Zurynski Yvonne, Hutchinson Karen, Kang Yilin, Vizheh Maryam, de Groot Anneliese
Australian Institute of Health Innovation, Macquarie University, Macquarie Park, New South Wales, Australia.
Faculty of Medicine, Health and Human Sciences, Macquarie University, Macquarie Park, New South Wales, Australia.
Child Care Health Dev. 2025 May;51(3):e70091. doi: 10.1111/cch.70091.
Children with medical complexity (CMC) frequently access multiple healthcare services across often fragmented systems. Paediatric integrated care models (PICMs) support health care coordination, but little is known about experiences and perceived benefits and barriers among CMC, parents or carers while accessing PICMs. This review addresses these knowledge gaps by synthesising current published evidence.
A scoping literature review based on searches of four databases: Medline, Embase, Scopus and CINAHL (2015-2024). Articles reporting on experiences of accessing PICMs by CMC aged < 19 years, their parents or carers were included. Data were extracted and thematically synthesised to describe experiences and perceived benefits and barriers.
The seven included papers reported on the experiences of parents (mostly mothers, 89%); only one paper included the views of CMC and siblings. All seven papers described the benefits of PICMs, including greater attention to individualised needs, smoother system navigation facilitated by care coordinators and improved communication and information sharing among care teams. Four papers reported barriers including limited understanding among parents and carers of care coordinator roles and processes and pathways of PICMs. Systemic barriers limited medical records sharing across providers and settings, and in two studies, parents raised this as a risk for care quality and safety for their CMC. Other systemic barriers identified by parents included a lack of stable funding for new models of care and difficulties linking PICMs with primary care, social care and education sectors.
The evidence on experiences, benefits and barriers of PICMs among CMC, families and carers is scarce, and the voices of CMC are largely absent. The greater involvement of CMC, their parents and carers in the design and ongoing evaluation of PICMs should be a priority to improve family-centred integrated care for CMC.
患有复杂疾病的儿童（CMC）经常在通常碎片化的系统中使用多种医疗服务。儿科综合护理模式（PICMs）有助于医疗协调，但对于CMC、其父母或照顾者在使用PICMs时的体验、感知到的益处和障碍知之甚少。本综述通过综合当前已发表的证据来填补这些知识空白。
基于对四个数据库（Medline、Embase、Scopus和CINAHL，2015 - 2024年）的检索进行范围综述。纳入报告19岁以下CMC、其父母或照顾者使用PICMs体验的文章。提取数据并进行主题综合，以描述体验以及感知到的益处和障碍。
纳入的七篇论文报告了父母（大多为母亲，占89%）的体验；仅有一篇论文纳入了CMC和兄弟姐妹的观点。所有七篇论文都描述了PICMs的益处，包括对个性化需求的更多关注、护理协调员促进更顺畅的系统导航以及护理团队之间改善的沟通和信息共享。四篇论文报告了障碍，包括父母和照顾者对护理协调员角色以及PICMs流程和途径的理解有限。系统性障碍限制了医疗记录在不同提供者和环境之间的共享，并且在两项研究中，父母将此视为其CMC护理质量和安全的风险。父母指出的其他系统性障碍包括新护理模式缺乏稳定资金以及将PICMs与初级保健、社会护理和教育部门联系起来存在困难。
关于CMC、家庭和照顾者使用PICMs的体验、益处和障碍的证据稀缺，且很大程度上没有CMC的声音。CMC、其父母和照顾者更多地参与PICMs的设计和持续评估应成为改善以家庭为中心的CMC综合护理的优先事项。
