Internet Resen_US
dc.subjectasthmaen_US
dc.subjecteHealthen_US
dc.subjectleadershipen_US
dc.subjectmisinformationen_US
dc.subjectonline forumsen_US
dc.subjectonline health communitiesen_US
dc.subjectpeer-to-peer supporten_US
dc.subjectself-managementen_US
dc.subjectsocial mediaen_US
dc.subjectsocial networksen_US
dc.subjectsocial supporten_US
dc.subjectsuperusersen_US
dc.titleSuperusers' Engagement in Asthma Online Communities: Asynchronous Web-Based Interview Study.en_US
dc.typeArticle
dc.identifier.doi10.2196/18185en_US
pubs.author-urlhttps://www.ncbi.nlm.nih.gov/pubmed/32573463en_US
pubs.issue6en_US
pubs.notesNot knownen_US
pubs.publication-statusPublished onlineen_US
pubs.volume22en_US
dcterms.dateAccepted2020-05-13en_US
qmul.funderAsthma UK Centre for Applied Research: 5 years renewal::Asthma UKen_US
qmul.funderAsthma UK Centre for Applied Research: 5 years renewal::Asthma UKen_US


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