Oechsle Karin
Palliative Care Unit, Department of Oncology, Hematology and BMT, University Medical Center Hamburg-Eppendorf, Martinistr. 52, 20246 Hamburg, Germany.
Med Sci (Basel). 2019 Mar 12;7(3):43. doi: 10.3390/medsci7030043.
Palliative and hospice care aims to improve quality of life of patients' relatives, but still little is known about their specific problems and needs. We present a comprehensive literature update. Narrative review to present an expert overview of peer-reviewed, English-written original research publications and reviews on psychosocial and existential problems, supportive needs as well as interventions for relatives during the patients' disease trajectory published between January 2017 and November 2018. A total of 64 publications were included. Relatives report high rates of psychological and existential distress, burden and psychological morbidity during the total disease trajectory of the patient. In addition, relatives report an alarmingly high number of unmet needs with information being the central issue. Relatives' problems and needs are part of complex systems influenced by various socio-demographic factors and patient⁻relatives-interactions and dependency between different psychological phenomena. First support interventions for relatives during disease trajectory have proven feasible and secondary data from randomized studies suggest beneficial effects of providing early palliative care also for relatives. Relatives should be addressed to a still larger extent in the daily practice of palliative and hospice care, thus further research to reveal more detailed systematic information is needed to improve relatives' psychological burden and quality of life.
姑息治疗和临终关怀旨在提高患者亲属的生活质量,但对于他们的具体问题和需求仍知之甚少。我们提供一份全面的文献综述。通过叙述性综述,对2017年1月至2018年11月期间发表的、经同行评审的、英文撰写的关于患者病程中亲属的心理社会和生存问题、支持需求以及干预措施的原创研究出版物和综述进行专家概述。共纳入64篇出版物。亲属报告称,在患者的整个病程中,心理和生存困扰、负担以及心理疾病的发生率很高。此外,亲属报告未满足的需求数量惊人,其中信息问题是核心。亲属的问题和需求是受各种社会人口因素、患者与亲属的互动以及不同心理现象之间的依赖性影响的复杂系统的一部分。在病程中对亲属的首次支持干预已被证明是可行的,随机研究的二级数据表明,为亲属提供早期姑息治疗也有有益效果。在姑息治疗和临终关怀的日常实践中,应更多地关注亲属,因此需要进一步研究以揭示更详细的系统信息,以减轻亲属的心理负担并提高其生活质量。