Navigating family life with Hypoplastic Left Heart Syndrome: A qualitative study.

PLOS mental health Pub Date : 2024-01-01 Epub Date: 2024-12-20 DOI:10.1371/journal.pmen.0000208
Michael D Green, Alejandra Prevost-Reilly, Devin M Parker, Elizabeth Carpenter-Song
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Abstract

Hypoplastic Left Heart Syndrome (HLHS) is a critical congenital heart abnormality that, prior to 1980, offered no treatment options beyond comfort care. Surgical advancements have since transformed the prognosis, yet the lived experience of affected families remains complex and multifaceted. This study aims to elucidate the psychosocial challenges accompanying the biomedical management of HLHS, exploring both family and provider perspectives to identify opportunities for more holistic care. We conducted semi-structured interviews with five families and two healthcare providers involved in HLHS management a New England health system. Interview transcripts were analyzed inductively to identify emergent themes, with a focus on the lived experience of families and the perceived role of providers in influencing this experience. Our study illuminates the extensive psychosocial challenges and emotional distress encountered by families dealing with HLHS, indicating a disparity between the advanced biomedical treatments available and the broader, more integrative care needs of patients. Despite healthcare professionals' technical proficiency, there exists a pivotal need for empathetic engagement and support that encompasses the full scope of the patient and family experience. Our findings advocate for an integrated care model that incorporates George Engel's biopsychosocial aspects of health, aligning with the emotional and psychological needs of families. The study underscores the importance of socially conscious care and suggests that enhancing empathetic communication and support in clinical practice can improve both patient outcomes and family well-being in the context of chronic and complex conditions like HLHS.

左心发育不全综合症患者的家庭生活:一项定性研究。
左心发育不全综合征(HLHS)是一种严重的先天性心脏异常,在1980年之前,除了舒适护理之外没有其他治疗选择。外科手术的进步已经改变了预后,但受影响家庭的生活经历仍然复杂而多方面。本研究旨在阐明伴随HLHS生物医学管理的社会心理挑战,探索家庭和提供者的观点,以确定更全面的护理机会。我们对新英格兰卫生系统中涉及HLHS管理的五个家庭和两个医疗保健提供者进行了半结构化访谈。对访谈记录进行归纳分析,以确定紧急主题,重点关注家庭的生活经验和提供者在影响这种经验方面的感知作用。我们的研究揭示了治疗HLHS的家庭所遇到的广泛的社会心理挑战和情绪困扰,表明了先进的生物医学治疗与患者更广泛、更综合的护理需求之间的差距。尽管医疗保健专业人员的技术熟练,但仍然存在对移情参与和支持的关键需求,包括患者和家庭经验的全部范围。我们的研究结果提倡一种综合护理模式,该模式结合了乔治·恩格尔的健康的生物心理社会方面,与家庭的情感和心理需求保持一致。该研究强调了社会意识护理的重要性,并建议在临床实践中加强移情沟通和支持,可以改善慢性和复杂疾病(如HLHS)的患者结果和家庭福祉。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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