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

Details

Ressource 1Download: Akre-Journal of genetic counseling-2018.pdf (261.52 [Ko])
State: Public
Version: Author's accepted manuscript
License: Not specified
Serval ID
serval:BIB_D27F67DCEE51
Type
Article: article from journal or magazin.
Collection
Publications
Institution
Title
Children's at Home: Pilot Study Assessing Dedicated Social Media for Parents of Adolescents with Neurofibromatosis Type 1.
Journal
Journal of genetic counseling
Author(s)
Akre C., Polvinen J., Ullrich N.J., Rich M.
ISSN
1573-3599 (Electronic)
ISSN-L
1059-7700
Publication state
Published
Issued date
04/2018
Peer-reviewed
Oui
Volume
27
Number
2
Pages
505-517
Language
english
Notes
Publication types: Journal Article ; Research Support, Non-U.S. Gov't
Publication Status: ppublish
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.
Keywords
Adolescent, Child, Female, Humans, Male, Neurofibromatosis 1/psychology, Parents/psychology, Pilot Projects, Social Media, Adolescents, Intervention, Neurofibromatosis, Parents, Peer support, Social media
Pubmed
Web of science
Open Access
Yes
Create date
01/02/2018 17:33
Last modification date
20/08/2019 15:52
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