School of Medicine, Department of Psychiatry and Psychotherapy, Technical University of Munich, Ismaninger Str. 22, 81675, Munich, Germany.
School of Medicine, Department of Psychosomatic Medicine, Technical University of Munich, Langerstr. 3, 81675, Munich, Germany.
BMC Palliat Care. 2020 Mar 12;19(1):30. doi: 10.1186/s12904-020-0533-3.
Since people with advanced dementia are usually not able to make complex decisions, it is usually the family caregivers, as proxies, who have to decide on treatments and their termination. However, these decisions are difficult for the caregivers to make, as they are often inadequately informed and cannot properly assess the consequences; moreover, they are concerned about harming the sick person. We aimed to first develop an informative booklet about palliative care issues for caregivers of people with advanced dementia. Secondly, we aimed to investigate a change in family caregivers' knowledge regarding palliative care issues and caregivers' involvement in medical and care decisions before and after studying this booklet.
A first version of the booklet was drafted by an experienced psychiatrist and palliative care specialist based on existing booklets and guidelines; necessary cultural adaptions were taken into consideration. A nominal group process was conducted to develop the informative guide. In order to investigate the acceptance of the booklet and the possibility to implement it, 38 patient-caregiver dyads were recruited, and caregivers were interviewed both before receiving the booklet and after 3 months of receiving the booklet.
Experts from various disciplines collaborated on a German booklet for family caregivers of people with advanced dementia as an information aid regarding issues of palliative care. The subsequent test showed that all caregivers had experienced a personal benefit from the booklet. Caregivers had a significant gain of knowledge after provision of the booklet. A large proportion of caregivers who had not previously considered and/or discussed medical topics reported that they had done so within 3 months after obtaining the booklet, or planned to do so in the near future.
The caregivers valued the comprehensible, concise and well-structured information guide on palliative care issues in advanced dementia. They agreed it increases knowledge and prompts decision making and therefore should be developed in many languages and disseminated among family caregivers of people with dementia.
clinicaltrial.gov, NCT03548142. Retrospectively registered 7 June 2018.
由于患有晚期痴呆症的人通常无法做出复杂的决定，因此通常是作为代理人的家庭护理人员来决定治疗方法及其终止。但是，这些决定对于护理人员来说很难做出，因为他们通常得不到充分的信息，也无法正确评估后果；此外，他们还担心会伤害病人。我们旨在首先为患有晚期痴呆症的患者的家庭护理人员编写一本有关姑息治疗问题的信息手册。其次，我们旨在调查在研究该手册前后，家庭护理人员对姑息治疗问题的知识以及对医疗和护理决策的参与情况是否有所改变。
一位经验丰富的精神科医生和姑息治疗专家根据现有手册和指南起草了第一版手册；考虑到必要的文化适应性。采用名义小组法来制定信息指南。为了调查手册的接受程度和实施的可能性，招募了 38 对患者-护理人员，在收到手册之前和之后的 3 个月对护理人员进行了访谈。
来自不同学科的专家共同编写了一本针对患有晚期痴呆症患者的家庭护理人员的德文手册，作为姑息治疗问题的信息辅助工具。随后的测试表明，所有护理人员都从手册中获得了个人收益。提供手册后，护理人员的知识有了显著提高。很大一部分以前没有考虑过和/或讨论过医疗话题的护理人员报告说，在获得手册后的 3 个月内，他们已经这样做了，或者计划在不久的将来这样做。
护理人员对这本通俗易懂、简明扼要且结构合理的晚期痴呆症姑息治疗问题信息手册给予了高度评价。他们认为该手册增加了知识，促进了决策制定，因此应该用多种语言编写，并分发给痴呆症患者的家庭护理人员。
clinicaltrial.gov，NCT03548142。2018 年 6 月 7 日回顾性注册。
