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残疾儿童母亲的护理协调经历:一项定性研究。

Mothers' Experiences of Care Coordination for Children with Disabilities: A Qualitative Study.

作者信息

Matsuzawa Akemi, Shiroki Yuko

机构信息

Department of Comprehensive Development Nursing, Graduate School of Health Sciences and Faculty of Medicine, Hokkaido University, Sapporo 060-0812, Hokkaido, Japan.

School of Nursing, Ibaraki Christian University, Hitachi 319-1295, Ibaraki, Japan.

出版信息

Children (Basel). 2022 Jun 4;9(6):835. doi: 10.3390/children9060835.

Abstract

Few studies have investigated the care coordination for children with disabilities and their families in Japan. Care coordination enhances the quality of care for these children and their families. This study explores mothers' experiences of coordinated care provided to their children with disabilities and their families. We used a qualitative descriptive approach, conducting semi-structured interviews with 11 Japanese mothers/primary caregivers of children with disabilities to describe their experiences. Four main themes were identified: shared decision-making with key workers, receiving an assessment of the entire family, timely access to coordinated health care services, and a reduced psychological burden and empowerment of mothers. Our findings suggest that care coordination has multiple beneficial effects on children with disabilities and their families, including improving the outcomes. Further research should examine how high-quality care coordination can be provided for such children and their families.

摘要

在日本,很少有研究调查为残疾儿童及其家庭提供的护理协调情况。护理协调可提高这些儿童及其家庭的护理质量。本研究探讨了母亲们对于为其残疾子女及其家庭提供的协调护理的体验。我们采用定性描述方法,对11位日本残疾儿童的母亲/主要照顾者进行了半结构化访谈,以描述她们的经历。确定了四个主要主题:与关键工作人员共同决策、对整个家庭进行评估、及时获得协调的医疗服务,以及减轻母亲的心理负担并增强其权能。我们的研究结果表明,护理协调对残疾儿童及其家庭有多种有益影响,包括改善结果。进一步的研究应探讨如何为这类儿童及其家庭提供高质量的护理协调。

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