Thivierge É, Luu TM, Bourque CJ, Duquette LA, Pearce R, Jaworski M, Barrington KJ,  Synnes A, Janvier A. (2023). Guilt and regret experienced by parents of children born extremely preterm. The Journal of  Pediatrics. 257: 113268

Abstract

Objectives
To explore decisional regret of parents of babies born extremely preterm and analyze neonatal, pediatric, and parental factors associated with regret.

Study design
Parents of infants born <29 weeks of gestational age, aged between 18 months and 7 years, attending neonatal follow-up were enrolled. Hospital records were reviewed to examine morbidities and conversations with parents about levels of care. Parents were asked the following question: “Knowing what you know now, is there anything you would have done differently?” Mixed methods were used to analyze responses. Results In total, 248 parents (98% participation) answered, and 54% reported they did not have regret. Of those who reported regret (n = 113), 3 themes were most frequently invoked: 35% experienced guilt, thinking they were responsible for the preterm birth; 28% experienced regret about self-care decisions; and 20% regretted decisions related to their parental role, generally wishing they knew sooner how to get involved. None reported regret about life-and-death decisions made at birth or in the neonatal intensive care unit. Impairment at follow-up, gestational age, and decisions about levels/reorientation of care were not associated with regret. More mothers reported feeling guilt about the preterm birth (compared with fathers); parents of children with severe lesions on ultrasonography of the head were less likely to report regret. Conclusions Approximately one-half of the parents of infants born extremely preterm had regrets regarding their neonatal intensive care unit stay. Causes of regret and guilt should be addressed and minimized. Keywords : decision-making; pediatrics; neonatology; parental perspectives; bioethics;ethics; palliative care; prematurity; decision regret; regret; guilt; high-risk pregnancy; self-care; parental role; family integrated care; withholding and withdrawing; life-sustaining interventions; neurodevelopmental impairment

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