In this chapter you will:
• Develop your understanding of evidence-based nursing assessments and interventions used in the care of infants, children and young people with complex medical needs
• Explore causes of complex medical health problems in children and young people
• Appreciate the critical role of families in the care of children with complex medical needs
• Consider resources and services available to families of children and young people with complex medical needs
Children with complex medical needs and their families are important and frequent consumers of paediatric health-care services (Burns et al., 2011); however, their needs are not always met (Noyes et al., 2014). Most children with complex medical care needs are cared for at home, with parents primarily responsible for their day-to-day care, often with the support of ambulatory and outpatient services. Depending on the nature of the child's condition, they may require frequent admission to hospital, psychosocial and socioeconomic support, and resources to maintain health and enable participation in school and other activities of daily living (Burns et al., 2011). The care that parents may be required to provide at home is likely to include procedural care – tasks such as suctioning or medication administration, and physical care such as manual handling, feeding and toileting (Rehm, 2013).
Children and young people who are dependent on medical technology have a higher risk of severe acute illness and are more likely to require admission to an intensive-care unit (Burns et al., 2011; Rehm, 2013). Furthermore, some illnesses may be life-limiting, resulting in premature death in childhood, adolescence or early adulthood. Some children, young people and their families may require palliative care services towards the end of their illness.
It can be difficult to determine when a child can be defined as having complex medical needs (Cohen et al., 2011). What one family finds complex, another family may adapt to more easily. One child with a particular condition may have less severity and more function than another child with the same or a similar condition. Furthermore, the discussion around the care of children with complex medical needs has often used different terms for similar things – care that is ‘medically complex’, or children who are ‘technology dependent’ or ‘medically frail’.