The Impact on Parents of Diagnosing PCD in Young Children

Corine Driessens, Siobhan Carr, Edel Clough, Fiona Copeland, Sharon Dell, Lucy Dixon, Amanda Harris, Rebecca Knibb, Margaret Leigh, Manjith Narayanan, Beatrice Redfern, Evie Robson, Michael Sawras, Lynne Schofield, Kelli Sullivan, Myra Tipping, Nhu Tran, Woolf Walker, Jane S. Lucas, Laura Behan*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

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.
Original languageEnglish
Article number4774
Pages (from-to)e4774
JournalJournal of Clinical Medicine
Volume11
Issue number16
Early online date16 Aug 2022
DOIs
Publication statusPublished - 16 Aug 2022

Bibliographical note

Copyright: © 2022 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).

Funding Information:
This study/project is funded by the National Institute for Health Research (NIHR) Research for Patient Benefit programme (NIHR 200470). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. The UK National PCD Service is commissioned and funded by NHS England. PCD research in Southampton is supported by NIHR Southampton Respiratory Biomedical Research Unit and NIHR Wellcome Trust Clinical Research Facility.

Keywords

  • primary ciliary dyskinesia
  • diagnosis
  • caregiver burden
  • chronic illness
  • preschool
  • COVID-19
  • quality of life

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