Leis A M, Kristjanson L, Koop P M, Laizner A
Department of Community Health and Epidemiology, University of Saskatchewan, Saskatoon.
Cancer Prev Control. 1997 Dec;1(5):352-60.
This article reviews the published literature related to families of palliative care patients with cancer within the context of the Cancer Control Framework of the National Cancer Institute of Canada. Three themes emerged: 1) the impact of terminal cancer on the family; 2) family functioning--responses to terminal cancer; and 3) quality of palliative care from the family perspective. The most substantial body of research describes family needs, family caregiving burdens, caregiving costs and the impact of the patient's terminal cancer on the health of family members. Small samples, high nonresponse rates, selection biases and a lack of standardized outcome measures have impeded the advancement of knowledge. Method development studies are warranted, including the development of instruments to measure family care constructs. Longitudinal studies to examine the long-term impact of the patient's functional status, mood, symptom distress and quality of life on family members are needed. Research should also explore the effects of family composition, socioeconomic factors, culture and spirituality on families' experiences with terminal illness. Identification of families at risk as well as development and rigorous testing of appropriate interventions should become priorities.
本文在加拿大国家癌症研究所癌症控制框架的背景下，回顾了与癌症姑息治疗患者家庭相关的已发表文献。出现了三个主题：1）晚期癌症对家庭的影响；2）家庭功能——对晚期癌症的反应；3）从家庭角度看姑息治疗的质量。最丰富的研究主体描述了家庭需求、家庭护理负担、护理成本以及患者晚期癌症对家庭成员健康的影响。样本量小、高无应答率、选择偏倚以及缺乏标准化的结果测量方法阻碍了知识的进步。有必要开展方法开发研究，包括开发测量家庭护理结构的工具。需要进行纵向研究，以检验患者的功能状态、情绪、症状困扰和生活质量对家庭成员的长期影响。研究还应探讨家庭构成、社会经济因素、文化和精神信仰对家庭晚期疾病经历的影响。识别高危家庭以及开发和严格测试适当的干预措施应成为优先事项。
