Providing Palliative Care to Neonates With Anencephaly in the Home Setting

Area of Science:

• Medical Genetics
• Neonatal Care
• Palliative Care

Background:

• Anencephaly is a severe congenital anomaly often resulting in live birth despite a life-limiting prognosis.
• Limited guidance exists for home-based palliative care for neonates with anencephaly.
• Parental experiences navigating this complex situation are critical to understand.

Purpose of the Study:

• To analyze parental concerns and complications after bringing home a neonate with anencephaly.
• To identify gaps in healthcare professional training and support for families facing perinatal loss.
• To inform the development of better resources for bereaved parents.

Main Methods:

• Secondary analysis of qualitative data from a larger study on the impact of anencephaly on parents.
• Focus on parental experiences and challenges post-hospital discharge.
• Examination of hospice and palliative care services received.

Main Results:

• Parents reported feelings of isolation and difficulties managing grief, especially with partners.
• Key concerns included neonate transport, feeding, wound care, pain/seizure management, and end-of-life care.
• Hospice professionals lacked specialized perinatal bereavement training, and post-death follow-up was minimal.

Conclusions:

• Healthcare professionals require enhanced perinatal bereavement training for effective home palliative care.
• Establishing accessible local and online perinatal bereavement resources is crucial for parental healing.
• Improved support systems can better equip parents to navigate grief and loss associated with anencephaly.