Care Unit, University Hospital Complex of Huelva, 21005 Huelva, Spain.
Granada District, Andalusian Health Service, 18016 Granada, Spain.
Int J Environ Res Public Health. 2019 Jul 11;16(14):2469. doi: 10.3390/ijerph16142469.
Health information and communication are key elements that allow patients and family members to make decisions about end-of-life care and guarantee a death with dignity. : To understand caregivers' experiences regarding health information and communication during the illness and death of family members. : This qualitative study was conducted in Andalusia based on the paradigm of hermeneutic phenomenology. Participants were caregivers who had accompanied a family member at the end of life for over 2 months and less than 2 years. Five nominal groups and five discussion groups were established, and 41 in-depth interviews with 123 participants were conducted. Atlas.ti 7.0 software was used to analyze the discourses. A comprehensive reading was carried out along with a second reading. The most relevant units of meaning were identified, and the categories were extracted. The categories were then grouped in dimensions and, finally, the contents of each dimension were interpreted and described given the appropriate clarifications. : Four dimensions of the dying process emerged: differences in caregivers' perceptions of information and communication, a conspiracy of silence, consequences of the absence or presence of information, and the need for a culture change. : Poor management of health information and communication at the end of life increased the suffering and discomfort of patients and their families. The culture of denying and avoiding death is still present today. A change in education about death would better enable health professionals to care for patients at the end of life.
健康信息和沟通是让患者和家属能够就临终关怀做出决策并确保有尊严地死亡的关键因素。：了解照顾者在家庭成员患病和死亡期间的健康信息和沟通方面的经验。：这项定性研究是在安达卢西亚进行的，基于解释学现象学的范式。参与者是在 2 个月以上但不到 2 年内陪伴临终家庭成员的照顾者。成立了五个名义小组和五个讨论小组，对 123 名参与者进行了 41 次深入访谈。使用 Atlas.ti 7.0 软件分析了话语。进行了全面阅读和第二次阅读。确定了最相关的意义单位，并提取了类别。然后将类别分组到维度中，最后，根据适当的说明解释和描述每个维度的内容。：临终过程出现了四个维度：照顾者对信息和沟通的看法存在差异、沉默的阴谋、信息缺失或存在的后果以及文化变革的需要。：临终时健康信息和沟通管理不善增加了患者及其家属的痛苦和不适。否认和避免死亡的文化至今仍然存在。关于死亡的教育的改变将使卫生专业人员能够更好地照顾临终患者。
