How PICOLO aligns with the Core Brain Story
Major advances in pediatric intensive care (PICU) have led to increased child survival. However, the long-term outcomes among these children following PICU discharge are a concern. Most children admitted to PICU are under five years of age, and the stressors of critical illness and necessary interventions can affect their ability to meet crucial developmental milestones. Understanding the neuroscience of brain development and vulnerability can inform PICU clinicians of new ways to enhance and support the care of these most vulnerable children and families. This review paper first explores the evidence-based neuroscience principles of brain development and vulnerability and the impact of illness and care on children’s brains and ultimately wellbeing. Implications for clinical practice and training are further discussed to help optimize brain health in children who are experiencing and surviving a critical illness or injury.
Between birth and five years of age, children undergo substantial physical, cognitive, and psychosocial development which can be greatly impacted by critical illness. Delays in development during this critical period can have long-lasting effects on functioning that can persist into adulthood. Cumulative morbidities are increasingly being recognised in survivors of the Paediatric Intensive Care Unit (PICU), which can adversely affect children’s development across a range of domains.
Paediatric intensive care units (PICUs) provide 24-hour care and treatment for babies, children and adolescents who are seriously injured, have a critical or life-threatening illness or have undergone major surgery. The PICU population comprises children suffering trauma, sepsis, respiratory illness, cardiac surgery, and much more. Despite diverse diagnoses, one thing they all have in common is the vital need for life-saving and intense respiratory, circulatory and medical support. Sixty per cent of these children are aged under two years, therefore critical illness is experienced during a period of significant brain development. Undergoing stress during this vulnerable period can impact cognitive and emotional development resulting in difficulties in school and work performance and mental health. Each year, over 12,000 children are admitted to the PICU and, despite survivors being ten-fold that of paediatric cancer diagnoses children are discharged into a medical desert. PICU survivors rarely receive follow-up or support, nor do we understand their journey and recovery. These children represent the invisible epidemic.
PICU survival has increased substantially over the past three decades, with a current survival rate, of 97.5%. However, initial studies indicate that up to 30% of survivors may experience long-term impairments in physical, cognitive, emotional, and social health, known as Post Intensive Care Syndrome – Paediatrics (PICSp)(Figure 1). PICSp can significantly impact child development, augmenting the burden of disease on family and society, which in turn impact school, social performances and activities of daily living, with additional lifetime risks for employment, family functioning, and quality of life. PICSp is believed to be caused by underlying conditions, brain and physical injury due to the severe disease and organ failure, as well as potentially neurotoxic treatments, such as sedation. While some PICU survivors will experience significant or devastating irreversible and often obvious neurodevelopmental disability (eg. severe head injuries, stroke, amputations, spinal cord injuries), thousands of children are estimated to suffer from subtle, discreet, but functionally significant challenges which go undetected until the social and school pressures of later childhood. These consequences can include clusters and difficulties in language and cognitive delay, neuropsychological deficits, learning disabilities and behavioural problems: all essential ingredients of school readiness and strong predictors of later academic success. Despite the growing awareness of the challenges associated with PICU survivorship, these consequences remain invisible to healthcare and education providers alike, and resources or standardised, routine follow up of following discharge to monitor outcomes, guide early interventions, or assess school readiness are lacking.
Figure 1: Post Intensive Care Syndrome – Paediatrics (PICSp)
Although we have some understanding of disease specific cohorts, our understanding of the epidemiology and risk factors of PICSp remains nascent. To date, outcome assessments have been crude, identifying only the small percentage of most devastating of functional outcomes. Improved screening tests are needed to help to identify children at highest risk, but also those whose impairments are subtle, yet challenging. Long-term follow-up of patients by PICU teams is rare, and the use of multi-disciplinary follow-up programs, even more so. We need to do better. We can do better.
Recent government and society strategic documents highlight the urgent need for targeted action for PICU survivors, particularly following insights from the COVID-19 pandemic. But effective action requires a clear understanding of what, why and how, and this is still lacking in paediatrics.
