PICU-CARE

Yearly, 5000 critically ill children in the Netherlands are admitted to a Paediatric Intensive Care Unit (PICU), of which 1400 to Rotterdam. Although the reason for PICU admission may vary, all children require support for vital organ failure, without which they might not survive. A PICU admission is therefore a very stressful experience for children and their parents/caregivers: the uncertainty of the child's clinical status and future, sights and sounds of the PICU, and parental role changes are major parental stressors. After discharge, a PICU admission has far-reaching consequences for returning to daily life of both parents and children. As studied by my consortium with KU Leuven, the long-term physical, cognitive, emotional, and social development of children were at risk. Moreover, parents were at risk for worse mental health, such as lower mental quality of life and developing symptoms of post-traumatic stress. It was recently found that worse parental mental health was significantly associated with worse parent-reported physical, emotional, and social outcomes in their child. This triggered my attention. The outcomes in critically ill children after PICU discharge should be seen as growth and development over time in which parents are the most important context factors. Worse parental mental health after PICU discharge is likely to influence the parent-child relationship, which impacts the child’s recovery and development, and vice versa. This is of societal impact due to the participation consequences and decreased life course opportunities in children and parents after PICU discharge. Therefore, focusing on parents and empowering them through parent-focused interventions during and after PICU stay is vital to ensure the best possible outcomes in critically ill children. A research gap is understanding individual parent and child risk for worse parent mental health, parent child relationship, and/or child development after PICU discharge. Known risk factors are parental age, gender, socioeconomic status, prior life events, psychosocial care use, coping, and peri-traumatic dissociation, and the child’s illness severity and length-of-PICU-stay. Currently, however, we lack multi factorial predictive models for parental and children’s outcomes that can be implemented as standard of-care. These models are likely to direct which targeted parent empowerment programs (PE-programs) should be provided during and after PICU stay to ultimately improve outcomes in critically ill children and their parents.

To develop a model that predicts individual parental mental health, parent-child interaction, and child development 1 year after PICU admission.

Prospective, longitudinal study with parent-reported and medical outcomes in both parents and their critically ill child assessed during T1) PICU stay (every 2 weeks), T2) between 24 hours before and 48 hours after PICU discharge, T3) 1-month, T4) 3-months, T5) 6-months, and T6) 12 months after PICU discharge, see figure 1. Assessment moments T4 and T6 are standard-of-care.

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Parents are asked to fill in questionnaires online (from home) at 5 follow-up moments. This will take approximately 10-20 minutes each time. There are no possible risks.