National Institute of Diabetes and Digestive and Kidney Diseases

NATIONAL INSTITUTES OF HEALTH

School & Family Problems of

Children With Kidney Failure

S

erious and long-lasting conditions 

like kidney failure affect many parts of a

child’s life. Having kidney failure influences a child’s self-image and relationships

with peers and family. It can lead to behavior

problems and make achieving goals more difficult. Being aware of these problems can

help you recognize that your child may need

some additional guidance or understanding at

times.

Areas Where Your Child

May Need Help

Kidney disease can cause learning

problems. The buildup of wastes in the

body can hamper nerve and brain function. Your child may have problems

concentrating and may develop language and motor skills more slowly than

peers. The most severe problems occur

when kidney disease is present early in

infancy. Fortunately, transplantation

can reverse most of these conditions.

Adequate dialysis can also improve or

correct these problems. If they receive

appropriate treatment, most children

with kidney disease can attend school

and graduate from high school. Many

go on to college or vocational school.

Attending School

Having as normal a life as possible can

help a child feel more like other children. Going to school is especially

important. You are likely to encounter

many people who are unaware of how

kidney disease affects a child, so you

may need to inform teachers and classmates of some of the possible problems.

Children who have in-center hemodialysis or frequent medical appointments

may miss several hours of school each

week. These absences can compound

the learning problems that many children with kidney failure face. You

should make every effort to schedule

your child’s treatments around the

school schedule.

The Individuals with Disabilities Education Act (IDEA, Public Law 94–142)

states that every child is entitled to an

appropriate education and directs

school districts to provide special

services to ensure that children with disabilities are able to participate in regular

classrooms to the fullest possible extent.

Your child may need tutoring or vocational rehabilitation. Work with school

counselors to find the best arrangement

for letting your child work at a comfortable pace while also spending time with

other children.

U.S. Department of Health

and Human Services

If they receive appropriate treatment,

most children with kidney disease can

attend school and graduate from high

school. Many go on to college or

vocational school.
Dealing With Low Self-Esteem

The physical effects of kidney disease can make

children feel depressed and powerless. Learning and growth problems may contribute to

low self-esteem. Children with functioning

transplants seem to have fewer problems

because they are less dependent on health professionals. Children who have as much control

and responsibility as possible over their own

care can feel empowered. Older children can

take the lead in performing their peritoneal

dialysis exchanges, preparing home hemodialysis equipment, and learning about their

medication doses and purpose.

Following Medical Instructions

Health professionals use the terms “noncompliance” or “nonadherence” to describe a

patient’s failure or refusal to take prescribed

medicines or follow a doctor’s directions.

Teenagers with transplanted organs may be

noncompliant because the immunosuppressive

drugs they must take change their appearance

in unflattering ways. A child psychologist may

be able to suggest techniques that reinforce

desired behaviors. But communicating clearly

about the reasons for treatment and the

importance of following the regimen is an

important part of helping all patients, including children. Children who understand that

their decisions can affect their health are more

likely to take responsibility for their actions.

Engaging in Sports or Physical Activity

In some cases, a doctor may recommend that

a child restrict physical activity and get plenty

of bed rest. In general, however, exercise has

physical and psychological benefits. Parents or

guardians may feel protective of a sick child,

but they should not try to limit their child’s

activity unless instructed by a doctor. Some

children may even need to be encouraged to

get outside and play to control blood glucose

and improve their blood pressure and the

condition of the heart.

People with transplanted organs have demonstrated the ability to compete in sports. Not

everyone can be an exceptional athlete, but

every year the Transplant Games, sponsored

by the National Kidney Foundation, allow

people with transplants to participate in

friendly competition and show the world that

transplantation provides a new lease on life

and health.

Making Friends

Children with kidney disease may have trouble

fitting in with children of their own age

because of their small stature, their delayed

cognitive development, or the physical effects

of immunosuppressive drugs. Some child psychologists specialize in helping to integrate

children with disabilities and medical problems

into mainstream activities. Participating in regular classroom and extracurricular activities

can help your child develop social skills. Many

areas have summer camps for children with

special needs. Your clinic’s social worker may

be able to help you find appropriate activities.

Preparing to Enter the Work Force

Young adults who have been treated for kidney

failure during childhood must overcome a

number of barriers to prepare for a career and

find a job. The effects of kidney disease can

make learning and academic achievement difficult. Completing the training required for

employment takes extra effort, and some people with kidney disease report that their small

stature creates problems in fitting into adult

environments. Employers may have trouble

understanding kidney problems and may be

reluctant to hire someone whose medical

problems could raise their group insurance

rates. Those with functioning transplants

generally fare best in finding satisfying jobs.

