1 INTRODUCTION AND MOTIVATION

An emergent area of great impact and significance is the application of mobile and ubiquitous computing
technologies to chronic healthcare [2, 16, 47, 50, 86, 96]. Chronic health conditions typically include all
impairments or deviations from normal [101] that last three or more months [98]. The long-lasting nature
of these illnesses makes record-keeping and long-term analysis of diagnostic and evaluative measures
both extremely important and very challenging. Not only must symptoms, interventions, and progress be
documented over very long periods of time, but also they must often be recorded in the middle of
everyday life, complete with the challenges of documenting while doing a wide variety of other activities.
Capture and access technologies – those ubiquitous computing technologies that enable recording and
access to recorded data [1, 112, 113] – are particularly promising for monitoring the effectiveness of
interventions for chronic conditions. Health and behavioral data can be captured, analyzed, and mined
over time providing valuable evidence for tracking the progress of interventions [50].
This research will examine the role that novel mobile and ubiquitous computing technologies can
play in monitoring and analysis for chronic care of young children. Many definitions are used for
chronic health conditions in childhood [116], but for the purposes of this proposal, a chronic health
condition is one that is physical or neurological, lasts for an extended period of time, brings about
significant change in the life of the child, and requires more than the usual amount of care [26]. In very
young children, chronic illness can be particularly challenging for two reasons: (1) chronic illness, if
contracted and survived in childhood, is with the patient for many more years than chronic illness that
begins in adulthood and (2) chronic illness in children typically requires the family to play a more
significant role than in other situations [38]. Family members jointly suffer from time spent away from
school and work, loss of sleep and time spent in transit to or at physicians’ offices and hospitals [109].
An examination of chronic care for children therefore indicates three major challenges. First,
technological interventions must be developed that support better record-keeping and associated
visualization and hypothesis testing to allow caregivers to understand the impacts of their
pharmaceutical and behavioral interventions. Second, these interventions must be understood in the short-
term to support testing of clinical efficacy and also over the lifetime of these patients whose chronic
conditions can span several decades. Third, the focus of these technologies must be not only on capturing
and allowing access to appropriate data but also in accomplishing these goals while easing the extensive
burden on families. In this work, we will address these challenges for two specific domains as an
enabling step towards understanding and addressing the potential of mobile and ubiquitous computing
technologies for chronic healthcare needs of children generally. The two identified populations -
premature infants and preschool-aged children with autism spectrum disorder – are representative of
children with chronic health conditions and of particular interest due to the focus on early intervention
and the substantial documentation and monitoring involved in treatments for these populations.
The work outlined in this proposal focuses on specific aims for using mobile and ubiquitous computing
technologies to support caregivers of young children with chronic conditions. Specifically, we will study
the needs of caregivers within two representative communities of children with chronic health concerns;
create novel technologies to support their needs particularly in terms of record-keeping, visualization, and
assessment of interventions; and deploy, evaluate, and iterate on these technologies to produce both short
and long-term health benefits. This work includes opportunities to advance the state of the art in mobile
and ubiquitous computing for healthcare, particularly in relation to record-keeping and data analysis.
2 RELATED WORK
Over the last decade, mobile and ubiquitous computing solutions for healthcare have become increasingly
prevalent in both research and commercial efforts. These systems and applications have the potential to
improve patient care in a variety of locations for a variety of ailments, improving the level of care offered
and the efficiency with which it is delivered. In practice, the majority of research in pervasive computing
technologies for healthcare has been focused on hospital work [4, 6, 8, 13, 14, 18, 28, 33, 62, 80, 88, 102,
103, 106, 107, 108, 110]. Many other researchers have focused on other acute medical concerns such as
emergency care [10, 12, 46, 78]. As noted in the introduction, however, opportunities exist for
applications and systems specifically dedicated to chronic healthcare.
