Table 1.

Existing online communities/digital support services for AYA/TYA cancer patients worldwide

Author, year, country	Type of community/online support group	Sample (N)	Age range (years)	Goal study	Means	Main results/conclusion
Love et al (2012)19 Crook and Love (2017)29 Thompson et al (2015)30 Donovan et al (2014)32 Pounders et al (2017)31 TX, USA	Online AYA cancer community, anonymous	6,000 plus users (+ small proportion of family, friends, and professionals)	15–39	• Content analysis of 350 randomly sampled messages • Examine challenges of online support • Difference in language between online and offline support groups • Gain insight into the patterns of social support in response to AYAs’ expressions of uncertainty • Better understand gender and identity issues among female AYAs	• Data analysis of “speech events” • Qualitative coding of transcripts of messages • Linguistic Inquiry and word count of transcripts • Analysis of 510 responses to posts • Analyzing individual message blog posts with text-mining software	• Exchange support, coping with emotions, describe experiences, enact identity and communicate membership • Challenges regarding soliciting support, disclosing to a community, advocacy online, negative sentiment evaluating health care services and asynchronous communication • Differences between online and face-to-face support groups in terms of content and style words • 67% of posts contains multiple types of support • Female AYA experience issues pertaining to infertility, feeling like a bad mom, hair loss, scarring, dating, and intimacy
Fasciano et al (2015)35 Boston, MA, USA	Website with social networking capacity	N=30 YAs completed online survey (of the 188 who registered)	18–39	Development and content of YA-website	Survey among users about use, satisfaction, emotional well-being	Website is helpful, particularly in social networking function. YAs experienced increased connection with others. Some YAs experienced increased distress
Gaulin (2010)23 USA	“Group Loop” American online community	NM	Adolescents	Assess impact of discussion boards and online support groups as a self-help tool for supporting the coping skills	Analysis of messages	• Exchange peer support and information about treatment • Facilitators helped them to cope
Elwell et al (2011)43 USA	Computer-mediated support group (no subscription or registration)	NM	Adolescents	Explore types of social support using a qualitative approach	Thematic analysis of 393 messages	• Exchange informational, emotional, and social support • Useful with and without facilitator
Griffiths et al (2015)34 UK	Realshare online support community	12	16–30	Describe development and evaluation Realshare online community	Focus groups	• Helpful in communication and exchanging support with other patients and to arrange face-to-face meetings • A facilitator can be beneficial to encourage user interaction
Patterson et al (2014)33 Australia	Canteen online and phone mental health support service	NA	12–25 (young people living with cancer)	NA	NA	• Find information, connect with others, express feelings, utilize tools for support, access to professional psychosocial support • Service available for patients and offspring and siblings of family members with cancer

Abbreviations: AYA, adolescent and young adult; NA, not applicable; NM, not mentioned; YA, young adult.