Children’s at Home: Pilot Study Assessing Dedicated Social Media for Parents of Adolescents with Neurofibromatosis Type 1
- 75 Downloads
The aim of this pilot study was to evaluate Children’s at Home (C@H), a dedicated social media website for parents of adolescents with neurofibromatosis type 1 (NF1). The interventional study included two phases: (1) creating video intervention/prevention assessment (VIA) visual narratives about having an adolescent with NF1 and (2) interacting on C@H, a secure, medically moderated social media website. C@H was evaluated qualitatively at three time points. At enrollment (T0, N = 17), participants reported needing C@H to break their isolation, connect with other families, and receive accurate information, advice, and support from others facing similar challenges. At T1, after creating VIA during 6 months (N = 13, 145 videos), participants mostly valued the opportunity to speak about the challenges they face with NF1 and their journey since diagnosis. At T2, after interacting on C@H for 7 weeks (N = 10, two sign-ins/week/parent), participants reported connecting with other parents of children with NF1 for the first time, valuing the “real faces” and emotions of other parents with shared experiences providing a sense of normalcy. Qualitative analysis suggested that C@H decreased feelings of isolation, provided relief to talk about NF1 without having to explain it, provided new knowledge about NF1 and the opportunity to address non-medical issues of NF1 never discussed in clinic, and helped participants with putting their lives into perspective. C@H allowed parents of adolescents with NF1 to overcome previous isolation and connect for the first time. Innovative applications of social media dedicated to those who care for children with chronic conditions can provide peer-to-peer support, shared experience, and reliable medical information.
KeywordsSocial media Peer support Adolescents Parents Intervention Neurofibromatosis
We would like to thank Kapil Patel for his work building the Children’s at Home website and the participating families.
Compliance with Ethical Standards
Conflict of Interest
Author Akre Christina, Author Polvinen Julie, Author Ullrich Nicole J, and Author Rich Michael declare that they have no conflict of interest.
Human Studies and Informed Consent
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study.
No animal studies were carried out by the authors for this article.
- Ainbinder, J. G., Blanchard, L. W., Singer, G. H., Sullivan, M. E., Powers, L. K., Marquis, J. G., & Santelli, B. (1998). A qualitative study of parent to parent support for parents of children with special needs. Consortium to evaluate parent to parent. Journal of Pediatric Psychology, 23(2), 99–109.CrossRefPubMedGoogle Scholar
- Bandura, A. (1986). Social foundations of thought and action: a social cognitive theory. NJ: Prentice-Hall.Google Scholar
- Brehaut, J. C., Kohen, D. E., Garner, R. E., Miller, A. R., Lach, L. M., Klassen, A. F., & Rosenbaum, P. L. (2009). Health among caregivers of children with health problems: findings from a Canadian population-based study. American Journal of Public Health, 99(7), 1254–1262.CrossRefPubMedPubMedCentralGoogle Scholar
- Buchbinder, M. H., Detzer, M. J., Welsch, R. L., Christiano, A. S., Patashnick, J. L., & Rich, M. (2005). Assessing adolescents with insulin-dependent diabetes mellitus: a multiple perspective pilot study using visual illness narratives and interviews. The Journal of Adolescent Health, 36(1), 71 e79-13.CrossRefPubMedGoogle Scholar
- Cho, J. Y., & Lee, E. (2014). Reducing confusion about grounded theory and qualitative content analysis: similarities and differences. The Qualitative Report, 19(32), 1–20.Google Scholar
- Garwood, M. M., Bernacki, J. M., Fine, K. M., Hainsworth, K. R., Davies, W. H., & Klein-Tasman, B. P. (2012). Physical, cognitive, and psychosocial predictors of functional disability and health-related quality of life in adolescents with neurofibromatosis-1. Pain Res Treat, 2012. https://doi.org/10.1155/2012/975364.
