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.
|Number of pages||8|
|Journal||Health Psychology Update|
|Publication status||Published - Mar 2009|