PDF(Pubmed)
Abstract：
Background The lifetime journey of patients with single-ventricle congenital heart disease is characterized by long-term challenges that are incompletely understood and still unfolding. Health care redesign requires a thorough understanding of this journey to create and implement solutions that improve outcomes. This study maps the lifetime journey of individuals with single-ventricle congenital heart disease and their families, identifies the most meaningful outcomes to them, and defines significant challenges in the journey. Methods and Results This qualitative research study involved experience group sessions and 1:1 interviews of patients, parents, siblings, partners, and stakeholders. Journey maps were created. The most meaningful outcomes to patients and parents and significant gaps in care were identified across the life journey. A total of 142 participants from 79 families and 28 stakeholders were included. Lifelong and life-stage specific journey maps were created. The most meaningful outcomes to patients and parents were identified and categorized using a \"capability (doing the things in life you want to), comfort (experience of physical/emotional pain/distress), and calm (experiencing health care with the least impact on daily life)\" framework. Gaps in care were identified and classified into areas of ineffective communication, lack of seamless transitions, lack of comprehensive support, structural deficiencies, and insufficient education. Conclusions There are significant gaps in care during the lifelong journey of individuals with single-ventricle congenital heart disease and their families. A thorough understanding of this journey is a critical first step in developing initiatives to redesign care around their needs and priorities. This approach can be used for people with other forms of congenital heart disease and other chronic conditions. Registration URL: https://www.clinicaltrials.gov; Unique identifier: NCT04613934.
摘要：
背景单心室先天性心脏病患者的终生旅程的特征是长期的挑战，这些挑战尚未完全理解并且仍在继续。医疗保健的重新设计需要对这一旅程有透彻的了解，以创建和实施改善结果的解决方案。这项研究绘制了单心室先天性心脏病患者及其家人的一生历程，确定对他们最有意义的结果，并定义了旅程中的重大挑战。方法和结果这项定性研究涉及体验小组会议和对患者的1：1访谈，父母,兄弟姐妹,合作伙伴,和利益相关者。创建了旅行地图。在整个人生旅程中，确定了对患者和父母最有意义的结果以及护理方面的重大差距。共有来自79个家庭和28个利益相关者的142名参与者参加。创建了终身和特定于生命阶段的旅程地图。对患者和父母最有意义的结果被确定并使用“能力”进行分类（做生活中你想做的事情），舒适（身体/情感痛苦/痛苦的体验），和平静(体验对日常生活影响最小的医疗保健)“框架”。确定了护理差距，并将其分类为无效沟通的领域，缺乏无缝过渡，缺乏全面的支持，结构性缺陷，教育不足。结论单心室先天性心脏病患者及其家庭在终身旅程中的护理存在显著差距。对这一旅程的透彻了解是制定计划以围绕其需求和优先事项重新设计护理的关键的第一步。这种方法可用于患有其他形式的先天性心脏病和其他慢性疾病的人。注册网址：https://www。clinicaltrials.gov；唯一标识符：NCT04613934。
