Integrated care for children living with complex care needs: navigating the long and winding road

Excerpt

An increasing number of children are living with complex care needs resulting from multiple concurrent conditions. Due to these conditions, various health problems can arise and necessitate screening, prevention, and treatment at different ages during childhood. Each child has an individual constellation and combination of health problems, which implies that multiple health and social care providers across various sectors are required to address these health problems. In addition, most healthcare services focus predominantly on single diseases and related treatment decisions are often mainly directed at improving medical outcomes. As a result, this single-disease-centered approach in care delivery is insufficiently responsive to children living with complex care needs; it is not optimally tailored to their needs and preferences, especially regarding functional outcomes. Previous research has highlighted that children living with complex care needs and their relatives encounter difficulties in accessing adequate and consistent psychological support, community and social services, and health education [1], which highlights the importance of addressing both medical and functional outcomes for children living with complex care needs. …