The Impact on Parents of Diagnosing PCD in Young Children

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  • Driessens, Corine
    • Other Affiliation: University of Southampton
  • Carr, Siobhan
    • Other Affiliation: Royal Brompton & Harefield Hospital NHS Foundation Trust
  • Clough, Edel
    • Other Affiliation: PCD Support UK
  • Copeland, Fiona
    • Other Affiliation: PCD Support UK
  • Dell, Sharon
    • Other Affiliation: University of British Columbia
  • Dixon, Lucy
    • Other Affiliation: PCD Support UK
  • Harris, Amanda
    • Other Affiliation: University Hospital Southampton NHS Foundation Trust
  • Knibb, Rebecca
    • Other Affiliation: Aston University
  • Leigh, Margaret
    • School of Medicine, Department of Pediatrics
  • Narayanan, Manjith
    • Other Affiliation: University Hospitals of Leicester NHS Foundation Trust
  • Redfern, Beatrice
    • Other Affiliation: PCD Support UK
  • Robson, Evie
    • Other Affiliation: Leeds Children's Hospital at Leeds Teaching Hospitals NHS Foundation Trust
  • Sawras, Michael
    • Other Affiliation: University of Toronto
  • Schofield, Lynne
    • Other Affiliation: Leeds Children's Hospital at Leeds Teaching Hospitals NHS Foundation Trust
  • Sullivan, Kelli
    • School of Medicine, Marsico Lung Institute/UNC Cystic Fibrosis Center
  • Tipping, Myra
    • Other Affiliation: PCD Support UK
  • Tran, Nhu
    • Other Affiliation: PCD Support UK
  • Walker, Woolf
    • Other Affiliation: University Hospital Southampton NHS Foundation Trust
  • Lucas, Jane S.
    • Other Affiliation: University of Southampton
  • Behan, Laura
    • Other Affiliation: University of Southampton
Abstract
  • Primary ciliary dyskinesia (PCD) is an incurable, rare, inherited, chronic condition. Treatment includes the regular clearing of airway mucus, aggressive treatment of infections and management of hearing loss. Caregiver burden has not been explored, hence we interviewed 18 mothers and 6 fathers of children under 6 years to understand the impact of diagnostic testing and implications of a positive diagnosis. Interviews were transcribed and thematically analysed and five key themes were identified. These included the parents’ experiences following child’s diagnosis, impact of child’s treatment regimen on parent, impact of child’s health status on parent, parent’s coping strategies, and parental concerns for the future. Parents described their diagnostic journey, with the findings revealing how a lack of awareness among clinicians of the PCD symptom pattern can lead to a delayed diagnosis. Parents discussed the emotional and practical impact of a PCD diagnosis and the coping strategies employed to deal with challenges arising following a diagnosis. Parents use a variety of different lifestyle changes to accommodate their child’s treatment regimen and to cope with disruptive life events such as the COVID-19 pandemic. This study provides valuable insights into parental adjustment and adaptation to a PCD diagnosis and management regimen. Going forward, this research highlights the need for integrated social care for PCD patients and their families.
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  • Article
Rights statement
  • In Copyright
License
  • Attribution 4.0 International
Journal title
  • Journal of Clinical Medicine
Journal volume
  • 11
Journal issue
  • 16
Page start
  • 4774
Language
  • English
Version
  • Publisher
ISSN
  • 2077-0383

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