Growing up with Primary Ciliary Dyskinesia in Bradford, UK: exploring patients experiences as a physiotherapist

SCHOFIELD, Lynne M. and HOROBIN, Hazel E. (2014). Growing up with Primary Ciliary Dyskinesia in Bradford, UK: exploring patients experiences as a physiotherapist. Physiotherapy Theory and Practice, 30 (3), 157-164.

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Primary Ciliary Dyskinesia (PCD) is a condition which causes impaired mucociliary clearance, resulting in sputum retention and recurrent respiratory tract infections. Physiotherapy, in the form of airway clearance techniques and exercise is recommended to patients with PCD to facilitate sputum clearance. As children diagnosed with PCD develop into adults, understanding their experiences of growing up with this long-term condition and undertaking physiotherapy may help to provide insight to clinicians. No previous research has been published which explores the lived experiences of children and young people with PCD. The prevalence of PCD in Bradford in the North of the UK is unusually high, signifying the importance of understanding the experiences of this patient population. This qualitative study used Interpretive Phenomenological Analysis to allow the researcher, as a physiotherapist, to investigate the lived experiences of five paediatric patients with PCD. While patients' experiences are all unique, three themes emerged across the analysis of the interviews: (1) the experiences of day to day life with the symptoms and treatment burden of PCD; (2) participants' awareness of their own symptoms and knowledge of PCD; and (3) the development of mastery skills and devolution of management from the family to the growing child. The results from this study suggested that facilitation of disease acceptance, strategies to increase patient empowerment, the use of patient-centred communication and understanding the contextualisation of patients' experiences may all help to guide clinical practice.

Item Type: Article
Research Institute, Centre or Group - Does NOT include content added after October 2018: Centre for Health and Social Care Research
Identification Number:
Page Range: 157-164
Depositing User: Ann Betterton
Date Deposited: 16 Dec 2014 16:38
Last Modified: 18 Mar 2021 10:45

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