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


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.


Internet support group Parents Neurofibromatosis type 1 Qualitative analysis 



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.


  1. Ablon J (1996) Gender response to neurofibromatosis 1. Soc Sci Med 42(1):99–109CrossRefPubMedGoogle Scholar
  2. Allen T, Willard VW, Anderson LM, Hardy KK, Bonner MJ (2016) Social functioning and facial expression recognition in children with neurofibromatosis type 1. J Intellect Disabil Res 60(3):282–293. CrossRefPubMedGoogle Scholar
  3. Barke J, Coad J, Harcourt D (2016a) Parents’ experiences of caring for a young person with neurofibromatosis type 1 (NF1): a qualitative study. J Community Genet 7:33–39CrossRefPubMedGoogle Scholar
  4. Barke J, Coad J, Harcourt D (2016b) The role of appearance in adolescents’ experiences of neurofibromatosis type 1: a survey of young people and parents. J Genet Couns 25(5):1054–1062. CrossRefPubMedGoogle Scholar
  5. Binford Hopf RB, Le Grange D, Moessner M, Bauer S (2013) Internet-based chat support groups for parents in family-based treatment for adolescent eating disorders: a pilot study. Eur Eat Disord Rev 21(3):215–223. CrossRefPubMedGoogle Scholar
  6. Braun V, Clarke V (2014) What can “thematic analysis” offer health and wellbeing researchers? Int J Qual Stud Health Well Being 9:26152. CrossRefPubMedGoogle Scholar
  7. Braun TA, Shankar SP, Davis S, O’Leary B, Scheetz TE, Clark AF et al (2006) Prioritizing regions of candidate genes for efficient mutation screening. Hum Mutat 27(2):195–200. CrossRefPubMedGoogle Scholar
  8. Chiou HH, Hsieh LP (2008) Parenting stress in parents of children with epilepsy and asthma. J Child Neurol 23(3):301–306. CrossRefPubMedGoogle Scholar
  9. Creedy DK, Ludlow T, Beggs J, Collis D, Irvine D, Price D et al (2005) Perceptions of psychosocial support groups by parents who have a child with diabetes: a needs analysis. Collegian 12(2):28–32CrossRefPubMedGoogle Scholar
  10. Dionne-Odom JN, Demark-Wahnefried W, Taylor RA, Rocque GB, Azuero A, Acemgil A et al (2017) The self-care practices of family caregivers of persons with poor prognosis cancer: differences by varying levels of caregiver well-being and preparedness. Support Care Cancer 25(8):2437–2444. CrossRefPubMedPubMedCentralGoogle Scholar
  11. Gutmann DH, Ferner RE, Listernick RH, Korf BR, Wolters PL, Johnson KJ (2017) Neurofibromatosis type 1. Nat Rev Dis Prim 3:17004. CrossRefPubMedGoogle Scholar
  12. Heath G, Farre A, Shaw K (2017) Parenting a child with chronic illness as they transition into adulthood: a systematic review and thematic synthesis of parents’ experiences. Patient Educ Couns 100(1):76–92. CrossRefPubMedGoogle Scholar
  13. Hinton L, Kurinczuk JJ, Ziebland S (2010) Infertility; isolation and the Internet: a qualitative interview study. Patient Educ Couns 81(3):436–441. CrossRefPubMedGoogle Scholar
  14. Jett K, Friedman JM (2010) Clinical and genetic aspects of neurofibromatosis 1. Genet Med 12(1):1–11. CrossRefPubMedGoogle Scholar
  15. Kazak AE, Noll RB (2015) The integration of psychology in pediatric oncology research and practice: collaboration to improve care and outcomes for children and families. Am Psychol 70(2):146–158. CrossRefPubMedGoogle Scholar
  16. Korver S, Kinghorn A, Negin J, Shea-Perry M, Martiniuk AL (2017) Assessing the experience of social support for parents who attended Camp Trillium’s pediatric oncology family program. J Psychosoc Oncol 35(1):1–16. CrossRefPubMedGoogle Scholar
  17. Levine TM, Materek A, Abel J, O’Donnell M, Cutting LE (2006) Cognitive profile of neurofibromatosis type 1. Semin Pediatr Neurol 13(1):8–20CrossRefPubMedGoogle Scholar
  18. Malik SH, Coulson NS (2008) Computer-mediated infertility support groups: an exploratory study of online experiences. Patient Educ Couns 73(1):105–113. CrossRefPubMedGoogle Scholar
  19. Martin S, Roderick MC, Lockridge R, Toledo-Tamula MA, Baldwin A, Knight P, Wolters P (2017) Feasibility and preliminary efficacy of an Internet support group for parents of a child with neurofibromatosis type 1: a pilot study. J Genet Couns 26(3):576–585. CrossRefPubMedGoogle Scholar
  20. Pasold TL, Boateng BA, Portilla MG (2010) The use of a parent support group in the outpatient treatment of children and adolescents with eating disorders. Eat Disord 18(4):318–332. CrossRefPubMedGoogle Scholar
  21. Patel S, Shafer A, Brown J, Bulik C, Zucker N (2014) Parents of children with eating disorders: developing theory-based health communication messages to promote caregiver well-being. J Health Commun 19(5):593–608. CrossRefPubMedGoogle Scholar
  22. Patino-Fernandez AM, Pai AL, Alderfer M, Hwang WT, Reilly A, Kazak AE (2008) Acute stress in parents of children newly diagnosed with cancer. Pediatr Blood Cancer 50(2):289–292. CrossRefPubMedPubMedCentralGoogle Scholar
  23. Pelentsov LJ, Fielder AL, Laws TA, Esterman AJ (2016) The supportive care needs of parents with a child with a rare disease: results of an online survey. BMC Fam Pract 17:88. CrossRefPubMedPubMedCentralGoogle Scholar
  24. Plasschaert E, Descheemaeker MJ, Van Eylen L, Noens I, Steyaert J, Legius E (2015) Prevalence of autism spectrum disorder symptoms in children with neurofibromatosis type 1. Am J Med Genet B Neuropsychiatr Genet 168B(1):72–80. CrossRefPubMedGoogle Scholar
  25. Reiter-Purtill J, Schorry EK, Lovell AM, Vannatta K, Gerhardt CA, Noll RB (2008) Parental distress, family functioning, and social support in families with and without a child with neurofibromatosis 1. J Pediatr Psychol 33(4):422–434. CrossRefPubMedGoogle Scholar
  26. Somanadhan S, Larkin PJ (2016) Parents’ experiences of living with, and caring for children, adolescents and young adults with mucopolysaccharidosis (MPS). Orphanet J Rare Dis 11(1):138. CrossRefPubMedPubMedCentralGoogle Scholar
  27. Sveen J, Andersson G, Buhrman B, Sjoberg F, Willebrand M (2017) Internet-based information and support program for parents of children with burns: a randomized controlled trial. Burns 43(3):583–591. CrossRefPubMedGoogle Scholar
  28. Tollefson MM, Finnie DM, Schoch JJ, Eton DT (2017) Impact of childhood psoriasis on parents of affected children. J Am Acad Dermatol 76(2):286–289 e285. CrossRefPubMedGoogle Scholar
  29. Tonsgard JH (2006) Clinical manifestations and management of neurofibromatosis type 1. Semin Pediatr Neurol 13:2–7CrossRefPubMedGoogle Scholar

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

Personalised recommendations