Hinton W L, Levkoff S
Department of Psychiatry, UC Davis Medical Center, Sacramento, CA, USA.
Cult Med Psychiatry. 1999 Dec;23(4):453-75. doi: 10.1023/a:1005516002792.
This paper is a qualitative study based on retrospective, unstructured, qualitative interviews with Mrs. Jones and other African-American, Chinese-American, Irish-American and Latino family caregivers in the Boston area. A narrative approach is used to show how family caregivers draw on their cultural and personal resources to create stories about the nature and meaning of illness and to ask how ethnic identity may influence the kinds of stories family caregivers tell. Three different story types are identified and described, each with a distinctive configuration of illness meanings and overarching theme, or storyline: a subset of African-American, Irish-American, and Chinese-American caregivers told us stories about Alzheimer's as a disease that erodes the core identity of a loved one and deteriorates their minds; a subset of Chinese caregivers narrated stories that emphasized how families managed confusion and disabilities, changes ultimately construed as an expected part of growing old; a subset of Puerto Rican and Dominican families, while using the biomedical label of Alzheimer's disease or dementia, placed the elder's illness in stories about tragic losses, loneliness, and family responsibility. To construct their stories, caregivers drew upon both biomedical explanations and other cultural meanings of behavioral and cognitive changes in old age. Their stories challenge us to move beyond the sharp contrast between ethnic minority and non-ethnic minority views of dementia-related changes, to local clinics and hospitals as sites where biomedical knowledge is interpreted, communicated, discussed, and adapted to the perspectives and lived realities of families.
本文是一项定性研究，基于对琼斯夫人以及波士顿地区其他非裔美国人、华裔美国人、爱尔兰裔美国人和拉丁裔家庭照顾者进行的回顾性、非结构化定性访谈。采用叙事方法来展示家庭照顾者如何利用他们的文化和个人资源来创造关于疾病本质和意义的故事，并探讨种族身份如何可能影响家庭照顾者所讲述的故事类型。识别并描述了三种不同的故事类型，每种类型都有独特的疾病意义配置和总体主题或故事情节：一部分非裔美国人、爱尔兰裔美国人和华裔美国人照顾者告诉我们，关于阿尔茨海默病的故事是一种侵蚀亲人核心身份并使其心智衰退的疾病；一部分华裔照顾者讲述的故事强调了家庭如何应对困惑和残疾，这些变化最终被视为衰老过程中预期的一部分；一部分波多黎各和多米尼加家庭，虽然使用了阿尔茨海默病或痴呆症的生物医学标签，但将老年人的疾病置于关于悲惨损失、孤独和家庭责任的故事中。为了构建他们的故事，照顾者借鉴了生物医学解释以及老年行为和认知变化的其他文化意义。他们的故事促使我们超越少数族裔和非少数族裔对痴呆症相关变化看法的鲜明对比，关注当地诊所和医院，这些地方是生物医学知识被解读、交流、讨论并适应家庭观点和生活现实的场所。
