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Paediatric Palliative Care Service, The Women’s and Children’s Hospital, Adelaide

Background Neonatal palliative care (NPC) is a holistic model of care from the time of diagnosis of a life limiting condition, that focuses on the infant’s quality of life and support of the family (Catlin & Carter, 2002; Kain & Chin, 2020). Learning directly from bereaved parents’ lived experience has the potential to improve infant care, better support family-centred care and decision making, and address parental distress (Quinn & Gephart, 2016). There is a paucity of interview based qualitative studies of bereaved parent experiences of neonatal palliative care in NICU.

Study Objectives To explore bereaved parents’ experiences of neonatal palliative care in the Neonatal Intensive Care Unit (NICU), which aims to inform and improve the delivery of family-centred palliative care.

Method An exploratory qualitative design was employed using a phenomenology methodology. Parents of an infant who had died in the NICU at the Women’s and Children’s Hospital (WCH), Adelaide, and were 6–12 months bereaved participated in semi-structured interviews to explore experiences. Interviews via videoconferencing or phone call were audio-recorded and transcribed. Inductive thematic analysis was conducted to generate themes.

Results Six parents (four mothers and two fathers) participated in five interviews. Four themes characterised parents’ experiences of neonatal palliative care: hope and fragility, decision making role and responsibility, ‘taking… in’ of their baby, and being together and separate. Parents maintained hope when faced with uncertainty and infant fragility. A high priority was placed on decision making regardless of the scope of options, opportunities for deep infant connection and sharing the infant with family. Families wanted to be together, but many factors contributed to separation.

Discussion By elucidating parents’ most pertinent experiences of neonatal palliative care the findings from this study can inform family-centred care delivered by staff. Clinicians can recognise hope as a preference and coping strategy for parents to manage uncertainty. Decision making is integral to the parent role and parent autonomy, so clinicians should empower, collaborate and support parents in decision making, regardless of the scope of choices. Given the central importance to parents of ‘taking…in’ their infant and family visiting, these opportunities should be actively facilitated by staff interactions, department practices, and physical spaces. Similarly, factors causing separation between parents and infants should be identified and minimised where possible, and may be facilitated by palliative models of care.

References

1. Catlin A, Carter B. Creation of a neonatal end-of-life palliative care protocol. Journal of Perinatology 2002;22(3):184–195. https://doi.org/10.1038/sj.jp.7210687

2. Kain VJ, Chin SD. Conceptually redefining neonatal palliative care. Adv Neonatal Care 2020;20(3):187–195. https://doi.org/10.1097/ANC.0000000000000731

3. Quinn M, Gephart S. Evidence for implementation strategies to provide palliative care in the neonatal intensive care unit. Adv Neonatal Care 2016;16(6):430–438. https://doi.org/10.1097/ANC.0000000000000354