Supporting children with complex health care needs and their families – an overview of the research agenda

In summary, the potential and need for research in the area of supporting children with complex care needs in the community are vast. A mixture of methodologies is required: quantitative research designs to address effectiveness and efficiency, linking process variables with patient outcomes; qualitative methodologies to identify families' problems and needs, satisfaction with care, and to measure QoL; economic approaches to assess cost-benefit. Parents, siblings and the children themselves need to be involved in setting the research agenda.