Division of Pediatric Critical Care, University of Mississippi Medical Center, Jackson, MS.
Center for Bioethics and Medical Humanities, University of Mississippi Medical Center, Jackson, MS.
Pediatr Crit Care Med. 2020 Aug;21(8):e530-e537. doi: 10.1097/PCC.0000000000002344.
An increasing number of children with medical complexity spend months or more in PICUs, lending to isolation for their parents and providers. We sought to better describe the experiences of parents and providers of children with chronic critical illness specifically around isolation during PICU admission.
In-person interviews and surveys of pediatric critical care providers and parents of children with chronic critical illness. Interview transcripts were analyzed for themes.
Academic institution; PICU.
Seven PICU physicians, eight nurse practitioners, and 12 parents of children with chronic critical illness.
Surveys and semi-structured interviews.
PICU providers acknowledge feeling medically isolated from children with chronic critical illness, fueled by a lack of chronic critical illness training and burnout. Providers also perceive medical isolation in parents of children with chronic critical illness manifesting as a declining level of parental engagement. Parents did not feel medically isolated in our study. Providers also perceive social isolation in families of children with chronic critical illness, identifying the child's protracted disease and lack of tangible support systems as contributing factors. Parents self-reported adequate social supports but scored high on depression scales suggesting a disconnect between perceived and actual support. Both parents and providers acknowledge that the child's chronic critical illness could be a source of support.
PICU providers perceived social and medical isolation in parents of children with chronic critical illness; however, parents did not endorse either directly. A majority of parents showed signs of depression despite reporting good social support. Providers reported feeling medically isolated from children with chronic critical illness and their families related to burnout and insufficient training. Novel methods to address these issues are needed.
越来越多患有复杂疾病的儿童在 PICU 中度过数月甚至更长时间，这导致他们的父母和医护人员感到孤立。我们试图更详细地描述慢性危重病儿童的父母和医护人员在 PICU 住院期间的孤立感。
对儿科危重病医护人员和慢性危重病儿童的父母进行实地访谈和调查。对访谈记录进行主题分析。
学术机构；PICU。
7 名 PICU 医生、8 名护士从业者和 12 名慢性危重病儿童的父母。
问卷调查和半结构化访谈。
PICU 医护人员承认对慢性危重病儿童感到医学上孤立，这是由于缺乏慢性危重病培训和职业倦怠所致。医护人员还认为慢性危重病儿童的父母存在医学上的孤立，表现为父母参与度下降。在我们的研究中，父母并没有感到医学上的孤立。医护人员还认为慢性危重病儿童的家庭存在社会孤立，他们认为孩子的疾病持续时间长且缺乏有形的支持系统是造成这种情况的原因。父母自我报告的社会支持充足，但抑郁量表评分较高，这表明他们对实际支持的认知与实际支持之间存在脱节。父母和医护人员都认为孩子的慢性危重病可能是一种支持来源。
PICU 医护人员认为慢性危重病儿童的父母存在社会和医学上的孤立，但父母并未直接认可这一点。尽管大多数父母报告了良好的社会支持，但他们仍表现出抑郁的迹象。医护人员报告说，他们对患有慢性危重病的儿童及其家庭感到医学上的孤立，这与职业倦怠和培训不足有关。需要新的方法来解决这些问题。
