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

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posted on 24.02.2021, 22:32 by 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

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.

Funding

NIHR 200470

History

Declaration of conflicts of interest

No

Corresponding author email

l.behan@soton.ac.uk

Lead author country

United Kingdom

Lead author job role

Higher Education Researcher

Lead author institution

University of Southampton

Human Participants

Yes

Ethics statement

The study received ethical approval from the Southampton and South West Hants Research Ethics Committee (06/Q1702/10; University of Southampton ERGO#53155), University of North Carolina Internal Review Board (IRB#09-1099), and Hospital for Sick Toronto Children Research Ethics Board (REB#1000024263).

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