背景:儿童的死亡是家庭可能面临的最具破坏性的事件之一,导致显著的身体和心理发病率。在高收入环境中制定了丧亲支持计划,以满足这一需求。然而,对在中低收入国家(LMICs)实施丧亲计划知之甚少。这里,我们描述了为孩子死于癌症或其他灾难性疾病的父母实施丧亲计划。
方法:我们进行了回顾性分析,以描述基于医院的临终(EoL)护理和丧亲计划的实施。这个项目是分几个阶段开发的,包括对失去亲人的家庭的评估,发展计划指南,员工培训,该计划的试点,精致,和标准化。该计划是在2019年至2021年之间在非营利组织中开发的,哥伦比亚西南部的教学医院和转诊中心。
结果:开发了几种工具作为丧亲计划的关键组成部分:虚拟丧亲课程;EoL和丧亲交流与关怀的指导,记忆制作,和后续电话;慰问信模板,和团体支持研讨会。共有956名医护人员接受培训,向失去亲人的父母发出258次后续电话,对复杂悲伤的父母进行了150次个人心理随访,发出了79封慰问信,并举办了10次支助小组讲习班。确定并克服了挑战,例如有限的资源和人员,以及对死亡的文化认知。在2021年,该计划获得了医院的最佳人性化医疗战略奖。
结论:这项研究强调了在低收入国家的医院中为父母和家庭制定和实施EoL和丧亲护理计划的可行性。缺乏资源,工作人员,和培训是一些已确定的实施挑战。利用方法论工具使我们能够确定EoL和丧亲计划的促进因素和可交付成果。此模型为资源有限的设置提供了一个有价值的框架。
BACKGROUND: The death of a child is one of the most devastating events a family can face, resulting in significant physical and psychosocial morbidity. Bereavement support programs have been developed in high-income contexts to address this need. However, little is known about implementing bereavement programs in low-and middle-income countries (LMICs). Here, we describe the implementation of a bereavement program for parents whose children died due to cancer or other catastrophic illnesses.
METHODS: We conducted a retrospective analysis to describe the implementation of a hospital-based End of Life (EoL) care and bereavement program. This program was developed in several stages, including an assessment of bereaved families, development program guidelines, staff training, piloting of the program, refinement, and standardization. The program was developed between 2019 and 2021 in a nonprofit, teaching hospital and referral center for southwestern Colombia.
RESULTS: Several tools were developed as key components of the bereavement program: a virtual bereavement course; guidance for EoL and bereavement communication and care, memory making, and follow-up calls; a condolence letter template, and group support workshops. A total of 956 healthcare professionals were trained, 258 follow-up calls to bereaved parents were made, 150 individual psychological follow-ups to parents with complicated grief occurred, 79 condolence letters were sent, and 10 support group workshops were carried out. Challenges were identified and overcome, such as limited resources and staff, and cultural perceptions of death. In 2021, this program received an award by the hospital as the Best Strategy to Humanize Healthcare.
CONCLUSIONS: This study highlights the feasibility of developing and implementing EoL and bereavement care programs for parents and families within hospitals in LMICs. Lack of resources, staff, and training are some of the identified challenges to implementation. Utilizing methodological tools allows us to identify facilitator factors and deliverable outcomes of our EoL and bereavement program. This model provides a valuable framework for resource-limited settings.