Children’s at Home: Pilot Study Assessing Dedicated Social Media for Parents of Adolescents with Neurofibromatosis Type 1

  • Christina Akre
  • Julie Polvinen
  • Nicole J. Ullrich
  • Michael Rich
Original Research


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.


Social 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.

Animal Studies

No animal studies were carried out by the authors for this article.


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Copyright information

© National Society of Genetic Counselors, Inc. 2018

Authors and Affiliations

  • Christina Akre
    • 1
  • Julie Polvinen
    • 2
  • Nicole J. Ullrich
    • 3
  • Michael Rich
    • 2
  1. 1.Institute of Social and Preventive Medicine (IUMSP)Lausanne University HospitalLausanneSwitzerland
  2. 2.Division of Adolescent/Young Adult Medicine, Center on Media and Child HealthBoston Children’s HospitalBostonUSA
  3. 3.Department of NeurologyBoston Children’s HospitalBostonUSA

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