Parents’ experiences of caring for a young person with neurofibromatosis type 1 (NF1): a qualitative study

J. Barke, Jane Coad, D. Harcourt

Research output: Contribution to journalArticle

6 Citations (Scopus)
51 Downloads (Pure)

Abstract

Neurofibromatosis type 1 (NF1) is a variable and unpredictable genetic condition that can lead to changes to an individual’s appearance. Research has started to explore children’s and young people’s experiences of living with the condition; however, there is a lack of research with parents. This exploratory qualitative study set out to examine parents’ experiences of caring for a young person with NF1. Seven parents took part in semi structured interviews which were subjected to a thematic analysis. Three key themes were identified which related to managing the uncertainty of the condition, the impact of an altered appearance, and others’ awareness and understanding of NF1. Parents felt that understanding NF1 themselves in order to support their child was beneficial whilst a perceived lack of understanding by others was cited as a significant challenge. Parents require trustworthy information and also more widely call for greater understanding and awareness of the condition.
Original languageEnglish
Pages (from-to)33-39
JournalJournal of Community Genetics
Volume7
Issue number1
Early online date23 Jul 2015
DOIs
Publication statusPublished - 2016

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Neurofibromatosis 1
Parents
Social Conditions
Research
Uncertainty
Interviews

Bibliographical note

Article in press, full citation details will be updated once available.
The final publication is available at Springer via http://dx.doi.org/10.1007/s12687-015-0247-z

Keywords

  • Neurofibromatosis type 1
  • Body image
  • Qualitative
  • Parents

Cite this

Parents’ experiences of caring for a young person with neurofibromatosis type 1 (NF1): a qualitative study. / Barke, J.; Coad, Jane; Harcourt, D.

In: Journal of Community Genetics, Vol. 7, No. 1, 2016, p. 33-39.

Research output: Contribution to journalArticle

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