A recent systematic review from Canada explored parental experiences and bereavement in the NICU, shedding light on the challenges of infant loss. Healthcare professionals are crucial in supporting parents, which can be done by facilitating meaningful moments and using clear communication. Strategies like shared decision-making, parental involvement in activities, and bonding time were also found to help with grief. Other resources like spiritual care and counselling are also essential. Understanding parents’ needs in neonatal loss can help healthcare professionals with their supportive role.
Unfortunately, despite significant advances in neonatal care in the last decade, not all NICU patients survive. For parents, losing their child causes severe emotional turmoil. The ethical decisions made during end-of-life care in the NICU can profoundly impact parents’ grief and bereavement experiences. Grief is a common emotional response, characterised by a range of emotions such as sadness, disappointment, shame, guilt, suffering, and helplessness. Bereavement, a long-term process, involves parents coming to terms with the loss and finding meaning in their child’s life.
Parental experiences in the NICU, including physical separation from the baby, interruptions in their parental role, and other losses, shape their bereavement process. Therefore, healthcare professionals are crucial in supporting parents through meaningful moments, encouraging memory-making, and engaging in effective and honest communication. Understanding these experiences is very important to provide appropriate support to parents.
A systematic review from Canada aimed to summarise empirical studies on parental bereavement in the NICU, and to identify considerations that healthcare professionals can use to guide their caregiving practices and bereavement support. The review included findings from 47 empirical studies of varying geographic locations conducted between 1990 and 2021.
Grief was found to be predominant among parents. It often evolved through stages, including denial, anger, bargaining, depression, and acceptance, although these stages would not necessarily occur in a linear fashion. More postnatal bonding times with the baby as well as shared decision-making between parents and healthcare providers were associated with less grief for parents. Parents also highly valued the support provided by healthcare professionals, such as facilitating meaningful moments and memory-making. Opportunities for parental involvement in their infant’s care, such as bathing, dressing, and other parental responsibilities, as well as the provision of photographs and hand/foot moulds, were also appreciated by parents and helped them navigate the grieving process.
Additionally, the study identified clear and compassionate communication that respects the individual experiences and values of the family to be a positive factor during challenging times. Parents were also found to often perceive more suffering in their babies than healthcare profes
sionals, highlighting the need for sensitive and appropriate communication. Parents generally want the opportunity to say goodbye to their infant in a private and safe space.
The study also explored various supports parents found beneficial in the NICU and beyond. Spiritual care, palliative care consultation, and tailored education for healthcare providers were also valuable resources. Other beneficial resources were professional counselling, support groups, and community physicians to address the increased risks of physical health concerns, depression, anxiety, and post-traumatic stress.
By understanding and addressing the unique needs and experiences of parents facing neonatal loss, healthcare professionals can enhance the support they provide to families during this challenging time. Further research is encouraged to understand other long-term impacts of neonatal loss on parents’ mental health and the effectiveness of specific interventions.
Paper available at: Journal of Palliative Care
Full list of authors: Jenna Lakhani, Cheryl Mack, Diane Kunyk, Janice Kung, and Michael van Manen
Have a look at the EFCNI-standards in the field of “Ethical decision-making & palliative care”