Due to advances in health care and technology, more children with health complexity are living into adulthood than ever before. Throughout their lives, these children and youth, and their families and caregivers, will require ongoing engagement with the health-care system and social services sector to help them function.
Children and youth living with health complexity:
- have a complex, chronic condition
- experience difficulties performing daily activities and participating in typical childhood activities without significant modification/adaptation
- have significant caregiving requirements
- 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 mental health challenges.
These children and youth experience difficulties performing daily activities and participating in typical childhood activities. Many of these children/youth need assistive technology and/or environmental adaptation.
Children with complex health-care needs are often dependent on medications, technologies, and specialized devices (e.g., ventilators, feeding tubes, mobility devices). Their day-to-day care therefore requires their parent or caregiver to hold specialized knowledge and skills. The social determinants of health also impact family need.
In addition to their primary caregivers, these children need multiple subspecialists, health-care providers, and a range of other professionals (e.g., school counsellors, social workers) to be involved in their care.