Living with Chronic Illness: Consultation to a Children's Renal Dialysis Unit

Questions about the quality of life have become increasingly relevant for all staff who work with children suffering from chronic illness. As well as the psychological and social problems associated with chronic illness, for children with chronic renal failure there are the additional problems of adjusting to dialysis and transplantation and the anxieties associated with these procedures. As a consultant to the unit I saw my role as working with the team towards improving the adjustment and quality of life for the children. Over time it gradually became clear that the most effective way of helping facilitate the normal processes of growth and development in the children was through discussion and consultation with the staff.

To put the work into context it is useful to have some understanding of the setting. The renal unit is a small one-storey building set in the grounds of a large district general hospital which provides the only haemodialysis facilities for children and adolescents from infancy to 17 years for a very large geographical area. Dr. N., consultant paediatric nephrologist, devoted much of his personal time and energy to raising the money to build the unit. It comprises one moderately sized dialysis room to accommodate four children with a small kitchen and a very small secretary's room leading off it. Usually there is an atmosphere of activity and work in the unit, with a sense of vitality conveyed by the cheerfulness of the nurses and teacher. Informality is encouraged with staff and parents using first names and it does feel like a family at times, with the mothers helping with other children and making drinks for everyone. However, the warmth and out-goingness of the staff contrasts with the isolation of the children; they sit far apart and rarely talk to one another whilst on dialysis. This emotional withdrawal is well recognized as occurring with both adults and children and will be discussed in more detail later on.

As an institution,