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残疾儿童住院患者的经历:对报告儿童、家长和专业人员观点的定性研究进行的结构化综述与综合分析

The experience of disabled children as inpatients: a structured review and synthesis of qualitative studies reporting the views of children, parents and professionals.

作者信息

Shilling V, Edwards V, Rogers M, Morris C

机构信息

PenCRU & PenCLAHRC, Peninsula Medical School, University of Exeter, Exeter, UK.

出版信息

Child Care Health Dev. 2012 Nov;38(6):778-88. doi: 10.1111/j.1365-2214.2012.01372.x. Epub 2012 Feb 28.

Abstract

Disabled children are a broad group that includes those with complex, special or additional health needs as a result of chronic physical, cognitive, communication or behavioural problems. These children are more frequently admitted to hospital than other children; however, there appears to be relatively little research on their experience as inpatients. The aim of this structured review and synthesis was to integrate findings from qualitative studies reporting the experience of disabled children when they are hospital inpatients. Inclusion criteria were: qualitative studies that focused on the experience of children less than 18 years old, with a chronic health condition or neurodisability, during an inpatient stay. Studies of outpatient episodes or intensive care units were excluded. A systematic search identified relevant abstracts, selected papers were reviewed and data were extracted. The synthesis involved elucidating and integrating common themes. Eight relevant papers were identified; data were gathered from children, parents and staff. Communication between children and staff was a dominant theme and comprised giving the child information about their condition and appropriate involvement of the child/young person in discussions and decision making that affected them. Also important was communication between parents and staff, particularly around the division of care for their child. Other themes included emotions, particularly fears, the ward environment and confidence in staff. The review suggests that disabled children's experience as inpatients is not always optimal. Improving the communication skills of ward staff and providing information to disabled children and their families would improve disabled children's experience when they are inpatients.

摘要

残疾儿童是一个广泛的群体,包括那些因慢性身体、认知、沟通或行为问题而有复杂、特殊或额外健康需求的儿童。这些儿童比其他儿童更频繁地住院;然而,关于他们作为住院患者的经历的研究似乎相对较少。这项结构化综述和综合分析的目的是整合定性研究的结果,这些研究报告了残疾儿童作为住院患者时的经历。纳入标准为:聚焦于18岁以下患有慢性健康状况或神经残疾的儿童在住院期间经历的定性研究。门诊病例或重症监护病房的研究被排除。通过系统检索确定了相关摘要,对选定的论文进行了审查并提取了数据。综合分析包括阐明和整合共同主题。共确定了八篇相关论文;数据收集自儿童、家长和工作人员。儿童与工作人员之间的沟通是一个主要主题,包括向儿童提供有关其病情的信息以及让儿童/青少年适当参与影响他们的讨论和决策。家长与工作人员之间的沟通也很重要,特别是围绕对其子女护理的分工。其他主题包括情绪,尤其是恐惧、病房环境以及对工作人员的信任。该综述表明,残疾儿童作为住院患者的经历并不总是理想的。提高病房工作人员的沟通技巧并向残疾儿童及其家庭提供信息,将改善残疾儿童作为住院患者时的体验。

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