Joyce Brian T, Berman Rebecca, Lau Denys T
Division of Epidemiology and Biostatistics, School of Public Health, University of Illinois, Chicago, IL, USA.
Leonard Schanfield Research Institute, CJE SeniorLife, Chicago, IL, USA.
Palliat Med. 2014 Oct;28(9):1146-55. doi: 10.1177/0269216314535963. Epub 2014 May 22.
Managing medications is a complex responsibility of family caregivers caring for end-of-life patients. This study characterizes caregivers with and without formal/informal support managing medications for patients who receive end-of-life care at home.
To explore factors related to caregivers' support with managing medications for end-of-life home hospice patients.
A convenience-sampled, cross-sectional telephone survey.
SETTING/PARTICIPANTS: Computer-assisted telephone interviews were administered to 120 caregivers managing medications, who were referred by five Chicago-based home hospice services. We measured caregivers' additional formal (paid) and informal (unpaid) support with managing medications, and caregiver/patient socio-demographic, relational, and health characteristics.
While 47 (39%) had no additional support with managing medications, 27 (22.5%) had formal support, 37 (31%) informal, and 9 (7.5%) both. Seven caregivers (19%) with formal and 13 (31%) with informal support reported disagreements concerning treatment plans. Caregivers lacking formal support tended to be racial/ethnic minorities, live with the patient in their home, or report greater emotional burden. Caregivers with formal support tended to report higher education/income, lower mutuality, or care for a patient with over 6 months' hospice enrollment. Caregivers lacking informal support tended to be spousal caregivers, live with the patient, or have experience caring for another dying person.
Our study suggests that high proportions of caregivers may not have support managing medications for patients receiving hospice care at home. More research should examine whether the observed variations in obtaining support indicate disparities or unmet needs among caregivers. Disagreement about treatment with formal/informal support also warrants further investigation.
管理药物是临终患者家庭护理人员的一项复杂职责。本研究对在家中接受临终护理的患者中，有或没有正式/非正式支持来管理药物的护理人员进行了特征描述。
探讨与临终居家临终关怀患者药物管理护理人员支持相关的因素。
一项便利抽样的横断面电话调查。
设置/参与者：对120名管理药物的护理人员进行了计算机辅助电话访谈，这些人员由芝加哥的五家居家临终关怀服务机构推荐。我们测量了护理人员在药物管理方面额外的正式（付费）和非正式（无偿）支持，以及护理人员/患者的社会人口学、关系和健康特征。
虽然47名（39%）护理人员在药物管理方面没有额外支持，但27名（22.5%）有正式支持，37名（31%）有非正式支持，9名（7.5%）两者皆有。7名（19%）有正式支持和13名（31%）有非正式支持的护理人员报告在治疗计划上存在分歧。缺乏正式支持的护理人员往往是少数族裔，与患者同住，或报告有更大的情感负担。有正式支持的护理人员往往报告受教育程度/收入较高，相互依存度较低，或照顾临终关怀登记超过6个月的患者。缺乏非正式支持的护理人员往往是配偶护理人员，与患者同住，或有照顾另一名临终患者的经验。
我们的研究表明，很大比例的护理人员在为在家接受临终关怀的患者管理药物时可能没有得到支持。更多的研究应该考察在获得支持方面观察到的差异是否表明护理人员之间存在差距或未满足的需求。与正式/非正式支持在治疗上的分歧也值得进一步调查。
