Developing an Interactive Story
for Children with Asthma
Tami H. Wyatt, PhD, RNa,*, Xueping Li, PhDb,c, Yu Huang, MSd,
Rachel Farmer, MS, RNe, Delanna Reed, PhDf,
Patricia V. Burkhart, PhD, RNg
BACKGROUND AND SIGNIFICANCE
Asthma, an obstructive airway disease characterized by recurrent episodes of breath-
lessness and wheezing, is the most prevalent chronic illness among children in the
United States.1Minority and low socioeconomic status patients are the most likely
to be hospitalized for asthma.2The impact of this disease is striking: not only is asthma
Drs Wyatt & Li, National Institutes of Health, National Institute of Nursing Research
aEducational Technology & Simulation, Health Information Technology & Simulation Lab,
College of Nursing, University of Tennessee, 1200 Volunteer Boulevard, Knoxville, TN 37996,
Engineering, University of Tennessee, 408 East Stadium Hall, Knoxville, TN 37996, USA;
cHealth Information Technology & Simulation Lab, Department of Industrial and Systems
Engineering, College of Engineering, University of Tennessee, 408 East Stadium Hall, Knoxville,
TN 37996, USA;dDepartment of Industrial and Systems Engineering, University of Tennessee,
College of Engineering, 408 East Stadium Hall, Knoxville, TN 37996, USA;
9137 Middlebrook Pike, Knoxville, TN 37931, USA;fStorytelling Program, East Tennessee State
University, PO Box 70684, Johnson City, TN 37614, USA;g202 College of Nursing, University of
Kentucky, Lexington, KY 40536-0232, USA
* Corresponding author.
E-mail address: email@example.com
bIdeation Laboratory, Department of Industrial and Systems Engineering, College of
? Interactive story ? Childhood asthma ? Asthma management
?Internet based program ?Asthma in school ?Coping with asthma
? Interactivity is key to engaging school-aged children in asthma-management programs.
? School-aged children learn in story formats; hence, story is an appropriate teaching
strategy for health-education programs for children.
? School-aged children can manage their own asthma if they are confident in their abilities
and they have support of their peers, family, community, and health care team.
? Asthma programs for children should include ways to avoid asthma triggers; engage
friends, families, school staff, and coaches; and teach strategies, such as monitoring
lung function, stress reduction, and ways to cope with having asthma.
Nurs Clin N Am 48 (2013) 271–285
0029-6465/13/$ – see front matter ? 2013 Elsevier Inc. All rights reserved.
the number 1 cause of hospitalizations for children aged 3 to 12, it also results in a total
of 10.5 million missed school days per year.3
The tragedy is that many of these hospitalizations and missed school days are
preventable. Better asthma management could save millions of dollars per year and
spare patients with asthma and their families the trauma of a hospital stay.4Because
children spend a significant amount time at school, it is important that they engage in
self-care activities and seek help with self-management during these hours.
DEVELOPMENT OF AN INTERACTIVE ASTHMA PROGRAM
Okay with Asthma (OKWA) is a program for school-aged children that was designed
for the school environment but may be well suited for home or clinic use.
Biobehavioral Family Model
OKWA uses the Biobehavioral Family Model (BBFM)5as a framework for the content,
and therefore, promotes self-management skills with the help of family, peers, commu-
nity, and health care providers. It also focuses on the importance of psychological and
bility and usability testing with children as users of the program during focus groups.
It is clear that asthma management should include more than just information about
medications and their uses. Asthma management includes identifying symptoms,
reducing triggers that cause asthma, monitoring lung function, and knowing when
and how to get help from others. In the BBFM, Wood and Miller5propose 3 overlap-
ping “realms of functioning” that help determine the course of chronic childhood
diseases: psychological and emotional functioning, social functioning (including
family, school, peers, work), and biologic functioning (including the actual disease
process). When these areas are balanced, the patient experiences a state of well-
being. This state is interrupted if there is dysfunction in any of the realms. To keep
balance, the child must draw on all available resources, including the family, health
care providers, community, and peers.5
Studies have demonstrated the importance of the family in managing chronic condi-
tions.6Encouraging strong family functioning can reduce child stress and improve
asthma control.6Like other chronic conditions, asthma carries a strong psychoso-
matic component. Increased levels of child stress are correlated with increased
asthma severity7–9and, therefore, may be considered an asthma trigger.
