Black Caregivers' Symptom Management, Cultural, and Religious Experiences With Home Hospice Care.
Black Caregivers' Symptom Management, Cultural, and Religious Experiences With Home Hospice Care.
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黑人护理人员的症状管理、文化和宗教体验与家庭临终关怀。
DOI：
10.1016/j.jpainsymman.2023.04.013
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发表时间：
2023
影响因子：
4.7
通讯作者：
Phongtankuel,Veerawat
中科院分区：
文献类型：
--
作者：
Park,Taeyoung;Sloan,DanettaH;Cruz-Oliver,DulceM;Reid,ManneyCary;Czaja,Sara;Adelman,RonaldD;Dignam,Ritchell;Phongtankuel,Veerawat
由于更大的护理责任和未得到满足的需求，非正式的黑人或非裔美国人 (Black/AA) 护理人员面临护理负担的高风险。然而，关于黑人/AA 护理人员在临终关怀入院后面临的挑战的研究很少。目的本研究旨在通过应用定性方法来了解黑人/AA 护理人员在家庭临终关怀期间的症状管理、文化和宗教挑战方面的经历，从而弥补这一知识差距。方法对接受家庭临终关怀患者的 11 名失去亲人的黑人/AA 护理人员进行小组讨论的数据进行了定性分析。结果护理人员最困难的是管理患者的疼痛、缺乏食欲，并在生命末期（EoL）下降。对于许多黑人/AA 护理人员来说，文化需求（例如，了解他们的语言、熟悉食物）并不被认为是最重要的。然而，人们担心心理健康方面的耻辱阻止了护理接受者分享他们的心理健康问题并寻求资源。许多护理人员依赖他们个人的宗教网络，而不是临终关怀牧师提供的服务。最后，护理人员报告在这一护理阶段的负担有所增加，但对整体临终关怀体验感到满意。结论我们的结果表明，针对黑人/AA 社区心理健康耻辱并减少护理人员因临终症状而感到痛苦的定制方法可能会改善黑人/AA 临终关怀护理人员的临终关怀结果。临终关怀精神服务应考虑提供与护理人员现有宗教网络互补的服务。未来的定性和定量研究应该检查这些结果对患者、护理人员和临终关怀结果的临床影响。
ContextInformal Black or African American (Black/AA) caregivers are at high risk for caregiver burden due to both greater caregiving responsibilities and unmet needs. However, there has been minimal research on the challenges Black/AA caregivers face after hospice enrollment.ObjectivesThis study seeks to address this knowledge gap by applying qualitative methods to understand Black/AA caregivers’ experiences around symptom management, cultural, and religious challenges during home hospice care.MethodsData from small group discussions with 11 bereaved Black/AA caregivers of patients who received home hospice care were qualitatively analyzed.ResultsCaregivers struggled most with managing patients’ pain, lack of appetite, and decline near end of life (EoL). Cultural needs (e.g., knowing their language, having familiarity with foods) were perceived as not on top of mind for many Black/AA caregivers. However, there was a concern of stigma around mental health preventing care recipients from sharing their mental health concerns and seeking resources. Many caregivers relied on their personal religious networks rather than services provided by hospice chaplains. Lastly, caregivers reported increased burden during this phase of caregiving but were satisfied with the overall hospice experience.ConclusionOur results suggest that tailored approaches that target mental health stigma in the Black/AA community and reduce caregiver distress around end of life symptoms may improve hospice outcomes among Black/AA hospice caregivers. Hospice spiritual services should consider offering services complementary to caregivers’ existing religious networks. Future qualitative and quantitative studies should examine the clinical implications of these results in terms of patient, caregiver, and hospice outcomes.