Development of a Facebook-Delivered,Self-Management Program for Young Adult Childhood Cancer Survivors

In 2014, an estimated 1 in 530 young adults were childhood cancer survivors, with an estimated 15,780 newly diagnosed. Overall, survival rates are 80%. Long-term late effects emerge from cancer treatments resulting in chronic conditions (pain, fatigue, and memory loss) that affect emerging adult roles of education and work.

Self-management (SM) groups are one intervention strategy for those struggling with chronic disease. Face-to-face groups require a weekly time commitment at one location. Young adults use social media for peer support and health information. We describe the process of transforming the essential elements of a face-to-face SM group to Facebook delivery for a 6-wk education support program. Young adults are a challenging group to follow for health management. Use of social media to deliver interventions is a new methodology that practitioners could use for reaching young adults. The purpose of this qualitative study utilizing individual interviews and one discussion group was to generate the essential elements of SM and to convert them into a Facebook program.

METHOD: Semistructured interviews were conducted with key informants representing (1) young adult childhood cancer survivors who were aged 18 to 30 yr, who were at least 2-yr postcancer treatment, and who had participated in a face-to-face SM group; (2) survivors with the same criteria who had not participated in an SM group; (3) local community leaders involved in young adult survivorship issues; and (4) leaders who conduct face-to-face SM groups. Eleven interviews were transcribed, and key elements of SM were brought back to 7 of the 11 key informants in one discussion. This discussion was transcribed, and content for a Facebook SM group emerged.

RESULTS: Four defined areas emerged: (1) SM program components, which included goal setting, problem solving, brainstorming strategies, skill development, and action planning; (2) facilitator skills, which included trust, social support, idea sharing, survivor awareness and empowerment, nonverbal cues, and ownership of group; (3) Facebook features, which included accessible anytime chat and wall features, live sessions across time zones, time sequence of posts, and use of activities; and (4) general concerns for using Facebook, which included preserving anonymity, administering or seeking medical advice, facilitator vigilance, and university sponsorship. The Facebook program that emerged includes a presession week to familiarize participants with Facebook features (secret group, technical issues of group invitation for anonymity), use of Facebook videotape and files, weekly use of a chat feature, daily use of wall features, and password protected e-mail for program evaluation.

CONCLUSION: This process highlights the many considerations for development of a social media platform to deliver group interventions. Practitioners should consider this method for intervening with groups of clients with chronic disease who are not likely to attend a weekly session.

References

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Hong, Y., Peña-Purcell, N. C., & Ory, M. G. (2012). Outcomes of online support and resources for cancer survivors: A systematic literature review. Patient Education and Counseling, 86, 288–296. http://dx.doi.org/10.1016/j.pec.2011.06.014

Ward, E., DeSantis, C., Robbins, A., Kohler, B., & Jemal, A. (2014). Childhood and adolescent cancer statistics, 2014. CA: A Cancer Journal for Clinicians, 64, 83–103. http://dx.doi.org/10.3322/caac.21219