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Published on: September 19, 2019
Parents' experiences of caring for a young person with neurofibromatosis type 1 (NF1): a qualitative study
Jenny Barke1, Jane Coad2, Diana Harcourt3
1Centre for Appearance Research, University of the West of England, Coldharbour Lane, Bristol, BS16 1QY, UK. jenny.barke@uwe.ac.uk.
Insights
Caring for a child with Neurofibromatosis type 1 (NF1) involves managing uncertainty and altered appearance. Parents highlight the need for better public awareness and understanding of this genetic condition.
Area of Science:
- Genetics
- Pediatrics
- Psychology
Background:
- Neurofibromatosis type 1 (NF1) is a genetic disorder with variable presentation.
- Existing research primarily focuses on children's experiences, neglecting parental perspectives.
- Parents of children with NF1 face unique challenges in caregiving.
Purpose of the Study:
- To explore the experiences of parents caring for young people with NF1.
- To identify key challenges and needs of parents managing NF1.
- To understand the impact of NF1 on family dynamics and well-being.
Main Methods:
- Qualitative exploratory study design.
- Semi-structured interviews conducted with seven parents of children with NF1.
- Thematic analysis applied to interview data.
Main Results:
- Three primary themes emerged: managing condition uncertainty, coping with altered appearance, and navigating others' understanding of NF1.
- Parents found self-education beneficial for supporting their child.
- Lack of external awareness and understanding of NF1 presented significant challenges.
Conclusions:
- Parents of children with NF1 require reliable information and resources.
- There is a critical need for increased public awareness and understanding of NF1.
- Addressing the psychosocial impact on families is essential for comprehensive NF1 care.
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.
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