Acknowledging the extra care parents give their disabled children

Abstract

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 Fund Trust, which provides grants and information relating to the care of a severely disabled child. The aim of this study was to identify patterns of extra 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 the Trust database and qualitative exploration of the extra care needs of disabled 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 majority of children in the sample required extra assistance or supervision with multiple areas of daily life. With each of five activities (washing, dressing, meal times, during the night and keeping occupied), >70% of children needed extra help and, on average, each child needed extra help or supervision in six areas of daily life. Cluster analysis indicated distinctive combinations of extra care needs. Qualitative material indicated variety in extra care tasks undertaken (physical help, supervision, guidance) and causal factors (physical limitations, cognitive difficulties, behavioural problems). The findings confirm that severely disabled children have considerable extra care needs in many areas of daily life. Parents want professionals to recognize and offer explicit acknowledgement of the extra care they give their disabled children.