Experiences of Inpatient Healthcare Services Among Children With Medical Complexity and Their Families: A Scoping Review

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES Health Expectations Pub Date : 2024-09-04 DOI:10.1111/hex.14178

Tammie Dewan, Lyndsay Mackay, Lauren Asaad, Francine Buchanan, K. Alix Hayden, Lara Montgomery

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Abstract

Background

Children with medical complexity (CMC) have high healthcare utilization and face unique challenges during hospital admissions. The evidence describing their experiences of inpatient care is distributed across disciplines. The aim of this scoping review was to map the evidence related to the inpatient experience of care for CMC and their families, particularly related to key aspects and methodological approaches, and identify gaps that warrant further study.

Methods

This scoping review was conducted in accordance with JBI methodology and included all studies that reported experiences of acute hospital care for CMC/families. All study designs were included. Databases searched included EMBASE, CINAHL Plus with Full Text, Web of Science, MEDLINE(R) and APA PsycInfo from 2000 to 2022. Details about the participants, concepts, study methods and key findings were abstracted using a data abstraction tool. A thematic analysis was conducted.

Results

Forty-nine papers were included: 27 qualitative studies, 10 quantitative studies, six mixed methods studies, two descriptive studies and four reviews. Some quantitative studies used validated instruments to measure experience of care, but many used non-validated surveys. There were a few interventional studies with a small sample size. Results of thematic analysis described the importance of negotiating care roles, shared decision-making, common goal setting, relationship-building, communication, sharing expertise and the hospital setting itself.

Conclusion

CMC and families value relational elements of care and partnering through sharing expertise, decision-making and collaborative goal-setting when admitted to hospital.

Patient or Public Contribution

This review was conducted in alignment with the principles of patient and family engagement. The review was conceptualized, co-designed and conducted with the full engagement of the project's parent–partner. This team member was involved in all stages from constructing the review question, to developing the protocol, screening articles and drafting this manuscript.

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医疗复杂性儿童及其家庭的住院医疗服务体验：范围审查。

背景：医疗复杂性儿童（CMC）的医疗保健使用率很高，在住院期间面临着独特的挑战。描述他们住院治疗经历的证据分布于各个学科。本次范围界定综述的目的是梳理与医治复杂性儿童及其家庭的住院体验相关的证据，尤其是与关键方面和方法相关的证据，并找出需要进一步研究的空白点：本次范围界定综述按照 JBI 方法进行，包括所有报告儿童疾病管理中心/家属急症医院护理经验的研究。所有研究设计均包括在内。检索的数据库包括 2000 年至 2022 年的 EMBASE、CINAHL Plus（含全文）、Web of Science、MEDLINE(R) 和 APA PsycInfo。使用数据摘录工具摘录了有关参与者、概念、研究方法和主要发现的详细信息。结果：结果：共收录了 49 篇论文：结果：共收录了 49 篇论文：27 篇定性研究、10 篇定量研究、6 篇混合方法研究、2 篇描述性研究和 4 篇综述。一些定量研究使用了经过验证的工具来衡量护理体验，但许多研究使用了未经验证的调查。有几项干预性研究的样本量较小。主题分析结果表明了协商护理角色、共同决策、共同目标设定、关系建立、沟通、专业知识共享和医院环境本身的重要性：结论：儿童疾病管理中心和家属重视入院时通过分享专业知识、决策和共同目标设定等方式进行护理和合作的关系要素：本研究符合患者和家属参与的原则。审查的构思、共同设计和实施都得到了项目家长合作伙伴的充分参与。该团队成员参与了从构建综述问题、制定方案、筛选文章到起草本手稿的所有阶段。

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来源期刊

Health Expectations 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.20

自引率

9.40%

发文量

251

审稿时长

>12 weeks

期刊介绍： Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including: • Person-centred care and quality improvement • Patients'' participation in decisions about disease prevention and management • Public perceptions of health services • Citizen involvement in health care policy making and priority-setting • Methods for monitoring and evaluating participation • Empowerment and consumerism • Patients'' role in safety and quality • Patient and public role in health services research • Co-production (researchers working with patients and the public) of research, health care and policy Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.