'Don't let it hold you back' - The experience of transition to adulthood in young people with primary ciliary dyskinesia: An interpretative phenomenological analysis

Rhys Dore; Isabella E Nizza; Hannah M Mitchison; Celine Lewis

doi:10.1177/13591053231223912

'Don't let it hold you back' - The experience of transition to adulthood in young people with primary ciliary dyskinesia: An interpretative phenomenological analysis

J Health Psychol. 2024 Jan 28:13591053231223912. doi: 10.1177/13591053231223912. Online ahead of print.

Authors

Rhys Dore¹, Isabella E Nizza², Hannah M Mitchison¹, Celine Lewis^{3

4}

Affiliations

¹ Genetics & Genomic Medicine, UCL Great Ormond Street Institute of Child Health, London, UK.
² Department of Psychological Sciences, Birkbeck University of London, London, UK.
³ Population, Policy and Practice, UCL Great Ormond Street Institute of Child Health, London, UK.
⁴ North Thames Genomic Laboratory Hub, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.

PMID: 38282372
DOI: 10.1177/13591053231223912

Abstract

Primary ciliary dyskinesia (PCD) is a rare, chronic genetic condition with variable features arising from motile cilia dysfunction, including recurrent respiratory infections, sinonasal disease, reduced hearing, infertility and situs inversus. The aim of the study was to understand the experiences of young people with PCD as they transition into adulthood and adult healthcare services. An interpretative phenomenological analytical method was applied. Semi-structured interviews were conducted with three participants aged 18-24 years. Four interconnected group experiential themes were identified: (1) reconceptualising a stigmatised identity, (2) sharing the journey to independence, (3) entering adulthood with newfound autonomy, (4) anticipating an uncertain future. Overall, we found that transition for young people with PCD presents as a complex period marked by identity-formation, creating systems of support and becoming an autonomous adult. Facilitation of personalised and integrated approaches to care should be prioritised. Our findings are important to help health professionals provide appropriate, anticipatory support.

Keywords: adolescence; chronic illness; experience; health care systems; illness perception; interpretative phenomenological analysis (IPA); qualitative methods; respiratory problems; stigmatisation.