(808) Perspectives of Caregivers in the ICU Concerning Knowing Their Child/Family: A Grounded Theory Study

Introduction: Building trusting patient/family-team relationships is essential to providing high quality care. Establishing trusting relationships requires shared decision making and effective communication, valuing the caregiver’s perspective and role in their child’s care. Literature has shown high rates of variability in both communication and valuing caregivers’ involvement within the pediatric intensive care setting. There is limited data addressing the primary needs of a caregiver from their perspective as it pertains to their child’s care within the pediatric intensive care unit (PICU). Our study aims to evaluate this area by exploring what caregivers would 1) like the care team to known about their child and 2) like the care team to know about their family.

Methods: Semi-structured interviews were conducted from March-May 2024 using purposeful sampling to recruit caregivers of children admitted to the PICU for > 24 hours. Using a constructivist grounded theory approach, data were analyzed simultaneously with data collection. Two researchers conducted initial coding independently; intermediate and advanced coding were conducted by researchers together. Theoretical saturation was reached when no new codes were identified.

Results: A total of 28 interviews were conducted. For the first aim, three categories emerged, care, trust, and identity. For the second aim, three categories emerged, coping, trust, and identity. Additionally, 14 sub-categories were identified among both aims. The broad categories were incorporated into a final overarching theory regarding the potential application of these data to create authentic connections with families.

Conclusions: Our study highlights caregiver’s perspectives regarding what they wish the PICU team to know about their child and family within the pediatric intensive care setting. We theorize that the care team can harness these data, apply the concept of “engaged curiosity” with children and families, and thereby build trusting, authentic relationships with families. While our study is limited to a single center, the data arising from caregivers may resonate with other caregivers in a pediatric intensive care unit.