University of São Paulo, São Paulo, Brazil.
J Fam Nurs. 2012 Feb;18(1):91-122. doi: 10.1177/1074840711427038. Epub 2012 Jan 5.
Palliative care settings in many countries acknowledge families as their prime focus of care, but in Brazil, to date, researchers have devoted scant attention to that practice setting. In this article, we report the findings of a study that explored how families define and manage their lives when they have a child or adolescent undergoing palliative care at home. Data included individual semistructured interviews with 14 family members of 11 different families. Interviews were transcribed and the coding procedure featured qualitative content analysis methods. The deductive coding was based on the major components of the Family Management Style Framework and the eight dimensions comprising these components. The analysis provides insight into families' daily practices and problems inherent in managing their everyday lives that are encountered when they have a child in palliative care. The article features discussion of implications for the palliative care related development of family nursing practice.
在许多国家,姑息治疗环境都将家庭作为其主要的关怀焦点,但在巴西,迄今为止,研究人员对这种实践环境几乎没有关注。在本文中,我们报告了一项研究的结果,该研究探讨了当家庭中有儿童或青少年在家中接受姑息治疗时,他们如何定义和管理自己的生活。数据包括对 11 个不同家庭的 14 名家庭成员的个人半结构化访谈。访谈被转录,编码过程采用了定性内容分析方法。演绎编码基于家庭管理风格框架的主要组成部分和构成这些组成部分的八个维度。该分析深入了解了家庭在日常生活中管理日常生活时所面临的日常实践和问题,这些问题在儿童接受姑息治疗时会出现。本文讨论了姑息治疗相关家庭护理实践发展的影响。