By Sally Goldstein, LCSW, MSW Young children with chronic renal failure (CRF) present many challenges to their parents, who are beginning a long journey of learning about, and adjusting to, life with a chronically ill child. The tasks are both similar to those experienced by parents who are adjusting to other forms of chronic illness and unique to this population. The Fear Factor: For most of these families, the introduction to kidney disease arrives at the infant or toddler's diagnosis. With modern technology, diagnosis of kidney disease can even be made in-utero. The initial shock is quickly followed by many questions, which are not easily answered. The fear of the unknown is increased. There are no guarantees for the future and parents must resort to taking one day at a time. Medical professionals often cannot reassure parents with regard to the prognosis. Some physicians feel the need to provide the "worst possible scenario" in order to facilitate a realistic acceptance to a blurry reality. The Role as Caretaker: Ultimately, the parent is responsible for the daily care of this child, who is often fragile, sometimes delayed developmentally and failing to thrive. The parent must make sure that the child is receiving the proper nourishment. In our program, a baby must weigh at least 8 kilos in order to receive a kidney transplant. This adds to the pressure on the parent to "fatten up the infant" and to try to reach that magic weight before dialysis is necessary. This may mean accepting insertion of a feeding tube to facilitate this process. The caretaker must learn how to care for the equipment, tubing and catheter. Add to the mix, expensive and complicated formulas and nutritional supplements, as well as continued attempts at feeding the child by mouth to maintain his oral motor skills. The stress of this huge responsibility is often felt by the child as well and can make for an unhealthy pattern at mealtime. Once it is determined that dialysis is necessary, there is no longer any way to deny reality. For babies and most young children, peritoneal dialysis is the treatment of choice. The home begins to resemble a medical setting with supplies overtaking the living space. Most parents learn the procedure well but practice is required before a level of comfort is reached. The parent/caretaker becomes the child's advocate and primary communicator. There can be a loss of control, which may lead to frustration and anger. The parent is often helpless in preventing the child's pain and in the ability to carry out the basic parental role of keeping one's child safe. Changes in Lifestyle: Depending on the resources of the family, one parent may need to stop working outside of the home in order to care for the child. In addition to putting a strain on the family's financial resources, the caretaker may become isolated from friends and family. Without adequate supports, the parent may demonstrate signs of depression and other difficult emotional responses. This may further burden the marriage. The parent(s) may feel pulled in many directions with spouses and other children perceiving abandonment. We may see the healthy children acting out for attention or behaving as "parentified" adults. Loss of Supports: The lack of understanding about kidney disease by family members and friends frequently causes feelings of discomfort. It is not unusual for previously healthy relationships to deteriorate. Parents may feel too exhausted to put the required effort into maintaining these relationships and may, in essence, isolate themselves. Treatment centers may be located largely in metropolitan areas. Parents usually have no contact with anyone else coping with the same concerns and may have to travel long distances to the nearest program. Additionally, well-meaning people, who have some distant knowledge of another person with CRF/ESRD, may share erroneous facts and information, particularly if that patient is an adult. What Can Help: Our pediatric nephrology team provides a series of informal supportive interventions to families and patients. Education regarding kidney disease and treatment options is extremely important. Knowledge is indeed power and facilitates a sense of control over the situation. Our clinical nurse specialist and social worker offer both formal and informal education. We also have information available in the waiting room with extra copies for the parents to take home and share. There is a parent bulletin board with information about community resources, such as renal camps and respite programs. Matching parents with others who are struggling to cope with similar stages of concerns has been a successful approach. With the permission of the participants to ensure confidentiality, we have been able to establish a "buddy system" to supplement the interventions of the support professionals. Frequently, parents find each other while their children are hospitalized. The office waiting room is another ideal place in which to encourage the initiation of these potential relationships. However, reaching out to the parents is critical because most are reluctant to ask for help and mistakenly believe that other parents are more competent than they. Sometimes, it takes several weeks to help a parent adjust to the idea of making that initial phone call to someone else. Our team decided recently to provide a more structured approach to parent support. We targeted the parents/caretakers of patients under seven years of age, who generally have more limited resources than parents of older patients. For most, the shock of diagnosis was still fresh. Most felt utterly alone and had never spoken with another kidney donor nor witnessed the outcome of a kidney transplant. After some thought as to non-threatening ways to attract participants, we settled on an informal program that included dinner in a relaxing atmosphere, entitled "Parents' Night Out." Despite the trappings, outreach by our staff was still necessary. In the end, we had 16 participants from eight families. No "ice breakers" or prodding was needed. Everyone participated actively by sharing his/her fears and problems, as well as successes. Participants were surprisingly candid with each other and were reluctant to stop when it was time to wind down. Responses on program evaluations confirmed the success of the evening. We plan to continue these programs every three months. Parents and caretakers of children with CRF require intensive education, support and contact with others in similar situations. Pediatric nephrology specialists must find creative and innovative ways to provide such services so that coping skills are enhanced and positive adjustment can occur. Sally Goldstein is a Clinical Social Worker, Pediatric Nephrology and Transplantation, at St. Barnabas Medical Center in Livingston, NJ. She has spent the past 30 years providing social work services to children and their families in a variety of settings and modalities. This article originally appeared in the May 2002 issue of aakpRENALIFE, Vol. 17, No. 6. |