Identifying benefits and barriers to respite for carers of children with complex health needs: a qualitative study

Abstract

Abstract Background: Increasing numbers of children with complex health needs are being cared for in their own homes. Caring for a child with complex health needs is an enormous task for a family and so access to suitable respite is critical for the wellbeing of all members of the family. Aim: The aim of this study was to explore the concept of 'suitable' respite from the perspective of the carer and whether suitable respite is currently available. Method: A qualitative descriptive approach was used. Five people who acted as a carer for a child with complex health agreeing to participate in the study. Semi-structured interviews were conducted in the home of the carers and interview data analyses with a thematic analysis. Results: This study identified some of the barriers and enablers for families when accessing respite services for children with complex health needs. Carers describe optimal respite for these children to be similar to a family home with suitable facilities, equipment and activities for children. Flexible respite services and enthusiastic competent staff were considered very important by the family carers. Conclusion: Further research is needed to better understand the complexities of care for CWCHN and to identify effective strategies to support family carers.