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Worth a Try? Describing the Experiences of Families during the Course of Care in the Neonatal Intensive Care Unit
Marin Arnolds1, Lucy Xu2, Patrick Hughes3
1Department of Pediatrics, University of Chicago Comer Children's Hospital, Chicago, IL; Department of Pediatrics, Evanston Hospital, NorthShore University Healthsystem, Evanston, IL.
Insights
Parents of infants in the neonatal intensive care unit (NICU) found their experience valuable, even with poor prognoses. They expressed gratitude for care received, regardless of their infant's outcome.
Area of Science:
- Neonatal intensive care
- Pediatric critical care
- Parental experience in healthcare
Background:
- Infants in the neonatal intensive care unit (NICU) often have poor or uncertain prognoses.
- Understanding parental perspectives on their NICU experience is crucial for improving care.
- Assessing parental satisfaction with care, irrespective of outcome, is vital.
Purpose of the Study:
- To explore how parents of critically ill neonates perceive their NICU experience.
- To determine if parents view their decisions and the care received as "worth it," regardless of the infant's outcome.
Main Methods:
- Semistructured, audiotaped interviews were conducted with parents of neonates in the NICU.
- Interviews occurred during hospitalization and 6 months to 1 year post-discharge or infant death.
- Thematic analysis was employed to analyze transcribed interview data.
Main Results:
- Common themes included realism about death, appreciation for the care team, and hope.
- Themes were consistent across institutions and between parents of surviving infants and those who died.
- Infrequent mentions of regret, futility, distrust, or infant pain were noted.
Conclusions:
- No families perceived the NICU care as futile; gratitude for care was prevalent.
- Parents viewed their infant's NICU stay favorably, even with poor prognoses or infant death.
Objective:
To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as "worth it," regardless of outcome.
Study Design:
Parents of eligible neonates at 2 institutions underwent audiotaped, semistructured interviews while their infants were still in the hospital and then again 6 months to 1 year after discharge or death. Interviews were transcribed and data were analyzed using thematic analysis. Two authors independently reviewed and coded each interview and discrepancies were resolved by consensus.
Results:
Twenty-six families were interviewed in the initial group and 17 families were interviewed in the follow-up group. The most common themes identified included realism about death (24 families), appreciation for the infant's care team (23 families), and optimism and hope (22 families). Overall themes were very similar across both centers, and among parents of infants who died and those who survived. Themes of regret, futility, distrust of care team, and infant pain were brought up infrequently or not at all.
Conclusions:
No family believed that the care being provided to their infant was futile; rather, parents were grateful for the care provided to their infant, regardless of outcome. Even in the case of a poor prognosis or the death of an infant, families in our study viewed their infant's stay in the neonatal intensive care unit favorably.
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