Providing Palliative Care to Neonates With Anencephaly in the Home Setting

Title

Providing Palliative Care to Neonates With Anencephaly in the Home Setting

Creator

Berry SN

Publisher

Journal of Hospice & Palliative Nursing

Date

2021

Subject

anencephaly; palliative care; perinatal bereavement; perinatal end-of-life; perinatal loss

Description

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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

August 2021 List

Collection

Citation

Berry SN, “Providing Palliative Care to Neonates With Anencephaly in the Home Setting,” Pediatric Palliative Care Library, accessed July 17, 2024, https://pedpalascnetlibrary.omeka.net/items/show/17621.