Exploring integrated care for children with cerebral palsy: a stakeholder analysis.

IF 2.7 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES
Silje Askeland, Veslemøy Guise, Karina Aase, Maren Kristine Raknes Sogstad
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Abstract

Background: Children with cerebral palsy (CP) and their families need coordinated services. Accordingly, integrated care models have been introduced as the standard for service provision. However, situations with coordination and collaboration challenges occur leading to fragmented services that do not meet the care needs of children and families. This study aimed to identify stakeholders involved in the care and follow-up of children and their families and explore their roles, responsibilities, and relationships to inform the improvement of integrated care for children with CP.

Methods: A stakeholder analysis was conducted based on interviews with children, parents, and service providers; observations in multidisciplinary coordination meetings; and a review of documents. Six families with a child aged between 8 and 12 years with a primary diagnosis of CP participated. Relevant service providers were identified through family interviews and were invited to individual or focus group interviews.

Results: The results identified 42 stakeholders categorized into 14 groups offering healthcare, educational, social, and family support services. Stakeholders become involved in the families' long-term care at different times and provide services within various time spans according to specific emerging challenges. Stakeholders' responsibilities include diagnosing and referring patients, providing short-term treatment, and providing long-term care. Additionally, responsibilities can be overlapping and unclear, and the involved stakeholders operate under different regulations and institutional contexts, leading to gaps in patient follow-up. Relationships between the stakeholders vary from full integration to no contact.

Conclusion: Long-term care for children with CP and their families is complex, involving numerous stakeholders across various sectors, governed by regulations within different institutional contexts, challenging integrated care. Stakeholders' affiliation with different sectors and their varying roles has the potential to contribute to a holistic approach. However, without clear guidance this seems hard to achieve, which may lead to a lack of collective understanding and unmet needs for children and families. There is still a need for further research on collaborative experiences among children, families, and service providers, and their impact on integrated services.

探索脑瘫儿童的综合护理:利益相关者分析。
背景:脑瘫患儿及其家庭需要协调服务。因此,综合护理模式被引入作为提供服务的标准。然而,出现了协调和合作方面的挑战,导致服务支离破碎,无法满足儿童和家庭的护理需求。本研究旨在找出参与儿童及其家庭照护与跟进的利益相关者,并探讨他们的角色、责任和关系,为改善cp儿童的综合照护提供信息。方法:通过对儿童、家长和服务提供者的访谈,进行利益相关者分析;多学科协调会议的意见;以及对文件的审查。有6个家庭的孩子年龄在8到12岁之间,初步诊断为CP。通过家庭访谈确定相关的服务提供者,并邀请他们进行个人或焦点小组访谈。结果:结果确定了42个利益相关者,分为14个群体,提供医疗保健、教育、社会和家庭支持服务。利益相关者在不同的时间参与家庭的长期护理,并根据具体的新挑战在不同的时间跨度内提供服务。利益相关者的责任包括诊断和转诊患者,提供短期治疗,以及提供长期护理。此外,责任可能重叠且不明确,所涉及的利益相关者在不同的法规和制度背景下运作,导致患者随访存在差距。利益相关者之间的关系从完全整合到没有联系。结论:CP儿童及其家庭的长期护理是复杂的,涉及不同部门的众多利益相关者,受不同制度背景下的法规管辖,对综合护理提出了挑战。利益相关者与不同部门的联系及其不同的角色有可能有助于采取整体方法。然而,如果没有明确的指导,这似乎很难实现,这可能导致缺乏集体理解,儿童和家庭的需要得不到满足。还需要进一步研究儿童、家庭和服务提供者之间的合作经验及其对综合服务的影响。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
BMC Health Services Research
BMC Health Services Research 医学-卫生保健
CiteScore
4.40
自引率
7.10%
发文量
1372
审稿时长
6 months
期刊介绍: BMC Health Services Research is an open access, peer-reviewed journal that considers articles on all aspects of health services research, including delivery of care, management of health services, assessment of healthcare needs, measurement of outcomes, allocation of healthcare resources, evaluation of different health markets and health services organizations, international comparative analysis of health systems, health economics and the impact of health policies and regulations.
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