Foreva Gergana, Assenova Radost
General Practice Section, Medical University Plovdiv , Plovdiv, Bulgaria .
J Palliat Med. 2014 Jan;17(1):56-61. doi: 10.1089/jpm.2013.0333. Epub 2013 Dec 9.
When identifying patients for palliative care, medical specialists find it necessary to disclose "hidden" patients: the patient's relatives. The issue has been discussed sporadically in Bulgaria; the present study was part of a larger investigation that examined the opinion of medical specialists, patients, and their relatives.
The study protocol was explained to participants who gave written informed consent. Patients (n=211) were followed up on by their general practitioners (GPs) (n=42) during one year. All relatives were invited, and 173 (82%) agreed and participated. A questionnaire created by the authors was used. The data were analyzed by frequency distribution (descriptive statistics) and nonparametric tests (Pearson's χ(2)) and statistically processed using SPSS 17.0 (SPSS Inc., Chicago, IL).
Relatives providing care were predominantly women, two-thirds over 60 years of age. There was a one-to-one ratio between caregivers for oncological and nononcological patients. The duration of care was more than one year in 53% of cases. Most relatives reported their loved ones found physical suffering "very hard to bear" (53%), while approximately 17% could not assess the extent of psychological suffering. The vast majority stated that they had difficulties in providing care, and 68% had financial problems in that respect.
Including relatives as users and part of the palliative care team has been discussed in the literature. In Bulgaria, participation is solely due to the lack of organized services for palliative care. Relatives participate in activities that are performed by trained staff in countries with developed palliative care; these activities, along with negative emotional experiences and economic difficulties, overburden these caregiving relatives significantly.
在确定姑息治疗患者时，医学专家发现有必要将“隐藏”的患者——患者的亲属纳入考量。这个问题在保加利亚曾偶尔被讨论过；本研究是一项更大规模调查的一部分，该调查考察了医学专家、患者及其亲属的意见。
向参与者解释了研究方案，他们签署了书面知情同意书。211名患者由42名全科医生在一年时间内进行随访。所有亲属均被邀请，173名（82%）同意并参与。使用了作者编制的问卷。数据通过频率分布（描述性统计）和非参数检验（皮尔逊卡方检验）进行分析，并使用SPSS 17.0（SPSS公司，伊利诺伊州芝加哥）进行统计处理。
提供护理的亲属以女性为主，三分之二年龄超过60岁。肿瘤患者和非肿瘤患者的护理人员比例为一对一。53%的病例护理时长超过一年。大多数亲属表示他们所爱的人身体痛苦“难以承受”（53%），而约17%无法评估心理痛苦的程度。绝大多数人表示他们在提供护理方面有困难，68%在这方面存在经济问题。
文献中曾讨论过将亲属纳入姑息治疗团队并作为服务对象的问题。在保加利亚，亲属参与仅仅是因为缺乏有组织的姑息治疗服务。在姑息治疗发达的国家，亲属参与的活动是由受过培训的工作人员进行的；这些活动，连同负面的情感体验和经济困难，给这些护理亲属带来了极大负担。
