父母对小儿晚期癌症中父母和儿童报告结果的看法：一项定性研究
Parent Views on Parent and Child-reported Outcomes in Pediatric Advanced Cancer: A Qualitative Study
影响因子:3.50000
分区:医学2区 / 临床神经病学2区 卫生保健与服务2区 医学：内科2区
发表日期:2025 Feb
作者:
Deborah Feifer, Alexandra F Merz, Madeline Avery, Erika Tsuchiyose, Ijeoma J Eche-Ugwu, Opeyemi Awofeso, Joanne Wolfe, Veronica Dussel, Maria Laura Requena
摘要
关于同时父母和患者报告的结果的研究主要集中在达成协议上。然而，关于如何解释和解决这两个观点之间并不罕见的差异知之甚少。探索父母在小儿晚期癌症的情况下同时与孩子同时报告有关儿童症状和生活质量（QOL）的观点。在Pediquest Respectiation研究中，该定性研究在Pediquest Respection研究中嵌入了一个随机的对照癌症的癌症。在18周的时间里，研究二元组（≥5岁的儿童和一个父母）每周完成E-Pros评估症状和QOL。使用扎根的理论方法，我们对学习终止半结构化父母访谈进行了二次分析，以研究他们对症状的并发报告的看法。此分析中包括的110个随机二元组，有77个父母完成了退出访谈。大多数是白人非西班牙裔母亲。以下主题总结了对儿童症状和QOL的并发报告的父母思考：症状经验是主观的，父母和子女的观点是独一无二的，父母在适应儿童治疗时提出了更少的问题，孩子可能会犹豫分享症状。为了更好地掌握孩子的经验，父母制定了积极的沟通策略。直接浏览的父母承认，父母的报告和孩子的自我报告是截然不同且互补的。他们的观点为临床医生和研究人员提供了有关在小儿晚期癌症护理中的实施和解释的实施和解释。GOVNCT03408314。
Abstract
Research on concurrent parent and patient-reported outcomes has primarily focused on reaching agreement. However, little is known about how to interpret and address discrepancies, which are not uncommon, between both viewpoints.To explore parents' perspectives on reporting about child symptoms and quality of life (QoL) concurrently with their child in the context of pediatric advanced cancer.This qualitative study was embedded in the PediQUEST Response Study, a randomized controlled trial of timely palliative care integration in children with advanced cancer. Over 18 weeks, study dyads (children ≥5 years old and one parent) completed weekly e-PROs assessing symptoms and QoL. Using a grounded theory approach, we ran a secondary analysis of end-of-study semi-structured parent interviews to examine their views on concurrent reporting of symptoms.Out of 110 randomized dyads included in this analysis, 77 parents completed an exit interview. Most were White non-Hispanic mothers. Parent reflections on concurrent reporting of child symptoms and QoL are summarized in the following themes: symptom experience is subjective, parent and child viewpoints are unique, parents ask fewer questions as they adapt to child treatment, and children may hesitate to share symptoms. To better grasp their child's experience, parents developed proactive communication strategies.Interviewed parents acknowledged that parent report and child self-report are distinct and complementary. Their perspectives provide guidance to clinicians and researchers about the implementation and interpretation of concurrent outcomes measurement in pediatric advanced cancer care.gov NCT03408314.