Innovative approaches for teaching children with chronic conditions

Janet k

& Ann

Engvall,

BSN,

Marie

McCarthy,

C

RN,

hildren with chronic health conditions have a large amount of information to learn (Garrand, 1990). Information needs to be presented at the developmental level of each child so that the child can understand it and apply it to his or her daily life. Teaching children of various ages is a challenge, but with the use of a variety of innovative multimedia teaching tools and approaches, it can be done. Teaching tools can also be used to assess knowledge and to promote discussion. Overcoming a child’s misunderstandings is as important as helping him or her learn the facts about the illness (Perrin, 1986). This article describes a number of innovative approaches developed at one large Midwestern hospital to teach children and their parents about insulin-dependent diabetes mellitus (IDDM). IDDM occurs in approximately 1 in 800 children, which makes it one of the most common childhood chronic condi-

September/October

1996

with Chronic Conditions

CDE, PhD,

RN,

PNP

tions (Johnson, 1988). Children with IDDM must learn about monitoring blood glucose levels, insulin injections, dietary modifications, and incorporating all of these into their “normal” daily routine. To facilitate learning and make it fun and interesting, the nurse educator in the pediatric diabetes clinic, with input from the pediatric diabetes team and clinic families, developed the teaching tools and approaches described here.

BEHAVIORAL REHEARSAL Behavioral rehearsal sessions provide opportunities to role play and practice all aspects of an anxiJanet Engvall was a Pediatric Diabetes Educator Iowa Hospitals and Clinics in Iowa City, Iowa. Ann Marie McCarthy

is an Assistant

ety-provoking procedure. During these sessions children have an opportunity to clear up misunderstandings and to ventilate feelings about their condition. Positive coping behaviors are reinforced, giving the children reassurance about their ability to cope effectively (Mansson, Bjorkhem, & Wiebe, 1993). This form of teaching is especially effective for younger children. Dolls and puppets can be helpful when teaching about insulin injections and finger sticks for blood glucose monitoring. A doll with soft vinyl extremities that needles can puncture is used to help teach children how to give injections. Children are told the

in the Pediatric-Ob/Gyn

Nursing

Professor in the College of Nursing

Division

at The University

at the University

of

of Iowa in Iowa City,

lOWa.

Reprint requests: Ann Marie McCarthy, City, IA 52242. J Pediatr Health Care. (1996). Copyright

PhD, RN, PNP, 430 Nursing

of Iowa, Iowa

IO, 239-242.

0 1996 by the National Association

0891-5245/96/$5.00

Building, The University

of Pediatric

Nurse Associates

& Practitioners.

+ 0 25/8/75582

239

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EDUCATION

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Engvall

& McCarthy

ages, and a brief description books are discussed.

TABLE 1

Children’s

books

about

of the

diabetes

TEACHING MODELS Even Little Kids Get Diabetes, Connie White Pirner. The book her until

goes

through

the diagnosis

she goes to school.

of diabetes

There

is a small

in a young

section

child

for parents.

and follows Ages

3-7.

Sarah and Puff/e, A Story for Children About Diabetes, Linnea Mulder, A young

child

deals

diabetes.

There

with

some

is a nice

of her feelings

introduction

written

and frustrations for parents.

about

Ages

RN. having

4-8.

Tough Beans, Betty Bates A young cope

boy

with

discovers

a chronic

for baseball

he has diabetes. condition,

lovers.

Ages

He learns

and take

charge

how

to take

of his life. This

care of himself, is a good

story

8-12.

The Truth About Stacey, Ann M. Martin In this book

from

ers that Stacey betes

and

the popular

series,

has diabetes.

includes

The book

information

“The

Babysitters

presents

on coping

with

Grilled Cheese at Four O’Clock in the Morning, A soccer issues

player

learns

are discussed.

to manage Ages

his diabetes

what

Club,” daily

diabetes.

the reader

discov-

life is like with Ages

dia-

8-12.

Judy Miller, ADA Publication and still play

soccer.

Emotional

8-l 2.

Managing Your Child’s Diabetes, Robert Wood Johnson, IV, Sale Johnson, Casey Johnson, and Susan Kleinman This

book

betes.

gives

Foreword

parents

insights

by Mary

Tyler

and tips

doll has diabetes and are encouraged to practice giving the doll insulin injections and finger pokes. Behavioral rehearsal helps children overcome their initial fear of injections and finger pokes while they gain confidence in themselves and their ability to give injections.

