Key result
Adults with ACHD universally utilize diverse resilience resources, notably social support, to manage illness-related stress.
Why the study?
Adult congenital heart disease presents ongoing challenges to quality of life, but how patients understand, develop, and utilize resilience resources to sustain well-being was not described.
Observational (n=25)
No
Adults with congenital heart disease utilize internal, external, and existential resilience resources to manage illness-related stress, which can be fostered to promote psychosocial well-being.
Answers are grounded in this paper and cite their sources.
Supports resilience assessment in ACHD care; leaves open whether fostering resources improves outcomes in larger studies.
Background: Adult congenital heart disease (ACHD) is a lifelong illness that presents ongoing challenges to quality of life. Fostering personal resilience resources to sustain well-being can enhance patients' psychosocial health. Objective: We aimed to describe patients' resilience experiences: how they understand, develop, and utilize resilience resources in managing ACHD. Methods: We conducted a qualitative study of patients with ACHD. Participants were recruited using maximum variation sampling. Individual, semi-structured interviews were conducted June 2020 to August 2021. We queried approaches to managing ACHD-related stress and experiences with resilience and analyzed responses with thematic analysis. Results: Participant (N = 25) median age was 32 years (range 22-44); 52% identified as female and 72% non-Hispanic white. Participants' anatomic ACHD was moderate (56%) or complex (44%); physiologically, 76% were functional class C or D. Participants described various resilience resources, which map to an established resilience framework: 1) internal resources: maintaining positivity, self-directed activity, and setting goals; 2) external resources: social support; 3) existential resources: purpose, gratitude, and cultivating health. Even among participants who reported feeling unfamiliar (8/25) with the term "resilience," all participants shared experiences reflecting resilience developed while living with ACHD. Conclusion: ACHD-relevant resilience resources may help patients and clinicians navigate ACHD-related stress and promote psychosocial well-being.
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Steiner et al. (2023) conducted an observational in Adult congenital heart disease (ACHD) (n=25). Living with moderate to severe adult congenital heart disease (ACHD) was evaluated on Qualitative descriptions of resilience definitions and utilization of resilience resources. Adults with congenital heart disease described utilizing internal, external, and existential resilience resources to manage stress, with 64% defining resilience.
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