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
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.