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Journal of Community Genetics

, Volume 9, Issue 3, pp 327–334 | Cite as

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

  • Staci Martin
  • Kari L. Struemph
  • Alyssa Poblete
  • Mary Anne Toledo-Tamula
  • Robin Lockridge
  • Marie Claire Roderick
  • Pamela Wolters
Original Article

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’s condition, providing multidisciplinary support to the children with NF1 and their families, and encouraging involvement in the NF1 community.

Keywords

Internet support group Parents Neurofibromatosis type 1 Qualitative analysis 

Notes

Acknowledgements

The authors are grateful to the parents who participated in this study and to Andrea Baldwin, CRNP, for her assistance. We also acknowledge the continued support and encouragement of Pamela Knight and Annette Bakker from the Children’s Tumor Foundation. This research was supported by the Intramural Research Program of the National Cancer Institute, National Institutes of Health. The content of this publication does not necessarily reflect the views or policies of the Department of Health and Human Services nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government.

Funding information

This project has been funded in whole or in part with federal funds from the National Cancer Institute, National Institutes of Health, under Contract No. HHSN261200800001E.

Compliance with ethical standards

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all individual participants included in the study.

Conflict of interest

The authors declare that they have no conflict of interest.

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Copyright information

© This is a U.S. Government work and not under copyright protection in the US; foreign copyright protection may apply 2018

Authors and Affiliations

  1. 1.Pediatric Oncology Branch, National Cancer InstituteNational Institutes of HealthBethesdaUSA
  2. 2.Clinical Research Directorate/Clinical Monitoring Research ProgramLeidos Biomedical Research Inc.FrederickUSA

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