Youth Online Support Preferences
Megan Evans, MSPH
Young people have unique preferences and needs when it comes to getting social support for a health condition. Here’s a snapshot of what we know about those preferences. If you have any lessons learned from your own experience, please share them in the comments below!
Youth desire sites independent from their social media for getting support for illness: Youth access the Internet strategically and differentiate what sites they use to socialize and have fun from those they seek out for support and information about illness. While youth report using social media sites, such as Facebook, Twitter, and Instagram to stay connected with family and friends, these sites are likely not the best place to reach them to provide information and support regarding illness, whether mental or physical (Ahola Kohut et al., 2018; Wetterlin, Mar, Neilson, Werker, & Krausz, 2014). Adolescents report preferring to keep their illness private and tend to present themselves as “average” or “healthy” on their main social media sites (Van Der Velden & El Emam, 2013). In a survey of 17-24 year olds, most (77%) stated they would be unlikely or very unlikely to use social media sites during a difficult time (Wetterlin et al., 2014). However, youth expressed a desire to connect with others with shared experiences who could relate and understand their situation (i.e. similar diagnosis) as a form of social support (Ahola Kohut et al., 2018). Thus, providing youth with a separate, confidential space to seek support and information about illness is key to engaging youth in such support.
Support should come from peers and professionals: Support provided by both health care providers and peers is desired, as medical professionals will ensure that information shared is medically accurate and peers can provide more experiential, hands-on knowledge and support (Ahola Kohut et al., 2018). Adolescents are very aware that all information accessed on the Internet is not of the same standard of quality and want to avoid misinformation, thus preferring that medical professionals are available to vet posted information (Ahola Kohut et al., 2018). Moderated discussion forums add reassurance of safety, helpful suggestions, and comments to “fill the silence” and stimulate discussion among participants (Nicholas et al., 2012). Additionally, space for off-topic conversations should be provided, as adolescents want to develop social connections related to their “whole self” and not just disease-specific support (Ahola Kohut et al., 2018).
Where possible, merge online and in-person support: Hybrid support groups, linking brick and mortar structures with online support programs, may offer unique benefits (Treadgold & Kuperberg, 2010). Adolescents would like the opportunity to meet people from their online support networks in real life where possible, potentially in the form of organized events that occur outside of healthcare settings (Ahola Kohut et al., 2018; Treadgold & Kuperberg, 2010). These meet-ups have the potential to strengthen the relationships made online and vice versa. Additionally, some programs use face-to-face meetings with healthcare professionals to invite and screen potential participants for online groups, engendering a sense of security about the veracity of the support and information provided online (Treadgold & Kuperberg, 2010).
Support sites should combine aspects of websites, apps, and peer mentoring programs: Youth desire varied methods to access reliable information and make social connections. Sites should be accessible via computer and smartphone. Desired features include reliable, up-to-date information; links to trusted resources; private messaging between users; group chats and/or video calls; message boards where people can pose questions for other users and/or medical professionals; ability to connect with others “like them” (i.e. age, disease, etc.); personal profiles; and ability to post photos and videos (Ahola Kohut et al., 2018; Nicholas et al., 2012).
Ahola Kohut, S., LeBlanc, C., O’leary, K., McPherson, A., McCarthy, E., Nguyen, C., & Stinson, J. (2018). The internet as a source of support for youth with chronic conditions: A qualitative study. Child: care, health and development, 44(2), 212-220.
Nicholas, D. B., Fellner, K. D., Frank, M., Small, M., Hetherington, R., Slater, R., & Daneman, D. (2012). Evaluation of an online education and support intervention for adolescents with diabetes. Social Work in Health Care, 51(9), 815-827.
Treadgold, C. L., & Kuperberg, A. (2010). Been there, done that, wrote the blog: the choices and challenges of supporting adolescents and young adults with cancer. Journal of Clinical Oncology, 28(32), 4842-4849.
Van Der Velden, M., & El Emam, K. (2013). “Not all my friends need to know”: a qualitative study of teenage patients, privacy, and social media. Journal of the American Medical Informatics Association, 20(1), 16-24.
Wetterlin, F. M., Mar, M. Y., Neilson, E. K., Werker, G. R., & Krausz, M. (2014). eMental health experiences and expectations: a survey of youths’ Web-based resource preferences in Canada. Journal of medical Internet research, 16(12), e293.