Palliative Care Unit, Department of Oncology, Hematology and BMT, University Medical Center Hamburg-Eppendorf, Martinistr, 52 20246, Hamburg, Germany.
Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Support Care Cancer. 2021 Mar;29(3):1303-1315. doi: 10.1007/s00520-020-05565-z. Epub 2020 Jul 6.
This study aimed to investigate the supportive care needs of family caregivers (FCs) of advanced cancer patients and their support service use at the beginning of specialist inpatient palliative care (SIPC), near the patient's death, and during bereavement.
FCs reported their needs using the Family Inventory of Needs (FIN), along with their utilization of psychosocial and bereavement support services at the beginning (N = 232) and 6-9 months after SIPC (N = 160).
At the beginning of SIPC, mean of 16.9 of 20 needs were reported to be highly important, and 12.2 were reported to be met. At the time of the patient's death, 16.8 needs were highly important, and 13.8 were met. At both time points, the highest ranked need was related to information about changes in the patient's condition (100% vs. 99%), and the most frequently unmet need was related to feeling hope (73% vs. 71%). Multivariate linear regression analysis revealed a low education level to be consistently related to a greater number of highly important needs. Higher satisfaction with care and better social support was related to a greater number of met needs. Twenty-five percent of FCs had accessed at least one psychosocial support service prior to SIPC, and 30% had done so during bereavement. Among non-users of support services, > 75% indicated sufficient informal support as a barrier to service use.
The findings offer a useful guide for adequately addressing FCs' needs in an effort to optimize FC support. However, only a subgroup of the FCs used support services. Better information and provision of tailored services might improve FCs' situations in the future.
本研究旨在调查晚期癌症患者家属照顾者（FCs）的支持性护理需求，以及他们在专科住院姑息治疗（SIPC）开始时、临近患者死亡时和丧亲期间对心理社会和丧亲支持服务的使用情况。
FCs 使用家庭需求清单（FIN）报告他们的需求，同时报告他们在 SIPC 开始时（N=232）和 6-9 个月后（N=160）使用心理社会和丧亲支持服务的情况。
在 SIPC 开始时，20 项需求中有 16.9 项被认为非常重要，有 12.2 项得到满足。在患者死亡时，有 16.8 项需求被认为非常重要，有 13.8 项得到满足。在这两个时间点，排名最高的需求是与患者病情变化的信息有关（100%对 99%），最常未满足的需求是与感到希望有关（73%对 71%）。多变量线性回归分析显示，较低的教育水平与更多的高度重要需求相关。对护理的满意度更高和更好的社会支持与更多的满足需求相关。25%的 FCs 在 SIPC 之前至少使用过一种心理社会支持服务，30%在丧亲期间使用过。在未使用支持服务的人中，超过 75%的人表示足够的非正式支持是阻碍服务使用的一个因素。
这些发现为充分满足 FCs 的需求提供了有用的指导，以努力优化 FC 的支持。然而，只有一小部分 FCs 使用了支持服务。更好的信息和提供定制的服务可能会改善未来 FCs 的情况。