A child with well-managed asthma must feel secure in family relationships and know
BBFM would encourage a child to consider family members as resources to aid self-
for managing chronic illness.5Dysfunctional families, or even familieswith limited finan-
cial means or a mother working outside the home, often have difficulty managing
asthma,10and sometimes caregivers do not model effective coping strategies.
Keeping in mind that children spend most of their waking hours in school or school-
related activities, the BBFM suggests that teaching children to seek resources at
school could be empowering and helpful in managing asthma.5Existing literature
supports school-based interventions, showing that they can help increase knowl-
edge11and self-management.12Many children report concern about having an
asthma attack at school and need encouragement to seek help from providers there.13
Some research, however, shows programs with the greatest benefit involved
advanced providers. Children who demonstrated fewer school absences during and
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after a school intervention program were those who met with an allergist and received
a plan for asthma management.12
Hand-in-hand with the health care resources, the BBFM encourages accessing
community resources. One study showed that home visits by a trained community
health worker improved quality of life and reduced symptomatic days for patients in
the Seattle area.14
Last, the BBFM proposes that peers be viewed as a resource for maintaining self-
management of chronic diseases. In fact, evidence shows that children may rely on
peers as an important part of their self-management. Peer acceptance, independent
of asthma-related support, is correlated with healthy asthma lifestyle choices.15In the
same study, it was found that parental support was only slightly more influential than
peer support on asthma-related behaviors, such as managing asthma flares, avoiding
causative substances, and maintaining a healthy level of physical activity. Educational
initiatives led by peers can have an especially significant impact on attitudes and
perception of quality of life, particularly in boys who have fewer family resources.16
All 4 factors outlined in the BBFM (family, health care, community, and peers) are
significant in the management of chronic diseases like asthma. Researchers and
providers would benefit from using this model to create educational materials that
address not just one, but all of the factors, including the psychosocial strategies that
arehallmark conceptsofthe BBFM.7–9One waytoencouragechildren tomanagetheir
own asthma is to offer a BBFM-based educational program they can use at school.
cations positively affect knowledge, attitudes, behavior, and clinical outcomes.17–19
Studies also indicate that computer-based learning (CBL) is especially helpful for
elementary school students, as programs can help improve knowledge and attitudes20
and increase problem-solving skills.21Interactive games also have shown great
promise, both in increasing knowledge and improving clinical outcomes. An interactive
game developed to improve asthma control among children aged 7 to 17 entitled
“Watch, Discover, Think, and Act” was shown to increase self-efficacy, knowledge,
and internal attributions.22Another study showed that low-income children who used
the program had fewer asthma-related hospitalizations than their counterparts in the
comparison group.23They also reported fewer asthma symptoms, less activity restric-
tion, and better self-management behaviors than participants in the control group.23
that uses interactive narrative to teach asthma management to children aged 8 to 11.
This award-winning program encourages users to describe their feelings and asthma
supportsystems asthey interact with aprewritten narrative and thenadd textto create
their own stories. Because of the successes of the first version of OKWA, the devel-
opers planned a second version that uses similar, but more refined techniques sup-
porting interactivity. The aim of this study was to test OKWAv.2.0’s feasibility and
usability (design, interactivity, functionality, and interface) during the development
process by using focus groups with 8-year-old to 11-year-old children with asthma.
The 2 main foci in developing OKWAv.2.0 were the program’s content and delivery
method. For the program to be most effective, its content must provide asthma
Interactive Story for Children with Asthma
self-management strategies that address all aspects (biopsychosocial) of the disease.
In asthma, as in other chronic conditions, emphasis is placed on the concept of self-
management. Children are urged to follow daily maintenance recommendations,
perform regular monitoring, and appropriately treat acute and severe exacerbations.
A Cochrane review of educational interventions found that an increased emphasis
on self-management was correlated with increased lung function and a greater
perception of self-control of the condition. Self-management also decreased loss of
productivity and reduced asthma-focused emergency room visits.24The key to
increased self-management is education.25,26Some children and families are unable
to manage the disease because they have little concept of their ability to do so,26but
educational interventions can help empower patients and caregivers to take control.
