Chronic Pediatric Illnesses:Impact and Coping During

the Elementary School YearsAshley Wirtz

Dr. Laraine Glidden, Mentor

Chronic Pediatric Illnesses

• Chronic conditions affect people for extended periods of time, often for life.

• 20% of school-aged children are diagnosed with a chronic condition.

• There has been a steady increase in incidence, but also survival rate.

A Child’s Life

HOME:

parents

siblings

SCHOOL:

teachers

classmates

COMMUNITY:

friends

social activities

CONDITION:

treatment

side effects

Meet 6-year-old Jordan

• 1 of 8,500 children

• 90% chance of survival

• Diagnosed with a brain tumor when she was 5

• Jordan is now 6 years old

• She is repeating kindergarten

During Jordan’s Absence

Jordan:– Has had 2 surgeries, weekly chemotherapy,

and irradiation to the head twice– Spent 6 of 8 weeks hospitalized– Has only been in contact with other children

with cancer, her doctors, and her parents– Has not practiced her school work

Jordan’s First Days Back to School

• Jordan looked very different.

• Her friends were distant and seemed afraid to talk to her or touch her.

• Mrs. Smith, her teacher, let her play all day in the corner without completing any work.

• The dust on the playground forced her to stay in the nurse’s office during recess.

Why Jordan Repeated Kindergarten

Academic Competence (Madan-Swain & Brown, 1991)

– Excessive absence loss of in-class time– Treatment impaired cognitive function– IEPs false teacher assumptions

Social Adjustment (Shelby et al., 1998)

– Excessive absences less peer interaction– Physical differences stigma, self-concept– Treatment behavior, mood, maladjustment

Now, meet 9-year-old Tyler

• 1 in 400 children

• Diagnosed with type 1 diabetes

• Tyler is a 9 year old 4th grader

Tyler’s New Life with Diabetes

• Regulation of blood glucose

• Administration of insulin

• Recognition of symptom warning signs

• Many period absences from school

• Awareness of physical activity/strain

• Knowledge of food consumption

Immediately After Tyler’s Diagnosis

• Tyler returned to school

• He is allowed to eat snacks and have drinks in class as needed, or go to the nurse.

• Tyler is exempt from many classroom chores, procedures, and routines.

• Mrs. Jones gives Tyler extra attention.

• His friends resent his “special treatment.”

Tyler’s Problems in School

Academic Competence (Epsy et al., 2001)

– Periodic Absences “chopped” lessons/units– Self-efficacy ability to learn; motivation– IEPs unnecessary accommodations

Social Adjustment (Moussa et al., 2005)

– Absences fewer opportunities– Limitations participation, self-esteem– Regulation adjustment/denial, behavior

What would have made things easier for Jordan and Tyler?

• Adaptation- adjusting to changes

• Coping- using strategies to manage physical and psychological anxiety caused by stressful problems, situations, emotions– Outcome depends on many factors

Normalization preparing for reentry and reintegration into the school world(Worchel-Prevatt et al., 1998)

Making Reentry and Attendance Easier

• Communication and teamwork:Home + School + Hospital = the Child

• Education and awareness– Prepare the school

• Help the child adjust:– Schoolwork, tutoring– Encourage healthy behaviors (diabetes

especially)– Easier if child is connected to a social group

In SummaryCANCER TYPE 1 DIABETES

12 major types = 90%

ALL is most common

Type 1- insulin dependent,

Diagnosed in childhood

Curable; 90% survival Permanent; regulated

8,500 new cases/year

1 in 6667 children

10% of all known 1 and 2

1 in 400 children

5-14 years of age 10-14 years (puberty?)

Unknown cause: heredity and/or environment

Heredity- increase chance by 10-50%

In SummaryCANCER TYPE 1 DIABETES

Chemotherapy, radiation, surgery

Healthy routine, diet, exercise

Hospital or clinic treatment

Many visits to physicians

Home treatment

Few visits to physicians

Long-term absences Periodic absences

Deficits likely

(type-dependent)

Modifications necessary

Deficits unlikely & rare

Modifications unneeded

In SummaryCANCER TYPE 1 DIABETES

Frail, visual changes, limited motor function, decreased immune system

Some decreased activity determined by glucose levels

Fewer opportunities for social interactions

Social opportunities interrupted

Negative behavior- maladjustment, medication

Negative behavior- defiance, failure to adhere

References• Epsy, K. A., Moore, I. M., Kaufmann, P. M., Kramer, J. H., Matthay, K.,

& Hutter, J. J. (2001). Chemotherapeutic CNS prophylaxis and neuropsychogic change in children with acute lymphoblastic leukemia: A prospective study. Journal of Pediatric Psychology, 26, 1-9.

• Madan-Swain, A., & Brown, R. T. (1991). Cognitive and psychosocial sequelae for children with acute lymphocytic leukemia and their families. Clinical Psychology Review, 11, 267-294.

• Moussa, M. A., Alsacid, M., Abdella, N., Refai, T. M., Al-Sheikh, N., & Gomez, J. E. (2005). Social and psychological characteristics of Kuwaiti children and adolescents with type 1 diabetes. Social Science and Medicine, 60(8), 1835-1844.

• Shelby, M. D., Nagle, R. J., Barnett-Queen, L. L., Quattlebaum, P. D., & Wuori, D. F. (1998). Parental reports of psychosocial adjustment and social competence in child survivors of acute lymphocytic leukemia. Children’s Health Care, 27(2), 113-129.

• Worchel-Prevatt et al. (1998). A school-reentry program for chronically ill children. Journal of School Psychology, 36(3), 261-279.