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镜子的两面:父母与服务提供者对脑瘫患儿家庭本位照护的看法

Two sides of the mirror: parents' and service providers' view on the family-centredness of care for children with cerebral palsy.

作者信息

Jeglinsky I, Autti-Rämö I, Brogren Carlberg E

机构信息

Department of Health and Wellfare, Arcada, University of Applied Sciences, Helsinki, Finland.

出版信息

Child Care Health Dev. 2012 Jan;38(1):79-86. doi: 10.1111/j.1365-2214.2011.01305.x. Epub 2011 Sep 9.

Abstract

BACKGROUND

In order to best meet the needs of both families and their children with cerebral palsy, many rehabilitation service providers have adopted a family-centred service (FCS) approach. In FCS parents are seen as experts on their child's needs, and the family and professionals collaborate in the rehabilitation process. However, parents and service providers might look at FCS from different points of view, i.e. look into the mirror from two different sides. The objective of this study was to explore the degree to which parents experience the service as being family-centred and to which extent the service providers experience their service provision as family-centred.

METHODS

A translated version of The Measure of Processes of Care 20 (MPOC-20) questionnaire was used to evaluate parents' experience of FCS, and a Measures of Processes of Care for Service Providers (MPOC-SP) questionnaire was used to evaluate the FCS provided by professionals. Parents visiting two university hospital neuropediatric wards (n= 67) during a 2-month period and who were willing to participate received the questionnaire. Also the service providers working on the same wards (n= 49) were invited to participate.

RESULTS

A total of 53 families and 29 service providers completed the questionnaires. Both parents and professionals generally rated the FCS positively. General information was rated lowest and respectful treatment the highest by both parents and professionals. The results revealed that written information about the child's condition, the possibility to choose when to receive information, and contact with other families in the same situation are areas in need of improvement.

CONCLUSIONS

The possibility to regularly evaluate services both from the families' and the professionals' perspectives should be part of quality development. Providing general information is a challenge for all service providers. The MPOC questionnaires can be used to highlight important areas of improvement in FCS.

摘要

背景

为了更好地满足脑瘫患儿家庭及其子女的需求,许多康复服务提供者采用了以家庭为中心的服务(FCS)方法。在以家庭为中心的服务中,父母被视为孩子需求方面的专家,家庭与专业人员在康复过程中相互协作。然而,父母和服务提供者可能会从不同角度看待以家庭为中心的服务,也就是说,从两面不同的镜子里看。本研究的目的是探讨父母体验到的服务以家庭为中心的程度,以及服务提供者体验到其提供的服务以家庭为中心的程度。

方法

使用《护理过程测量20》(MPOC - 20)问卷的翻译版本来评估父母对以家庭为中心服务的体验,并使用《服务提供者护理过程测量》(MPOC - SP)问卷来评估专业人员提供的以家庭为中心的服务。在两个月期间访问两家大学医院神经儿科病房且愿意参与的父母收到了问卷。同时,在同一病房工作的服务提供者(n = 49)也被邀请参与。

结果

共有53个家庭和29名服务提供者完成了问卷。父母和专业人员总体上对以家庭为中心的服务评价都很高。父母和专业人员对一般信息的评价最低,对尊重对待的评价最高。结果显示,关于孩子病情的书面信息、选择接收信息时间的可能性以及与处于相同情况的其他家庭的联系等方面需要改进。

结论

从家庭和专业人员的角度定期评估服务的可能性应成为质量改进的一部分。提供一般信息对所有服务提供者来说都是一项挑战。MPOC问卷可用于突出以家庭为中心服务中重要的改进领域。

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