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

## TL;DR

This study explores how young people with a rare genetic condition called primary ciliary dyskinesia experience transitioning into adulthood and managing their health.

## Contribution

The study provides new insights into the lived experiences of young adults with PCD during healthcare transition using interpretative phenomenological analysis.

## Key findings

- Participants experienced challenges in reconceptualizing their stigmatized identity.
- They emphasized the importance of support systems in achieving independence.
- Uncertainty about the future was a common theme among participants.

## 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.