Controversies in Nephrology Nursing
The Benefits of a School Teacher vs. a Child Life
Specialist Serving Pediatric Patients on Dialysis
Child Life
Specialists Promote
Optimal Pediatric
Care in Dialysis
hildren and adolescents in
C
healthcare settings confront
many different challenges, in-
cluding unfamiliar environ-
ments, separation from family, sepa-
ration from friends, and invasive pro-
cedures. To address the psychosocial
concerns that accompany hospital-
ization and other healthcare experi-
ences, child life programs have
become standard in most pediatric
settings (American Academy of
Pediatrics, 2006). Child life special-
ists work as members of the interdis-
ciplinary healthcare team to promote
optimum growth, development, edu-
cation, and support of children and
families throughout the healthcare
experience. The presence of child life
services in a pediatric healthcare set-
ting 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 spe-
cialist (CCLS). After meeting the
required academic and clinical experi-
ences, 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 success-
fully help children navigate the com-
plexities of health care.
continued on next page
NEPHROLOGY NURSING JOURNAL July-August 2008
Christy Price Rabetoy, Department Editor
A School Teacher School Is a Career
Is an Essential For Pediatric
Member of the Patients with
Nephrology Team Chronic Kidney
Disease
any dialysis facilities utilize
M
a multidisciplinary team
s there anyone who doesn’t like a
I
approach with all pediatric
day off from work? I know the
nephrology patients, includ-
prospect of a holiday puts a spring
ing inpatient and outpatient. Freq-
in my step, but part of what makes
uently, referrals are made to the
me savor my time off is knowing that
Family Services Department request-
it is a day off , that I have a job wait-
ing that the team’s teacher visit with
ing for me, and that I have obliga-
the family to provide services as
tions to meet, contributions to make,
needed. This model provides a pos-
and challenges to surmount. I would
itive, patient-driven approach to
feel very different about time off if I
serving the various needs of chil-
had nothing to go back to, especially
dren and their families in a pediatric
a secure job.
setting.
For youngsters, going to school is
The pediatric nephrology team
their job. For all their complaints
for patients on hemodialysis gener-
about school, most welcome the
ally is composed of the pediatric
structure, enjoy socializing with their
nephrologists and medical director,
friends, and even enjoy learning.
Administrative Programs Director,
When we deprive sick children of
Clinical Staff Coordinator, other
school, we relegate them to the side-
nurses who function as coordinators
lines. We slow their progression to
of various modalities, a social work-
adulthood. In an effort to make life
er, dietician, counselor, child life
easier for them, we actually handicap
specialist, and teacher. Each mem-
them, bartering their future success
ber of the team is responsible for his
for ease in the present.
or her own area of expertise and
As a teacher in a pediatric dialysis
works with other team members to
unit (PDU), I work with young
provide a multidisciplinary team
patients to help them stay in school,
approach to most fully serve this
and as much as possible, keep them
particular pediatric population. As a
enrolled in the classes they attended
member of this team, the teacher is
before they started dialysis. They are
responsible for developing open
understandably eager to stay connect-
lines of communication between
continued on next page continued on next page
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 Nephrology Nursing
Journal; East Holly Avenue/Box 56; Pitman, NJ 08071-0056; (856) 256-2320; or by emailing her
at christycpr@comcast.net. 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.
Vol. 35, No. 4 399
The Benefits of a School Teacher vs. a Child Life Specialist Serving Pediatric Patients on Dialysis
An essential component of a child
life specialist’s role is to provide psycho-
logical preparation for children faced
with disease challenges. Psychological
preparation is a “process of communi-
cating 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 med-
ical 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 prepara-
tion 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, associat-
ed invasive procedures, dietary restric-
tions, schedule demands, and body
image. With this host of challenges,
child life specialists are critical mem-
bers of the dialysis team. Specifically,
within a dialysis setting, child life spe-
cialists can help a child master needle
placement, assist with non-pharmaco-
logic pain-management techniques,
and guide the child toward a long-term
coping plan. They perform develop-
mental assessments of children (such as
with the DENVER II Developmental
Screening Test) and monitor progress.
