Currie Erin R, Johnston Emily E, Bakitas Marie, Roeland Eric, Lindley Lisa C, Gilbertson-White Stephanie, Mack Jennifer
The University of Alabama at Birmingham, Birmingham, AL, USA.
Massachusetts General Hospital Cancer Center, Boston, MA, USA.
J Palliat Care. 2022 Apr;37(2):87-92. doi: 10.1177/08258597211001991. Epub 2021 Mar 23.
The quality of palliative and end-of-life (EOL) care for adolescents and young adults (AYAs) with cancer remains largely unknown. To describe caregivers of AYA cancer decedents perspectives' on EOL care quality related to EOL care communication. Cross-sectional observational study. Caregivers (n = 35) of AYAs who died from a cancer diagnosis from 2013-2016 were recruited from 3 U.S. academic medical centers. Caregiver participants completed structured surveys (FAMCARE scale and the Toolkit After-Death Bereaved Family Member Interview) by telephone to gather perceptions of quality of EOL care of their AYA cancer decedents. Caregivers reported unmet needs regarding preparation for the time of death (50%), the dying process (45%) and unmet spiritual/ religious needs (38%). Lowest quality of EOL care scores related to communication and emotional support. Our findings call for special focus on providing information about what to expect during the dying process and adequately addressing spiritual and religious preferences during EOL care for AYAs.
对于患有癌症的青少年和青年（AYA）而言，姑息治疗和临终关怀（EOL）的质量在很大程度上仍不为人知。为了描述AYA癌症逝者的照料者对与EOL护理沟通相关的EOL护理质量的看法。横断面观察性研究。从美国3家学术医疗中心招募了2013年至2016年因癌症诊断死亡的AYA的照料者（n = 35）。照料者参与者通过电话完成结构化调查（FAMCARE量表和死亡后丧亲家庭成员访谈工具包），以收集他们对AYA癌症逝者EOL护理质量的看法。照料者报告了在死亡时间准备（50%）、临终过程（45%）和未满足的精神/宗教需求（38%）方面未得到满足的需求。与沟通和情感支持相关的EOL护理质量得分最低。我们的研究结果呼吁特别关注在AYA的EOL护理期间提供有关临终过程预期的信息，并充分满足其精神和宗教偏好。
