Abstract：
BACKGROUND: End-stage liver disease (ESLD) presents a multifaceted challenge that encompasses not only physical but also emotional, psychological, and social dimensions. This study aims to explore the experiences of ESLD patients within the United States healthcare system.
METHODS: Utilizing a convenience sampling methodology, 15 ESLD patients from a tertiary care hospital in the USA participated in semi-structured interviews between April 2023 and January 2024. Data analysis was conducted using MAXQDA 2023, employing a phenomenological approach to identify common themes.
RESULTS: The study identified six primary themes: the significance of communication style in diagnosis delivery, the crucial role of family and social support, varied understanding and preferences for palliative care, diverse attitudes towards advanced care planning, preferences for coordinated healthcare experiences, and the emotional and psychological impact of ESLD.
CONCLUSIONS: Our study underscores the complexity of ESLD patient care beyond medical treatment, highlighting the importance of clear communication, empathetic care, and the integration of family and palliative care services.
METHODS: Utilizing a convenience sampling methodology, 15 ESLD patients from a tertiary care hospital in the USA participated in semi-structured interviews between April 2023 and January 2024. Data analysis was conducted using MAXQDA 2023, employing a phenomenological approach to identify common themes.
RESULTS: The study identified six primary themes: the significance of communication style in diagnosis delivery, the crucial role of family and social support, varied understanding and preferences for palliative care, diverse attitudes towards advanced care planning, preferences for coordinated healthcare experiences, and the emotional and psychological impact of ESLD.
CONCLUSIONS: Our study underscores the complexity of ESLD patient care beyond medical treatment, highlighting the importance of clear communication, empathetic care, and the integration of family and palliative care services.
摘要：
背景：终末期肝病（ESLD）提出了一个多方面的挑战，不仅包括身体，而且还包括情感，心理,和社会维度。本研究旨在探索美国医疗保健系统中ESLD患者的经验。
方法：利用方便的抽样方法，在2023年4月至2024年1月之间，来自美国三级医院的15名ESLD患者参加了半结构化访谈。数据分析使用MAXQDA2023进行，采用现象学方法确定共同主题。
结果：该研究确定了六个主要主题：沟通风格在诊断交付中的重要性，家庭和社会支持的关键作用，对姑息治疗的不同理解和偏好，对高级护理计划的不同态度，对协调医疗保健体验的偏好，以及ESLD的情绪和心理影响。
结论：我们的研究强调了药物治疗以外的ESLD患者护理的复杂性，强调明确沟通的重要性，移情护理，以及家庭和姑息治疗服务的整合。
方法：利用方便的抽样方法，在2023年4月至2024年1月之间，来自美国三级医院的15名ESLD患者参加了半结构化访谈。数据分析使用MAXQDA2023进行，采用现象学方法确定共同主题。
结果：该研究确定了六个主要主题：沟通风格在诊断交付中的重要性，家庭和社会支持的关键作用，对姑息治疗的不同理解和偏好，对高级护理计划的不同态度，对协调医疗保健体验的偏好，以及ESLD的情绪和心理影响。
结论：我们的研究强调了药物治疗以外的ESLD患者护理的复杂性，强调明确沟通的重要性，移情护理，以及家庭和姑息治疗服务的整合。