The older school age child is moni-
tored 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 – espe-
cially during incenter treatments.
Thousands of children in the
United States have chronic kidney
disease. Successful disease manage-
continued on next page
400
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 assis-
tance can be provided during treat-
ment. Patients often travel several
hours to the their centers because of
very limited pediatric dialysis facili-
ties. 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 schedul-
ing of core classes around the dialy-
sis treatments to enhance those stu-
dents’ opportunities for instruction
in the classroom.
Patients on dialysis are chroni-
cally ill and should qualify for spe-
cial 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 pro-
hibits discrimination due to dis-
abling conditions. If the child does
not fall in a specific qualifying cate-
gory under IDEA, then Section 504
should be considered. Under
Section 504, the definition of handi-
capped is a person who has a physi-
cal or mental impairment that sub-
stantially 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 regard-
continued on next page
NEPHROLOGY NURSING JOURNAL
ed 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 coor-
dinate assignments by e-mail, receive
faxes of worksheets, and even attend
staff meetings at the schools. In addi-
tion, 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 spe-
cific 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 possi-
ble, 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 translat-
ing programs, picture dictionaries, and
continued on next page
July-August 2008 Vol. 35, No. 4
ment 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, prepa-
ration, 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 relat-
ed 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.
Katie MacDougall, CCLS, is a Renal Child Life
Specialist and the Child Life Internship
Coordinator, Texas Children’s Hospital, Houston,
TX.
References
American Academy of Pediatrics. (2006).
Child life services: Child life council and
committee on hospital care. Retrieved
August 7, 2008 from www.aapolicy.
aapublications.org/cgi/content/full/pe
diatrics
Child Life Council. (2008). Retrieved
August 7, 2008, from www.childlife.org
Fortunato, G. (2000). Preparing your child
for urologic surgery. Family Urology, 1,
18-21.
Sangiorgio, M.P. (2003, February). The best
children’s hospitals in America. Child,
103-114.
NEPHROLOGY NURSING JOURNAL July-August 2008
ing the need for special services or
accommodations. Appropriate place-
ment, planning, and provision of
services are essential to ensure that
each child reaches his or her maxi-
mum 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 admin-
istered assessments, drop out pre-
vention, finances, vocational inter-
est, college preparation and enroll-
ment, and contact information for
services outside the hospital. As
patients and families approach mak-
ing decisions about dialysis and
transplant, all nephrology team
members meet with the families to
initiate the orientation process and
provide information about the serv-
ices available. The nephrology
teacher not only provides informa-
tion 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 educa-
tion by the entire care team, success
in the area of schooling can be
accomplished with extremely satis-
factory results.
Darlene B. Oldham, MA, is a Special
Education Teacher, The Sunshine School,
Children’s Hospital of Alabama, Birmingham,
AL.
Vol. 35, No. 4
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, feel-
ings, directions, foods, as well as num-
bers and colors. If they are here
longer, I incorporate math and more
advanced language skills such as writ-
ing 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 prac-
tice tests and exercises to bolster areas
where they need improvement.
Others may not be engaged in formal
education but still enjoy solving puz-
zles, which not only promotes flexi-
ble thinking, but also stimulates social
interaction through sharing hints,
brainstorming, and comparing
answers, as well as hearty congratula-
tions 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 hav-
ing a teacher available. Patients need
to learn about their disease and its
treatments. Trained teachers are sen-
sitive to varying learning styles and
the different ways students acquire
information. Teachers can assist the
health care staff in designing exercis-
es for patients and even lifting rele-
vant 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 some-
thing 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 invin-
cible, their bodies are letting them
down. Their brains, however, are still
working, capable of solving problems
continued on next page
401
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