Osse Bart H P, Vernooij-Dassen Myrra J F J, Schadé Egbert, Grol Richard P T M
Centre for Quality of Care Research, University of Nijmegen, Nijmegen, The Netherlands.
Cancer Nurs. 2006 Sep-Oct;29(5):378-88; quiz 389-90. doi: 10.1097/00002820-200609000-00005.
Informal caregivers experience problems of their own for which they need support, but despite the efforts of the World Health Organization to include the well-being of family members and caregivers in the concept of palliative care, their needs are rarely assessed systematically. This report explores caregivers' problems and their needs for professional support. Seventy-six caregivers of cancer patients with advanced disease completed a comprehensive needs assessment questionnaire, the Problems and Needs in Palliative Care questionnaire-caregiver form, listing 67 potential problems in their quality of life and their role of caregiver and 9 items concerning informational needs. The results of this study reveal that the "Top 20" list of the problems and needs reported by caregivers includes fears and emotional burdens; for the most part, caregivers did not need any more professional attention than they were already receiving. Many, however, needed support for managing patients' symptoms and wanted professional attention for the availability and coordination of services. Despite communalities, there was diversity in caregivers' individual needs. Personal needs could be identified with the Problems and Needs in Palliative Care questionnaire-caregiver form checklist. Although only a few caregivers were affected by some issues, such as financial problems, help for them was often needed. In conclusion, most caregivers would like more professional attention for 4 or 5 specific issues, often related to their competence as caregivers for their patients. Using structured needs assessments with the Problems and Needs in Palliative Care questionnaire-caregiver form seems a feasible method to identify the needs of individual caregivers in palliative care.
非正式照护者自身也有需要支持的问题，但尽管世界卫生组织努力将家庭成员和照护者的福祉纳入姑息治疗概念中，他们的需求却很少得到系统评估。本报告探讨了照护者的问题以及他们对专业支持的需求。76名晚期癌症患者的照护者完成了一份全面的需求评估问卷，即姑息治疗中的问题与需求问卷——照护者版，该问卷列出了他们生活质量和照护者角色方面的67个潜在问题以及9项信息需求。这项研究的结果显示，照护者报告的问题与需求“前20”清单中包括恐惧和情感负担；在很大程度上，照护者所需要的专业关注并未超过他们已获得的关注。然而，许多人需要在管理患者症状方面得到支持，并希望在服务的可获得性和协调方面获得专业关注。尽管存在共性，但照护者的个人需求存在差异。通过姑息治疗中的问题与需求问卷——照护者版清单可以确定个人需求。虽然只有少数照护者受到一些问题的影响，如经济问题，但他们通常需要帮助。总之，大多数照护者希望在4或5个特定问题上得到更多专业关注，这些问题往往与他们作为患者照护者的能力有关。使用姑息治疗中的问题与需求问卷——照护者版进行结构化需求评估似乎是一种可行的方法，可用于确定姑息治疗中个体照护者的需求。
