Abstract
| Original language | English |
|---|---|
| Pages (from-to) | 33-39 |
| Journal | Journal of Community Genetics |
| Volume | 7 |
| Issue number | 1 |
| Early online date | 23 Jul 2015 |
| DOIs | |
| Publication status | Published - 2016 |
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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 journal › Article
}
TY - JOUR
T1 - Parents’ experiences of caring for a young person with neurofibromatosis type 1 (NF1): a qualitative study
AU - Barke, J.
AU - Coad, Jane
AU - Harcourt, D.
N1 - 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
PY - 2016
Y1 - 2016
N2 - 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.
AB - 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.
KW - Neurofibromatosis type 1
KW - Body image
KW - Qualitative
KW - Parents
U2 - 10.1007/s12687-015-0247-z
DO - 10.1007/s12687-015-0247-z
M3 - Article
VL - 7
SP - 33
EP - 39
JO - Journal of Community Genetics
JF - Journal of Community Genetics
SN - 1868-310X
IS - 1
ER -