Although research has indicated that patient education by a health care provider is
helpful, some studies are investigating the role trained laypeople play in asthma
education. Horner and Faloudi11found that classroom instruction by a lay educator
improved students’ knowledge of skills and perceived self-efficacy related to asthma
TODAY’S SCHOOL-AGED LEARNERS
Another crucial component in the success of OKWAv.2.0 is its attention to the specific
needs of today’s learners. To engage children,27programs must adopt multimedia-
rich delivery methods that entertain while educating, especially programs designed
to promote healthy behaviors.28In addition to using a multimedia-rich delivery system,
OKWAv.2.0 uses interactive narrative, another effective strategy for educating
Engagement is a term often used to describe a user’s relationship with an educa-
tional medium, including CBL programs. For learning to take place, a user must be
engaged with the material.29Engagement can be defined as the user having positive
emotional responses while his or her complete interest is held by the program; this
may or may not include becoming unaware of time and the presence of others.30
One theoretical framework for constructing engaging materials is the Engaging Multi-
media Design Model, now renamed the Norma Engaging Multimedia Design
(NEMD).31In a study that examined children’s interaction with the computer game
“The Sims,” Norma Said identified 5 factors that facilitated engagement: simulation
interactivity, construct interactivity, immediacy, feedback, and goals.31Simulation
interactivity describes the child’s ability to “become” a character in the story, whereas
construct interactivity refers to the availability of activities for the child to create or
build in the virtual world. Immediacy is the user’s ability to observe all the actions
and interactions that take place in the system. Children need feedback to show that
their choices matter; without consequences, there would be no point in performing
the actions. The model’s final tenet is goal setting. Whether the goal is set extrinsically
(by the game developer) or intrinsically (the child determining own goals), it is impor-
tant for there to be goals to achieve.32The NEMD is one of the models used to guide
the usability and feasibility testing of OKWAv.2.0 in this study.
Narratives, or stories, are an essential component in oral history, passing of traditions,
and presenting lessons for preschool and school-aged children. As technology
advances, narrative continues to be an essential experience; even computer games
rely on narrative to give meaning to virtual activities.19To be effective, narratives
must have a consistent and coherent plot containing elements of drama as well as
Wyatt et al
character believability and empathy. The narrative must provide some aspects the
user can control, and should promote positive emotions for the duration of use. Inter-
active narrative (IN) is a nonlinear story that allows users to select information, scenes,
and characters (interactive) while developing a sequence of events (narrative) that
culminates in a lesson or event.33–35
Unlike traditional forms of story, IN encourages active learning because the learner
manipulates the content and plot of the narrative based on their input.36Interactive
narratives have the potential to meet a learner’s needs and encourage expression
of thought and feelings while creating one’s own personal asthma narrative. Interac-
tive narrative as an intervention has been successfully used to increase knowledge
and decrease symptoms and emergency room visits in children with asthma.37
tree where branches of the story are different but each story shares the same trunk of
characters and lessons pertaining to asthma Fig. 1. The interactivity of the story tree is
designed to engage learners using the methods presented in the NEMD.31Using this
design model may capture and retain the attention of children better than previous
and potentially learn new information with each use. Because children will likely create
storiesthatarebasedontheir ownillnessnarrative orone they desire,OKWAv.2.0may
give families and health care providers, including school nurses, information about
a child’s perceived illness they might not otherwise receive.38
Fig. 1. OKWA v2.0 interactive narrative story tree.
Interactive Story for Children with Asthma
BUILDING WITH CHILDREN
OKWAv.2.0 was built using an iterative process, which requires the user to evaluate
This process, known as rapid prototyping,39is common in the software development
industry but may not be as common while building applications for children because
software testers are from the same demographic for which the program is being built.
This requires children to participate in focus groups, which occurred in this usability
study. Usability rules or heuritistics, developed by Jakob Nielsen, a nationally recog-
nized expert in Web design and usability testing, guided the testing and analysis of
content and functionality for OKWAv2.0. According to Nielsen,40–42Web-based appli-
cations are evaluated on 5 components: learnability, efficiency, memorability, errors,
and satisfaction. Nielsen40–42also states that testing should occur by the same users
who represent the population for which the application is designed. For this reason,
children with asthma helped develop OKWAv2.0 and gave feedback and suggestions
at intervals during the year that OKWAv.2.0 was developed.
