School of Nursing, Ibaraki Christian University, Hitachi, Japan.
Department of Neonatology, Ibaraki Children's Hospital, Mito, Japan.
Child Care Health Dev. 2020 Jul;46(4):436-444. doi: 10.1111/cch.12767. Epub 2020 Apr 23.
Little is known about the provision of care coordination to children with medical complexity (CMC) and their families in Japan. The aim of this study was to describe provision of care coordination and explore the factors associated with quality of care coordination for Japanese CMC and their families.
We used an exploratory cross-sectional study design. Participants were recruited at a children's hospital located in one prefecture, Japan. Primary caregivers raising children aged between <1 and 20 years and receiving reimbursements for their home-based medical care at a children's hospital were eligible to participants in this study. The study examined the relationship between parents' ratings of care coordination as 'adequate,' 'inadequate' or 'not received' and characteristics of children, parents, and families.
Ninety-nine parents caring for CMC were included in the analysis. Of those, 22.2% reported their child had a care coordinator. Caregivers were divided into three groups depending on the quality of care coordination: Group 1 reported adequate care coordination; Group 2 reported inadequate care coordination; and Group 3 had no need for care coordination. We compared the socio-demographics of children, parents and families, their service use and the health-related quality of life (HR-QOL) and caregiver burden scores of parents across the three groups. The parents' free time, access to timely care for children and service satisfaction were positively associated with adequate care coordination for CMC and their families.
Providing adequate care coordination for CMC and their families is essential for access to timely services and more positive psychological health of parents. High quality care coordination for CMC and their families is urgently needed in Japan.
对于日本患有复杂疾病儿童（CMC）及其家庭的护理协调服务提供情况，目前知之甚少。本研究旨在描述护理协调服务的提供情况，并探讨与日本 CMC 及其家庭护理协调质量相关的因素。
我们采用探索性横断面研究设计。参与者在日本一个县的儿童医院招募。主要照顾者需满足以下条件：正在抚养年龄在 1 至 20 岁之间的儿童，且其在儿童医院接受的居家医疗护理可获得报销。本研究考察了父母对护理协调的评价（“充分”、“不充分”或“未获得”）与儿童、父母和家庭特征之间的关系。
共有 99 名照顾 CMC 的父母参与了分析。其中，22.2%的父母报告他们的孩子有护理协调员。根据护理协调质量，将照顾者分为三组：组 1 报告护理协调充分；组 2 报告护理协调不充分；组 3 不需要护理协调。我们比较了三组儿童、父母和家庭的社会人口统计学特征、服务使用情况以及与儿童健康相关的生活质量（HR-QOL）和父母的 caregiver负担评分。父母的闲暇时间、及时获得儿童护理的机会以及对服务的满意度与 CMC 及其家庭获得充分的护理协调呈正相关。
为 CMC 及其家庭提供充分的护理协调对于及时获得服务和父母心理健康更为积极至关重要。日本迫切需要为 CMC 及其家庭提供高质量的护理协调服务。