2
People Who Can Help

Many skilled professionals are available to

ensure that your child gets the best possible

care. In addition to the medical staff at your

clinic, you should meet with people whose job

is to help you find the resources you need so

you can fulfill your other obligations at work

and home.

Social Worker

Every dialysis clinic and transplant center has

a social worker who can help you locate financial assistance, identify social services like

transportation or family counseling, and help

with applications for Medicare. The social

worker can tell you about support groups in

your community and ways to reduce the stress

of caring for a child with a chronic illness.

Psychologist, Psychiatrist, or Counselor

Kidney disease can disrupt a child’s life and

create emotional turmoil. A psychologist or

counselor can help your child find ways to

express emotions constructively. Adults and

siblings may also find that counseling helps

them with the conflicts and stresses they face.

For example, medical bills can strain family

finances. A parent or guardian may need to

give up work to care for the child full-time.

Siblings may feel resentment over the huge

amount of attention given to their sibling and

guilt over thinking bad thoughts about the sick

child. Couples sometimes report increased

tension in their marriage when a child is sick.

A counselor can help families deal with conflicts, and social workers or financial counselors can help families meet the financial

obligations that chronic illness creates.

Resources

Websites

Several agencies and organizations maintain

informative websites for people with kidney

disease. The following sites are designed

specifically for children and their parents

or guardians:

MEDLINEplus: Kidney Diseases (General)

www.nlm.nih.gov/medlineplus/

kidneydiseases.html

The National Library of Medicine maintains

MEDLINEplus, a resource providing health

information for consumers. The page on kidney diseases contains links to news articles and

fact sheets about kidney diseases under many

headings, including “Children.”

The Nemours Foundation’s KidsHealth.org

http://kidshealth.org/parent/medical/kidney/

chronic_kidney_disease.html

http://kidshealth.org/kid/feel_better/things/

dialysis.html

The Nemours Foundation supports children’s

hospitals in Delaware and Florida. The KidsHealth website includes articles on many

health topics written for parents, teenagers,

and young children. The pages listed above

contain “When Your Child Has a Chronic

Kidney Disease” and “What’s the Deal With

Dialysis?”—an article written for children.

You can view “Related Articles” and several

more KidsHealth pages devoted to kidney

diseases and their treatments.

National Kidney Foundation: Children With

Chronic Kidney Diseases: Tips for Parents

www.kidney.org/general/atoz/content/

tipsparents.html

The National Kidney Foundation has developed many programs to help support and

educate patients and their families. This page

contains “Children With Chronic Kidney Disease: Tips for Parents,” which is also available

in brochure form (see Additional Reading).

3
Nephkids Cyber-Support Group for Parents

of Children With Kidney Disease

http://cnserver0.nkf.med.ualberta.ca/nephkids

Nephkids is a listserv, an interactive email

group for parents of children with various

chronic kidney diseases.

Organizations

Several groups offer information and services

to patients with kidney disease. You may wish

to contact one of the following:

American Association of Kidney Patients

3505 East Frontage Road

Suite 315

Tampa, FL 33607

Phone: 1–800–749–2257 or 813–636–8100

Email: info@aakp.org

Internet: www.aakp.org

American Kidney Fund

6110 Executive Boulevard

Suite 1010

Rockville, MD 20852

Phone: 1–800–638–8299 or 301–881–3052

Email: helpline@kidneyfund.org

Internet: www.kidneyfund.org

American Society of Pediatric Nephrology

Northwestern University

Feinberg School of Medicine

Pediatrics W140

303 East Chicago Avenue

Chicago, IL 60611–3008

Phone: 312–503–4000

Email: aspn@northwestern.edu

Internet: www.aspneph.com

Life Options Rehabilitation Program

c/o Medical Education Institute Inc.

414 D’Onofrio Drive

Suite 200

Madison, WI 53719

Phone: 1–800–468–7777 or 608–232–2333

Email: lifeoptions@MEIresearch.org

Internet: www.lifeoptions.org

www.kidneyschool.org

National Kidney Foundation

30 East 33rd Street

New York, NY 10016

Phone: 1–800–622–9010 or 212–889–2210

Email: info@kidney.org

Internet: www.kidney.org

United Network for Organ Sharing

P.O. Box 2484

Richmond, VA 23218

Phone: 1–888–894–6361

Internet: www.unos.org

Additional Reading

If you would like to learn more about kidney

failure and its treatment, you may be interested in reading these publications:

Adventure at Riverside Park: A Story About

Pediatric Dialysis

This story describes a young girl’s experiences

and emotions as a peritoneal dialysis patient.

