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

Détails

Ressource 1Télécharger: Akre-Journal of genetic counseling-2018.pdf (261.52 [Ko])
Etat: Public
Version: Author's accepted manuscript
Licence: Non spécifiée
ID Serval
serval:BIB_D27F67DCEE51
Type
Article: article d'un périodique ou d'un magazine.
Collection
Publications
Institution
Titre
Children's at Home: Pilot Study Assessing Dedicated Social Media for Parents of Adolescents with Neurofibromatosis Type 1.
Périodique
Journal of genetic counseling
Auteur(s)
Akre C., Polvinen J., Ullrich N.J., Rich M.
ISSN
1573-3599 (Electronic)
ISSN-L
1059-7700
Statut éditorial
Publié
Date de publication
04/2018
Peer-reviewed
Oui
Volume
27
Numéro
2
Pages
505-517
Langue
anglais
Notes
Publication types: Journal Article ; Research Support, Non-U.S. Gov't
Publication Status: ppublish
Résumé
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.
Mots-clé
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
Oui
Création de la notice
01/02/2018 18:33
Dernière modification de la notice
20/08/2019 16:52
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