Grant: Project Grant

Children with complex care needs and conditions (CCNC) are those with chronic physical and developmental disabilities who require multiple services. Caring for children with CCNC is an immense undertaking for families that involves constantly coordinating multiple needs and services in a complex system with limited supports. As such, family well-being can be greatly impacted. Grounded on the premise of providing families periodic relief from ongoing extraordinary caregiving responsibilities, respite care has been shown to have many benefits, including reduced fatigue and stress for parents as well as increased independence, functioning and social participation for children. However, demand for respite care continues to exceed supply. Families experience issues with availability, affordability and accessibility. Current models of respite care need to be reshaped to become more accessible and effective for families of children with CCNC. The goal of this study is to provide evidence to inform the design of a new model of respite care that can respond to the diverse and changing needs of families of children with CCNC in Manitoba (MB). Multiple data collection methods are planned, including a review of existing models of respite care, interviews with families of children with CCNC as well as service providers and other stakeholders in MB and an analysis of population-based data sets. Families of children with CCNC will also take part in the photovoice process, which will involve them taking photos to document their experiences. Short-term, a new model of respite care for families of children with CCNC in MB will emerge so that respite care may be responsive and integrative. This work is foundational for future studies to test the effectiveness of a new respite model in MB. Long-term, what is learned from the implementation and testing of the MB model may be used to inform respite care policy nationally and internationally to improve outcomes for children with CCNC.