Abstract
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.
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Acknowledgments
We would like to thank Kapil Patel for his work building the Children’s at Home website and the participating families.
Funding
This work was supported by the Children’s Tumor Foundation Clinical Research Award to NU and the Swiss National Science Foundation with a doc.mobility grant for a fellowship at the Boston Children’s Hospital (grant number P1LAP3_151749) to CA.
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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.
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No animal studies were carried out by the authors for this article.
Appendix
Appendix
Semi-structured interview questions at baseline (T0), after phase 1 (T1), and after phase 2 of the project (T2)
Baseline T0 – Questions at enrollment | ||
1 | Which social media sites do you use? | |
2 | Do you use social media to research NF? | • Which site/s? • How often and for how long? |
3 | Do you ever talk about your child’s NF to anyone? | • If not, why? • If yes, with whom do you talk about your child’s NF? • If yes, what mode of communication do you use to talk about your child’s NF? |
4 | Do you know other children, parents/families with children with NF? | • If yes, how did you meet them? |
5 | How often do you connect with others who care for children with NF? | |
6 | How do you stay in touch with them? | |
7 | Have you ever used online sites specifically to talk about and meet other parents who care for children with NF? | • If yes, which site(s)? |
8 | Have you ever used online sites to talk about and meet other parents who care for children with a chronic illness in general? | • If yes, which site(s)? |
9 | How important would it be to connect online with other parents who care for a child/adolescent child with NF? | • Why do you feel that way? |
10 | If you were confident that a website was secure and dedicated to parents of young people with NF1, would you post on the site and share your experiences with others? | • If yes, what would you post? • What topics would you talk/post about? |
11 | What would you like such a site to offer? What would be important for you? | • Links to research? • Educational tips for managing NF or to help parents in caring for children with NF? • Medical oversight and advice? • Peer advice and exchange with other parents of children with NF? • Peer advice and exchange with other parents of children with a chronic illness? |
12 | What do you hope to gain from using the C@H social media site? | |
13 | Would it be important for you that the site to be moderated by your child’s doctor or medical team? | • Why or why not? |
14 | Would it be important to you that the site be moderated by a doctor/team that knows NF1 but does not know your child? | • Why or why not? |
15 | Would it be okay with you if the site did not to have any medical oversight or advice? | • Why or why not? |
16 | Would you like your child to be able to see what you are posting on Children’s at Home? | • Why or why not? |
17 | Would you like to see what your child is posting on Children’s at Home? | • Why or why not? |
18 | Would you like the website to offer the ability to share information between the parent and child’s section of the site? | • Why or why not? |
19 | How much of the sharing of posts would you feel comfortable with? | |
T1 – Questions evaluating Phase 1 | ||
1 | Did you like recording your life on camera? | • Why or why not? |
2 | Do you feel that you were able to express yourself accurately on camera? | • Why or why not? |
3 | What did you like best and least about video recording your life? | |
4 | What did recording your life on camera do for you? | |
5 | Were you able to upload your files without help? | • Why or why not? |
6 | Was the site easy to use? | • Why or why not? |
7 | Are you looking forward to seeing the videos that other parents caring for a child with NF have made? | • Why or why not? |
8 | What do you hope others will show and/or talk about? | |
9 | What advice would you give to others so they can optimize their use and experience of C@H? | |
10 | What might improve your experience? | |
11 | Do you have any other suggestions? | |
T2 – Questions evaluating Phase 2 | ||
Using C@H website | ||
1 | How many of the C@H videos do you think you’ve watched? | • 0-10 / 11-30 / 31-50 / >50 |
2 | How many times per week have you gone on the website? | • None / 1-5 / 6-10 / >10 |
3 | Has C@H made it easier to connect with other parents who care for children with NF? | • Why or why not? |
4 | What was it like to see others parents with children with NF online? | • Why? |
5 | What was it like to be connected to other parents of children with NF online? | • Why? |
6 | How did using C@H make you feel? | |
7 | Did you learn about yourself after using C@H? | • If yes, what did you learn? |
8 | Did you learn from other parents using C@H? | • If yes, what did you learn? |
9 | Do you talk more about NF with your child with NF, with your family members, or with others? | • If yes, with whom? • If no, why not? |
10 | Is it easier to talk about your child’s NF after using C@H? | • If yes, how? • If not, why not? |
11 | What did you like best and least about the C@H website? | |
12 | Did you learn more about NF since becoming a part of C@H? | • Why or why not? |
Feasibility of the C@H website | ||
13 | Have you ever used or found a website like C@H in the past? | |
14 | Was the website C@H easy to use? | • If not, what changes could you recommend to make it easier to use? |
15 | What device did you use to make videos? | |
16 | What was it like to make videos now that you have been using the C@H website? | |
17 | Were you able to upload your video files without help? | • If no, why not? |
18 | What feature(s) did you use? | |
19 | What would make C@H better for you? | • Why? |
20 | What else would you have liked the C@H site to include? | • Links to research? Why? • Educational tips? Why? • A mobile application (an “App”) to have a direct access through your smartphone rather than a website as it is now? Why? |
21 | Would you recommend this site to others? | • Why or why not? |
Future use of the C@H website | ||
22 | Would you like to use C@H in the future after the pilot study is completed? | • Why or why not? |
23 | Should this website be developed further? | • If no, why? • If yes, should we include: All parents of youth with NF1 in the world? All parents of youth with a chronic condition at Boston Children’s Hospital? All parents of youth with a chronic condition in the world? |
24 | Would you be willing to work with us to improve the site in the future? | |
25 | Do you have suggestions on how we could have improved this experience for you? | |
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Akre, C., Polvinen, J., Ullrich, N.J. et al. Children’s at Home: Pilot Study Assessing Dedicated Social Media for Parents of Adolescents with Neurofibromatosis Type 1. J Genet Counsel 27, 505–517 (2018). https://doi.org/10.1007/s10897-018-0213-0
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DOI: https://doi.org/10.1007/s10897-018-0213-0