School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
Ottawa, Ontario, Canada.
Health Expect. 2024 Feb;27(1):e13897. doi: 10.1111/hex.13897.
Children with chronic conditions have greater health care needs than the general paediatric population but may not receive care that centres their needs and preferences as identified by their families. Clinicians and researchers are interested in developing interventions to improve family-centred care need information about the characteristics of existing interventions, their development and the domains of family-centred care that they address. We conducted a scoping review that aimed to identify and characterize recent family-centred interventions designed to improve experiences with care for children with chronic conditions.
We searched Medline, Embase, PsycInfo and Cochrane databases, and grey literature sources for relevant articles or documents published between 1 January 2019 and 11 August 2020 (databases) or 7-20 October 2020 (grey literature). Primary studies with ≥10 participants, clinical practice guidelines and theoretical articles describing family-centred interventions that aimed to improve experiences with care for children with chronic conditions were eligible. Following citation and full-text screening by two reviewers working independently, we charted data covering study characteristics and interventions from eligible reports and synthesized interventions by domains of family-centred care.
Our search identified 2882 citations, from which 63 articles describing 61 unique interventions met the eligibility criteria and were included in this review. The most common study designs were quasiexperimental studies (n = 18), randomized controlled trials (n = 11) and qualitative and mixed-methods studies (n = 9 each). The most frequently addressed domains of family-centred care were communication and information provision (n = 45), family involvement in care (n = 37) and access to care (n = 30).
This review, which identified 61 unique interventions aimed at improving family-centred care for children with chronic conditions across a range of settings, is a concrete resource for researchers, health care providers and administrators interested in improving care for this high-needs population.
This study was co-developed with three patient partner co-investigators, all of whom are individuals with lived experiences of rare chronic diseases as parents and/or patients and have prior experience in patient engagement in research (I. J., N. P., M. S.). These patient partner co-investigators contributed to this study at all stages, from conceptualization to dissemination.
患有慢性病的儿童比一般儿科人群有更大的医疗需求，但他们可能无法获得以家庭为中心的护理，无法满足他们的需求和偏好。临床医生和研究人员有兴趣开发干预措施来改善以家庭为中心的护理需求信息，他们需要了解现有干预措施的特点、发展情况以及它们所针对的以家庭为中心的护理领域。我们进行了一项范围界定审查，旨在确定和描述旨在改善慢性病儿童护理体验的近期以家庭为中心的干预措施，并对其进行特征描述。
我们检索了 Medline、Embase、PsycInfo 和 Cochrane 数据库以及灰色文献来源，以获取 2019 年 1 月 1 日至 2020 年 8 月 11 日（数据库）或 2020 年 10 月 7 日至 20 日（灰色文献）期间发表的相关文章或文件。纳入标准为至少有 10 名参与者的原始研究、描述旨在改善慢性病儿童护理体验的以家庭为中心的干预措施的临床实践指南和理论文章。两名独立审查员通过引用和全文筛选，对合格报告中的数据进行图表绘制，涵盖研究特征和干预措施，并按以家庭为中心的护理领域对干预措施进行综合分析。
我们的搜索共确定了 2882 条引文，其中 63 篇文章描述了 61 项符合纳入标准的独特干预措施，并纳入本综述。最常见的研究设计是准实验研究（n=18）、随机对照试验（n=11）和定性及混合方法研究（n=9）。最常涉及的以家庭为中心的护理领域包括沟通和信息提供（n=45）、家庭参与护理（n=37）和护理获取（n=30）。
本综述确定了 61 项独特的干预措施，旨在改善慢性病儿童的以家庭为中心的护理，这些干预措施在各种环境中都有应用，为有兴趣改善这一高需求人群护理的研究人员、医疗保健提供者和管理人员提供了一个具体的资源。
这项研究是与三位患者伙伴共同研究者合作进行的，他们都是作为父母和/或患者有过罕见慢性病经历的个人，并且有参与研究的患者参与经验（I. J.、N. P.、M. S.）。这些患者伙伴共同研究者在从概念到传播的各个阶段都为这项研究做出了贡献。
