Qualitative study exploring the views and perceptions of parents/carers of young children with CF regarding the introduction of CFTR modulator therapy (The REVEAL study; PaRents pErspectiVEs of KAftrio in chiLdren aged 2-5).
Sioned Haf Davies, Faye Wade, Heather Fogg, Adam Walsh, Kevin W Southern
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引用次数: 0
Abstract
Background: Cystic fibrosis (CF) is associated with a historically high treatment burden which causes anxiety and exhaustion for parents of children with CF, especially in the early years of a child's life. Recently, a new medication, elexacaftor/tezacaftor/ivacaftor (ETI), has become available to some people with CF, which has had a significant impact on the quality of life of older children and adults. This medication will soon be available for children ages 2-5 in the UK. This study investigated parents' perspectives before their children could start ETI.
Method: 10 parents of young children with CF participated in semistructured online focus groups. The data were analysed using thematic analysis to identify key themes.
Results: Three reviewers identified four main themes: (1) The 'roller coaster' of parental emotions: Shock, hope, uncertainty and anticipation, (2) The dark side of the unknown, side effects and burden of decision making, (3) The value of simple pleasures in a life with CF; treatment burden, normality, future, family life and (4) Reforming clinical care in the new era of CF care; support, communication and the future.
Conclusion: Parents experience a range of emotions from the day of diagnosis. While ETI brings hope and positivity, parents are concerned about the medication's safety. Parents have clear hopes and wishes for their child's future and reflect on the need for clinicians to consider reforming clinical care in the new era of CF for those eligible for new therapies.
期刊介绍：
BMJ Open Respiratory Research is a peer-reviewed, open access journal publishing respiratory and critical care medicine. It is the sister journal to Thorax and co-owned by the British Thoracic Society and BMJ. The journal focuses on robustness of methodology and scientific rigour with less emphasis on novelty or perceived impact. BMJ Open Respiratory Research operates a rapid review process, with continuous publication online, ensuring timely, up-to-date research is available worldwide. The journal publishes review articles and all research study types: Basic science including laboratory based experiments and animal models, Pilot studies or proof of concept, Observational studies, Study protocols, Registries, Clinical trials from phase I to multicentre randomised clinical trials, Systematic reviews and meta-analyses.
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