J Health Care Poor Underserved. 2022;33(4):1925-1948. doi: 10.1353/hpu.2022.0146.
To explore parent perspectives on barriers, facilitators, and priorities related to coordinating care for children and youth with special health care needs (CYSHCN).
Thirty-nine parents of Medicaid-eligible CYSHCN participated in focus groups and completed a brief survey about their child's health insurance coverage, access to specialized services, and need for support with service coordination. Survey data were analyzed using descriptive statistics. Focus group data were analyzed by multiple independent coders using an approach that combines inductive reasoning with predetermined coding strategies.
Sixty-seven percent of parents reported that they needed care coordination support. Qualitative data were organized into three main themes: the work of caregiving; the impact of caregiving on multiple aspects of parents' lives; and caregivers' needs related to emotional acceptance, service referrals and navigation, and developmental transitions.
Findings support importance of services such as medical homes, care coordinators, peer navigators, respite care, and transition planning.
探讨父母对协调有特殊医疗需求的儿童和青少年（CYSHCN）的护理相关障碍、促进因素和重点的看法。
39 名符合医疗补助条件的 CYSHCN 的父母参加了焦点小组，并完成了一份关于他们孩子的健康保险覆盖范围、获得专门服务的机会以及对服务协调支持的需求的简短调查。使用描述性统计分析调查数据。使用一种结合归纳推理和预定编码策略的方法，对焦点小组数据进行了多位独立编码员的分析。
67%的父母报告说他们需要护理协调支持。定性数据被组织成三个主要主题：照顾工作；照顾对父母生活多个方面的影响；以及与情感接受、服务推荐和导航以及发展过渡相关的照顾者需求。
研究结果支持医疗之家、护理协调员、同行导航员、暂息护理和过渡规划等服务的重要性。
