Engle V F, Fox-Hill E, Graney M J
University of Tennessee, Memphis, College of Nursing, Department of Primary Care, 38103, USA.
J Am Geriatr Soc. 1998 Sep;46(9):1091-6. doi: 10.1111/j.1532-5415.1998.tb06646.x.
The purpose of this study was to describe and compare the experiences, needs, priorities, and concerns reported by black and white nursing home residents during the living-dying interval. The living-dying interval is defined as the time between the knowledge of one's impending death and death itself.
This qualitative study was part of a larger ethnographic project. Residents participated in from one to four individual, in-depth, semi-structured, audiotaped interviews.
Residents lived in two large county-financed nursing homes that have historically provided care to indigent black and white older adults.
Purposive sampling was used to identify eight black and five white residents with terminal cancer diagnoses who could serve as rich resources about the experience of living-dying in a nursing home.
Residents were asked open-ended questions about how things have been and what would make things better; what comforts them and would make them more comfortable; what dying means to them; and what things are important for nursing staff to know.
Verbatim transcripts of the interviews were coded using QRS NUD-IST software. Codes were placed in categories, categories were reviewed for common and different concepts, themes, and patterns, and a conceptual model was developed. The model identified six care needs: (1) day-to-day living; (2) inadequate pain relief for black residents; (3) difficulty chewing and swallowing; (4) importance of religious activities; (5) giving care to others; and (6) appreciation of respectful and prompt care. Residents validated all components of the conceptual model.
Black and white terminally ill residents focused on the quality of living rather than on dying, and black residents may be undertreated for pain. Important care needs for pain and religion are not routinely addressed by the Minimum Data Set (MDS) and Resident Assessment Protocol (RAP) triggers.
本研究旨在描述和比较黑人与白人养老院居民在濒死期间的经历、需求、优先事项和担忧。濒死期间被定义为一个人知晓自己即将死亡到死亡本身之间的时间段。
这项定性研究是一个更大的人种志项目的一部分。居民参与了一到四次个人的、深入的、半结构化的录音访谈。
居民居住在两家由县资助的大型养老院，这些养老院历来为贫困的黑人和白人老年人提供护理服务。
采用目的抽样法，确定了八名被诊断患有晚期癌症的黑人居民和五名白人居民，他们可以作为了解养老院濒死经历的丰富资源。
向居民提出开放式问题，询问他们情况如何以及怎样能让情况变得更好；什么能让他们感到舒适以及怎样能更舒适；死亡对他们意味着什么；以及护理人员需要了解哪些重要事项。
访谈的逐字记录使用QRS NUD-IST软件进行编码。代码被归入不同类别，对类别进行审查以找出共同和不同的概念、主题及模式，并建立了一个概念模型。该模型确定了六项护理需求：（1）日常生活；（2）黑人居民疼痛缓解不足；（3）咀嚼和吞咽困难；（4）宗教活动的重要性；（5）照顾他人；（6）对尊重和及时护理的感激。居民对概念模型的所有组成部分进行了验证。
患有晚期疾病的黑人和白人居民关注的是生活质量而非死亡，黑人居民的疼痛可能未得到充分治疗。《最低数据集》（MDS）和《居民评估协议》（RAP）触发因素并未常规解决疼痛和宗教方面的重要护理需求。
