'I have NF. NF does not have me': an interpretative phenomenological analysis of coping with Neurofibromatosis Type 1

Sandi Dheensa, Glenn Williams

Research output: Contribution to journalArticle (Academic Journal)peer-review

Abstract

Past research has identified many physical characteristics of Neurofibromatosis Type 1 (NF1), a genetic disorder that can cause severe disfigurement. However, there is a paucity of research regarding psycho-social effects. Existing qualitative research has focussed on proxy reports for affected children, neglecting adult experiences. This present study investigates these. Using Interpretative Phenomenological Analysis (IPA), five themes emerged; insufficiency of NF1 information, feeling judged by other people, social comparisons, positive re-appraisal of one’s situation, and fluctuations in coping methods. The findings of this study highlight the importance of empathic and individualised health-care in aiding adaptation to NF1. Public awareness of NF1 and where necessary, therapies to develop adaptive coping strategies would also help ensure successful adaptation.
Original languageEnglish
Pages (from-to)3
Number of pages8
JournalHealth Psychology Update
Volume18
Issue number1
Publication statusPublished - Mar 2009

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