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

Author:

Martin, Staci [ORCID]

Struemph, Kari L

Poblete, Alyssa

Tamula, Mary Anne

Lockridge, Robin

Roderick, Marie Claire

Wolters, Pamela
Author Address

Pediatric Oncology Branch, National Cancer Institute, National Institutes of Health, 9030 Old Georgetown Road, Bethesda, MD, 20892-8200, USA. martins@mail.nih.gov., Clinical Research Directorate/Clinical Monitoring Research Program, Leidos Biomedical Research Inc., NCI Campus at Frederick, Frederick, MD, 21702, USA.,

Abstract:

Parents of children with neurofibromatosis type 1 (NF1), a rare genetic condition, are at risk for emotional distress. While they may benefit from support groups, they may find it difficult to access support. We conducted an 8-week Internet support group (ISG) with 33 parents (29 mothers, 4 fathers) of children with NF1. Transcripts were evaluated using inductive thematic analysis to determine parental needs and concerns; a process and content theme were identified, with each containing codes and subcodes. In terms of process, parents utilized the ISG to seek out information, share information and experiences, and provide and receive emotional support. Common content codes included medical concerns, psychosocial/cognitive development, and accessing NF1 community resources. These concerns highlight the importance of providing parents with reliable information about their child 39;s condition, providing multidisciplinary support to the children with NF1 and their families, and encouraging involvement in the NF1 community.

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