Life expectancy in the United States increases each year and alongside it grows the “prevalence of
chronic conditions and their associated pain and disability,” which are further compounded for those of
lower socio-economic status [19]. In response to this growing concern about chronic health at the end of
the life span, major research efforts have focused on “smart home” technologies and the concept of
“aging in place” (e.g., [5, 30, 63, 76, 85]). Many of the applications of these ubiquitous computing
systems for the home center on concerns about medication compliance and adherence (e.g., [71, 84] or
diagnosis, monitoring, and wellness over time (e.g., [7, 23, 24, 25, 90, 92, 104, 105]). Others focus on the
detection of medically significant, and often acute, events for chronic patients (e.g., [31, 45, 66]). Across
all of these application areas is a general research question about the acceptability and usability of these
technologies in homes and other personal areas necessary for healthcare monitoring [15, 25, 77, 118].
The increased prevalence of chronic health conditions, however, is not just at the older end of the
lifespan. As survival rates from acute events in very young children rise, chronic health conditions in
children have also increased. Thus, researchers have begun to examine particular issues surrounding
chronic health conditions for children. Of particular interest to this proposal are projects related to
enabling families to cope better with the chronic illness of a child (e.g., [68]). Findings indicate that
families who are educated about a condition and involved with the management of it can better
cope [29, 119]. In part, this education may decrease stress and anxiety for the caregivers as they become
more expert and involved in the care [29, 69]. These findings also indicate that greater education and
involvement in care correlates to higher rates of compliance with treatment regimens [29]. These
results mirror findings with adult chronic diabetes patients who showed increased locus of control and
increased compliance when better educated and able to test data about their health themselves [86]. They
also further support our interest in developing recording and analysis technologies that will directly
involve parents and their families in understanding and treating the conditions of pediatric patients.
In addition to issues surrounding chronic health conditions, the research described in this proposal focuses
in large part on issues with record-keeping in healthcare more generally. Alongside the increased
prevalence of both electronic medical records (EMR) and personal health records (PHR), many
researchers – including the PI – have examined the integration of mobile and ubiquitous computing
technologies into the documentation process. For example, efforts such as NOSTOS [11] and Abaris [73,
74] combine digital pen, large display, and personal computing interfaces to seamlessly integrate digital
record-keeping with existing work practices. These applications alongside a firmer understanding of
individual responses to and concerns about personal health records (e.g., [21, 40]) have the potential to
enable more personalized, ubiquitous, and localized medical care.
3 BACKGROUND AND PRELIMINARY RESULTS
We have recently begun exploring the space of pervasive healthcare technologies for caregivers of
premature infants and of young children recently diagnosed with autism spectrum disorder. These domain
areas, while complex and diverse individually, have some important similar characteristics. Significant
challenges for them both have emerged that fit together into this research agenda in the areas of recording
and analysis technologies and caregiver support. These initial explorations serve as guidance for the work
we will complete as part of this proposal, and we present those preliminary results here.
3.1 Supporting caregivers to conduct assisted exercise for premature infants
Over the past two decades, the incidence of preterm births (born at less than 37 weeks of gestation) has
increased dramatically and in 2002 accounted for 12% of live births in the US [44]. Furthermore,
advances in perinatal care have improved the chances for survival of low birth weight infants [43].
Children with extremely low birth weight (ELBW) have been found to show significantly higher rates of
functional limitations compared with those in the normal birth weight range for eight year olds in the US
[43] and Australia [9] and for six year olds in the UK [87]. Furthermore, in Hack et al’s study, 64% of
ELBW children at age eight demonstrated one or more limitations, including conditions such as asthma,
cerebral palsy, impaired vision, and cognitive and social disabilities [43]. Thus, an improvement in care
for these preterm infants is likely to reduce the incidences and burdens of other chronic conditions over
time. One of the primary limitations in delivering this care, however, is that so much of it must occur in
the Neonatal Intensive Care Unit (NICU) as opposed to at home. Parents and an overburdened healthcare
system, however, have strong motivation to move the infants from the hospital to home as soon as
possible. Thus, advances in treating and monitoring these infants from home are critical to
continuing their care while supporting efforts to reduce hospital stay length.
