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

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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. IMPACT: 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.

Duke Scholars

Author Kathryn IIonka Pollak Population Health Sciences

Author Monica Elizabeth Lemmon Pediatrics, Neurology