Barriers to care for chronically ill vulnerable children

照顾患有慢性病的弱势儿童的障碍

• 批准号: 6480945
• 负责人: MICHAEL SEID
• 金额: $ 9.9万
• 依托单位: RADY CHILDREN'S HOSPITAL - SAN DIEGO
• 依托单位国家: 美国
• 财政年份: 2002
• 资助国家: 美国
• 起止时间: 2002-03-01 至 2004-02-28
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6480945
• 关键词: child (0-11); children; health care quality; health care service availability; health care service evaluation; health care service utilization; human subject; interview; pediatrics; quality of life; questionnaires; racial /ethnic difference

DESCRIPTION (APPLICATION ABSTRACT): Timely receipt of quality health care is important to the health of America?s children and even more so for children with special needs (CSHCN). However, for children in general and for CSHCN, disparities across vulnerability factors, such as race/ethnicity, SES, and language ability exist in relation to health care access, utilization, experiences, and outcomes. Our conceptual model posits that 1) vulnerability factors are associated with barriers to care, 2) these barriers to care affect access to, use of, and experiences of care, and 3) these barriers to care explain part of the observed health disparities. Developing a measure of barriers to care is a first step in testing this model. The main objective of the proposed research is to identify and measure modifiable barriers to care that affect the link between vulnerability factors, on the one hand, and health care structures, processes, and outcomes for CSHCN on the other. The specific aim of the proposed research is to develop and test a barriers to care questionnaire in English and Spanish. This will be accomplished using focus groups, cognitive interviews, and field testing in an existing sample of vulnerable CSHCN. The proposed research contributes new knowledge, specifically in the conceptualization and operationalization of the construct of barriers to care. Previous research has tended to view barriers to care as unidimensional, has tended to focus on barriers? impact on only one aspect of the health care process, and has tended to view SES and race/ethnicity as explanatory variables. The conceptualization of barriers to care as a multidimensional construct, as potentially impacting children?s health care at several points in the care process, and as distinct from, yet related to SES and race/ethnicity engenders a more robust, practical, and actionable understanding of the construct of barriers to care. A practical, reliable, and valid measure of barriers to care will be useful to many stakeholders in pediatric health care. Such a measure will support consumer choice by giving voice to patients? and parents? experiences with the care system. It will enhance accountability by giving providers and policymakers a tool for comparison and benchmarking. It will spur quality improvement by providing researchers and health care decision-makers a foundation for developing empirically-based interventions to improve the HRQL of vulnerable children. In this way, the proposed research could play a part in contributing to the nation?s goal of eliminating health disparities as described in the Public Health Service?s Healthy People 2010.

描述（应用摘要）：及时获得优质医疗保健是 对美国儿童的健康很重要，对儿童更是如此 有特殊需要 (CSHCN)。然而，对于一般儿童和 CSHCN 而言， 不同脆弱性因素之间的差异，例如种族/民族、社会经济地位和 语言能力与医疗保健的获取、利用、 经历和成果。我们的概念模型假设 1) 脆弱性 因素与护理障碍相关，2) 这些护理障碍影响 获得、使用和体验护理，以及 3) 这些护理障碍 解释部分观察到的健康差异。制定一项措施 护理障碍是测试该模型的第一步。主要目标 拟议的研究旨在识别和衡量可改变的护理障碍 一方面影响脆弱性因素之间的联系，另一方面 另一方面是 CSHCN 的医疗保健结构、流程和结果。这 拟议研究的具体目的是开发和测试障碍 英语和西班牙语的护理调查问卷。这将通过使用来完成 焦点小组、认知访谈和现有样本的现场测试 易受攻击的 CSHCN。拟议的研究贡献了新知识， 特别是在结构的概念化和操作化方面 护理障碍。先前的研究倾向于将护理障碍视为 单维，是否倾向于关注壁垒？仅影响某一方面 医疗保健过程，并倾向于将社会经济地位和种族/族裔视为 解释变量。将护理障碍概念化为 多维结构，可能影响儿童的医疗保健 护理过程中的几个要点，与 SES 和种族/族裔不同但又相关，从而产生了更稳健、实用和可操作的方案 了解护理障碍的构成。一个实用、可靠、 有效衡量护理障碍对于许多利益相关者来说是有用的 儿科保健。此类措施将通过给予消费者选择来支持 向患者发出声音？和父母？护理系统的经验。它将 通过为提供者和政策制定者提供一个工具来加强问责制 比较和基准测试。它将通过提供 研究人员和医疗保健决策者是发展的基础 基于经验的干预措施，以提高弱势儿童的 HRQL。 通过这种方式，拟议的研究可以为促进 正如公众号中所述，国家消除健康差距的目标 2010 年卫生服务健康人。