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.

Feasibility and Preliminary Efficacy of an Internet Support Group for Parents of a Child with Neurofibromatosis Type 1: a Pilot Study

“…Reiter-Purtill et al (2008) found that greater neurological impairment in the child with NF1 was associated with lower perceived social support and greater maternal distress compared with mothers of children with less neurological impairment. More recently, Barke et al (2016) conducted qualitative interviews with parents of a child with NF1. Participants noted difficulties in accessing social support and in finding accurate information about the disease.…”

The health‐related quality of life of children, adolescents, and young adults with neurofibromatosis type 1 and their families: Analysis of narratives

“…In one study, nine youth aged 14–24 with NF1 were interviewed and revealed that the variability of the condition, the variety of ways NF1 affects social experiences, and how others understood or misunderstood the disorder influenced their experiences (Barke, Harcourt, & Coad, ). Similarly, seven parents of children with NF1 were interviewed and revealed concerns about the uncertainty of the condition and the appearance and noticeability of the symptoms (Barke, Coad, & Harcourt, ). The parents also stressed that the extent to which they, their children, and others understood NF1 affected their experiences caring for their child (Barke et al., ).…”

“…Similarly, seven parents of children with NF1 were interviewed and revealed concerns about the uncertainty of the condition and the appearance and noticeability of the symptoms (Barke, Coad, & Harcourt, ). The parents also stressed that the extent to which they, their children, and others understood NF1 affected their experiences caring for their child (Barke et al., ). Few qualitative studies have been conducted, however, that have queried both youth with NF1 and their parents in regards to the day‐to‐day impact of the disorder.…”

Worries and needs of adults and parents of adults with neurofibromatosis type 1

“…Parents of patients have previously participated in research to elucidate the impact of NF1 on their children (Barke et al, 2016), yet the impact on parents themselves has not been described yet. In our study, parents of young adults reported many worries, high stress levels, and little attention from HCPs for their complex parental role.…”