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An Internet support group for parents of children with neurofibromatosis type 1: a qualitative analysis

Staci Martin1, Kari L Struemph2, Alyssa Poblete2

  • 1Pediatric Oncology Branch, National Cancer Institute, National Institutes of Health, 9030 Old Georgetown Road, Bethesda, MD, 20892-8200, USA. martins@mail.nih.gov.

Journal of Community Genetics
|March 4, 2018
PubMed

Insights

Parents of children with neurofibromatosis type 1 (NF1) found an 8-week internet support group beneficial for information sharing and emotional support. The study highlights the need for reliable NF1 resources and community involvement for families.

Area of Science:

  • Genetics
  • Psychology
  • Online Health Communities

Background:

  • Parents of children with neurofibromatosis type 1 (NF1) face significant emotional distress.
  • Accessing traditional support groups can be challenging for these families.
  • Internet support groups (ISGs) offer a potential avenue for support.

Purpose of the Study:

  • To evaluate the effectiveness of an 8-week Internet support group (ISG) for parents of children with NF1.
  • To identify parental needs and concerns within an online support setting.
  • To understand the process and content themes of parental engagement in an ISG.

Main Methods:

  • An 8-week ISG was conducted with 33 parents of children with NF1.
  • Transcripts were analyzed using inductive thematic analysis.
  • Process and content themes, including codes and subcodes, were identified.

Main Results:

  • Parents used the ISG for information seeking, sharing experiences, and providing/receiving emotional support.
  • Key content themes included medical concerns, psychosocial/cognitive development, and accessing NF1 community resources.
  • The ISG facilitated both informational and emotional support exchange.

Conclusions:

  • Internet support groups are a valuable resource for parents of children with NF1.
  • Reliable medical information and multidisciplinary support are crucial for NF1 families.
  • Encouraging involvement in the NF1 community enhances family well-being.

Keywords:
Internet support groupNeurofibromatosis type 1ParentsQualitative analysis

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