Divisions of Nephrology,
Bioethics and Palliative Care, Department of Pediatrics, School of Medicine, University of Washington, Seattle, Washington.
Pediatrics. 2019 Feb;143(2). doi: 10.1542/peds.2018-2102.
Pediatric dialysis is thought to be burdensome on caregivers given their need to assume dual responsibilities of parental and medical management of their child's chronic illness. In this study, we seek to describe the experience of parental caregivers of children receiving chronic dialysis for end-stage kidney disease.
We performed semistructured interviews of primary caregivers of children with end-stage kidney disease receiving chronic peritoneal dialysis or hemodialysis for at least 8 weeks from March 2016 to April 2017 at 3 pediatric dialysis centers in the United States. We performed a thematic analysis to inductively derive and identify themes and subthemes related to positive and negative caregiver experiences.
Thirty-five caregivers completed interviews. Four major themes were identified, each with several subthemes: (1) caregiver medicalization (subthemes: diagnosis and initiation, disease management, and the future), (2) emotional adjustment (initial and/or acute phase, acceptance, personal growth, and medical stress and psychological burden), (3) pragmatic adaptation (disruption, adaptation of life goals and/or sense of self, and financial impact), and (4) social adjustment (relationship opportunity, relationship risk, advocacy, family functioning, and intimate relationships). These themes and subthemes reflected a broad range of experiences from positive to severely burdensome.
Caregivers of patients on dialysis report a broad range of positive and burdensome experiences. These results reveal a need for continued advocacy to support families with a child on dialysis and can be used to develop targeted measures to study and improve caregiver experience in this population.
由于需要承担照顾者和患儿慢性疾病医疗管理的双重责任，儿科透析被认为会给照顾者带来负担。本研究旨在描述接受终末期肾病慢性透析治疗的儿童的父母照顾者的经历。
我们于 2016 年 3 月至 2017 年 4 月在美国 3 家儿科透析中心对接受慢性腹膜透析或血液透析治疗的终末期肾病儿童的主要照顾者进行了半结构式访谈，这些儿童接受治疗的时间至少为 8 周。我们采用主题分析法，对与照顾者积极和消极体验相关的主题和子主题进行归纳和识别。
35 名照顾者完成了访谈。确定了 4 个主要主题，每个主题都有几个子主题：（1）照顾者的医疗化（子主题：诊断和开始治疗、疾病管理和未来），（2）情绪调整（初始和/或急性阶段、接受、个人成长和医疗压力和心理负担），（3）实际适应（干扰、生活目标和/或自我认知的调整、经济影响）和（4）社会调整（关系机会、关系风险、倡导、家庭功能和亲密关系）。这些主题和子主题反映了从积极到非常负担沉重的广泛经历。
接受透析治疗的患者的照顾者报告了广泛的积极和负担沉重的经历。这些结果表明需要继续倡导，以支持有儿童接受透析治疗的家庭，并且可以利用这些结果来制定有针对性的措施，以研究和改善该人群的照顾者体验。
