(802) Conceptualizing Post-Intensive Care Syndrome: A Qualitative Study of the Family Perspective

Introduction: Post intensive care syndrome in pediatrics acknowledges that PICU admission can affect a child’s long-term physical, cognitive, emotional, and social health as well as the family’s social health. More work is needed to understand the nuances of families’ experiences, unique impacts on families with high baseline social needs, and experiences of families of patients with shorter, yet equally impactful PICU admissions. This qualitative study explored the question of how families with low socioeconomic status (SES) experience the social aftermath of their child’s PICU admission.

Methods: We conducted a qualitative interview study using reflexive thematic analysis. We purposefully sampled caregivers of PICU patients with low SES and interviewed them 1-2 months after discharge. Data collection and analysis were iterative processes. We reached thematic sufficiency after 20 interviews.

Results: Families described stressors related to their child’s ongoing medical needs, shifting routines, financial concerns, and family members’ struggles with mental health and post-traumatic responses. Related themes were: “Even after leaving the hospital, it’s still hard”; and “There are so many things to figure out when raising a child, especially a child with sickness.” Families also described sources of resilience, including their sense of purpose in caregiving, their community, and maintaining a sense of self. Related themes were: Building New Routines - "It's a regular day for me because NOW I'm used to it”; “I had to find my Supercape"; and "I had to figure out how to find my sense of self." Families noted they feel “Both Hope and Fear.” They also identified ways to improve healthcare delivery, including providing anticipatory guidance, not rushing discharge, and focusing on communication.

Conclusions: Families described social stressors and sources of resilience after PICU admission. Family perspectives should inform further study of interventions to facilitate access to financial resources, support family mental health, and ensure adequate family preparation for discharge.