Definitions of resilience and resilience resource use as described by adults with congenital heart disease.
Definitions of resilience and resilience resource use as described by adults with congenital heart disease.
复制标题
先天性心脏病成人描述的复原力和复原力资源使用的定义。
DOI：
10.1016/j.ijcchd.2023.100447
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发表时间：
2023
期刊：
影响因子：
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通讯作者：
Rosenberg,AbbyR
中科院分区：
文献类型：
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作者：
Steiner,JillM;Blakeney,ErinAbu-Rish;Baden,AndreaCorage;Freeman,Vea;Yi-Frazier,Joyce;Curtis,JRandall;Engelberg,RuthA;Rosenberg,AbbyR
成人先天性心脏病(ACHD)是一种终生疾病，对生活质量构成持续挑战。培养个人复原力资源以维持幸福感，可以促进患者的心理社会健康。目的描述患者的复原力体验：他们在管理ACHD时如何理解、发展和利用复原力资源。参与者是通过最大变异抽样招募的。个人半结构化访谈于2020年6月至2021年8月进行。我们询问了应对ACHD相关压力的方法和复原力方面的经验，并通过主题分析分析了回应。结果参与者(N=2.25)中位年龄为32岁(范围22-44岁)；52%的人认为是女性，72%的人是非西班牙裔白人。受试者的解剖ACHD为中度(56%)或复杂(44%)；生理学上，76%为功能C或D级；参与者描述了各种韧性资源，这些资源映射到已建立的韧性框架：1)内部资源：保持积极、自我定向的活动和设定目标；2)外部资源：社会支持；3)生存资源：目的、感恩和培养健康。即使在报告不熟悉“恢复力”这个术语的参与者中(8/25)，所有参与者都分享了反映与ACHD生活在一起时形成的恢复力的经历。结论ACHD相关的恢复力资源可能有助于患者和临床医生应对与ACHD相关的压力，并促进心理社会健康。
Structured AbstractBackgroundAdult 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.ObjectiveWe aimed to describe patients’ resilience experiences: how they understand, develop, and utilize resilience resources in managing ACHD.MethodsWe 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.ResultsParticipant (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.ConclusionACHD-relevant resilience resources may help patients and clinicians navigate ACHD-related stress and promote psychosocial well-being.