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成人先天性心脏病中家庭照顾者的身体虚弱被忽视:行动呼吁。

Family caregiver frailty in adult congenital heart disease is overlooked: A call to action.

作者信息

Magon Arianna, Flocco Serena Francesca, Schianchi Laura, Chessa Massimo, Ciofi Daniele, Angileri Salvatore, De Maria Maddalena, Conte Gianluca, Favilli Silvia, Arrigoni Cristina, Caruso Rosario

机构信息

Health Professions Research and Development Unit, IRCCS Policlinico San Donato, San Donato Milanese, Italy.

Pediatric and Congenital Heart Disease Unit, IRCCS Policlinico San Donato, San Donato Milanese, Italy.

出版信息

Int J Cardiol Congenit Heart Dis. 2025 Jan 17;19:100567. doi: 10.1016/j.ijcchd.2025.100567. eCollection 2025 Mar.

Abstract

The frailty of family caregivers (FCs) of adults with congenital heart disease (CHD) is an underrecognized yet critical issue in healthcare. As individuals with CHD live longer, their FCs, often aging alongside them, face escalating physical, emotional, and psychological challenges. This brief report examines frailty in FCs as a multidimensional issue stemming from prolonged caregiving demands and cumulative stress. The evidence gathered in this regard identifies three key domains affecting FCs: psychological stress and childcare, physical health decline, and the challenges of caregiving during transitions to adulthood. These findings underscore the urgent need for family-centered care models that incorporate tailored frailty assessments and targeted interventions to support FCs throughout their caregiving journey. Addressing caregiver frailty could improve outcomes for both patients and caregivers, strengthen resilience, and optimize resource allocation. This perspective calls for immediate action in research and policy to prioritize caregiver well-being in transition care programs, enhancing the quality of life for both caregivers and patients.

摘要

先天性心脏病(CHD)成年患者的家庭照料者(FCs)的脆弱性是医疗保健中一个未得到充分认识但至关重要的问题。随着先天性心脏病患者寿命延长,他们的家庭照料者往往与他们一同变老,面临着日益增加的身体、情感和心理挑战。本简要报告将家庭照料者的脆弱性视为一个源于长期照料需求和累积压力的多维度问题进行研究。在这方面收集的证据确定了影响家庭照料者的三个关键领域:心理压力与儿童照料、身体健康下降以及向成年过渡期间的照料挑战。这些发现强调迫切需要以家庭为中心的护理模式,纳入量身定制的脆弱性评估和有针对性的干预措施,以在整个照料过程中支持家庭照料者。解决照料者的脆弱性问题可以改善患者和照料者的结局,增强恢复力,并优化资源分配。这一观点呼吁在研究和政策方面立即采取行动,在过渡护理计划中优先考虑照料者的福祉,提高照料者和患者的生活质量。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/f175/11788724/d81f237a4fbb/gr1.jpg

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