Caregiver Perspectives on Provider Continuity During Prolonged PICU Hospitalizations: A Single-Center Qualitative Study, 2021-2022

Abstract

Objectives: To improve continuity of care, some PICUs assign a continuity attending (CA) physician for children with prolonged hospitalizations. Little is known about how this intervention impacts familial caregivers' experiences. The objective of this study was to provide in-depth descriptions of family perspectives about continuity of care during prolonged PICU hospitalizations for children with and without a PICU CA.

Design: Qualitative semi-structured interviews.

Setting: Single center cohort, from October 2021 to December 2022, at an academic PICU in the United States.

Participants: Familial caregivers (n = 39) of critically ill children hospitalized in the PICU for greater than or equal to 14 days were purposively sampled, stratified by group: 18 with a PICU CA and 21 without a PICU CA.

Interventions: None.

Measurements and main results: Semi-structured interviews were audio recorded, transcribed, coded, and analyzed in the context of the continuity of care model using a realist thematic approach. Familial caregivers described six themes related to relational, informational, and management continuity: 1) familiar providers who demonstrate empathy for the child improve family members' comfort and trust (Relational); 2) providers who know and use a child's baseline health status to inform clinical decision-making alleviate family members' stress (Relational, Management); 3) information loss during care team transitions frustrates families (Informational, Management); 4) known providers enhance caregiver communication (Informational); 5) familiar providers who value a family's expertise about their child's care (Relational, Management); and 6) take responsibility for the child's long-term care plan (Management) decrease parental stress.

Conclusions: As PICU patient medical complexity and length of stay increase, familial caregivers' needs transition from understanding day-to-day management to navigating care team transitions and partnering with providers to develop long-term care plans. Targeted interventions to increase provider continuity that consider relational, informational, and management continuity are needed to optimize patient outcomes and family experiences.