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Children with medical complexities: Addressing the gaps in respite care during transition from paediatrics to adult health care in Ontario.患有复杂疾病的儿童：解决安大略省从儿科向成人医疗保健过渡期间喘息护理方面的差距。
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A quality improvement evaluation of a standardized intervention for children with medical complexity transitioning to adult care.对患有复杂疾病的儿童向成人护理过渡的标准化干预措施的质量改进评估。
Paediatr Child Health. 2024 Jun 19;29(5):274-279. doi: 10.1093/pch/pxae027. eCollection 2024 Aug.
2
Identifying children with medical complexity in administrative datasets in a Canadian context: study protocol.在加拿大语境下，利用行政数据集识别具有医疗复杂性的儿童：研究方案。
BMJ Open. 2022 Mar 18;12(3):e057843. doi: 10.1136/bmjopen-2021-057843.
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Perceived Versus Demonstrated Understanding of the Complex Medications of Medically Complex Children.对患有复杂疾病儿童复杂药物的认知理解与实际表现出的理解情况对比
J Pediatr Pharmacol Ther. 2021;26(1):62-72. doi: 10.5863/1551-6776-26.1.62. Epub 2021 Jan 4.

本文引用的文献

1
Children with medical complexity: a scoping review of interventions to support caregiver stress.患有复杂疾病的儿童：支持照顾者压力的干预措施的范围综述
Child Care Health Dev. 2017 May;43(3):323-333. doi: 10.1111/cch.12430. Epub 2016 Nov 29.
2
Measuring the "triple aim" in transition care: a systematic review.衡量过渡护理中的“三重目标”：一项系统综述。
Pediatrics. 2014 Dec;134(6):e1648-61. doi: 10.1542/peds.2014-1704.
3
Promoting independence for children on long-term ventilation.
Nurs Child Young People. 2011 Dec;23(10):20-2. doi: 10.7748/ncyp2011.12.23.10.20.c8834.
4
Children with medical complexity: an emerging population for clinical and research initiatives.患有复杂疾病的儿童：临床和研究倡议的新兴人群。
Pediatrics. 2011 Mar;127(3):529-38. doi: 10.1542/peds.2010-0910. Epub 2011 Feb 21.
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Family needs of parents of children and youth with cerebral palsy.脑瘫患儿及青少年家长的家庭需求。
Child Care Health Dev. 2010 Jan;36(1):85-92. doi: 10.1111/j.1365-2214.2009.01030.x. Epub 2009 Nov 30.
6
'Jumping through hoops': parents' experiences with seeking respite care for children with special needs.“费尽周折”：父母为有特殊需求的孩子寻求临时护理的经历。
Child Care Health Dev. 2009 Mar;35(2):234-42. doi: 10.1111/j.1365-2214.2008.00922.x.
7
Transition to adult care for youth with special health care needs.有特殊医疗需求的青少年向成人护理的过渡。
Paediatr Child Health. 2007 Nov;12(9):785-93. doi: 10.1093/pch/12.9.785.
8
Different meanings of respite: a study of parents, nurses and social workers caring for children with complex needs.“喘息”的不同含义：一项针对照顾有复杂需求儿童的父母、护士和社会工作者的研究。
Child Care Health Dev. 2004 May;30(3):279-88; discussion 289. doi: 10.1111/j.1365-2214.2004.00392.x.
9
Frequency and determinants of formal respite service use among caregivers of children with cerebral palsy in Ontario.安大略省脑瘫患儿照料者使用正规临时护理服务的频率及影响因素
Child Care Health Dev. 2004 Jan;30(1):77-86. doi: 10.1111/j.1365-2214.2004.00391.x.
10
Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine.患有慢性病青少年从以儿童为中心的医疗体系向成人医疗体系的过渡。青少年医学协会立场文件。
J Adolesc Health. 1993 Nov;14(7):570-6. doi: 10.1016/1054-139x(93)90143-d.

患有复杂疾病的儿童：解决安大略省从儿科向成人医疗保健过渡期间喘息护理方面的差距。

Children with medical complexities: Addressing the gaps in respite care during transition from paediatrics to adult health care in Ontario.

作者信息

Porepa Michelle, Hoffman Andrea, Fellin Maryanne, Kublick Louise

机构信息

Department of Paediatrics, University of Toronto, Toronto, Ontario.

Division of Developmental Paediatrics, University of Toronto, Toronto, Ontario.

出版信息

Paediatr Child Health. 2017 Oct;22(7):369-371. doi: 10.1093/pch/pxx142. Epub 2017 Oct 6.

DOI:10.1093/pch/pxx142
PMID:29479250
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5804909/
Abstract

Respite care is one integral component of the transition process from paediatric to adult health care, and is of particular importance to individuals with medical complexities. Numerous gaps that exist within the current system limit a child and family's ability to access quality respite care during a time when it is often most needed. Identifying and addressing these gaps in a systematic and collaborative way presents an opportunity to improve the quality of life for this vulnerable, ever growing population and their families.

摘要

喘息护理是从儿科医疗向成人医疗过渡过程中不可或缺的一部分，对于病情复杂的个体尤为重要。当前体系中存在的诸多差距限制了儿童及其家庭在最需要的时候获得优质喘息护理的能力。以系统且协作的方式识别并解决这些差距，为改善这一脆弱且不断增长的人群及其家庭的生活质量提供了契机。