Schleef Tanja, Schrader Sophie, van Baal Katharina, Schneider Nils, Afshar Kambiz, Müller-Mundt Gabriele
Institut für Allgemeinmedizin und Palliativmedizin, Medizinische Hochschule Hannover, Hannover, Deutschland.
Z Evid Fortbild Qual Gesundhwes. 2024 Aug;188:48-57. doi: 10.1016/j.zefq.2024.06.005. Epub 2024 Jul 22.
Established as health insurance benefit in 2007, Specialized Palliative Home Care (SPHC) has been continuously expanded. At the same time, health policy initiatives intended to promote general outpatient palliative care. In comparison to urban centers, the development of palliative care networks in rural areas appears to be more difficult. In addition, there is an increasing shortage of family doctors in primary care. Family members play a key role in the home care for seriously ill patients. This paper therefore investigated the experiences of relatives with the end-of-life (EoL) care for family members with life-limiting chronic diseases in more rural regions. The aim was to determine aspects that, from the relatives' point of view, are essential for optimizing EoL care.
Qualitative after-death interviews with relatives in two districts were conducted in the first six months of 2019, who were recruited by the deceased patients' family doctor. Relatives (age ≥18 years) of patients who died in 2018 were included. The interviews were digitally recorded, transcribed and analyzed using content analysis.
In the first half of 2019, 28 after-death interviews were conducted with 30 relatives (77% female, age: 32 to 83 years) from rural (n=8) and urban communities (n=22) in two Lower Saxonian counties. They were mostly in a partnership or parent-child relationship with the deceased person. The central categories and needs that emerged in the analysis were: (1) communication about dying and death, (2) information and enabling, (3) support of and relief for relatives, and (4) continuity and cooperation of the services involved in EoL care. The results underline the fact that family caregivers in particular find open communication, information to provide them with the confidence to act, recognizing and responding to support needs and continuity in the course helpful in coping with EoL care situations. Access problems to specialist medical care, deficiencies in care coordination and bureaucratic hurdles in the provision of medical aids proved to be an additional burden.
The results underline the importance of open communication and the integration of relatives into the care process for optimal care at the end of life. Close cooperation between the services involved and proactive support for relatives are essential, too, especially in rural areas where the challenges of accessing and coordinating care services are a major concern.
The identification and communication of complex problems, the needs of patients and their relatives and possible barriers to accessing care services are prerequisites for the timely initiation of palliative care measures and support for family caregivers. In addition to needs-based care structures, the optimization of EoL care in home settings requires cooperation and networking between professional stakeholders.
专门的姑息家庭护理（SPHC）于2007年被确立为一项医疗保险福利，并一直在持续扩展。与此同时，旨在促进普通门诊姑息治疗的卫生政策举措也在推进。与城市中心相比，农村地区姑息治疗网络的发展似乎更为困难。此外，基层医疗中家庭医生的短缺日益严重。家庭成员在重症患者的家庭护理中起着关键作用。因此，本文调查了农村地区亲属对患有终末期慢性疾病的家庭成员进行临终关怀的经历。目的是确定从亲属角度来看，对优化临终关怀至关重要的方面。
2019年上半年，对两个地区的亲属进行了定性的死后访谈，这些亲属由已故患者的家庭医生招募。纳入了2018年去世患者的亲属（年龄≥18岁）。访谈进行了数字录音、转录，并采用内容分析法进行分析。
2019年上半年，对下萨克森州两个县农村（n = 8）和城市社区（n = 22）的30名亲属（77%为女性，年龄32至83岁）进行了28次死后访谈。他们大多与逝者是伴侣或亲子关系。分析中出现的核心类别和需求包括：（1）关于死亡和临终的沟通，（2）信息提供与赋能，（3）对亲属的支持与减轻负担，以及（4）临终关怀相关服务的连续性与合作。结果强调了这样一个事实，即家庭护理人员尤其发现开放的沟通、为他们提供行动信心的信息、认识并回应支持需求以及过程中的连续性有助于应对临终关怀情况。专科医疗护理的获取问题、护理协调方面的不足以及提供医疗辅助设备时的官僚障碍被证明是额外的负担。
结果强调了开放沟通以及让亲属融入护理过程对于优化临终关怀的重要性。相关服务之间的密切合作以及对亲属的积极支持也至关重要，尤其是在农村地区，获取和协调护理服务的挑战是一个主要问题。
识别并沟通复杂问题、患者及其亲属的需求以及获取护理服务可能存在的障碍，是及时启动姑息治疗措施并支持家庭护理人员的前提条件。除了基于需求的护理结构外，在家庭环境中优化临终关怀还需要专业利益相关者之间的合作与联网。