Weight gain is a critical determinant of healthy outcomes in premature infants. Thus, interventions that
improve body mass accrual substantially reduce length of stay in the NICU, influence standard of care,
and may continue to improve health outcomes over a lifetime. One such treatment is the use of assisted
exercise [83]. In 2002, our project collaborators studied 24 preterm infants born at 28 weeks with an
assisted exercise intervention begun 4 weeks after birth. The exercising infants gained approximately 50g
per week more than the infants in the control group. These researchers are now in the final year of
completing a large-scale five-year clinical trial of the use of 4 weeks of assisted exercise in the hospital in
50 otherwise healthy preterm infants and seeing extremely positive preliminary results in terms of both
increased body mass and increased movement.
Although these outcomes are promising, time spent in hospital should not be extended for therapeutic
interventions that can be conducted at home. There are a variety of challenges to implementing any
exercise routine at home, however, and many of these are compounded when considering infants. Parents,
often sleep-deprived and confused, may forget how to complete the exercises, or not do them at all.
Furthermore, it is incredibly challenging for researchers and clinicians attempting to understand the long-
term impacts of any of these home interventions without a guarantee of regular compliance with the
routine, or at a minimum documentation of when and how they were completed. Thus, we have begun to
design new tools for logging exercise activities at home, prompting caregivers to complete these
activities, and enabling simple communication with the research and medical staff.
As an additional challenge to this work, the majority of the patients served at the NICU for our medical
center are lower socio-economic status, and many are not native English speakers. For example, although
the Internet may be promising for home health interventions, nearly half the patients in our NICU have
English-speaking Hispanic parents who may rely more on non-Internet based means of obtaining
information and communicating [57]. In recent interviews with eight mothers of preterm infants from our
NICU, the majority of mothers reported not having broadband Internet at home but being willing and able
to access information, email, and text messaging from their mobile phones instead. In our work, we are
concerned with not only understanding how mobile and ubiquitous computing technologies might enable
the transfer of assisted exercise interventions from the NICU to the home through prompting and
recording technologies, but also how these technologies might be designed in a culturally and personally
sensitive manner, such as through using mobile phone and Spanish-language platforms.
3.2 Documenting and understanding progress in preschool-aged children with autism
Another dramatically increasing childhood chronic disorder is autism spectrum disorder (ASD) [19]. In
contrast to ELBW infants, children with autism are often not identified as infants. Symptoms of ASD
often do not manifest themselves until a child is 2 or 3 years old but then are typically present throughout
the lifetime [93]. Although there is some evidence of increased mortality rates in individuals with autism
[36, 37, 41], the vast majority of children with autism grow into adulthood, extending the costs of care
across a lifetime [39]. Just as with ELBW infants, early and consistent intervention are key components to
improved quality of life for children with autism and require the development of innovative, cost-
effective early treatments, including those conducted in homes and schools.
Documenting and understanding the progress of children with autism, whether behavioral or skill-based, is a
significant goal for special educators and parents alike [48, 50, 53]. In her past work, the PI developed
technological supports to functional behavior assessment (FBA), in which caregivers work to try to
understand the function of inappropriate behaviors [100]. This best practice process is difficult, time-
consuming and error-prone, particularly when practiced in the natural environments of classrooms and
homes [49]. To augment caregiver ability to complete this important but challenging process, therefore,
we developed an application to support FBA called CareLog and evaluated it in a deployment study with
four teachers and eight students in one special education school. Using a mixed method approach to
understand the design considerations for technology to support FBA, we developed five design principles
for the creation of a system to support FBA in schools. We then used these guidelines to design, develop,
and deploy CareLog. This case study demonstrated that the usage of the design process and guidelines
produces a successful system for conducting FBAs in schools. Our evaluation showed the system can be
usable by teachers with minimal training and little impact on their workload. Despite the potential danger
of being an invasive application, the system resulted in minimal intrusion to the environment and the
teaching activity with substantial benefit to the documentation, monitoring, and diagnostic activities [49].
