Due to advances in health care and technology, more children with health complexity are living into adulthood than ever before. They represent less than 1% of the pediatric population, but up to 33% of child health provincial spending and account for more than half of pediatric hospitalizations.
Children and youth living with health complexity:
- have complex, chronic health conditions
- have functional limitations
- have substantial health-care needs
- frequently use the health-care and social systems.
Complex, chronic conditions may be conditions that a child was born with or the result of a traumatic or sudden event. Many conditions are rare, can be hard to diagnose, and can include additional complications that affect all aspects of the child's daily life such as seizures, loss of sight or hearing, developmental delays, or behavioural/mental health challenges.
These children and youth experience difficulties performing daily activities such as eating and breathing, and participating in typical childhood activities. Many need assistive technology and environmental adaptation such as mobility devices (strollers or wheelchairs), breathing supports like ventilators, and feeding tubes.
Because children with complex health-care needs are often dependent on medications, technologies, and specialized devices, their day-to-day care requires their parent or caregiver to hold specialized knowledge and skills. Social determinants of health also impact family need.
In addition to their primary caregivers, these children need multiple subspecialists, health-care providers, and other professionals (e.g., school counsellors, social workers) to be involved in their care.