‘I really feel like I am ageing early’: an interpretative phenomenological analysis of the lived experience of young adults with life-limiting conditions (YALLC)

Abstract

ObjectivesThis study aims to explore the lived experience of young adults with life-limiting conditions (YALLC) and how they perceive and navigate adulthood, to identify challenges and opportunities for improved care and support.MethodsA qualitative study using interpretative phenomenological analysis to understand how young adults who survived childhood serious illness make sense of current circumstances. Seven YALLC with different diagnoses ranging from 19 to 39 years were recruited through purposive sampling in a specialist paediatric palliative care service/adult hospice. In-depth, semistructured interviews were conducted, and verbatim transcripts analysed iteratively.ResultsFour major themes emerged: (1) living with limitations and in limbo—compressed timelines and confusion, triggered by dissonance between age-expected versus developmentally appropriate aspirations and goals; (2) experiencing identity crises, confronting existential concerns and chasing the elusive goal of enduring connection—struggle between public versus self-identities, including issues around self-worth and purpose; (3) striving for autonomy while tolerating interdependence/codependence—tensions arising from their desire for independence against the need to rely on others and (4) accepting and appreciating LLC as integral to one’s existence—demonstrating adaptability, creativity and resilience. Themes highlight a complex interplay of push-pull factors encountered by YALLC at multiple levels as they strive for a normative or negotiated life course.ConclusionYALLC face an intricate web of physical, psychoemotional, social and financial challenges compounded by underlying, persistent or progressive illnesses. Contextual understanding and identified gaps from this study will guide affirmative strategies to improve quality of life among a growing cohort.