The development and implementation of a respite care program for paediatric peritoneal dialysis patients

When a child is sent home on peritoneal dialysis, the family is faced with enormous challenges. Despite the coordination of community resources, there are few opportunities for relief from the many tasks required to keep a child home on dialysis. The intensity and duration of the home care required for children awaiting renal transplantation have often led to overwhelming parental stress, marital discord and burn-out. These events can lead to the detriment of the well-being of the child and may result in a higher incidence of peritonitis. Many families had identified the need for some form of relief. Recognizing this, the staff of the home dialysis program of the Toronto Hospital for Sick Children (HSC) joined forces with the staff at Bloorview Children's Hospital (a chronic care/rehabilitation centre) to develop a respite program for these families. The HSC staff provided staff education, medical back-up and financed the equipment and supply costs while the Bloorview Hospital provided the accommodation and the medical and nursing staff to care for the children. In addition to providing parental relief, Bloorview Hospital was able to provide extended care to children requiring peritoneal dialysis until their parents were able to care for them at home. This enabled HSC to use their beds for more acutely ill children. Initial evaluation of the program was favourable and efforts are now being made to streamline the system.