We have begun to apply this same iterative, cooperative design process to supporting caregivers in their
documentation and analysis needs for younger children alongside interventions to support those children
directly in building their skills around language, time, and needs expression. Interventions to support
young children with cognitive and social developmental disabilities often include visual elements [51, 56,
61, 99]. Support is required both for building communication and language skills and for understanding
time and activity sequences. Current tools for supporting these needs include a variety of analog visual
artifacts. These artifacts use words, images, and tangible items to represent objects, activities, and people
that are central to the child using them. Use of these tools has been shown to increase the communication
and understanding levels of children with autism spectrum disorder (ASD) [20].
We have begun to develop digital tools to augment these analog capabilities using interactive and
collaborative mobile systems [51, 70, 89], what we call Mocotos for Mobile Communication Tools. We
have been using a similar iterative approach to that which proved successful for the PI in past work with
this population, combing formative observations and interviews with prototyping and participatory design
from domain experts. We first made use of previous research, including a multi-year ethnographic study
of caregivers of children with autism [47, 50], focus groups centered on children with autism spectrum
disorder and their caregivers [48], and an in situ study of the deployment of a new ubiquitous computing
technology for classrooms behavior management of children with special needs [49].
We have been working closely with two schools, an Interagency Assessment Center for children from 18
months to three years old enrolled from all over the county and a special education pre-school1. We are
also collaborating with researchers from the UCI Medical Center and the 4OCKids neurodevelopment
clinic. We have consulted with three experts in assistive technology and classroom management. We
visited nine special education classrooms at two sites in the local Irvine area and interviewed ten experts
and teachers at those sites in small groups or individually for approximately one hour each. Through these
activities, we have been able to more fully understand the documentation, intervention, and education
needs of very young children with autism from the time of their initial diagnoses until they are school-
aged (typically around five years old). Our research agenda includes use of smart classroom and mobile
technologies for augmenting communication and understanding with visual tools. These systems will
improve the documentation, analysis, and collaboration between caregivers in addition to providing easier
and more flexible mechanisms for child-caregiver communication through mobile access to visual
communication supports and automated documentation of actions.
4 SPECIFIC OBJECTIVES
                                                                                                               
1  We are attaching letters of collaboration from two local agencies: Irvine Unified School District Early
Childhood Learning Center and Orange Country Department of Education Special Schools Program.  
There are four specific objectives to this work over the next five years.
First, this work focuses on designing, developing, and deploying mobile technologies for the use of
recording and data analysis as part of comprehensive healthcare agendas for early childhood
development for two chronic conditions: extremely low birth weight and autism.
• What types of interactions support the goals of caregivers and medical professionals in documenting
and analyzing health data?
• What design features are necessary to ensure minimal burden to caregivers?
• What features for visualization and data mining support appropriate data analysis by caregivers and
medical professionals?
• How do caregivers and medical professionals begin to integrate the use of mobile recording
technologies into their current practices?
Second, because many mobile and ubiquitous computing technologies for healthcare necessarily engender
compilation of significant personal health information, this work seeks to understand individual
perceptions about and reactions to recording technologies in their homes and schools in support of
care for children with chronic conditions.
• In what situations would manual or automatic recording of behavioral and health data be appropriate?
• With whom would caregivers be willing to share these records?
• How should such recording and sharing be accomplished?
Third, this work seeks to understand the short-term health outcomes for this type of recording and set
up the potential for examining long-term health outcomes.
• What is the health impact of use of mobile technologies on the development of the pediatric patients?
• How does the use of mobile technologies impact the health of pediatric patients and their caregivers?
Finally, this research agenda seeks to provide a platform for design and development of future
innovative mobile and ubiquitous computing technologies in support of other chronic care domain
problems, in particular for children but potentially also for other chronic patients.
• What mapping between features and benefits is likely to generalize to other chronic care domains?
• Can the mobile and ubiquitous computing technologies be adapted without radical changes to support
these other problem domains?
• Which guidelines need to be provided to other researchers and applications developers to create
innovative technologies in support of other chronic conditions?
