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

doi:10.3390/jcm11164774

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 journal › Article › peer-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 language	English
Article number	4774
Journal	Journal of Clinical Medicine
Volume	11
Issue number	16
Early online date	16 Aug 2022
DOIs	https://doi.org/10.3390/jcm11164774
Publication status	Published - 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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Driessens, C., Carr, S., Clough, E., Copeland, F., Dell, S., Dixon, L., Harris, A., Knibb, R., Leigh, M., Narayanan, M., Redfern, B., Robson, E., Sawras, M., Schofield, L., Sullivan, K., Tipping, M., Tran, N., Walker, W., Lucas, J. S., & Behan, L. (2022). The Impact on Parents of Diagnosing PCD in Young Children. Journal of Clinical Medicine , 11(16), Article 4774. https://doi.org/10.3390/jcm11164774

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title = "The Impact on Parents of Diagnosing PCD in Young Children",

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{\textquoteright} experiences following child{\textquoteright}s diagnosis, impact of child{\textquoteright}s treatment regimen on parent, impact of child{\textquoteright}s health status on parent, parent{\textquoteright}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{\textquoteright}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.",

keywords = "primary ciliary dyskinesia, diagnosis, caregiver burden, chronic illness, preschool, COVID-19, quality of life",

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

note = "Copyright: {\textcopyright} 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.",

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Driessens, C, Carr, S, Clough, E, Copeland, F, Dell, S, Dixon, L, Harris, A, Knibb, R, Leigh, M, Narayanan, M, Redfern, B, Robson, E, Sawras, M, Schofield, L, Sullivan, K, Tipping, M, Tran, N, Walker, W, Lucas, JS & Behan, L 2022, 'The Impact on Parents of Diagnosing PCD in Young Children', Journal of Clinical Medicine , vol. 11, no. 16, 4774. https://doi.org/10.3390/jcm11164774

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AU - Driessens, Corine

AU - Carr, Siobhan

AU - Clough, Edel

AU - Copeland, Fiona

AU - Dell, Sharon

AU - Dixon, Lucy

AU - Harris, Amanda

AU - Knibb, Rebecca

AU - Leigh, Margaret

AU - Narayanan, Manjith

AU - Redfern, Beatrice

AU - Robson, Evie

AU - Sawras, Michael

AU - Schofield, Lynne

AU - Sullivan, Kelli

AU - Tipping, Myra

AU - Tran, Nhu

AU - Walker, Woolf

AU - Lucas, Jane S.

AU - Behan, Laura

N1 - 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.

PY - 2022/8/16

Y1 - 2022/8/16

N2 - 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.

AB - 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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DO - 10.3390/jcm11164774

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JO - Journal of Clinical Medicine

JF - Journal of Clinical Medicine

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The Impact on Parents of Diagnosing PCD in Young Children

Abstract

Bibliographical note

Keywords

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