Attitudes About Internet Support Groups Among Adolescents and Young Adults with Neurofibromatosis Type 1 and their Parents

Staci Martin, Pamela L. Wolters, Andrea Baldwin, Marie Claire Roderick, Mary Anne Toledo-Tamula, Andrea Gillespie, Brigitte Widemann

Research output: Contribution to journalArticle

Abstract

Youth with neurofibromatosis type 1 (NF1) have multiple, complex symptoms associated with physical, social-emotional, and cognitive difficulties. In addition, caring for a child with NF1 can be extremely challenging for parents. Since research with other chronic illness populations suggests that social support, including internet support groups (ISGs), can be beneficial, this survey study aimed to determine the attitudes and preferences of adolescents and young adults with NF1 and parents of a child with NF1 regarding ISGs. Thirty patients and 30 caregivers completed a 24-item survey about ISGs. Many patients and parents are not aware of any ISGs for NF1, but are interested in using one in the future for a variety of reasons, including to get answers to their questions about NF1, to find out about research studies, and to discuss problems and concerns about NF1. Specific concerns of interest include physical, social-emotional, and cognitive aspects of NF1. ISGs have potential as a social support intervention within the NF1 community. ISGs for the NF1 population should include patients with NF1 (or parents of children with NF1) as well as a health professional, and both chat rooms and discussion boards likely would be well-received.

Original languageEnglish (US)
Pages (from-to)796-804
Number of pages9
JournalJournal of Genetic Counseling
Volume23
Issue number5
DOIs
StatePublished - Oct 1 2014

Keywords

  • Neurofibromatosis Type 1
  • internet support groups
  • parents
  • social support
  • survey
  • youth

ASJC Scopus subject areas

  • Genetics(clinical)

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    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. https://doi.org/10.1007/s10897-014-9688-5