Give them a break: A study of families’ perceptions of the supports available in the community for families with a child with a life-threatening illness

The effectiveness of current support services for families who have a child with a progressive life-threatening illness seems to be a frequently overlooked issue. This paper, which is based on the findings of a recently conducted study, attempts to elucidate the critical issues in supporting this unique group of families. The study examined the perceptions of families regarding the value and effectiveness of the social supports available in the community for families caring for a child with a life-threatening illness in Victoria. Attention has been drawn to perceived gaps in support for these families. Also considered is the effectiveness of supports available for bereaved families who have lost children with life-threatening illnesses. The study was based on information provided by families who had been involved with a family support agency known as Very Special Kids.