Enhancing shared decision-making for infants in the intensive care unit: lessons from parents

Understanding parent preferences and experiences of decision-making can guide interventions to improve shared decision-making. We aimed to characterize how parents (1) incorporated values into decision-making, (2) evaluated clinician recommendations, and (3) experienced their decisional role.

In this qualitative study, we longitudinally interviewed parents of infants with neurologic conditions about their experiences making decisions for their child. Infants were eligible if they were (1) hospitalized in a critical care unit, (2) < 1 years old, (3) diagnosed with a neurologic condition and (4) expected to have a family conference to discuss goals of care or neurologic prognosis. Data were analyzed using a conventional content analysis approach.

In total, 123 interviews were conducted with 52 parents (n = 37 mothers, n = 15 fathers) of 37 infants. We identified 3 themes: (1) Clarifying and communicating values: Parents characterized challenges weighing multiple decision-relevant values. (2) Evaluating clinician recommendations: Parents appreciated clinician recommendations that incorporated their values. (3) Understanding decision-making roles: Parents typically preferred an active role; poor alignment between preferred and actual decision-making role sometimes precipitated conflict with the team.

We identified parent-informed opportunities to support shared decision-making for critically ill infants. Future interventions should target strategies to help parents clarify and communicate values, ensure that clinician recommendations acknowledge parent values, and identify parent-preferred decisional roles.

Existing data suggest gaps in how parents and clinicians partner in making decisions for critically ill infants. In this descriptive qualitative study, we characterized the parent experience of decision-making amidst critical illness. Parents shared challenges associated with weighing and communicating multiple, sometimes competing, decision-relevant values. Parents appreciated when clinicians offered recommendations that acknowledged their values. Parents preferred an active decision-making role; poor alignment between preferred and actual decision-making role sometimes led to conflict with the team. Future decision-making interventions should target strategies to help parents communicate and clarify values, ensure that clinician recommendations integrate parent values, and identify parent-preferred decisional roles.