chronic pediatric illnesses: impact and coping during the elementary school years ashley wirtz dr....
TRANSCRIPT
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.