BOOKS Coloring books and story books can help children learn about their disease, discover that they are not alone in having diabetes, and explore ways to cope emotionally with this chronic condition. Books should state facts in a clear, straightforward, age- appropriate manner. For example, books for younger children should present the basic facts such as, “Insulin will make you feel better.” Books for older children should present the facts and also add information on the feelings that children with diabetes may have. As children become older, books that include

240

Volume

10 Number

5

on dealing

with

a child

who

has dia-

Moore.

children trying to cope with conflicts can help children develop problem-solving skills to manage their condition. A coloring book was designed for younger children that told the story of a dinosaur with diabetes, 0.I. the Dinosaur has Diabetes. The nurse educator, a college student with diabetes, a parent of a child with diabetes, staff nurses, and a pediatric endocrinologist all contributed to the development of this book. The wording is at a preschool/ early school-age level. In this 30-page coloring book, D.J. the dinosaur is shown doing basic diabetes care. The text emphasizes that the dinosaur is the same as before he had diabetes and can do everything that other dinosaurs can do. The Children’s Miracle Network funded the printing of the book. Table 1 is a list of children’s books that directly address IDDM or include a character with diabetes; the title, author, recommended

Children often have difficulty understanding the physiologic characteristics and ramifications of IDDM. Models, which provide concrete visual images, can help children learn through exploration, manipulation, and play. To help children understand why insulin is important, a model of a cell was constructed of cardboard, ping pong balls, and glue. The cell, a picture on cardboard, has a hinged “door.” Insulin, represented by a large “key,“ is used to open the door of the cell. Once the door is open, sugar, represented by ping pong balls, enters the cell. Fat, shaped as triangles, enters the cell without the door opening. Ketones, shaped like stop signs, help to teach the children about ketoacidosis. This model is used to describe how cells get energy and what happens when the cells do not get energy from sugar. Similar models are used to explain processes such as hypoglycemia and hyperglycemia.

GAMES Learning can be enhanced with games (Thatcher, 1990) (Table 2). Common, well-known games were adapted to reinforce the information that children need to manage diabetes. These games encourage children to put the facts they are learning into practice, teach decision making skills, and reinforce the concepts. Games are fun for everyone involved. The game “Chutes and Ladders” was adapted to teach cause and effect in relation to diabetes management. The board game is arranged with chutes and ladders across the playing board. An action is described and a consequence follows. For example, if a child eats a snack before exercising, they will move up a ladder, and the result

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will be safe exercise and a normal blood sugar. The child who eats two candy bars will fall down a chute, resulting in a high blood sugar. All aspects of diabetes management such as hyperglycemia, hypoglycemia, insulin, and blood sugar monitoring are covered in the game. Another game adapted to reinforce principles of diabetes selfmanagement is “Uncle Wiggily.” Rhymes are used to move forward or back in the game. The original rhymes were changed to rhymes that reinforce and explain diabetes management. Examples include: “Waits ‘/2 hour after a shot to eat again. Uncle Wiggily moves ahead by ten.” “Uncle Wiggily must jump back by three, because he forgot his shot you see.“ Both games are appropriate for preschoolers and early school-aged children. Trivia games can assess children’s understanding and reinforce appropriate knowledge. The game “Trivial Pursuit” was a model for a game for older children and adolescents. The children compete with parents or peers to see who is more knowledgeable about diabetes. Questions are asked in six categories: Hyperglycemia/Sick Days, Hypoglycemia/Exercise, Diet, Pathophysiology of Diabetes, Insulin, and Potpourri. Questions range from basic to more complex. Coping issues are included in each section. These questions, which often ask the adolescent to see things from a parent’s perspective and the parent to see things from the adolescent’s perspective, are intended to generate discussion. Another trivia game, “Diabetes Trivia Tic Tat Toe,” was developed as a pretest/posttest for adolescents. This game helps teens and their parents discover areas in which they need to gain more information. The questions for the trivia game are split into nine categories: “Ups” (hyperglycemia), “Under the Weather” (sick days),

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TABLE 2 Game information 1. Uncle

Wiggily

Uncle

Wiggily

and

is used

M.R.

Garis

is a trademark under

01988

M.R.

01988

Milton

license

of from

Garis Bradley

Company The Uncle Milton

Wiggily

Bradley

Springfield, 2. Chutes

MA

and

01987 Milton

Ladders Bradley

Bradley

Company

MA 01101

Pursuit

Trivial

Pursuit,

Master

Game

OParker

Family

of Tonka

Beverly,

MA

Corporation

01915

The questions

appearing

Trivial

Family

Pursuit-

are 01992 4. Captain

Horn

Abbot

in Edition Ltd.

Novolin Nordisk

Princeton, 01992

COMPUTER PROGRAMS

NJ Novo

Nordick

Pharmaceuticals

Inc

5. Packy

Edition,

Brothers

Division

Novo

Company

Reserved

Springfield, 3. Trivial

01101

Milton

All Rights

Game

Company

& Marlon

Boehringer Indianapolis,

basic diabetes management are answered on a crossword puzzle. Video games about diabetes are available through pharmaceutical companies. In “Captain Novolin,” a Nintendo game by Novo Nordisk, Princeton, New Jersey, the player must help Captain Novolin, tiho has diabetes, protect the world from aliens disguised as sugary junk food. In “Packy & Marlon,” a Super Nintendo game by Boehringer Mannheim Corp., Indianapolis, Indiana, Packy and Marlon, two elephants who have diabetes, must save their diabetes summer camp from rats and mice who have hidden all the food and supplies. In both games the players must manage the diet, insulin, and activities of the characters. Both games match the insulin regime of the video character with the regime of the child playing the game. These games allow children to make decisions about insulin doses, blood glucose management, and dietary needs while earning points and fighting enemies.

