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)
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 so...
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| Format: | Article |
| Language: | English |
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BMJ Publishing Group
2025-01-01
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| Series: | BMJ Open Respiratory Research |
| Online Access: | https://bmjopenrespres.bmj.com/content/12/1/e002522.full |
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| author | Kevin W Southern Sioned Haf Davies Faye Wade Heather Fogg Adam Walsh |
| author_facet | Kevin W Southern Sioned Haf Davies Faye Wade Heather Fogg Adam Walsh |
| author_sort | Kevin W Southern |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-969cc769fd004eb99a5c95ed9b33130d |
| institution | Kabale University |
| issn | 2052-4439 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open Respiratory Research |
| spelling | doaj-art-969cc769fd004eb99a5c95ed9b33130d2025-01-31T22:05:11ZengBMJ Publishing GroupBMJ Open Respiratory Research2052-44392025-01-0112110.1136/bmjresp-2024-002522Qualitative 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)Kevin W Southern0Sioned Haf Davies1Faye Wade2Heather Fogg3Adam Walsh4Alder Hey Children’s NHS Foundation Trust, Liverpool, UKUniversity of Liverpool School of Health Sciences, Liverpool, UKAlder Hey Children’s NHS Foundation Trust, Liverpool, UKAlder Hey Children’s NHS Foundation Trust, Liverpool, UKAlder Hey Children’s NHS Foundation Trust, Liverpool, UKBackground 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.https://bmjopenrespres.bmj.com/content/12/1/e002522.full |
| spellingShingle | Kevin W Southern Sioned Haf Davies Faye Wade Heather Fogg Adam Walsh 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) BMJ Open Respiratory Research |
| title | 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) |
| title_full | 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) |
| title_fullStr | 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) |
| title_full_unstemmed | 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) |
| title_short | 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) |
| title_sort | 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 |
| url | https://bmjopenrespres.bmj.com/content/12/1/e002522.full |
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