The book introduces the members of the

health care team and explains the role each

plays in dialysis treatment.

National Kidney Foundation of Indiana, Inc.

850 North Meridian Street

Suite 203

Indianapolis, IN 46204–1108

Phone: 1–800–382–9971

Internet: www.kidneyindiana.org

Children With Chronic Kidney Disease: 

Tips for Parents

Nutrition and Peritoneal Dialysis

National Kidney Foundation

30 East 33rd Street

New York, NY 10016

Phone: 1–800–622–9010 or 212–889–2210

Email: info@kidney.org

Internet: www.kidney.org

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Kidney Disease in Children

Kidneys for Kids

“The Kid,” a booklet written for children

with kidney disease

Diet Guide for the CAPD Patient

American Kidney Fund

6110 Executive Boulevard

Suite 1010

Rockville, MD 20852

Phone: 1–800–638–8299 or 301–881–3052

Email: helpline@kidneyfund.org

Internet: www.kidneyfund.org

Medicare Coverage of Kidney Dialysis and

Kidney Transplant Services

Publication Number CMS–10128

U.S. Department of Health and Human

Services

Centers for Medicare & Medicaid Services

7500 Security Boulevard

Baltimore, MD 21244–1850

Phone: 1–800–MEDICARE (633–4227)

TDD: 1–877–486–2048

Internet: www.medicare.gov

Financing Transplantation: What Every

Patient Needs to Know, 2nd edition, 1996

United Network for Organ Sharing

P.O. Box 2484

Richmond, VA 23218

Phone: 1–888–894–6361 to order 

single copies 

804–782–4841 to order bulk copies

Internet: www.unos.org

Newsletters and Magazines

Family Focus Newsletter (published quarterly)

National Kidney Foundation

30 East 33rd Street

New York, NY 10016

Phone: 1–800–622–9010

Internet: www.kidney.org

For Patients Only Magazine (published

six times a year)

20335 Ventura Boulevard

Suite 400

Woodland Hills, CA 91364

Phone: 818–704–5555

Renalife Magazine (published quarterly)

American Association of Kidney Patients

3505 East Frontage Road

Suite 315

Tampa, FL 33607

Phone: 1–800–749–2257 or 813–636–8100

Email: info@aakp.org

Internet: www.aakp.org

5
U.S. DEPARTMENT OF HEALTH

AND HUMAN SERVICES

National Institutes of Health

NIH Publication No. 06–5165

June 2006

National Kidney and Urologic

Diseases Information Clearinghouse

3 Information Way

Bethesda, MD 20892–3580

Phone: 1–800–891–5390

Fax: 703–738–4929

Email: nkudic@info.niddk.nih.gov

Internet: www.kidney.niddk.nih.gov

The National Kidney and Urologic Diseases

Information Clearinghouse (NKUDIC) is a

service of the National Institute of Diabetes

and Digestive and Kidney Diseases (NIDDK).

The NIDDK is part of the National Institutes

of Health under the U.S. Department of Health

and Human Services. Established in 1987, the

Clearinghouse provides information about diseases of the kidneys and urologic system to people with kidney and urologic disorders and to

their families, health care professionals, and the

public. The NKUDIC answers inquiries, develops and distributes publications, and works

closely with professional and patient organizations and Government agencies to coordinate

resources about kidney and urologic diseases.

Publications produced by the Clearinghouse are

carefully reviewed by both NIDDK scientists

and outside experts. The NKUDIC would like

to thank Barbara Fivush, M.D., and Kathy Jabs,

M.D., of the American Society of Pediatric

Nephrology (ASPN), for coordinating the

review of this fact sheet by the ASPN’s Clinical

Affairs Committee: Tej Mattoo, M.D., William

Primack, M.D., Joseph Flynn, M.D., Ira Davis,

M.D., Ann Guillott, M.D., Steve Alexander,

M.D., Deborah Kees-Folts, M.D., Alicia Neu,

M.D., Steve Wassner, M.D., John Brandt, M.D.,

Manju Chandra, M.D. Frederick Kaskel, M.D.,

Ph.D., President, ASPN, and Sharon Andreoli,

M.D., Secretary–Treasurer, ASPN, also provided

comments and coordination.

This publication is not copyrighted. The

Clearinghouse encourages users of this fact

sheet to duplicate and distribute as many

copies as desired.

This fact sheet is also available at 

www.kidney.niddk.nih.gov.