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“他们不会让你独自面对”:一项关于慢性病患儿家庭护理的定性研究

"They don't leave you on your own:" a qualitative study of the home care of chronically ill children.

作者信息

Köhlen C, Beier J, Danzer G

机构信息

Institute of Medicine/Nursing Pedagogics and Nursing Science, Medical School of Humboldt-University, Berlin, Germany.

出版信息

Pediatr Nurs. 2000 Jul-Aug;26(4):364-71.

Abstract

Learning to cope with a chronic illness is a process often demanding professional help that extends beyond the time spent in the hospital. Using interviews, this qualitative study describes the subjective experiences of five families with children who are chronically ill and the experiences of the two head nurses at External Care Services (EPD) in Berlin, Germany, an institution focused exclusively on home care for children. The positive experiences expressed by parents reflect the patient-oriented understanding of caring developed by the EPD, which strives for the qualified instruction of families and the building of caring relationships. As a result of the care offered by the EPD, many children are spared the repeated hospitalizations that so hinder the normalization of family life and impede family health.

摘要

学会应对慢性病是一个通常需要专业帮助的过程,且这种帮助所涵盖的时间超出住院时长。本定性研究通过访谈描述了五个有慢性病患儿家庭的主观经历,以及德国柏林外部护理服务机构(EPD)两名护士长的经历,该机构专门致力于儿童家庭护理。家长们所表达的积极经历反映了EPD所形成的以患者为导向的护理理念,该机构努力为家庭提供专业指导并建立护理关系。由于EPD提供的护理,许多儿童得以避免反复住院,而反复住院严重妨碍家庭生活正常化并损害家庭健康。

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