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针对有特殊医疗需求儿童的家长教育项目:一项系统综述

Parent education programmes for special health care needs children: a systematic review.

作者信息

Jackson Alun C, Liang Rachel P-T, Frydenberg Erica, Higgins Rosemary O, Murphy Barbara M

机构信息

Heart Research Centre, Melbourne, Victoria, Australia.

Melbourne Graduate School of Education, The University of Melbourne, Parkville, Victoria, Australia.

出版信息

J Clin Nurs. 2016 Jun;25(11-12):1528-47. doi: 10.1111/jocn.13178. Epub 2016 Apr 15.

Abstract

AIMS AND OBJECTIVES

The aim of this review was to examine parent education programmes for families with children with special health care needs, to better design interventions focusing on the psychosocial aspects of living with a child's chronic condition.

BACKGROUND

Studies of familial coping with children with special health care needs indicate high levels of parenting stress, with families with children with special health care needs at risk of major psychological and social disturbances and financial strain. Despite increased knowledge of the factors affecting children with special health care needs themselves, evidence for the effectiveness of preventative and treatment interventions in the form of parent education programmes remains limited.

DESIGN

Systematic review using PRISMA guidelines.

METHOD

Multi database Boolean searches in EBSCO Discovery Services using the search terms 'complex/special health care needs children', 'child/pediatric/congenital heart disease', 'chronic illness (including diabetes, cancer and cystic fibrosis)', 'family coping', 'siblings' AND 'parenting/family support programs' were conducted.

RESULTS

Analysis of 13 included studies showed evidence for the effectiveness of both mixed-health condition and condition-specific parenting programmes delivered in a variety of modes. Three common core intervention approaches were: use of narrative therapy enabling families to tell their own stories, thus facilitating emotional processing and (co-) construction of meaning; a focus on strengthening protective factors such as enhancing parents' skills in communication, and behavioural management and provision of psycho-education to deepen parents' understanding of their child's condition and associated developmental challenges.

CONCLUSION

Irrespective of the type of outcome measures used in the studies, the review showed that there were positive gains and improvements across a range of areas of family functioning such as mental health, parenting, communication and problem-solving skills postprogramme.

RELEVANCE TO CLINICAL PRACTICE

Identification of what programme characteristics enhance functioning for families with children with special health care needs should encourage the design of effective interventions.

摘要

目的与目标

本综述旨在研究针对有特殊医疗需求儿童家庭的家长教育项目,以便更好地设计聚焦于与患有慢性病儿童共同生活的心理社会层面的干预措施。

背景

对有特殊医疗需求儿童的家庭应对情况的研究表明,育儿压力水平较高,有特殊医疗需求儿童的家庭面临重大心理和社会困扰以及经济压力的风险。尽管对影响有特殊医疗需求儿童自身的因素的了解有所增加,但以家长教育项目形式开展的预防和治疗干预措施有效性的证据仍然有限。

设计

采用PRISMA指南进行系统综述。

方法

在EBSCO Discovery Services中使用搜索词“复杂/特殊医疗需求儿童”、“儿童/儿科/先天性心脏病”、“慢性病(包括糖尿病、癌症和囊性纤维化)”、“家庭应对”、“兄弟姐妹”以及“育儿/家庭支持项目”进行多数据库布尔搜索。

结果

对13项纳入研究的分析表明,以多种模式提供的混合健康状况和特定疾病育儿项目均具有有效性。三种常见的核心干预方法是:使用叙事疗法使家庭能够讲述自己的故事,从而促进情感处理和意义的(共同)构建;专注于加强保护因素,如提高家长的沟通技巧、行为管理能力,并提供心理教育以加深家长对孩子病情及相关发育挑战的理解。

结论

无论研究中使用何种类型的结果指标,综述表明,在项目实施后,家庭功能的一系列领域,如心理健康、育儿、沟通和解决问题的技能等方面都有积极的收获和改善。

与临床实践的相关性

确定哪些项目特征能增强有特殊医疗需求儿童家庭的功能,应有助于设计有效的干预措施。

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