Conceptualizing Post-Intensive Care Syndrome: A Qualitative Exploration of the Family Experience

BACKGROUND: After a pediatric intensive care unit (PICU) admission, children can experience long-term effects on their growth and development, termed post-intensive care syndrome in pediatrics (PICS-p). The impact of a PICU admission on a family's social health is understudied, especially for families with low socioeconomic status (SES) who may be at greater risk for PICS-p. This study explored how families with low SES experience the social aftermath of a PICU admission, specifically the impacts on aspects of social health, including routines, relationships, and finances. METHODS: We performed a prospective cohort study using a constructivist approach to qualitative research. We purposefully sampled and interviewed primary caregivers of patients with low SES requiring PICU admission 1 to 2 months after hospital discharge. Consistent with reflexive thematic analysis, we created inductive codes, developed themes from these codes, and used an existing family adaptation model to organize themes. RESULTS: We interviewed 20 families (17 mothers, 1 foster mother, 1 grandmother, and 1 father) and constructed the following themes: (1) families had to adjust to achieve a balance, even before the PICU admission; (2) a PICU admission is a critical disruption; and (3) families had to actively work to adapt after PICU admission by increasing supports, decreasing demands, and altering their attitudes. CONCLUSIONS: PICU admission can be a critical disruption requiring families to adapt to a new normal. Building on existing literature, we present the Family Adjustment and Adaptation to Critical Illness model. Future efforts should work to understand and optimize families' ability to increase supports and decrease demands.