By Morris J. Schoeneman, MD

End-stage renal disease (ESRD) constitutes a major stress for the child and family. Like any other chronic illness, this stress may lead to depression, low self-esteem and a poor personal self-image. The child is likely to have doubts about his or her skills, abilities and potential for solving future problems.

We will present methods used in pediatric dialysis centers to provide preparation and support for children and families who have or are about to face problems related to ESRD.

Before reviewing these methods it is important to realize that pediatric dialysis, even for infants, is well beyond the experimental stage and is commonly applied to children with ESRD. Although it is a life-saving procedure, it imposes heavy physical and psychosocial costs on children and their families. The physical and psychological development essential to the growing child pose additional problems to the purely technical ones involved in adult dialysis, and the pediatric dialysis team must be aware of these issues.

The physical costs of ESRD, dialysis, medication side effects and surgery include muscle wasting, short stature, bony deformities, delayed secondary sexual characteristics, Cushingoid facies, hirsutism, alopecia, striae, cataracts, surgical scars, external catheters, stomas, urinary leakage, as well as decreased physical strength, endurance and energy levels. Psychological costs involve chronic anxiety about impending pain, operations, invasive procedures, loss of vascular access and death. Children on dialysis must also contend with disruption of school and social life, dietary restrictions, limited activity, cosmetic defects, lack of growth and sexual development, family disruption from financial pressures, as well as limited social maturation and peer relationships.

When not handled appropriately by the pediatric dialysis team, these physical and psychosocial problems often lead to pathologic psychological coping mechanisms. Anxiety and depression may lead to denial, constriction of personality, lack of interest in outside events and peer relationships. Intellectual functioning decreases and poor school performance and truancy occur. Self-image deteriorates, particularly in adolescents, with a lack of interest in planning for a future social and sexual role. Some children feel guilty that bad behavior has led to their illness and they become overly dependent on hospital staff, machines and family members, thereby inhibiting the normal maturing process of developing independence and separation from family. Unfortunately, many parents and untrained staff become overprotective, resulting in overly compliant children or youth who manifest their rebellion as non-compliance to diet and medications, and as poor attendance at school or dialysis sessions.

Family disruption becomes almost universal. Depending on the pre-illness family structure, having a child on dialysis can lead to parental discord and separation, or can produce a strong bond between the parents and siblings around the chronically ill child.

How do pediatric dialysis centers best prepare a child and family for the stresses of ESRD and dialysis in order to avoid or improve these problems? Preventive and supportive measures must be provided early by a pediatric dialysis team – a “psychosocial support team” – comprised of pediatric nephrologists, an appropriate surgical group, in-patient and dialysis nursing representatives, public health or home-visiting nurse representatives, teachers, social workers, nutritionists, play therapists, occupational and physical therapists and a psychologist and/or psychiatrist.

It is important to work with the patient and family from the time of diagnosis. The natural history of the disease, as modified by treatment, must be described with frequent review and time allowed for repeated questioning. The physical and psychosocial costs to be expected are brought to the family’s attention early in the course.

Support and education must be provided to the child and family, and specific problems, such as dietary management, transportation, schooling, insurance and so forth, must be anticipated and managed by knowledgeable professionals. A successful team effort is based on giving continuous support and education to each patient and family and also to the group of involved physicians, nurses and paramedical personnel. Team members regularly meet with each other in sensitivity sessions to openly discuss their feelings, their own various means of handling problems and the best course of action for individual children. Input from children, parents and other siblings are obtained at other meetings. Team members are often responsible for arranging and being present at adolescent group meetings, meetings of several families of children on dialysis and introductory meetings of a new patient with a child and family already on dialysis. Typical problems handled by members of the team include preparing a preschooler for the trauma of vascular access surgery or nephrectomy, helping an adolescent with applications to college or job interviews and helping a family finance the automobile needed to bring the child to the hospital for dialysis several times a week.

In practical terms, in addition to the general principles addressed above, the Pediatric Dialysis Unit at The Children’s Hospital at Downstate has introduced numerous innovations over the past few years. The pediatric dialysis unit is physically separated from the adult unit and is staffed by a pediatric dialysis team. The unit has appropriate child and adolescent decorations, which change seasonally and as contributed to by the children. Age-appropriate books, toys, video games and laptop computers are provided or can be brought to the unit by the children.

Parents are allowed to stay in the dialysis treatment area when necessary. We provide frequent holiday parties including music, food, clown entertainment and we invite children who have had kidney transplants to attend. Trips to local amusement parks are arranged, as are outings to baseball games, pumpkin-picking farms and selected sightseeing opportunities. Finally, many of our children attend a sleep-away summer camp for two weeks. This camp is equipped with a dialysis unit and trained staff, and completely integrates the dialysis campers with their non-dialysis peers. Formal studies of this summer camp experience showed significantly improved self-esteem, independent activity, peer relationships and physical endurance long after camp.

Camper’s families reported an increased recognition of their previous overprotective behavior and admitted to finding more time to interact with healthy siblings while the child was away at camp.

Further innovative approaches are required and careful studies of their effectiveness are needed so uniform recommendation can be made for use by all centers that have undertaken the management of children with kidney disease.

Morris J. Schoeneman, MD is Professor of Clinical Pediatrics & Director of the Division of Pediatric Nephrology Children’s Hospital at SUNY Downstate Medical Center.

This article originally appeared in the January 2005 issue of aakpRENALIFE, Vol. 20, No. 4.

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