Shandeigh N. Berry, PhD, RN, CNOR, is assistant professor, College of Arts & Sciences, Saint Martin's University, Lacey, Washington.
J Hosp Palliat Nurs. 2021 Aug 1;23(4):367-374. doi: 10.1097/NJH.0000000000000770.
Parents who choose to carry a pregnancy complicated by a life-limiting congenital anomaly such as anencephaly may give birth to a live neonate and be discharged home. Very little guidance is available to health care professionals providing palliative care in the home setting to this population. This article is a secondary analysis that discusses the concerns and complications that parents experienced after bringing home a neonate with anencephaly. Each parental experience is a qualitative descriptive summary extracted from a larger study on the impact of anencephaly on parents. Parents reported feeling alone in their grief and struggled with their partners' differing style of grief. Parents' primary concerns after hospital discharge included transporting their neonate home, feeding their neonate, changing cranial defect dressings, managing pain and seizures, addressing uncertainty, and facilitating a good death. All parents received hospice services from health care professionals without perinatal bereavement training or experience. Only 1 woman received follow-up care after the death of her son. Preparing and educating health care professionals providing hospice and palliative services with perinatal bereavement training may be beneficial. Identifying and allocating local and online perinatal bereavement resources may provide parents with the tools and support necessary to facilitate healing after perinatal loss.
选择孕育患有无脑畸形等危及生命的先天性异常的妊娠的父母可能会产下活产新生儿并出院回家。为这一人群在家中提供姑息治疗的医护人员几乎没有任何指导。本文是对父母在将无脑畸形新生儿带回家后面临的问题和并发症的二次分析。每个父母的经历都是从一项关于无脑畸形对父母影响的更大研究中提取的定性描述性总结。父母报告说，他们在悲痛中感到孤独，并且与伴侣的悲痛风格不同而挣扎。父母出院后的主要关注点包括将新生儿带回家、喂养新生儿、更换颅骨缺陷敷料、管理疼痛和癫痫发作、处理不确定性以及促进良好的死亡。所有父母都从没有围产期丧亲培训或经验的医护人员那里获得了临终关怀服务。只有 1 位女性在儿子去世后接受了后续护理。为提供临终关怀和姑息治疗的医护人员提供围产期丧亲培训和教育可能会有所帮助。确定和分配当地和在线围产期丧亲资源可能为父母提供必要的工具和支持，以促进围产期损失后的康复。
