Experiences of parents whose young child has been diagnosed with primary ciliary dyskinesia

Corine Driessens; Siohan 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:10.31124/advance.14071421.v1

Experiences of parents whose young child has been diagnosed with primary ciliary dyskinesia

Corine Driessens
, Siohan 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

Research output: Preprint or Working paper › Preprint

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Abstract

Primary ciliary dyskinesia is an incurable, rare, inherited, chronic condition. Treatment includes regular clearing of airway mucus, aggressive treatment of infections and management of hearing loss. Caregiver burden has not been explored, hence we interviewed 18 English speaking mothers and 6 English speaking fathers of children under 6 years who were diagnosed with PCD around the world. The parents described how the child's diagnosis, treatment regimen, and health status impacted their life. They discussed the impact of the COVID-19 pandemic and they talked about the different ways they cope with challenges that arise. The need for integrated social care is discussed.

Original language	English
Number of pages	20
DOIs	https://doi.org/10.31124/advance.14071421.v1
Publication status	Published - 24 Feb 2021

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10.31124/advance.14071421.v1Licence: CC BY 4.0

Experiences of parents whose young child has been diagnosed with primary ciliary dyskinesia_preprint
CC-BY 4.0 — This is a preprint and has not been peer reviewed. Data may be preliminary. — https://doi.org/10.31124/advance.14071421.v1
Submitted manuscript, 162 KBLicence: CC BY 4.0

Cite this

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. (2021). Experiences of parents whose young child has been diagnosed with primary ciliary dyskinesia. https://doi.org/10.31124/advance.14071421.v1

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abstract = "Primary ciliary dyskinesia is an incurable, rare, inherited, chronic condition. Treatment includes regular clearing of airway mucus, aggressive treatment of infections and management of hearing loss. Caregiver burden has not been explored, hence we interviewed 18 English speaking mothers and 6 English speaking fathers of children under 6 years who were diagnosed with PCD around the world. The parents described how the child's diagnosis, treatment regimen, and health status impacted their life. They discussed the impact of the COVID-19 pandemic and they talked about the different ways they cope with challenges that arise. The need for integrated social care is discussed.",

author = "Corine Driessens and Siohan 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",

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AU - Driessens, Corine

AU - Carr, Siohan

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

PY - 2021/2/24

Y1 - 2021/2/24

N2 - Primary ciliary dyskinesia is an incurable, rare, inherited, chronic condition. Treatment includes regular clearing of airway mucus, aggressive treatment of infections and management of hearing loss. Caregiver burden has not been explored, hence we interviewed 18 English speaking mothers and 6 English speaking fathers of children under 6 years who were diagnosed with PCD around the world. The parents described how the child's diagnosis, treatment regimen, and health status impacted their life. They discussed the impact of the COVID-19 pandemic and they talked about the different ways they cope with challenges that arise. The need for integrated social care is discussed.

AB - Primary ciliary dyskinesia is an incurable, rare, inherited, chronic condition. Treatment includes regular clearing of airway mucus, aggressive treatment of infections and management of hearing loss. Caregiver burden has not been explored, hence we interviewed 18 English speaking mothers and 6 English speaking fathers of children under 6 years who were diagnosed with PCD around the world. The parents described how the child's diagnosis, treatment regimen, and health status impacted their life. They discussed the impact of the COVID-19 pandemic and they talked about the different ways they cope with challenges that arise. The need for integrated social care is discussed.

UR - https://advance.sagepub.com/doi/full/10.31124/advance.14071421.v1

U2 - 10.31124/advance.14071421.v1

DO - 10.31124/advance.14071421.v1

M3 - Preprint

BT - Experiences of parents whose young child has been diagnosed with primary ciliary dyskinesia

ER -

Experiences of parents whose young child has been diagnosed with primary ciliary dyskinesia

Abstract

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