Different meanings of respite: a study of parents, nurses and social workers caring for children with complex needs

AIM: To examine the meaning of respite care to parents of children with complex conditions and providers. METHODS: In-depth interviews, participant observation and document review were used to collect data from nineteen mothers and seven fathers of children between the ages of 8 and 16 years who required complex care and from their respite providers, including thirteen nurses, and four social workers from three counties in North-west England. RESULTS: Parents described three categories of respite: short breaks provided by the extended family or friends, short breaks (3-4 h) by an outside agency, and overnight respite outside of home. They highly valued overnight respite outside the home. There was some overlap but also notable differences between parents' and providers' categorizations of respite care and the value attached to different forms of respite provision. Parents and nurses valued overnight respite outside the home unlike social workers who preferred to provide respite without separating children from their families. DISCUSSION: Appropriate provision of respite care and communication with parents requires understanding of the meaning of respite to parents. The meanings attached to respite care by parents and providers should be considered in attempts to understand and address problems of inappropriate provision and/or dissatisfaction with respite services.