Mannheim

Corp.

IN

“Honey-Coated” (pathophysio “Sugar Shack” (diet), logy), “Downs” (hypoglycemia), “Getting All Worked Up” (exercise), “All Shot Up” (insulin), “The Blues” (coping), and “Potpourri” The “board” for this trivia game is the classic tic-tat-toe game. X’s and O’s are won when correct answers are given, and the first player to get three in a row wins. A diabetes crossword puzzle, developed by an adolescent with diabetes, assesses knowledge about diabetes. Questions about

Computer-assisted instruction (CAI) adds an element of excitement that is largely unavailable with other teaching methods (Wheeler et al., 1987). CA1 allows for paced learning, immediate feedback, and active responding. “HyperCard” was used to develop CA1 for older school-aged children and adolescents with diabetes. This Macintosh program can present information as text, graphics, video, music, voice, and animation (Chen, 1990). The diabetes CA1 has four sections: the pathophysiologic characteristics of diabetes, hyperglycemia, hypoglycemia, and the use of insulin. Information presented in each area is followed by posttests. Sound emphasizes concepts and promotes retention. For example, the sound of a flushing toilet is a reminder of frequent urination, a

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symptom of hyperglycemia. An airplane sound is correlated with insulin peaks and emphasizes the difference between short- and intermediate-acting insulin. Sound also provides positive reinforcement of correct answers to test questions. Animation in the form of a bouncing ball demonstrates the symogyi rebound phenomenon. The ball bounces on the screen to represent the blood sugar going low and then “bouncing” up high. Animation is also used to illustrate drawing up and injecting insulin. The interactive nature of the CA1 program allows learners to adjust the content, pace, and instructional strategies to their own needs. Programs can be set up to review content followed by a knowledge assessment, or the knowledge assessment can be scattered throughout the program. Correct answers are reinforced with sound, positive written messages, and flashing screens to help increase self-confidence and self-esteem. If incorrect answers are chosen, the child can review ‘information in a nonthreatening way. Testing on the CA1 helps children apply knowledge to daily situations. The diabetes CA1 is used with children who have recently received the diagnosis or who have been admitted for reeducation. Children and their parents are first presented information in classes with the nurse educator and then use CA1 to reinforce material presented in class. In the reeducation of adolescents CA1 stimulates parents, the nurse educator, and adolescents to discuss issues that might not have otherwise been mentioned.

PEER ROLE MODELING A powerful learning method for children is through modeling, when children learn by seeing others perform an action, particularly if the others are either similar in

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age or are respected by the child (Bandura, 1977; Coucouvanis, 1990). In an effort to provide positive role models for the children in the diabetes clinic, the nurse arranged for a number of college students with IDDM to set up and staff a “teaching room” during routine clinic hours. The teaching materials that have been discussed are available. When families are waiting in the clinic to see various health professionals, they are encouraged to go to the “teaching room” to talk with the students and other families.

SUMMARY The use of a wide range of innovative teaching tools and approaches has helped the pediatric diabetes education program at this center. Unique presentations of standard information generate enthusiasm for learning about any chronic illness and help develop self-management skills. The resources are fun and provide laughter and jokes during what is often a very stressful and difficult period of adjustment for children and their families.

& McCarthy

Chen, L.C. (1990-1991). Interactive video technology in education: past, present, and future. Journal of Computer-Based Instruction,

29(l),

5-19.

Coucouvanis, J.A. (1990). Behavior management. In M.J. Craft & J.A. Denehy (Eds.), Nursing

interventions

for infants

and chil-

dren (pp. 151-165), Philadelphia, PA: W.B. Saunders. Garrand, J., Mullrn, L., Odytom Joynrd, J., et al. (1990). Clinical evaluation of the impact of a patient education program. The Diubefes

Educator,

16(5), 394-400.

Johnson, S. B. (19%). Diabetes mellitus in childhood. In D. K. Routh (Ed.), Handbook of pediatric psychology, (pp.931). New York, NY: Guilford Press. Mansson M. E., Bjorkhem, G., & Wiebe T. (1993). The effect of preparation for lumbar puncture on children undergoing chemotherapy. Oncology Nursing Fouum,20(l), 39-45. Perrin, E.C. (1986). How kids understand diabetes. Diabefes Forecast, June, 36-39. Thatcher, D.C. (1990). Promoting learning through games and simulations. Simulation

&Gaming,

21,262-273.

Wheeler, L. A., Golden, M. l?, Wheeler, M. L., et al(1987). Beta&d-Lessons learned while developing a microcomputer pediatric case simulation. Diabetes Educator,

23(4), 402-405.

REFERENCES Bandura, A. (1977). So&l learning theory. Englewood Cliffs, NJ: Prentice-Hall, Inc.

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