Patient Preference and Adherence (Dec 2018)
Online support community for adolescents and young adults (AYAs) with cancer: user statistics, evaluation, and content analysis
Abstract
Suzanne EJ Kaal,1,2 Olga Husson,2–4 Fleur van Dartel,3 Karin Hermans,1,2 Rosemarie Jansen,1,2 Eveliene Manten-Horst,1,2 Petra Servaes,2,3 Tom H van de Belt,5 Lucien JLPG Engelen,5 Judith B Prins,2,3 Suzan Verberne,6 Winette TA van der Graaf1,2,4 1Department of Medical Oncology, Radboud University Medical Center, Nijmegen, the Netherlands; 2Dutch AYA “Young and Cancer” Platform, AYA Platform Radboudumc, Radboud University Medical Center, Nijmegen, the Netherlands; 3Department of Medical Psychology, Radboud University Medical Center, Nijmegen, the Netherlands; 4Division of Clinical Studies, Institute of Cancer Research and Royal Marsden NHS Foundation Trust, London, UK; 5Radboud REshape and Innovation Center, Radboud University Medical Center, Nijmegen, the Netherlands; 6Leiden Institute for Advanced Computer Science, Leiden University, Leiden, the NetherlandsPurpose: 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. Keywords: adolescent and young adult, AYA, AYA cancer patient, online community, peer support, user statistics, content analysis
