Respite Care for Children with Complex Care Needs: A Literature Review

Children with complex care needs form a diverse population with a variety of health and social care requisites in the presence of a range of complex symptoms and diagnoses. An exploratory literature review with a systematic search of the current qualitative literature was undertaken to explore parents' perceptions and evaluation of respite care services for children with complex needs. A systematic search was undertaken using a pre-defined search strategy in six databases; CINAHL, EMBASE, PsycINFO, Applied Social Sciences Index & abstracts and Web of Science. Studies were screened using inclusion criteria and eight studies were included in the review. These were analyzed using thematic analysis based on Braun and Clarke framework. Findings identified that there was a limited availability of respite care services for children with complex needs. Parents' perceived that respite was beneficial for themselves, their child and other siblings in the family. Barriers to accessing respite were also identified. It is recommended that respite services should be flexible and appropriate to the family's needs. A combination of in home and out of home services that are responsive to families' needs and are flexible would be optimal. Qualitative research is considered most suitable to obtain the views of parents of children with complex needs. Further research is recommended in this area, particularly in determining how services may improve and what the views of children using the respite services and their siblings are regarding respite.