Understanding and Supporting Parental Bereavement in the Neonatal Intensive Care Unit

• Author / Creator

  Lakhani, Jenna

• Death is no stranger to the neonatal intensive care unit (NICU). Extreme prematurity, congenital abnormalities, and other complexities that may occur surrounding pregnancy and delivery can turn what was hoped to be a very exciting moment in a family’s life into one of despair and grief. There are many infants that not only do not survive, but also have a medicalized death necessitating complex medical decision-making, weighing quality of life versus duration. Parental bereavement after the death of an infant in the NICU is a multifaceted and nuanced experience. Support from healthcare practitioners can have a significant impact on bereavement experiences in the short- and long-term, and identifying ways in which healthcare practitioners can support parents through this journey can ultimately help optimize their grief and bereavement.
  This thesis contains two main sections. The first section is a systematic review synthesizing empirical research with a goal to identify considerations that ought to guide our caregiving practices as healthcare practitioners to support parental bereavement. Data for this review was collected from studies identified in three databases (MEDLINE, Embase, CINAHL) and the search was limited to English-language studies describing parental bereavement in the NICU population from January 1990 to November 2021. Of 581 studies initially identified, 47 studies of varying geographic locations were included. Various themes surrounding healthcare support in parental bereavement were identified including ensuring the opportunity for parents to spend time caring for their child, understanding their perception of infant suffering, recognizing the impact of communication experiences with healthcare practitioners, and offering access to alternative means of support, all of which have been described as suboptimal. Parents generally want the opportunity to say goodbye to their infant in a private and safe space, be supported through their decision-making and be offered bereavement follow-up after loss. The systematic review identifies methods of support in parental bereavement based on first-hand parental experiences and routine implementation of these strategies may be beneficial in supporting parents through their bereavement after the loss of a child in the NICU.
  The second part of this thesis is a narrative inquiry study with an opportunity to learn from the stories of parents who chose palliative care for their child in a local NICU program. From a narrative ethics perspective, their stories speak to normative aspects of parenting, decision-making, and receiving medical care that affect their moral sense-making of their NICU experience as well as their longer term living with the loss of their child. Their stories expressed the importance of having meaningful time with their children, maintaining direct and frequent communication, managing uncertainty, and emphasizing compassion as methods of providing support to parents as they navigate their bereavement after losing an infant in the NICU.
  Through understanding bereaved parents’ experiences, both from the existing literature and based on first-hand experiences described through a local narrative inquiry study, how parents are supported through their bereavement clearly has a substantial and long-lasting impact. As healthcare practitioners, our role in providing support through communication, end-of-life care and bereavement support is essential to providing holistic care to critically ill infants and their families. Understanding how these practices can be improved will allow us to optimize the care we, as healthcare practitioners, can provide in the future.

• Subjects / Keywords

  • neonatal intensive care unit
  • bereavement
  • parental

• Graduation date

  Fall 2023

• Type of Item

  Thesis

• Degree

  Master of Science

• DOI

  https://doi.org/10.7939/r3-hbq6-2e38

• License

  This thesis is made available by the University of Alberta Libraries with permission of the copyright owner solely for non-commercial purposes. This thesis, or any portion thereof, may not otherwise be copied or reproduced without the written consent of the copyright owner, except to the extent permitted by Canadian copyright law.