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
{"title":"儿童的道德经验与医疗复杂性:参与解释学民族志在巴西。","authors":"Raíssa Passos Dos Santos,&nbsp;Mary Ellen Macdonald,&nbsp;Franco A Carnevale","doi":"10.1177/13674935221112156","DOIUrl":null,"url":null,"abstract":"<p><p>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.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.3000,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10240624/pdf/","citationCount":"2","resultStr":"{\"title\":\"Moral experiences of children with medical complexity: A participatory hermeneutic ethnography in Brazil.\",\"authors\":\"Raíssa Passos Dos Santos,&nbsp;Mary Ellen Macdonald,&nbsp;Franco A Carnevale\",\"doi\":\"10.1177/13674935221112156\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>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.</p>\",\"PeriodicalId\":54388,\"journal\":{\"name\":\"Journal of Child Health Care\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":1.3000,\"publicationDate\":\"2023-06-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10240624/pdf/\",\"citationCount\":\"2\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Child Health Care\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1177/13674935221112156\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q3\",\"JCRName\":\"NURSING\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Child Health Care","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1177/13674935221112156","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"NURSING","Score":null,"Total":0}
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.

求助全文
通过发布文献求助,成功后即可免费获取论文全文。 去求助
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.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
确定
请完成安全验证×
copy
已复制链接
快去分享给好友吧!
我知道了
右上角分享
点击右上角分享
0
联系我们:info@booksci.cn Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。 Copyright © 2023 布克学术 All rights reserved.
京ICP备2023020795号-1
ghs 京公网安备 11010802042870号
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术官方微信