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dc.contributor.authorKaal, SEen_US
dc.contributor.authorHusson, Oen_US
dc.contributor.authorvan Dartel, Fen_US
dc.contributor.authorHermans, Ken_US
dc.contributor.authorJansen, Ren_US
dc.contributor.authorManten-Horst, Een_US
dc.contributor.authorServaes, Pen_US
dc.contributor.authorvan de Belt, THen_US
dc.contributor.authorEngelen, LJen_US
dc.contributor.authorPrins, JBen_US
dc.contributor.authorVerberne, Sen_US
dc.contributor.authorvan der Graaf, WTen_US
dc.coverage.spatialNew Zealanden_US
dc.date.accessioned2019-03-04T15:07:09Z
dc.date.issued2018en_US
dc.identifierhttps://www.ncbi.nlm.nih.gov/pubmed/30584285en_US
dc.identifierppa-12-2615en_US
dc.identifier.citationPatient Prefer Adherence, 2018, 12 pp. 2615 - 2622en_US
dc.identifier.issn1177-889Xen_US
dc.identifier.urihttps://repository.icr.ac.uk/handle/internal/3123
dc.identifier.doi10.2147/PPA.S171892en_US
dc.description.abstractPurpose: Peer support is an important unmet need among adolescent and young adult (AYA) cancer patients. This study was conducted to describe the use and evaluation of a Dutch secure online support community for AYA diagnosed with cancer between 18 and 35 years. Methods: User statistics were collected with Google analytics. Community members were asked to complete questionnaires on the usefulness of the community. A content analysis using Linguistic Inquiry and Word Count was conducted. Results: Between 2010 and 2017, the community received 433 AYA members (71% female; mean age at diagnosis 25.7 years; 52 Dutch hospitals represented). The mean time since diagnosis when subscribing to the community was 2.7 years (SD 4.4). Questionnaire data among 30 AYA community members indicated that the use of the community resulted in acknowledgment and advice regarding problems (56%) and the feeling of being supported (63%). Almost half of the respondents felt less lonely, 78% experienced recognition in stories of other AYA. Anonymized content analysis (n=14) showed that the majority of the online discussions encompassed emotional and cognitive expressions, and emotional support. Conclusion: The secure Dutch online AYA community can help AYA cancer patients to express feelings, exchange information, address peer support, and has been found helpful in coping with cancer. As AYA cancer patients often lack the option of meeting each other in person, the AYA community is helpful in establishing peer support. Its use would benefit from promotion by health care professionals.en_US
dc.format.extent2615 - 2622en_US
dc.languageengen_US
dc.language.isoengen_US
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/en_US
dc.subjectAYAen_US
dc.subjectAYA cancer patienten_US
dc.subjectadolescent and young adulten_US
dc.subjectcontent analysisen_US
dc.subjectonline communityen_US
dc.subjectpeer supporten_US
dc.subjectuser statisticsen_US
dc.titleOnline support community for adolescents and young adults (AYAs) with cancer: user statistics, evaluation, and content analysis.en_US
dc.typeJournal Article
rioxxterms.versionofrecord10.2147/PPA.S171892en_US
rioxxterms.licenseref.startdate2018en_US
rioxxterms.typeJournal Article/Reviewen_US
dc.relation.isPartOfPatient Prefer Adherenceen_US
pubs.notesNot knownen_US
pubs.organisational-group/ICR
pubs.organisational-group/ICR/Primary Group
pubs.organisational-group/ICR/Primary Group/ICR Divisions
pubs.organisational-group/ICR/Primary Group/ICR Divisions/Clinical Studies
pubs.organisational-group/ICR/Primary Group/ICR Divisions/Clinical Studies/Clinical and Translational Sarcoma
pubs.publication-statusPublished onlineen_US
pubs.volume12en_US
pubs.embargo.termsNot knownen_US
icr.researchteamClinical and Translational Sarcomaen_US
dc.contributor.icrauthorHusson, Olgaen_US


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