SELECTING ASTHMA CONTENT AND NARRATIVES
To test the feasibility and usability of OKWA, the asthma content for OKWAv.2.0
was updated and reflects the National Asthma Education and Prevention Program,
Panel 3.42The report was thoroughly examined and a list of key content was created
to be included in each of the story branches. A childhood asthma expert who practices
in a regional children’s acute care hospital reviewed the asthma curriculum for accu-
racy and completeness.
Next, the research and development team created a list of activities, settings, and
storylines that would appeal to children. Those children acquainted with the devel-
opers were informally polled and selected their 2 favorite story ideas. A storywriter
incorporated the asthma content into 2 narratives: children snowboarding and
children on a school playground. Because the storywriter was not a health care
provider, it was necessary to consult with her frequently to explain content and ensure
the asthma curriculum was incorporated appropriately. The 2 narratives served as
a foundation or trunk for the story trees. The stories were broken into scenes. At
various points in the 2 stories, a decision point was added so that a user could deter-
mine the sequence of the narrative based on their decision (refer to Fig. 1). The deci-
sion points created a total of 5 different stories, or branches, per story tree.
GRAPHICS AND FUNCTION OF OKWAV.2.0
A graphics artist created the scenes and characters, including character parts, such
as arms and feet in various positions, to create the animation effects. The characters
are ethnically and culturally diverse to represent communities across the United
States. The same characters were used in both story trees and in all the branches
of the story tree. Children who volunteered from local churches were audio recorded
while reading lines from the stories, only after giving verbal consent, which was also
recorded and is stored with the audio files. Once the stories came to life with charac-
ters, select scenes were drafted onto a Web page so that children in focus groups
could begin evaluating components of OKWAv2.0. The program was built with Flash
authoring software and can be viewed on all operating systems and browsers using
the most current Flash player.
Wyatt et al
CONDUCTING FOCUS GROUPS
Methods and Procedures
After this the study was approved by the institutional review boards of the affiliated
of age were recruited from primary schools in a metropolitan area in the southeastern
schools in the inner city region with higher prevalence of asthma, and lower socioeco-
nomic families based on the public school free-lunch program. Nurses at each school
reviewed school records, identified potential participants, and then addressed and
distributed a recruitmentletter,which was sent homeviathechild. To ensure that confi-
recruitment letters. The recruitment letters, however, were returned to the researchers
and included family contact information and the child’s name. This process ensured
the confidentiality of children whose families opted not to participate in this usability
time during the school day. The focus groups, lasting between 30 and 45 minutes,
occurred in either the computer laboratory or the library at each school, with each child
usingacomputerbecausetheprogram isInternetbased.Children weregivenheadsets
given instructions about how to navigate the program nor were they given help while
viewing unless they were unable to proceed. This technique is an important aspect in
determining faulty navigation and functioning and to observe children exploring with
or sections as often as desired. During focus groups, a member of the research team
made observations and field notes while children were quietly viewing the program
and during the question-and-answer portion of the focus groups. The activities of
each focus group varied, as well as the number of users, ages, and race. See Table 1
for a description of the demographics for all focus groups.
Focus group 1 (FG1) evaluated the characters and 3 scenes from the snowboarding
story and 2 scenes from the school playground story. The scenes had limited function
andvery few features,so the children couldfocus on the characters and the navigation
structure from one scene to the next. Scenes with multiple characters were created
with limited function. Children were instructed to begin the program from the home
page and visit the pages as often as desired. Children were also instructed to remove
their headset once they had previewed all pages. After all children completed this
activity, they were asked to describe: (1) what they liked and disliked about the
scenes, (2) their favorite character and why, (3) what they expected to happen next,
(4) how they moved from one page to the next, (5) what they heard, (6) how they would
go back to previous pages, and (7) what they learned about asthma.
Focus group 2 (FG2) evaluated 1 complete snowboarding story and 1 complete
school playground story, which incorporated the feedback from FG1. Each story
included interactive buttons that reinforced asthma content and gave trivia facts,
such as famous persons with asthma. The 2 stories included voices for all characters,
as well as animation in both stories. During FG2, children focused on the navigation to
move from one scene to the next, active icons and links to learn more information, and
how to change from one story branch to the other by answering the decision-point
Interactive Story for Children with Asthma
questions. Children were encouraged to explain how to (1) move from one page to the
next, (2) make the story change, (3) get more information about asthma, and (4) make
the characters talk. Finally, children were asked to explain what they liked or disliked
and what they would change about the program.
