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Breaking difficult news in a cross-cultural setting: A qualitative study about Latina mothers of children with Down syndrome

机译:在跨文化环境中突破难题:关于唐氏综合症儿童的拉丁裔母亲的定性研究

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Giving difficult news to patients represents a common dilemma for health care professionals. Based on three decades of research, various authors have proposed guidelines outlining the ideal setting, delivery, and timing. Existing publications focus on patients of European descent and may not be applicable in cross-cultural settings. We explored perceptions of Spanish-speaking mothers who have a child with Down syndrome and how they preferred to receive the news of their child's diagnosis. We conducted semi-structured qualitative interviews (n=14), which were coded and analyzed by thematic networks to identify common themes. Six significant themes emerged: Cultural Belief System, Communication, Support/Lack of Support, Feelings Engendered, Medical Issues, and Medical System. One overarching theme of mother-child bonding encompassed all sub-themes. The mothers desired the news in a more positive, balanced light and with more complete explanations about the condition. Mothers felt excluded from the diagnostic process and wanted to be better informed about the need for diagnostic studies. Participants used religious beliefs to explain the reason for their child's condition. Many factors influenced Latina mothers' ability to bond initially with their children with Down syndrome. Ideally, these factors should be acknowledged during informing interviews to assist Latino families in adjustment.
机译:给患者带来困难的消息是医疗保健专业人员的共同难题。基于三十年的研究,许多作者提出了指导原则,概述了理想的设置,交付和时间安排。现有出版物主要针对欧洲血统的患者,可能不适用于跨文化背景。我们探讨了对患有唐氏综合症的孩子的讲西班牙语的母亲的看法,以及他们如何更愿意接收孩子的诊断信息。我们进行了半结构化的定性访谈(n = 14),并通过主题网络进行了编码和分析,以找出共同的主题。出现了六个重要的主题:文化信仰体系,沟通,支持/缺乏支持,情感加剧,医疗问题和医疗系统。母子结合的一个总体主题包含所有子主题。母亲们希望从更积极,更平衡的角度来了解这个消息,并对病情有更完整的解释。母亲感到自己被排除在诊断过程之外,并希望更好地了解诊断研究的必要性。参加者使用宗教信仰来解释其孩子状况的原因。许多因素影响拉美裔母亲与唐氏综合症的孩子最初建立联系的能力。理想情况下,应在采访中告知这些因素,以帮助拉丁裔家庭进行调整。

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