Strategies to support families of children with end-stage renal failure

Abstract

The burden of care for families looking after children with end-stage renal failure can be considerable, especially when it involves home peritoneal dialysis and supplementary feeding. Good communication with the family and between team members delivering the multidisciplinary care is essential. Stress may be partly reduced by meeting the information needs and supplementing the spoken word with booklets, videos, tape-recorded interviews and play preparation for children. Families greatly appreciate a continuum of care between the hospital and community which is enhanced by team members visiting the home, nursery/school and primary care physician to impart and update knowledge. Respite care is essential for home dialysis patients. It can be enhanced by an evening baby-sitting service and the involvement of a home care renal nurse, as well as a holiday support strategy. Participation of the families in a regular parents support group provides not only an opportunity to integrate families into the unit, but also allows direct feedback on issues affecting the quality of care.