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Original Research

Online support community for adolescents and young adults (AYAs) with cancer: user statistics, evaluation, and content analysis

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Pages 2615-2622 | Published online: 06 Dec 2018
 

Abstract

Purpose

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.

Acknowledgments

The authors would like to thank Robin Hooijer for his help with analyzing the Google Analytics data. The start of the Dutch online AYA community was supported by a grant from Alpe d’Huzes (grant no 2011–5346).

Disclosure

The authors report no conflicts of interest in this work.