Shapiro Miriam C, Detwiler Kathryn, Shepard Jennifer, Bernhard Talia, Li Xiaobai, Boss Renee D, Madrigal Vanessa N
Department of Pediatrics, University of Minnesota, Minneapolis, MN; Center for Bioethics, University of Minnesota, Minneapolis, MN.
Department of Pediatrics, Children's National Hospital, Washington, DC.
J Pediatr. 2025 Apr;279:114478. doi: 10.1016/j.jpeds.2025.114478. Epub 2025 Jan 27.
To understand parents' experiences of ethical challenges in the care of children with chronic and serious medical conditions and what resources they access for support.
We recruited English-speaking parents of children with complex and serious medical conditions via family advocacy groups to complete an electronic survey from October 2022 through February 2023. We queried respondents' experiences with specific ethical challenges in the care of their child, whether their concerns persisted, and what resources they accessed. Respondents also reported demographics, educational backgrounds, financial resources, and their child's medical needs.
Two hundred eighteen parents completed surveys. Parents reported experiencing each of the 15 presented ethical challenges with varying frequency. More than half of parents reported residual distress in 6 of 15 ethical challenges. Demographic variables (gender, relationship status, time since medical challenge, and ethnicity) were not associated with level of distress related to ethical challenges. When facing challenges, respondents most commonly communicated with family members, friends, doctors, and other parents of children with medical problems, accessed the internet, and relied on their instincts or prayer/meditation.
Parents of children with medical complexity experience ethical challenges in the care of their children, although covering a broader range of experiences than typically considered by clinicians to have ethical dimensions. Many of these challenges leave residual distress. The resources that families report accessing to navigate these challenges are ones that typically do not have training, background, or specificity to medical ethics.
了解父母在照顾患有慢性和严重疾病儿童时面临的伦理挑战经历，以及他们获取哪些资源以获得支持。
我们通过家庭倡导组织招募了患有复杂和严重疾病儿童的英语家长，让他们在2022年10月至2023年2月期间完成一项电子调查。我们询问了受访者在照顾孩子时面临的特定伦理挑战的经历、他们的担忧是否持续存在以及他们获取了哪些资源。受访者还报告了人口统计学信息、教育背景、财务资源以及孩子的医疗需求。
218名家长完成了调查。家长们报告称，他们经历了所提出的15项伦理挑战中的每一项，频率各不相同。超过一半的家长报告称，在15项伦理挑战中的6项中存在残留困扰。人口统计学变量（性别、关系状况、医疗挑战后的时间以及种族）与伦理挑战相关的困扰程度无关。面对挑战时，受访者最常与家庭成员、朋友、医生以及其他有医疗问题孩子的家长交流，上网查询，并依靠直觉或祈祷/冥想。
患有复杂疾病儿童的家长在照顾孩子时会经历伦理挑战，尽管其涵盖的经历范围比临床医生通常认为具有伦理层面的范围更广。许多这些挑战会留下残留困扰。家庭报告获取的用于应对这些挑战的资源通常没有医学伦理方面的培训、背景或针对性。