5 RESEARCH ACTIVITIES
In this work, we are focusing on using iterative design and evaluation of mobile computing
technologies for use by caregivers of very young children with chronic health conditions. We will focus
on using interview, participatory design, and field research methods to uncover needs for chronic
care, design novel mobile technologies in support of these needs, and assess their impact.
5.1 Guidelines for developing socially appropriate recording technologies for interventions in
support of chronic healthcare for young children
This project will result in cohesive and generalizable design guidelines for innovative and supportive
recording technologies. These guidelines will be developed by coupling what has been learned in prior
work focused on chronic needs for children and teens with dedicated formative studies focused on the
needs of infants and toddlers and their caregivers.
In previous work, the PI focused on recording in homes for therapies for school-aged children with autism
[47, 53, 73, 75], in schools for analysis and diagnostic efforts for children with a variety of special needs
[47, 48, 50], and in homes of parents with no reason to suspect the potential of a developmental delay for
early detection of such delays [72]. In those projects, a consistent theme emerged of providing access to
therapeutically relevant data at multiple levels of granularity. This visualization plus “drilling down”
approach allowed caregivers to quickly recognize trends (e.g., by glancing through automatically
generated frequency counts or histograms of behavioral data) but also to solve problems and analyze
effects of interventions at more micro levels (e.g., by watching video or examining detailed sensor
streams). This previous work provides a foundation from which to launch further projects in support of a
variety of chronic conditions for children. The proposed work extends this work with a focus on young
children (under the age of five) who are at risk for lifelong challenges – either due to extremely low birth
weight or directly following an autism spectrum disorder diagnosis.
As described in the preliminary results section, we have begun interviewing parents, pre-school teachers,
and other caregivers of children with ELBW or ASD, providing the groundwork needed to start on the
work described in this proposal in the near future. These interviews have been and will continue to be
conducted at the site of care whenever possible (e.g., in homes, at the Neonatal Intensive Care Unit, in
schools). Sessions include time surrounding the interviews to observe caregivers interacting with the
children, their current record-keeping practices, and any other assistive artifacts. The interviews are semi-
structured in nature, allowing participants to lead the researchers to those issues that are most pressing
while allowing the researchers to focus on the particular record-keeping needs for chronic care. In
addition to preliminary interviews conducted in the past year of mothers with children presently admitted
to the NICU and teachers and parents of children with autism, interviews will be conducted until data
saturation has been reached, approximately 10 each of parents of ELBW children, pre-school teachers
and special educators, and medical professionals involved in neonatal care for a total of approximately 30
interviews. In the first year of this proposed work, these data will be analyzed alongside data from
prior research efforts, including 41 interviews with caregivers of children with autism [48, 50] and 21
interviews with parents and secondary caregivers of children without a special needs diagnosis [72].
Through this work, we will have a firm understanding of the record-keeping needs of caregivers of
young children with ELBW or ASD. We will also create an in-depth set of guidelines for designing
these technologies in socially appropriate and adoptable ways. These guidelines will not only be useful
to us in our following aims to create such technologies but also to the larger community of researchers
interested in developing technologies for chronic care, for record-keeping, and/or for children’s health.
5.2 Recording technologies for assisted exercise for premature infants
One of the key considerations for implementing assisted exercise interventions at home is adherence to
the exercise protocol. When in the NICU, physicians, nurses, and physical therapists work together to
implement the intervention and to document their activities. At home, a caregiver may be working alone
with little or no support. Furthermore, parents often live a long distance from the nearest NICU, and even
if close, it can be difficult to schedule time with both the parents and the physicians. Thus, we are
interested in designing technologies for use at home. By monitoring the assisted exercise routine, staff
will be able to provide extra support for caregivers. Furthermore, integrating these tools and activities into
the exercise intervention, we will encourage caregiver adherence to and involvement in the protocol.
