ABSTRACT
Purpose: Adolescence is an inimitable stage of human development representing rapid musculoskeletal, social-emotional and neurocognitive growth. To grow and develop in optimal health, young people need information of relevance to support their engagement in meaningful healthcare and this is especially fundamental to outcomes associated with lung transplant in adolescence. Despite careful consideration of eligibility criteria prior to lung transplant, adolescent recipients have poorer overall length of survival when compared to other recipients. It is hypothesized, that healthcare systems which fail to incorporate developmental tenets of adolescence into their design and delivery may contribute to poor outcomes. The goal of this study was to explore the lived experiences of young lung transplant recipients aged 15-29 years and identify features of clinical care perceived as supportive and features perceived as lacking. What could the unique perspectives of recipients themselves add to a contemporary treatment paradigm to support targeted healthcare and address current morbidity statistics? Methods: This study is an exploratory qualitative design using photo elicitation of everyday activities and in-depth one-on-one semi structured interviews. Interviews were audio recorded and transcribed for thematic analysis using the qualitative data analysis software NVivo. A purposive sample of 16 lung transplant recipients, transplanted prior to 25 years of age was identified and recruited from a national database. Results: Themes that emerged from interviews included: general satisfaction with daily routines and lifestyle choices: challenges adjusting without support to medication and lifestyle needs;importance of communication and mutual respect throughout all stages of transplant;and the impact of COVID-19 upon daily life. Overall, young persons expressed satisfaction with the life they were living and healthcare processes experienced. Conclusion: Themes generated from this study reflect the voices of young people and their identification of the need for: developmentally targeted education;the importance of individuated and collaborative program delivery;and support to learn how to independently manage their own healthcare. In the delivery of effective healthcare, the voices of those for whom intervention is directed, are fundamental to engagement in their own care pathway.