- Kerr, S. M., & McIntosh, J. B. (2000). Coping when a child has a disability: exploring the impact of parent-to-parent support. Child: Care, Health and Development, 26(4), 309–322.Google Scholar
- Kingsnorth, S., Gall, C., Beayni, S., & Rigby, P. (2011). Parents as transition experts? Qualitative findings from a pilot parent-led peer support group. Child: Care, Health and Development, 37(6), 833–840.Google Scholar
- Laranjo, L., Arguel, A., Neves, A. L., Gallagher, A. M., Kaplan, R., Mortimer, N., & Lau, A. Y. (2015). The influence of social networking sites on health behavior change: a systematic review and meta-analysis. Journal of the American Medical Informatics Association, 22(1), 243–256.CrossRefPubMedGoogle Scholar
- Law, M., King, S., Stewart, D., & King, G. (2001). The perceived effects of parent-led support groups for parents of children with disabilities. Physical & Occupational Therapy in Pediatrics, 21(2–3), 29–48.Google Scholar
- Martin, S., Gillespie, A., Wolters, P. L., & Widemann, B. C. (2011). Experiences of families with a child, adolescent, or young adult with neurofibromatosis type 1 and plexiform neurofibroma evaluated for clinical trials participation at the National Cancer Institute. Contemporary Clinical Trials, 32(1), 10–15.CrossRefPubMedGoogle Scholar
- Martin, S., Wolters, P., Baldwin, A., Gillespie, A., Dombi, E., Walker, K., & Widemann, B. (2012). Social-emotional functioning of children and adolescents with neurofibromatosis type 1 and plexiform neurofibromas: relationships with cognitive, disease, and environmental variables. Journal of Pediatric Psychology, 37(7), 713–724.CrossRefPubMedPubMedCentralGoogle Scholar
- Martin, S., Wolters, P. L., Baldwin, A., Roderick, M. C., Toledo-Tamula, M. A., Gillespie, A., & Widemann, B. (2014). Attitudes about internet support groups among adolescents and young adults with neurofibromatosis type 1 and their parents. Journal of Genetic Counseling, 23(5), 796–804.CrossRefPubMedGoogle Scholar
- Martin, S., Roderick, M. C., Lockridge, R., Toledo-Tamula, M. A., Baldwin, A., Knight, P., & Wolters, P. (2017). Feasibility and preliminary efficacy of an internet support group for parents of a child with neurofibromatosis type 1: a pilot study. Journal of Genetic Counseling, 26(3), 576–585.CrossRefPubMedGoogle Scholar
- Patashnick, J., & Rich, M. (2005). Researching human experience: video intervention/prevention assessment (VIA). Australasian Journal of Information Systems, 36(1), 71 e79-71.e13.Google Scholar
- Reiter-Purtill, J., Schorry, E. K., Lovell, A. M., Vannatta, K., Gerhardt, C. A., & Noll, R. B. (2008). Parental distress, family functioning, and social support in families with and without a child with neurofibromatosis 1. Journal of Pediatric Psychology, 33(4), 422–434.CrossRefPubMedGoogle Scholar
- Rich, M., Huecker, D., & Ludwig, D. (2001). Obesity in the lives of children and adolescents: inquiry through patient-centered visual narratives. Pediatric Research, 49, 7A.Google Scholar
- Shilling, V., Morris, C., Thompson-Coon, J., Ukoumunne, O., Rogers, M., & Logan, S. (2013). Peer support for parents of children with chronic disabling conditions: a systematic review of quantitative and qualitative studies. Developmental Medicine and Child Neurology, 55(7), 602–609.CrossRefPubMedGoogle Scholar
- Trujillo, E., Suarez, D., Lema, M., & Londono, A. (2015). How adolescents learn about risk perception and behavior in regards to alcohol use in light of social learning theory: a qualitative study in Bogota, Colombia. International Journal of Adolescent Medicine and Health, 27(1), 3–9.PubMedGoogle Scholar