Respite care for children and youth with complex care needs and their families: a scoping review protocol

The objective of this scoping review is to identify and characterize interventions, programs or models used to deliver respite care services to children and youth with complex care needs and their families.

Many children with complex chronic conditions require multifaceted home management plans to address their medical, social and emotional needs. The provision of this care often falls on the parents or primary guardians. Respite care is one strategy to provide families with a break from the demands of caring for a child with complex care needs; however, families commonly face barriers to obtaining respite care services.

This scoping review will consider papers that include children and youth (0-25 years of age, in any location, with complex care needs, medical complexity or complex chronic conditions) and their families. Any interventions, programs or models aimed at delivering respite care services to this population will be included. Studies focusing on support provided at the end of life will be excluded. Only studies published in English will be included. No date limits will be set.

A search will be conducted in five databases, as well as multiple sources of unpublished literature. The text words contained in the titles and abstracts of relevant articles and index terms will be used to develop a full search strategy. All potentially relevant papers will be retrieved in full. A pre-defined data extraction tool developed by the reviewers will be used, and extracted data will be presented in tabular form accompanied by a narrative summary.