Abstract
Background: Post-Intensive Care Syndrome in paediatrics (PICS-p) encompasses physical, cognitive, social, and emotional health impairments in children, as well as psychological challenges in parents, following PICU discharge. While PICS is well-studied in adults, research on its long-term effects in the paediatric population is limited, and the influence of ethnicity remains unexplored.Aim: The aim of this study was to explore and understand the long-term health outcomes and experiences of children and their parents during the first six months following discharge from the paediatric intensive care unit (PICU), and to examine the influence of ethnicity.
Methods: The SHACK study was informed by a mixed-method systematic review of 16 papers examining the impact of ethnicity on parental long-term health outcomes. The study used a single-centre prospective longitudinal cohort design with a qualitative component to provide a deeper understanding of participants' experiences. Data were collected at five time-points: baseline, at PICU discharge, and at 1-, 3-, and 6-months post-discharge. Serial semi-structured interviews with parents were conducted at 1- and 6-months post-discharge to complement the quantitative findings. Children and parents’ outcomes were measured by validated instruments related to the PICS-p domains: physical, cognitive, emotional and social health outcomes.
Findings: The mixed-method systematic review highlighted worse outcomes in parents from minority groups and a lack of diversity, with underrepresentation of ethnic minority groups. The SHACK study included 135 children and 128 parents. Trajectory modelling classified 17 (13%) children into the mild group, 103 (76%) into moderate group, and 15 (11%) into severe group. Children in the mild and moderate groups generally returned to their baseline health at 6-month post-PICU discharge. Children in the severe group showed worst outcomes compared to their baseline, were older, and had pre-existing illnesses. Trajectory modelling of parent participants showed that 54 (42%) and 68 (53%) in the mild and moderate groups recovered to their baseline health, while six (4%) in the severe trajectory reported worse outcomes at 6-month post-PICU discharge. A total of 28 and 22 parents participated in sequential interviews at 1- and 6-month post-PICU discharge. The overarching theme, Regaining Normalcy, included, the emotional and social domains aligned with the PICS-p framework. A new third domain, Transitional Health, was added to capture unique aspects of the recovery process.
Conclusion: This study adds new knowledge into the understanding of long-term health outcomes of children and their parents following childhood critical illness. The SHACK study is grounded in the PICS-p framework and enhanced by the introduction of a new Transitional Health theme, which provides further insights into the recovery process. The findings highlight the complexity of post-PICU recovery as a non-linear process, with regaining normalcy being a central theme. Targeted intervention for the most vulnerable may improve post-PICU recovery.
| Date of Award | 2025 |
|---|---|
| Original language | English |
| Supervisor | Jos Latour (Director of Studies (First Supervisor)), Matt Carey (Other Supervisor), Jan Hau Lee (Other Supervisor) & Joseph C. Manning (Other Supervisor) |