Parent Preferences and Experiences in Advance Care Planning in the Neonatal Intensive Care Unit

Parent Preferences and Experiences in Advance Care Planning in the Neonatal Intensive Care Unit

Lin M; Williams D; Vitcov G; Sayeed S; Decourcey DD; Wolfe J; Cummings C

American Journal of Perinatology

2024

quality of life; infant; social support; caregiver; terminal care; major clinical study; follow up; psychiatrist; cost effectiveness analysis; cross-sectional study; health care cost; neonatal intensive care unit; emotional stress; human; article; female; controlled study; palliative therapy; resuscitation; advance care planning; questionnaire; intensive care unit; patient preference; Hospital Anxiety and Depression Scale

Objective: Our objective was to evaluate the preferences and experiences of bereaved parents around advance care planning (ACP) in the neonatal intensive care unit (NICU). Study design: Single-center cross-sectional survey of bereaved parents who experienced the death of a child in the Boston Children's Hospital NICU between 2010 and 2021 was carried out. Chi-square, Fisher's exact, Fisher Freeman Halton, and Wilcoxin rank sum tests were used to evaluate differences between parents who did and did not receive ACP. Results: Out of eligible parents, 40 out of 146 (27%) responded to our survey. Most parents (31 out of 33, 94%) rated ACP as being very important and 27 out of 33 (82%) reported having ACP discussions during their child's admission. Parents preferred initial ACP discussions to occur early in their child's illness trajectory with members of the primary NICU team, with most parents' experiences aligning with these preferences. Conclusion: Parents value ACP discussions suggesting a further role for ACP in the NICU. Key points: · NICU parents value and participate in advance care planning discussions. · Parents prefer advance care planning with members of the primary NICU, specialty, and palliative care teams. · Parents prefer advance care planning early in their child's illness trajectory.

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