Understanding youth experiences with chronic illness at a safety net hospital: Challenges,coping,and resilience

Abstract

This study examined the lived experiences of adolescents and young adults (AYA) with chronic illnesses at a safety net hospital, with nearly 90% identifying as ethnically and racially minoritized. Interviews were conducted with patients (N = 19) aged 16–20 years old, who are living with at least one chronic illness. Interviews were coded and analyzed using thematic analysis. Four themes captured the impact of illness and resilience processes: (1) My Condition Affects My Body, (2) My Condition Restricts My Life, (3) My Condition Impacts My Emotional Well-Being, and (4) I Can Still Be Healthy. Themes were verified through a Community Advisory Board of AYA with chronic illness. Participants described how symptoms, side effects, and restrictions negatively impact their physical and emotional well-being. Despite challenges, AYA demonstrated resilience through individualized, trial-and-error coping strategies that buffered illness-related distress. These findings underscore the importance of culturally responsive, developmentally appropriate interventions to support the well-being of minoritized AYA with chronic illness.