Key result
Adolescents and young adults with heart failure generally perceived their illness experience more positively and as less burdensome than their caregivers, demonstrating resilience through optimism and gratitude.
Why the study?
Despite advances in treatment and outcomes for paediatric heart failure, both physical and psychosocial comorbidities remain notable among this patient population.
Observational (n=30)
No
Adolescents and young adults with heart failure often perceive their illness less negatively than their caregivers and demonstrate significant resilience, highlighting the importance of fostering positive coping strategies in this population.
Answers are grounded in this paper and cite their sources.
May guide resilience-focused counseling in young HF patients; hypothesis-generating for family-centered interventions.
BACKGROUND AND OBJECTIVES: Despite advances in treatment and outcomes for paediatric heart failure, both physical and psychosocial comorbidities remain notable among this patient population. We aimed to qualitatively describe the psychosocial experiences of adolescent and young adults with heart failure and their caregivers' perceptions, with specific focus on personal challenges, worries, coping skills, and resilience. METHODS: Structured, in-depth interviews were performed with 16 adolescent and young adults with heart failure and 14 of their caregivers. Interviews were recorded and transcribed. Content analysis was performed, and themes were generated. Transcripts were coded by independent reviewers. RESULTS: Ten (63%) adolescent and young adults with heart failure identified as male and six (37.5%) patients self-identified with a racial or ethnic minority group. Adolescent and young adults with heart failure generally perceived their overall illness experience more positively and less burdensome than their caregivers. Some adolescent and young adults noted specific worries related to surgeries, admissions, major complications, death, and prognostic/treatment uncertainty, while caregivers perceived their adolescent and young adult's greatest worries to be around major complications and death. Adolescent and young adults and their caregivers were able to define and reflect on adolescent and young adult experiences of resilience, with many adolescent and young adults expressing a sense of optimism and gratitude as it relates to their medical journey. CONCLUSIONS: This study is the first of its kind to qualitatively describe the psychosocial experiences of a racially and socioeconomically diverse sample of adolescent and young adults with heart failure, as well as their caregivers' perceptions of patient experiences. Findings underscore the importance of identifying distress and fostering resilient processes and outcomes in young people with advanced heart disease.
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Glenn et al. (2024) conducted an observational in Heart failure (n=30). Living with heart failure was evaluated on Psychosocial experiences, worries, coping skills, and resilience. Adolescents and young adults with heart failure generally perceived their illness experience more positively and as less burdensome than their caregivers, demonstrating resilience through optimism and gratitude.
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