Preprints are early versions of research articles that have not been peer reviewed. They should not be regarded as conclusive and should not be reported in news media as established information.
Experiences of parents whose young child has been diagnosed with primary ciliary dyskinesia
preprintposted on 2021-02-24, 22:32 authored 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 BehanLaura 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.
Declaration of conflicts of interestNo
Corresponding author email@example.com
Lead author countryUnited Kingdom
Lead author job roleHigher Education Researcher
Lead author institutionUniversity of Southampton
Ethics statementThe 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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