期刊
JOURNAL OF FAMILY NURSING
卷 27, 期 4, 页码 327-338出版社
SAGE PUBLICATIONS INC
DOI: 10.1177/10748407211018856
关键词
Amish; family management; chronic genetic disease; children
资金
- National Institute of Nursing Research, Ruth L. Kirschstein National Research Service Award (NRSA) [5 F31 NR010314-01]
- Elizabethtown College Young Center Scholar in Residence
- Luther College Paideia Supplemental Grant
The article discusses the management strategies of Amish families with children with genetic conditions, highlighting the spectrum of these strategies from home-oriented to medical-oriented. It emphasizes the central role that families play in decision making and health care management for children with genetic conditions.
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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