Old Order Amish Family Management of Children With Genetic Conditions.

IF 2.6 3区 医学 Q1 FAMILY STUDIES Journal of Family Nursing Pub Date : 2021-11-01 Epub Date: 2021-06-09 DOI:10.1177/10748407211018856
Angela M Kueny, Lioness Ayres, Toni Tripp-Reimer
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Abstract

Families who raise children with genetic conditions manage health care within the context of cultural communities. For Amish families, although genetic conditions are prevalent and have been well reported, few studies document family management of these conditions. This article describes Amish family management strategies in light of the Family Management Framework's contextual factors. Ethnographic data captured variations in perspectives from Amish families with children with diverse genetic conditions, Amish community members, and health care providers. Findings describe families at the center of decision making and health care management for children with genetic conditions, utilizing health care professionals and their surrounding Amish community members as resources. Amish families' management strategies lie across a spectrum from home-oriented to medical-oriented, and this spectrum is elaborated in the findings and discussion of this article.

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旧秩序阿米什家庭管理的儿童遗传条件。
抚养有遗传病儿童的家庭在文化社区范围内管理保健。对于阿米什家庭来说,虽然遗传疾病很普遍,并且已经有了很好的报道,但很少有研究记录这些疾病的家庭管理。本文根据家庭管理框架的背景因素描述了阿米什人的家庭管理策略。人种学数据反映了有不同遗传条件儿童的阿米什家庭、阿米什社区成员和卫生保健提供者的观点差异。研究结果描述了家庭在遗传疾病儿童的决策和卫生保健管理的中心,利用卫生保健专业人员及其周围的阿米什社区成员作为资源。阿米什家庭的管理策略跨越了从以家庭为导向到以医疗为导向的范围,本文的研究结果和讨论详细阐述了这一范围。
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来源期刊
CiteScore
4.00
自引率
9.70%
发文量
40
审稿时长
>12 weeks
期刊介绍: Journal of Family Nursing (JFN) is a peer-reviewed, quarterly journal of nursing research, practice, education, and policy issues, as well as empirical and theoretical analyses on the subject of family health. Its interdisciplinary, international, and collaborative perspectives examine cultural diversity and families across the life cycle. This journal is a member of the Committee on Publication Ethics (COPE).
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