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• W4381190300 abstract "<h3>Objectives</h3> Primary ciliary dyskinesia (PCD) is a rare genetic ciliopathy with variable features including recurrent respiratory infections, sinonasal disease, reduced hearing, infertility and situs inversus. It is a chronic condition with no curative therapy and thus affected young people will transition into adulthood with PCD. There is limited qualitative research regarding the experience of transition for these young people. Therefore, the aim of this research is to understand the experiences of young people with PCD as they transition into adulthood and to adult healthcare services. <h3>Methods</h3> An interpretative phenomenological analytical method was applied. This qualitative method is used with purposively sampled small groups to enable in-depth ideographic and interpretative insights into the lived experiences of participants. Semi-structured virtual interviews were conducted with three participants aged 18–24 years who were enrolled via advertisement with PCD Support UK. These interviews were transcribed and analysed interpretatively and iteratively, with final collation of shared experiences. <h3>Results</h3> Three interconnected group experiential themes with subthemes were identified: The first theme was ‘PCD and the self’. Participants demonstrated concealment of their condition and experienced both external and internalised stigmatisation. However, PCD was often reconceptualised as positive and contributory to their identities. The second theme was ‘Seeking support’. Participants often found themselves falling through the cracks in both healthcare and educational systems. To combat this, they increasingly recognised the importance of knowledge regarding PCD. Family, friends, and those with shared experiences provided supportive foundations. The third theme was ‘Newfound autonomy’. Strikingly, the transition to adulthood was marked by recognition of their own responsibility and the ability to make informed choices about their lives. There was a concerted effort to seek success in their chosen pathways and to mitigate risks arising from their condition in realising these goals. Despite this, they remained faced with a future entangled with uncertainty in view of their health. <h3>Conclusion</h3> Transition for young people with PCD is a complex and dynamic period marked by identity-formation, creating systems of support, and becoming an autonomous adult. They remain committed to their hopes and desires and refuse to be ‘held back’. The improved understanding of these experiences can be applied to future practice that eases the process of transition, provides appropriate support, and identifies areas for further qualitative research." @default.
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• W4381190300 date "2023-06-19" @default.
• W4381190300 modified "2023-09-27" @default.
• W4381190300 title "206 ‘Don’t let it hold you back’: the experience of transition to adulthood in young people with primary ciliary dyskinesia" @default.
• W4381190300 doi "https://doi.org/10.1136/archdischild-2023-rcpch.327" @default.
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