STRATEGIES TO SUPPORT FAMILIES OF CHILDREN WITH END-STAGE RENAL-FAILURE

The burden of care for families looking after children with end-stage renal failure can be considerable, especially when it involves home pe ritoneal dialysis and supplementary feeding. Good communication with t he family and between team members delivering the multi-disciplinary c are is essential. Stress may be partly reduced by meeting the informat ion needs and supplementing the spoken word with booklets, videos, tap e-recorded interviews and play preparation for children. Families grea tly appreciate a continuum of care between the hospital and community which is enhanced by team members visiting the home, nursery/school an d primary care physician to impart and update knowledge. Respite care is essential for home dialysis patients. It can be enhanced by an even ing baby-sitting service and the involvement of a home care renal nurs e, as well as a holiday support strategy. Participation of the familie s in a regular parents support group provides not only an opportunity to integrate families into the unit, but also allows direct feedback o n issues affecting the quality of care.