Focus group 3 (FG3) and focus group 4 (FG4) were nearly identical in their purpose,
only FG3 reviewed scenes, decision points, navigation, and functionality of portions of
the snowboardingstory tree,whereasFG4 reviewed portionsofthe school playground
story tree. Both focus groups were designed to ascertain engagement and the
5 factors as identified by the NEMD. Sample focus group questions included the
following: (1) Have you ever been in a situation like Jake in the story? (2) What buttons
did you push and what did they do? (3) Tell me all of the different things you saw and
learned about in the story. (4) What happened to Jake and what did his friends do?
Focus group 5 (FG5) and focus group 6 (FG6) were identical and incorporated the
greatest number of design and functionality changes based on feedback from FG3
and FG4. FG6 was the same as FG5 because the developers wanted a broader audi-
ments. Questions in FG5 and FG6 were broad, open-ended questions to encourage
children to express any thoughts, ideas, and likes and dislikes about OKWAv2.0.
Field notes taken during each focus group were entered into an evaluation tool at the
end of the focus group, as the information guided each developmental stage of
OKWAv2.0. Each item listed in the tool was evaluated by the research team to deter-
mine if it was a flaw in the program or merely a preference by the user. Those items
deemed preferences were considered by the developers only if the preference
Total study demographics (all focus groups)
FG 1FG2FG3FG4 FG5 FG6Total
Hispanic or Latino
Not Hispanic or Latino
Abbreviation: FG, focus group.
Wyatt et al
appeared on multiple occasions, which never occurred. Those items deemed usability
flaws were scored and ranked according to the importance of correcting the function
and the feasibility of addressing the flaw. Those items ranking highest were addressed
and changed in OKWAv2.0 before the next scheduled focus group. See Table 2 for
a sample evaluation tool.
Focus Group Study Results
In general, children engaged in the same activities while using OKWAv2.0. Many of
the children looked over their shoulder or to the side to ensure their counterparts
were experiencing the same scenes. Sometimes, the children in the focus groups
would give or elicit help to their peers. Not surprising, the children appeared more
comfortable relying on one another than asking the researchers for assistance. It
can be assumed the children were more comfortable with one another than with
the developers whom they had just met. The greatest revisions occurred between
FG3–4 and FG5, in part, because FG3 and FG4 presented a complete IN with new
features, icons, and buttons not seen previously. Based on user feedback, few
changes were made to the storylines and scenes and no changes were made to
the characters and their voices. The greatest changes occurred with the navigation
and action buttons. A variety of buttons were used throughout the story pages so
that users of the program could report their button preferences and researchers could
observe user behavior while selecting buttons. Navigation and interactive buttons
proved to be the greatest challenge for users. It was not obvious to the users whether
to click on the speaker button to increase the volume or repeat what the character
said. In some cases, the only way that children could identify a clickable object
was by rolling the mouse over areas on the screen to reveal the “mickey mouse glove”
or active link. Instructions and a key to the icons were added at the beginning of each
story Fig. 2.
During FG3, an 11-year-old user grew frustrated because she could not start the
story over before getting to the end of the story. The developers did not anticipate
the need for this type of navigation, but as a result of this feedback, a link was added
Sample evaluation tool of Okay with Asthma v2.0
Focus Group 1 Importance Ease of Achievement
Okay with Asthma
I can’t hear Jakes
Am I supposed to
click on [nebulizer]?
Do I click on [ear] to
make the sound
I think those trees on
the slope are too
What is an action
Interactive Story for Children with Asthma
Fig. 2. Navigation instructions page. (Courtesy of Okay with Asthma v2.0. Available at: http://www.okay-with-asthma.org/OKWAv2/final/OKWA2.htm;
Wyatt et al
Fig. 3. Mobile application of OKWAv2.0.
Interactive Story for Children with Asthma
so that a user could move to the previous page and start the story from the beginning
at any scene in the story.
