title: Parents' experiences of caring for a young person with neurofibromatosis type 1 (NF1): a qualitative study.
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.
authors.affiliation: Centre for Appearance Research, University of the West of England, Coldharbour Lane, Bristol, BS16 1QY, UK. jenny.barke@uwe.ac.uk.
authors.forename: Jenny
authors.initials: J
authors.lastname: Barke
authors.affiliation: Nursing, Midwifery and Healthcare Practice, Coventry University, Priory Street, Coventry, CV1 5FB, UK.
authors.forename: Jane
authors.initials: J
authors.lastname: Coad
authors.affiliation: Centre for Appearance Research, University of the West of England, Coldharbour Lane, Bristol, BS16 1QY, UK.
authors.forename: Diana
authors.initials: D
authors.lastname: Harcourt
keywords: Body image; Neurofibromatosis type 1; Parents; Qualitative