The Caring Intensively Study: Three-Year Follow-Up Findings From a Mixed Methods Study of Children's Psychological and Behavioral Responses After PICU Hospitalization.

Abstract

Objectives: To report the 3-year follow-up results of the "Caring Intensively" study, which examined children's psychological and behavioral responses after PICU hospitalization.

Design: Prospective mixed methods, concurrent triangulation design. In the quantitative arm, study group (SG) and comparison group (CG) children and their parents were administered a battery of measures assessing psychological and behavioral outcomes, and telephone survey data were collected 6 weeks, 6 months, 1, 2, and 3 years post-discharge. In the qualitative arm, SG interviews were conducted 1 and 3 years post-discharge. Recruitment 2014-2018, with follow-up completed 2021.

Setting: SG recruited from PICUs of three Canadian quaternary care pediatric hospitals; CG from two hospitals' ear, nose, and throat (ENT) day surgery units.

Patients: Age (3-12 yr) and gender-matched PICU children (SG, 158) or day surgery ENT children (CG, 169) and their parents were recruited; 62% of families completed the study (SG, 97; CG, 106). Selected SG families were interviewed at year 1 (17 families, 30 participants) and year 3 (14 families, 27 participants).

Interventions: None.

Measurements and main results: No group differences on primary or secondary outcomes. Both groups reported emotional and behavioral changes in children via telephone survey; however, group findings diverged on their nature and attribution. SG parents attributed changes primarily to PICU hospitalization; CG parents attributed changes to other life events. At year 3, 40.3% of SG parents still reported negative emotional and behavioral changes in children suggesting a chronic trajectory of recovery. Qualitative interview findings converged with SG survey responses, reflecting the adaptive and relational challenges confronting children and families.

Conclusions: This study highlights children's emotional and behavioral responses over the 3 years post-PICU and the need to study child recovery within the family. These findings contribute to our understanding of the nature and duration of trajectories of recovery and emphasize the importance of providing clinical follow-up and prioritizing family-identified outcomes in future research.