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Controversies in Nephrology Nursing

The Benefits of a School Teacher vs. a Child Life Specialist Serving Pediatric Patients on Dialysis
Katie MacDougall
Darlene B. Oldham
Alice B. Cassman

Child Life Specialists Promote Optimal Pediatric Care in Dialysis
Children and adolescents in healthcare settings confront many different challenges, including unfamiliar environments, separation from family, separation from friends, and invasive procedures. To address the psychosocial concerns that accompany hospitalization and other healthcare experiences, child life programs have become standard in most pediatric settings (American Academy of Pediatrics, 2006). Child life specialists work as members of the interdisciplinary healthcare team to promote optimum growth, development, education, and support of children and families throughout the healthcare experience. The presence of child life services in a pediatric healthcare setting is an indicator of excellence (Sangiorgio, 2003).

Child life specialists are trained experts in child development, with the specific focus of developmental needs in a hospital setting. They have earned a bachelor’s or master’s degree in child life, child development, or related field, and have completed a minimum of a 480-hour internship under the direct supervision of a certified child life specialist (CCLS). After meeting the required academic and clinical experiences, a child life specialist is eligible to sit for the Child Life Professional Certification Examination and attain the professional certification credential CCLS. This comprehensive training provides the child life specialist with unique knowledge and skills to successfully help children navigate the complexities of health care.

An essential component of a child life specialist’s role is to provide psychological preparation for children faced with disease challenges. Psychological preparation is a “process of communicating accurate and developmentally appropriate information, identifying potential stressors, as well as planning and practicing appropriate coping strategies” (Fortunato, 2000, p. 18). With a better understanding of the medical experience, a child’s anxiety is thereby reduced and cooperation increased for critical procedures and tests. Child life specialists use their expertise to prepare children for medical experiences based upon the child’s developmental level. As children’s learning employs all five senses, so child life specialists prepare children using pictures of what they will see, describing what they will feel, hear, and smell, and letting them “act” out the procedure on a doll. This preparation helps the pediatric patient gain understanding and mastery of an experience and can offer some control of the situation.

Children on dialysis face unique psychological challenges because of kidney disease management, associated invasive procedures, dietary restrictions, schedule demands, and body image. With this host of challenges, child life specialists are critical members of the dialysis team. Specifically, within a dialysis setting, child life specialists can help a child master needle placement, assist with non-pharmacologic pain-management techniques, and guide the child toward a long-term coping plan. They perform developmental assessments of children (such as with the DENVER II Developmental Screening Test) and monitor progress. The older school age child is monitored through Special education. For the recently diagnosed child, child life specialists can also help with school re-entry. In addition, they assist with the coordination of school schedules and facilitation of education time – especially during incenter treatments.

Thousands of children in the United States have chronic kidney disease. Successful disease management over a child’s life is associated with positive learning experiences. Child life specialists are experts in child development, who promote effective coping through play, preparation, education, and self-expression activities. They provide emotional support for families, and encourage optimum development of children facing a broad range of challenging experiences, particularly those related to health care and hospitalization (Child Life Council, 2008). It is essential to children and families for a child life specialist to be a member of the dialysis healthcare team.

A School Teacher is an Essential Member of the Nephrology Team
Many dialysis facilities utilize a multidisciplinary team approach with all pediatric nephrology patients, including inpatient and outpatient. Freq-uently, referrals are made to the Family Services Department requesting that the team’s teacher visit with the family to provide services as needed. This model provides a positive, patient-driven approach to serving the various needs of children and their families in a pediatric setting.

The pediatric nephrology team for patients on hemodialysis generally is composed of the pediatric nephrologists and medical director, Administrative Programs Director, Clinical Staff Coordinator, other nurses who function as coordinators of various modalities, a social worker, dietician, counselor, child life specialist, and teacher. Each member of the team is responsible for his or her own area of expertise and works with other team members to provide a multidisciplinary team approach to most fully serve this particular pediatric population. As a member of this team, the teacher is responsible for developing open lines of communication between each patient’s school, the dialysis staff, parents, the patient, and the teacher. This allows each person involved in caring for the child to become comfortable expressing concerns; therefore, issues can be addressed before they become problems.

Patients on hemodialysis receive treatments three times weekly. The teacher makes contact with each patient during those visits. The expectation is for each patient to bring assignments or school work sent by their regular school to the nephrology teacher so that assistance can be provided during treatment. Patients often travel several hours to the their centers because of very limited pediatric dialysis facilities. These children are able to attend regular school only two full days each week. Cooperation among the care team is especially important in these situations. Some students are able to attend classes before or after dialysis treatments. For these students, contact with the school is essential to discuss scheduling of core classes around the dialysis treatments to enhance those students’ opportunities for instruction in the classroom.

Patients on dialysis are chronically ill and should qualify for special education services under the Individuals with Disabilities Edu-cation Act (IDEA) or placement under Section 504 of the Rehabili-tation Act of 1973. Section 504 prohibits discrimination due to disabling conditions. If the child does not fall in a specific qualifying category under IDEA, then Section 504 should be considered. Under Section 504, the definition of handicapped is a person who has a physical or mental impairment that substantially limits a major life activity or is regarded as handicapped by others. With this legislation in mind, another area of responsibility for the nephrology teacher is to educate the patient and parents concerning rights and responsibilities when addressing school personnel regarding the need for special services or accommodations. Appropriate placement, planning, and provision of services are essential to ensure that each child reaches his or her maximum academic achievement.

