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医疗保健专业人员、癌症患儿及其父母之间的信息共享:不止是信息交流的问题。

Information-sharing between healthcare professionals, parents and children with cancer: more than a matter of information exchange.

作者信息

Coyne I, Amory A, Gibson F, Kiernan G

机构信息

School of Nursing & Midwifery, Trinity College Dublin, Dublin, Ireland.

Children and Young People's Cancer Care, Great Ormond Street Hospital for Children NHS Foundation Trust, London.

出版信息

Eur J Cancer Care (Engl). 2016 Jan;25(1):141-56. doi: 10.1111/ecc.12411. Epub 2015 Nov 4.

Abstract

This study examined participants' views on children's participation in information-sharing and communication interactions. A descriptive qualitative approach was taken with individual interviews held with children (The term 'children' is used to denote both children and adolescents and to avoid cumbersome repetition.) aged 7-16 years (n = 20), their parents (n = 22) and healthcare professionals (n = 40) at a children's hospital in Ireland. Data were analysed using the constant comparative method and managed with NVivo (version 8). The findings indicate that professionals strongly supported an open and honest approach to information-sharing; however, this viewpoint was not shared by all parents. The need to maintain hope and spirit and promote an optimistic identity influenced the amount and type of information shared by parents. Children trusted their parents to share information, and valued their parents' role as interpreters of information, advocates, and communication buffers. Most professionals endorsed parents' primacy as managers of information but experienced difficulty navigating a restricted stance. This study adds important insights into the complexities of information-sharing in triadic encounters. Professionals need to maintain an open mind about information-sharing strategies families may choose, remain sensitive to parents and children's information requirements and adopt a flexible approach to information provision.

摘要

本研究调查了参与者对儿童参与信息共享和交流互动的看法。采用描述性定性研究方法,对爱尔兰一家儿童医院中7至16岁的儿童(n = 20)、他们的父母(n = 22)和医护人员(n = 40)进行了个体访谈(“儿童”一词用于指代儿童和青少年,以避免繁琐的重复表述)。使用持续比较法对数据进行分析,并使用NVivo(版本8)进行管理。研究结果表明,专业人员强烈支持采取开放和诚实的信息共享方式;然而,并非所有父母都认同这一观点。维持希望和精神以及促进积极身份认同的需求影响了父母所分享信息的数量和类型。儿童信任父母来分享信息,并重视父母作为信息解释者、倡导者和沟通缓冲者的角色。大多数专业人员认可父母作为信息管理者的首要地位,但在应对受限立场时遇到困难。本研究为三方交流中信息共享的复杂性提供了重要见解。专业人员需要对家庭可能选择的信息共享策略持开放态度,对父母和儿童的信息需求保持敏感,并采取灵活的信息提供方式。

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