Increased adherence will improve the outcomes of the intervention, and increased involvement will
decrease the stress and burden on caregivers who feel more in control and engaged [29, 69, 119]
In the first year, we will develop a mobile record-keeping system for parents of newborns
conducting in home assisted exercise routines. This record-keeping system will enable parents to log
their activities in an easy, portable, and convenient manner by including simple input forms that can be
completed with only a single hand in just a few minutes – an absolute necessity with a newborn baby at
home. At the same time, this system will report these data at a distance over the mobile phone networks to
our medical collaborators allowing for real time or near real time prompting, feedback, and support.
 Finally, the system will represent the exercise data
back to the caregiver, such as through simple
visualizations on the background image of their
mobile phones indicating that exercise has been
completed regularly (or not) [22]. The design of this
prototype system will be largely based on the results
of the interviews and observation sessions described
in section 5.1. Furthermore, the system will be
designed concurrently with these activities and in
tight collaboration with medical experts in assisted
exercise, enabling us to work iteratively and provide
a socially and medically appropriate solution to the
needs of these various stakeholders.
In the second year, we will conduct a pilot study
of mobile record-keeping for premature infant
exercise at home. In this study, our medical
collaborators will train 16 infant caregivers to Figure 1: Exercise Program—Diagram of the proposed
perform the assisted exercise intervention at home interventions (Drawings adapted from Home Program
for four weeks. The physical activity program used Instruction Sheets for Infants and Young Children.
Jaeger D.L., 1987, 378-380)
in this work builds on previous best practice [65, 91]
(see Figure 1). We will conduct home visits for
observations and in-depth interviews, collect logs of exercise activities, and conduct in-office visits
including biometric measurements of infant progress (e.g., weight, muscle mass, bone density). Half the
caregivers will use traditional methods of paper-based logging to record their daily exercise. The other
half will be given our prototype mobile system through which they will log data about their activities and
stay in touch with the researchers. Additionally, based on results from our initial interviews, we will
F likely employ some prompting features, such as generating an alert each day at a prescribed time if an
i exercise log has not been completed for the day, to encourage participants to conduct the exercises and
g
u
log data about these activities.
r In this study, we will also utilize Hymovich's Parent Perception Inventory (HPPI) [58, 59] to measure
e parent distress and understand other issues that may come up during the first month at home with a
 
1
newborn infant who has a chronic condition. The 64-item concerns section of the instrument is the most
: relevant to this work. The concerns section focuses on those issues about which parents want information
  and concerns centered on relationships with others, resources (e.g., financial, childcare), and the needs of
T the respondent (parent). Use of this instrument will help us to understand the needs of the parents and the
h potential features we can add to the technologies we are developing. For example, in a study of caregivers
e
 
and childhood asthma, the instrument was used to determine that parents generally wanted more
A information on the child’s medication regimens, prescribed treatments, and emotional and intellectual
s development [79]. In that same study, the parents also reported concern about extra demands on their
s time, feeling worn out, having enough time for relaxation and fun, financial considerations, spousal or
i partner-related challenges, and concerns about the child’s self-image and ability to participate in
s
t
medication regimen. Uncovering these types of concerns will enable us to explore other technological
e interventions that might be deployed to support this community of caregivers. For example, the findings
d from the childhood asthma study indicate that providing real-time access to information about specific
  medication treatments at the time they are being delivered would be helpful to meeting parent information
E needs. We expect the particular needs of the parents of newborn ELBW children to be different, of
x
e
course, but are likely to indicate at least some level of real-time information delivery and the ability to
r visualize and “drill down” into data about their children’s progress and the progress of the interventions.
c This pilot study will provide two primary outcomes:
i
s (1) establishing medical feasibility, assessed in terms of caregiver ability to adhere to the exercise regime
e
 
P
r
o
g
and caregiver perception of the experience, in particular comparing these elements between the
population using the augmented mobile tool for logging and the traditional pen and paper method; and
(2) gathering further design guidance for technological interventions in home health monitoring and
support for caregivers.