The nephrology teacher can also meet with parents in a group setting to answer school-related questions. The teacher can provide group or individual information tailored to the needs of the patients in areas such as preparation for state administered assessments, drop out prevention, finances, vocational interest, college preparation and enrollment, and contact information for services outside the hospital. As patients and families approach making decisions about dialysis and transplant, all nephrology team members meet with the families to initiate the orientation process and provide information about the services available. The nephrology teacher not only provides information on school services and options, but he or she immediately begins coordinating these services for the family and the school.

Assignment of a teacher to serve the pediatric patients on dialysis is a vital step in the normalization of the patient’s environment. Children are required to and should attend school. With an emphasis on education by the entire care team, success in the area of schooling can be accomplished with extremely satisfactory results.

School Is a Career For Pediatric Patients with Chronic Kidney Disease
Is there anyone who doesn’t like a day off from work? I know the prospect of a holiday puts a spring in my step, but part of what makes me savor my time off is knowing that it is a day off , that I have a job waiting for me, and that I have obligations to meet, contributions to make, and challenges to surmount. I would feel very different about time off if I had nothing to go back to, especially a secure job.

For youngsters, going to school is their job. For all their complaints about school, most welcome the structure, enjoy socializing with their friends, and even enjoy learning. When we deprive sick children of school, we relegate them to the sidelines. We slow their progression to adulthood. In an effort to make life easier for them, we actually handicap them, bartering their future success for ease in the present.

As a teacher in a pediatric dialysis unit (PDU), I work with young patients to help them stay in school, and as much as possible, keep them enrolled in the classes they attended before they started dialysis. They are understandably eager to stay connected to their friends and to graduate with their peers. Unfortunately, because of their dialysis schedule, patients can only attend a full day of school on Tuesdays and Thursdays. To help organize their schedules and implement other accommodations, I facilitate communications between family members, school personnel, and the medical staff at the PDU. I communicate continuously with the students’ schools and teachers to coordinate assignments by e-mail, receive faxes of worksheets, and even attend staff meetings at the schools. In addition, I supplement the students’ class work with additional instruction and tutoring while they are in the PDU.

Some patients are unable to attend regular school classes and work instead with teachers who come to their homes. Since I usually spend more time with these students than the home teacher, I often take on specific parts of the course work. For example, I might do all the math work while the home teacher covers the English and social studies parts of the curriculum. Furthermore, some students have missed so much school that they are behind in their credits. For those students, I can provide instruction so they can make up the courses they need to get up to grade level. I work closely with their schools and school districts so they can get credits in their home districts.

We have some patients who are enrolled in the local unified school district through the children’s hospital school. They may have come from other countries, or they may have had trouble coordinating with their districts to get the services they need. I have primary responsibility for the education of these students. If possible, I get transcripts for their previous work and design courses to help them satisfy their graduation requirements. I evaluate their work and assign grades, and they get credits through the homebound/ hospital program.

International students may or may not be enrolled in the school district. Using interpreters, computer translating programs, picture dictionaries, and even captioned videos, I concentrate on teaching these children the English they need to communicate with health care staff. They especially need to know the names of body parts, feelings, directions, foods, as well as numbers and colors. If they are here longer, I incorporate math and more advanced language skills such as writing and reading newspapers.

Finally, we have some students who are old enough to have left school (they are over 18 years of age). Some of them are working on their graduate education diplomas (GED), and I help these students with practice tests and exercises to bolster areas where they need improvement. Others may not be engaged in formal education but still enjoy solving puzzles, which not only promotes flexible thinking, but also stimulates social interaction through sharing hints, brainstorming, and comparing answers, as well as hearty congratulations when the solution emerges. There is pleasure in finding patterns in what initially seemed to be chaos by unlocking the obscure mysteries of the universe. This is a pleasure that continues long after school is over, and it is one I am enthusiastic about supporting.

There is one other benefit to having a teacher available. Patients need to learn about their disease and its treatments. Trained teachers are sensitive to varying learning styles and the different ways students acquire information. Teachers can assist the health care staff in designing exercises for patients and even lifting relevant assignments from the standard curriculum.

A lot of things worth having do not come easy, and learning is one of them. Learning is hard work, but there is pleasure in accomplishing something with hard work and in becoming proficient at something with practice. A lot of things are hard for patients. Many patients are adolescents, and just when they should be feeling invincible, their bodies are letting them down. Their brains, however, are still working, capable of solving problems and meeting challenges. As a teacher, I am determined that they shall have a chance to use their brains, learn necessary skills, and become adults who find fulfillment as contributing members of society.

This is not to say that patients do not relish entertainment, but a teacher can supply games, movies, and other diversions. On the other hand, it takes a stern person to keep students working while they are on dialysis. A teacher is more likely to be stern than a child life specialist. It takes someone familiar with school districts, teachers, and curricula to communicate effectively with school personnel in order to create a partnership that ensures the patients’ education will continue. For all pediatric patients, continuing with school is paramount, and the need for this persists throughout their treatment. A teacher is the person best qualified to make sure this happens and to assist them in achieving a successful career.

The Controversies in Nephrology Nursing department focuses on exploring ethical and clinical issues within the nephrology clinic practice in a point/counterpoint format. Address correspondence to: Christy Price Rabetoy, Department Editor, through the ANNA National Office; East Holly Avenue/Box 56; Pitman, NJ 08071-0056; (856) 256-2320; or by emailing her at christycpr@comcast.net. You may also log onto this column at www.nephrologynursingjournal.net (clink on Department link) and email your comments to the Editor (see Discussion Area). The opinions and assertions contained herein are the private views of the contributors and do not necessarily reflect the views of the American Nephrology Nurses' Association.