Parenting children requiring complex care: a journey through time
Parenting children requiring complex care: a journey through time
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DOI：
10.1111/j.1365-2214.2007.00790.x
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发表时间：
2008-03-01
影响因子：
1.9
通讯作者：
Callery, P.
中科院分区：
文献类型：
--
作者：
MacDonald, H.;Callery, P.
背景 需要复杂护理的儿童的父母在家里提供密集且高要求的护理。与在机构中提供类似护理的专业人员不同，父母可能无法定期休息。结果，随着时间的推移，父母会经历与照顾相关的健康和社会后果。暂托照护是一种从照料中休息的形式，经常被这些父母认为是一种未满足的需求。 方法 由于缺乏有关照料随时间推移的影响的文献，因此采用了一种人种学方法，包括深入访谈、参与观察、生态地图和文件审查。需要复杂护理的儿童的父母、护士和社会工作者参与了这项研究。结果 根据父母对养育需要复杂护理的孩子的回顾性叙述，构建了随时间变化的护理发展图。发展图描述了儿童从婴儿期到成年早期的照顾轨迹，以及父母对临时照顾不断变化的需求。结论现有文献关注的是作为照顾者的父母的日常经历，而不是他们随着时间的推移的经历。由于需要复杂护理的儿童的父母从婴儿期到孩子或父母死亡一直提供护理，因此喘息需求将会发生变化。该发展图确定了一组父母如何报告护理方面的这些变化以及他们对临时护理的感知需求。
Background Parents of children requiring complex care provide intense and demanding care in their homes. Unlike professionals who provide similar care in institutions, parents may not receive regular breaks from care giving. As a result, parents, over time, experience health and social consequences related to care giving. Respite care, one form of a break from care giving, is frequently cited as an unmet need by such parents.Method Given the paucity of literature on the impact of care giving over time, an ethnographic approach that involved in-depth interviews, participant observation, eco-maps, and document review was used. Parents of children requiring complex care, nurses and social workers participated in the study.Results A developmental map of care giving over time was constructed from the parents' retrospective accounts of parenting a child requiring complex care. The developmental map describes the trajectory of care for the children from infancy through young adulthood and the parents' evolving needs for respite care.Conclusion Existing literature focuses on the day-to-day experiences of parents, who are carers, rather than their experiences over time. As parents of children requiring complex care are providing care from infancy through the death of either child or parent, respite needs will change. This developmental map identifies how a group of parents reported these changes in care giving and their perceived needs for respite care.