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Research update: Reflecting on the experience of entering adulthood with PCD

Apr 13, 2024

Research Update: Reflecting on the experience of moving from childhood to adulthood with PCD.

This project aimed to understand the experiences of young people with PCD as they entered adulthood.

Three young people aged between 18-24 with PCD were selected for an interview and analysed using a method called interpretative phenomenological analysis. This method explores and interprets the individual lived experiences for a small group of participants.

The research revealed three overarching shared experiences:

  1. Interviewees focused on the way that PCD affected how they saw themselves and how they were treated by others
  2. Interviewees demonstrated their efforts to seek support and knowledge from services and their social circles.
  3. Interviewees became increasingly able to manage their condition and make decisions about their life, despite uncertainty about a future with a long-term condition. 

Understanding this experience ensures that we can improve available programmes that help to support young people with PCD during this complex period of moving from childhood to adulthood with PCD. 

thank all those who gave up their time to speak to Rhys directly about their experiences. 

Rhys is a paediatric doctor in London and an academic clinical fellow at UCL. He is also a trustee for The McPin Foundation which champions the role of lived experiences in mental health research. He recently completed an MSc in Paediatrics and Child Health at UCL which was supported by the Michelle Zalkin Scholarship. He has particular interests in children and young people's health, rare diseases, and genetics.