儿童的道德经验与医疗复杂性:参与解释学民族志在巴西。

IF 1.3 4区 医学 Q3 NURSING
Raíssa Passos Dos Santos, Mary Ellen Macdonald, Franco A Carnevale
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引用次数: 2

摘要

医学复杂性儿童在文献中被定义为慢性病和医学上脆弱的儿童,具有复杂的护理需求。照顾这些儿童引起了重大的伦理和道德考虑。因此,这项对8名儿童及其家庭进行的参与性民族志研究旨在更好地理解患有医疗复杂性的儿童的道德经历,该研究基于儿童作为道德代理人的观点,并能够理解和表达对其生活经历的解释。通过我们的参与式解释学民族志研究,我们能够阐明患有医学复杂性的儿童如何在复杂的社会政治背景下表达他们的道德经历,使人们对什么是“正常”儿童的主流观点永久化。患有医学复杂性的儿童描述了他们对这些主流观点的抵制,因为他们努力参与到影响他们的问题的讨论中,对痛苦的医疗程序和治疗做出反应,并表达了他们对未来愿望的担忧。本研究对患有医学复杂性的儿童的道德经验所取得的知识,可以为儿童在复杂的社会政治背景下对其利益的理解提供依据,这些背景对儿童的生命价值有不同的评价。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

Moral experiences of children with medical complexity: A participatory hermeneutic ethnography in Brazil.

Moral experiences of children with medical complexity: A participatory hermeneutic ethnography in Brazil.

Children with medical complexity have been defined within the literature as chronically ill and medically fragile children with complex care needs. Care for these children raises significant ethical and moral considerations. Therefore, this participatory ethnographic study conducted with eight children and their families aimed to better understand the moral experiences of children with medical complexity, based on views of children as moral agents and capable of understanding and expressing interpretations about their lived experiences. Through our participatory hermeneutical ethnographic research, we were able to shed light on how children with medical complexity express their moral experiences within a complex sociopolitical context, perpetuating dominant outlooks on what is considered a "normal" child. Children with medical complexity described their resistance to these dominant views as they strive to be included in discussions about matters that affect them, reacting to painful medical procedures and treatments, and expressing their concerns about their future aspirations. The knowledge advanced by this study about moral experiences of children with medical complexity can inform understandings of children's interests based on their own interpretations within complex sociopolitical contexts that value their lives differently.

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来源期刊
Journal of Child Health Care
Journal of Child Health Care NURSING-PEDIATRICS
CiteScore
4.10
自引率
15.80%
发文量
60
审稿时长
>12 weeks
期刊介绍: Journal of Child Health Care is a broad ranging, international, professionally-oriented, interdisciplinary and peer reviewed journal. It focuses on issues related to the health and health care of neonates, children, young people and their families, including areas such as illness, disability, complex needs, well-being, quality of life and mental health care in a diverse range of settings. The Journal of Child Health Care publishes original theoretical, empirical and review papers which have application to a wide variety of disciplines.
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