Definitions of resilience and resilience resource use as described by adults with congenital heart disease

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. We aimed to describe patients’ resilience experiences: how they understand, develo...

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Bibliographic Details
Published in:International journal of cardiology congenital heart disease 2023-06, Vol.12, p.100447, Article 100447
Main Authors: Steiner, Jill M., Abu-Rish Blakeney, Erin, Corage Baden, Andrea, Freeman, Vea, Yi-Frazier, Joyce, Curtis, J. Randall, Engelberg, Ruth A., Rosenberg, Abby R.
Format: Article
Language:English
Subjects:
Adult congenital heart disease
Psychosocial
Qualitative
Resilience
Well-being
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Summary: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. We aimed to describe patients’ resilience experiences: how they understand, develop, and utilize resilience resources in managing ACHD. 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. 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. ACHD-relevant resilience resources may help patients and clinicians navigate ACHD-related stress and promote psychosocial well-being. [Display omitted]
ISSN:2666-6685
2666-6685
DOI:10.1016/j.ijcchd.2023.100447