Embracing Brain Science in the PICU
Collaboration and communication are essential to enable parents and clinical staff to interact with young children who have experienced a critical illness successfully, and to inform caregivers about the influence they can have on their child’s neurodevelopment by using language and interactional strategies that are developmentally supportive. Similar principles apply to all neurodevelopmental stages, not just infants, and the interdisciplinary team can both assess and guide care principles, interventions, and partner with carers to ensure seamless education and training as well as inclusion in bedside cares. Bedside techniques that support responsive relationships, including modelling empathy and active listening, encourage protective factors and build on family strengths. Parents can be supported to help strengthen core life skills including parenting, self-regulation, and executive function. Elucidating sources of stress for parents and children including stressors at home, e.g., finances, food security, and domestic violence, can help inform strategies to reduce stress and improve coping.
Over two decades, the Alberta Family Wellness Institute (AFWI) has provided the groundwork to bridge the gap between neuroscientific principles and brain vulnerability and how policy and practice can respond with impact. In collaboration with researchers from the Harvard Centre and the National Scientific Council on the Developing Child, the “Core Story of Brain Development” was developed. This serves as a tool for education and establishes a common language and recognition of how brain development is linked to later health outcomes. The AFWI website offers free Brain Story Certification, which has become a major resource for individuals and organizations (e.g., through mandatory education) to become change agents and develop and apply knowledge about brain science, child development to impact long-term health outcomes. Through the Thriving Queensland Kids Partnership (TQKP) and Australia Research Alliance for Children and Youth (ARACY), Australia is now exploring how best to implement Brain Story Certification to change focus and behaviors, taking a human development and systems approach to improve policies, programs, and practices. Disrupting disadvantage and adversity and building and protecting healthy brain development starts with the individual, therefore it is recommended that PICU staff be supported to complete the Brain Story training. Further, PICUs need to consider making similar courses part of the mandatory training for all staff.
Health professionals have a critical role in developing and implementing workable, sustainable, and context-specific solutions. They not only advocate for the clinical interface but also for the larger scale-up of policies and interventions that support early childhood development. As clinicians who care for vulnerable children and their families, it is time for us to be intentional. We can help transform our knowledge about early childhood development into interventions that support children and families; this must be a PICU priority and placed at the top of our agendas. Using the guidance of the United Nations Children’s Fund (UNICEF) in ‘Early Moments Matter’ for every child, we can:
Develop and invest in care and services that give young children the best start in life. This might include mandatory trauma-informed care training for all staff and carers.
Make family-friendly early childhood development policies a PICU priority. This might include open visitation, parental presence during procedures and rounds, and neurodevelopmental cares.
Collect data on essential indicators of early childhood development and track progress. This might include social determinants, adverse childhood events, pre-morbid child development, pre-PICU parent functioning, and post-PICU outcomes.
Provide leadership for early childhood development programs. This might include Brain Story Certification, and the embedding of core brain story concepts into curriculum.
Continue to advocate for early childhood development services that families can access. This might include parenting programs, care coordination, post-PICU child and family psychosocial interventions, and PICU follow-up services.
Brain science provides a pathway to healthy growth and development for children, young people, and families today and for generations to come. Most children do survive their critical illness or injury yet are exposed to environments and early experiences that require urgent attention, as they can contribute to negative trajectories and children’s ability to achieve their best possible potential. Hospitalization and illness, as early adverse experiences that can impact the brain architecture of young children, require clinicians to simultaneously sustain best practice interventions and care that reduce child mortality while maintaining focus on brain vulnerability and development. Child development and child survival should be seen as complementary rather than as two opposing objectives. Whilst systems to recognize and respond to acute, severe and chronic illnesses continue to improve mortality, a focus shift can impact overall child and parent health and wellbeing by minimizing negative stressors, increasing positive experiences and relationships, and supporting the development of resilience and coping skills. By embracing the principles of neuroscience and brain development in PICU, small investments in the child and family at the bedside will have positive impacts that can be amplified exponentially.
The fundamental concepts of neuroscience and behavioral science help explain why a prosperous and sustainable society depends on the healthy development of children. Early intervention can prevent the consequences of adversity; with research showing that delayed interventions can be less successful. While there is no identified ideal window for intervention, neuroscience principles suggest that providing supportive conditions for early childhood development is more effective and less costly than attempting to address the consequences of early adversity later. PICU clinicians are ideally placed to not only intervene with life-saving therapies, but facilitate safe and strong relationships and environments and provide timely interventions to buffer the stressors of critical illness and hospitalization.