Acknowledging the extra care parents give their disabled children

Around 150 000 families in the UK care for a severely disabled child under the age of 16. Many of these families receive assistance from the Family Fu nd Trust, which provides grants and information relating to the care of a s everely disabled child. The aim of this study was to identify patterns of e xtra care needs among severely disabled children known to the Trust. Extra care needs are requirements for care not experienced by similarly aged non- disabled children. The research comprised analysis of 40 000 records from t he Trust database and qualitative exploration of the extra care needs of di sabled children with parents and Trust staff. Although all children require parenting, the care parents give disabled children generally exceeds that given to a non-disabled child. Quantitative analysis showed that the majori ty of children in the sample required extra assistance or supervision with multiple areas of daily life. With each of five activities (washing, dressi ng, meal times, during the night and keeping occupied), > 70% of children n eeded extra help and, on average, each child needed extra help or supervisi on in six areas of daily life. Cluster analysis indicated distinctive combi nations of extra care needs. Qualitative material indicated variety in extr a care tasks undertaken (physical help, supervision, guidance) and causal f actors (physical limitations, cognitive difficulties, behavioural problems) . The findings confirm that severely disabled children have considerable ex tra care needs in many areas of daily life. Parents want professionals to r ecognize and offer explicit acknowledgement of the extra care they give the ir disabled children.