Families Caring for Chronically III Children with Tuberous Sclerosis Complex

This article documents how families cope with the stresses of caring for a chronically ill child with tuberous sclerosis complex (TSC), a rare pediatric neurological disorder. Families caring for TSC children have some special needs as well as some needs which are common to all families caring for a chronically ill family member. The results of this study show that family members giving care to a child with TSC report difficulties providing care; lack of spontaneity in family life; feelings of guilt, ambiguity, and chronic grief; variable support from formal and informal sources; and a profound impact on all aspects of family life. Many families feel they face an endless stressful, unpredictable, and potentially chaotic family life. This research may present new insights for health care professionals. It is hoped that this discussion will raise their awareness about TSC and encourage them to offer more effective help to all families caring for chronically ill members