Understanding frailty in adolescents with congenital heart disease: A dyadic phenomenological study

Adolescents with congenital heart disease (CHD) face multifaceted challenges that may impair development and quality of life, raising concerns about frailty. However, the impact of frailty on their daily functioning remains unclear. This study aimed to understand how adolescents with CHD experience frailty and how their primary caregivers perceive it.

A descriptive phenomenological study was conducted using semi-structured interviews with 20 adolescent-caregiver dyads recruited from two medical centers in Taiwan. Adolescents aged 12-18 years with a CHD diagnosis were classified as prefrail or frail based on Fried's frailty criteria. Data were collected between September and October 2023 and analyzed using Colaizzi's method.

Six key themes emerged: accumulating physical burden with growth, consequences of energy depletion in daily life, facing unavoidable judgment while striving for normalcy, social disconnection shaped by fatigue and peer perception, adaptive strategies for energy conservation, and supportive relationships enabling emotional growth and autonomy.

Frailty in adolescents with CHD affects not only physical health but also identity, autonomy, and social inclusion, highlighting the need for developmentally responsive, relationship-based care.

Nurses play a key role in early detection and coordinated support, emphasizing the importance of age-appropriate assessments and personalized interventions to promote long-term well-being. These findings underscore the value of frailty-informed care in pediatric cardiology and adolescent health nursing.