Respite care needs met and unmet: Assessment of needs for children with disability

Abstract

The study aimed to ascertain the current use of respite-care services by families with children with a learning and/or a physical disability in a South London, UK, health authority, to estimate the type and extent of the unmet need, and to set standards for the provision of such services. Over 1200 families were sent an 11-page questionnaire. The results indicated that the child's level of dependency and the presence of behaviour and communication problems led to significantly higher levels of experienced stress among carers. This was also associated with a significantly greater use of respite care except by families of children with behavioural problems. The results showed that respite care was generally perceived as an inadequate service, though 38% of respondents had no knowledge of the existence of respite-care services. Recommendations are made in relation to information provision, choice, and flexibility for carers and for quality standards in general.