During one focus group, the users grew concerned that the main character asked
for help from a stranger, which initiated a discussion about who should help someone
with asthma. The users described ways they identified “safe” people, which was typi-
cally by their clothing. Mr Jim Hansen, the ski patrol in the snowboarding scene who
helps the main character with asthma, was revised to include a red cross logo on his
ski jacket along with a hat. In essence, the children helped to identify an important
aspect of seeking help from others—identifying a trustworthy and safe person.
FUTURE VERSIONS OF OKWA
In many cases, users presented ideas that were not feasible to adopt in OKWAv2.0
because of budget constraints but these ideas will be considered in future versions.
Some children in the focus groups wanted to pick a character representing them-
selves. Others wanted to create a character from parts like clothing articles, or hair
and skin color. As expected, some children wanted active elements added to the story
that had little or nothing to do with asthma or the plot of the story. For example, some
users wanted all of the characters in the school playground story to sing a song and all
of the boy characters in the snowboarding story to do somersaults on the slope.
An unexpected positive outcome occurred during FG6. Inner-city schools in
a metropolitan area were targeted because of the relationship between asthma and
children living in inner cities, but the school setting for the last focus group had
a student body of mostly Hispanic population. In fact, the principal estimated that
80% of the students were Hispanic. Many of the teachers were bilingual in Spanish
and English to communicate with the families of their pupils. Although the children
were attending schools with English as the primary language, the parents or guardians
were not English speaking, and, therefore, could not read English or the recruitment
and consent letters prepared for this study. Spanish versions of the recruitment letter
and the consent and assent forms were prepared and approved by the institutional
review board. Two of the study participants in the last focus group were children of
Spanish-speaking parents and required the Spanish version of the study forms, as
well as an interpreter during the consent process. Future versions of OKWA will also
include a Spanish version.
Not surprising, many of the children asked about a mobile application of the inter-
active narrative despite not owning a smart phone. Hence, a mobile version of
OKWAv2.0 has already been created (Fig. 3). Children also inquired about additional
stories and suggested stories that include swimming, playing instruments, and team
sports, such as soccer or baseball.
OKWAv.2.0 includes content from the latest guidelines of the National Asthma Educa-
tion Prevention Program, Panel 3.43The program also allows children to interact with
the characters and make decisions that influence the outcome of the story. This is an
enhanced interactive feature that was not included in the first version. One aspect of
the first version of OKWA that was lost in this version is the child’s ability to add text
to a comic strip story that could be printed. This feature will be considered if evalua-
tions reveal that adding personal text and printing a story are essential to OKWA.
Enhancements and revisions to OKWA resulted from feedback by children, specifi-
cally, children between 8 and 11 years of age with asthma. Obtaining evaluation
data from children through focus groups is not common practice when designing
Wyatt et al
health-related educational programs, but to dismiss children from participating in the
evaluation and development of such programs is short sided. It is possible that
programs built without children’s input will be ill suited for them and appeal only to
the adults who created the program.
Self-paced health-education programs, such asOKWAv2.0, are useful in a variety of
settings provided the content is not facility specific. Children with asthma must learn to
engage resources and assistance from others in a variety of places and settings, just
as is presented in the BBFM.5OKWAv2.0 is intended for use in school clinics, but may
be adopted for use in patient waiting rooms, hospital rooms, or at home. These
programs, however, are only valued and visited frequently if the content is current,
updated, and changes frequently or offers some function that invites the user to revisit
the program again.
With technology advancements, it is now possible to make a story come alive in
ways not possible before except through imagination, play, or with props, screen-
writers, and sets. Now, stories can be interactive with multiple media, such as anima-
tion and sound, and they can change and evolve based on selections or decisions
made by a user. In essence, interactive stories are the simplest forms of technology
gaming but despite their simplicity, they are enticing for school-aged children. This
might be because of the school-aged child’s cognitive development and computer
skills or it may be that children are enamored with stories: stories in story time at
the library, storylines in plays, storylines in movies, and storylines in games.
Technology will continue to advance and the treatment of asthma will also improve.
A wish list for future versions of OKWA is growing and includes more stories, the ability
to build a character by selecting physical features or clothes, and stories in multiple
languages. Additional story trees, new characters, and added interactive features
will keep children visiting and learning how to seek help from others, avoid triggers,
manage their asthma, and learn to live with their asthma.
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