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Guilt and Regret Experienced by Parents of Children Born Extremely Preterm

Emilie Thivierge¹, Thuy Mai Luu², Claude Julie Bourque³

¹Department of Pediatrics, Centre Hospitalier Universitaire (CHU) Sainte-Justine, Université de Montréal, Montréal, Canada.

The Journal of Pediatrics

|December 4, 2022

Insights

About half of parents of extremely preterm infants experience regret regarding their neonatal intensive care unit stay. Guilt over preterm birth and self-care decisions were common regrets, highlighting areas for improved parental support.

Area of Science:

Neonatal Medicine
Parental Psychology
Perinatal Health

Background:

Infants born extremely preterm (<29 weeks gestational age) face significant health challenges.
Parental decision-making during neonatal intensive care is complex and can lead to emotional distress.
Understanding parental regret is crucial for improving support and care for families with extremely preterm infants.

Purpose of the Study:

To investigate decisional regret among parents of infants born extremely preterm.
To identify neonatal, pediatric, and parental factors associated with parental regret.

Main Methods:

A mixed-methods approach was used involving 248 parents of infants born <29 weeks gestational age.
Data collection included hospital record reviews (morbidities, care discussions) and a direct question about decisional regret.
Participants were parents of children aged 18 months to 7 years attending neonatal follow-up.

Main Results:

54% of parents reported no regret regarding their infant's neonatal intensive care unit (NICU) stay.
Among parents with regret (n=113), common themes included guilt (35%), self-care decisions (28%), and parental role involvement (20%).
No regret was reported concerning life-and-death decisions; impairment, gestational age, and care level decisions were not associated with regret.

Conclusions:

Nearly half of parents of extremely preterm infants experience regret related to their NICU experience.
Addressing parental guilt and regret, particularly concerning birth and early care decisions, is essential.
Further research and support systems should focus on minimizing these sources of distress for parents.

Read full analysis

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:

bioethics decision regret decision-making ethics family integrated care guilt high-risk pregnancy neonatology neurodevelopmental impairment palliative care parental perspectives parental role pediatrics prematurity regret self-care withholding and withdrawing life-sustaining interventions

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