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The impact on parents of diagnosing PCD in young children

The impact on parents of diagnosing PCD in young children
The impact on parents of diagnosing PCD in young children
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.
2077-0383
Driessens, Corine
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Carr, Siobhan
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Clough, Edel
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Copeland, Fiona
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Dell, Sharon
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Dixon, Lucy
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Harris, Amanda
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Knibb, Rebecca
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Leigh, Margaret
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Narayanan, Manjith
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Redfern, Beatrice
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Robson, Evie
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Sawras, Michael
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Schofield, Lynne
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Sullivan, Kelly
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Tipping, Myra
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Tran, Nhu
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Walker, Woolf
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Lucas, Jane
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Behan, Laura
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Driessens, Corine
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Carr, Siobhan
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Clough, Edel
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Copeland, Fiona
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Dell, Sharon
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Dixon, Lucy
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Harris, Amanda
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Knibb, Rebecca
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Leigh, Margaret
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Narayanan, Manjith
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Redfern, Beatrice
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Robson, Evie
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Sawras, Michael
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Schofield, Lynne
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Sullivan, Kelly
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Tipping, Myra
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Tran, Nhu
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Walker, Woolf
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Lucas, Jane
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Behan, Laura
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Driessens, Corine, Carr, Siobhan, Clough, Edel, Copeland, Fiona, Dell, Sharon, Dixon, Lucy, Harris, Amanda, Knibb, Rebecca, Leigh, Margaret, Narayanan, Manjith, Redfern, Beatrice, Robson, Evie, Sawras, Michael, Schofield, Lynne, Sullivan, Kelly, Tipping, Myra, Tran, Nhu, Walker, Woolf, Lucas, Jane and Behan, Laura (2022) The impact on parents of diagnosing PCD in young children. Journal of Clinical Medicine, 11 (16), [4774]. (doi:10.3390/jcm11164774).

Record type: Article

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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Accepted/In Press date: 11 August 2022
Published date: 16 August 2022

Identifiers

Local EPrints ID: 476282
URI: http://eprints.soton.ac.uk/id/eprint/476282
ISSN: 2077-0383
PURE UUID: 8da12473-c605-49db-b8fa-2a17b269277b
ORCID for Corine Driessens: ORCID iD orcid.org/0000-0003-3767-7683
ORCID for Jane Lucas: ORCID iD orcid.org/0000-0001-8701-9975

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Date deposited: 18 Apr 2023 16:40
Last modified: 17 Mar 2024 03:33

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Contributors

Author: Corine Driessens ORCID iD
Author: Siobhan Carr
Author: Edel Clough
Author: Fiona Copeland
Author: Sharon Dell
Author: Lucy Dixon
Author: Amanda Harris
Author: Rebecca Knibb
Author: Margaret Leigh
Author: Manjith Narayanan
Author: Beatrice Redfern
Author: Evie Robson
Author: Michael Sawras
Author: Lynne Schofield
Author: Kelly Sullivan
Author: Myra Tipping
Author: Nhu Tran
Author: Woolf Walker
Author: Jane Lucas ORCID iD
Author: Laura Behan

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