While in the NICU, parents make use of each other in addition to the medical staff to support them,
answer questions, and generally provide a feeling of togetherness. Once home, they may feel isolated and
distraught, particularly when caring for the baby as a single parent. Furthermore, parents of preterm
infants encounter enormous amounts of information with regard to feeding, sleeping, and other caregiving
tasks. As already noted, families of children with chronic conditions often struggle to get the information
they need, but have greatly reduced stress and anxiety when they do feel engaged and informed [29, 119].
Thus, a major opportunity exists in the implementation of appropriate educational interventions,
focused on assistive exercise and other preterm infant care information that can follow these parents home
with their new child. The traditional delivery method for educational information from the NICU has been
on paper in large binders. Although these materials are generally helpful, they lack the fidelity provided
through video instruction and the real-time instruction capabilities that might be afforded by a network-
enabled approach. Furthermore, their bulk makes them unwieldy for everyday use. Thus, capitalizing on
the mobile phones with data access already in use in this population provides opportunities for delivering
instruction or answering questions in a timely, flexible, and available way.
During the third year, we will develop and incorporate new features uncovered through our formative
interviews and the pilot deployment to create a more complete solution to the needs of parents caring for a
preterm infant at home. Specifically, we will incorporate information delivery related to parental
concerns brought up in the interviews using the HPPI on the mobile phone platform. Furthermore, we
will create access interfaces to the data being logged that are appropriate for engaging caregivers. These
interfaces will include glanceable displays [22] on the mobile phones as well as the ability to “drill
down” into the data on a more traditional desktop platform.
After developing a more complete and robust prototype, in the fourth year, we will conduct a longer
(three month) study of its effectiveness as deployed alongside the assisted exercise intervention. In
this study, we will recruit 30 families to participate. If substantial and significant benefits are observed for
the participants utilizing the electronic logging over the pen and paper in the pilot study, we will utilize
our prototype tools for all enrolled participants. If, on the other hand, such benefits are minimal or non-
significant in the pilot study, we will utilize a control group as in the pilot study to compare the new
features developed in the third year to the current standard of care. The methods of this study will match
in many ways those of the pilot study, with adjustments made based on lessons from that work. Our
medical collaborators will identify and train parents of ELBW children to conduct assisted exercise
activities at home. We will supply additional training materials, recording and data access, and other
functionality via mobile systems.
The outcomes of this study will be assessed through data analysis in the fifth year and include:
(1) evaluation of the design guidelines, features, and implementation of our prototype systems, which will
in turn provide
(2) further design guidance and support for researchers interested in this and other related domain
problems; and
(3) understanding of how these tools may support sustained heath outcomes over multiple months; and
finally,
(4) a platform from which to examine research questions surrounding health benefits maintained over the
lifetime of an ELBW infant through further longitudinal inquiry and follow-up outcomes measurements.
5.3 Documenting and understanding progress in preschool-aged children with autism
Interventions to support individuals with cognitive disabilities often include visual artifacts that
demonstrate language. These artifacts sometimes use words, images, or tangible objects to represent
 Figure  2:    (left)  Prototype  Mocoto  (top  right)  A  “wallet”  carried  by  a  child  containing  frequently  used  
cards  (lower  right)    A  traditional  choice  board  containing  an  “I  want”  symbol  and  various  food  items  all  
on  laminated  cards  attached  with  velcro.    A  child  would  typically  choose  the  items  wanted  after  a  
caregiver  prepares  them  and  offers  them  to  the  child.  
activities that will take place (or have taken place) arranged in temporal order to augment understanding
of time, events, and places [61]. Visual artifacts also sometimes use images or tangible objects to
represent simple everyday needs and elements of basic communication. These visual tools have been
shown to reduce the symptoms associated with autism spectrum disorder (ASD) [56]. Augmentative
communication devices can help children with special needs to communicate with their caregivers
everyday as well as to build language skills over time [56]. In this work, we will examine how use of a
mobile interactive augmentative communication system enables caregivers and children with ASD to
communicate with one another more easily. At the same time, these tools will enable automatic data
collection for long-term trend analysis.
In the first year, we will continue iterative design and development of our prototype mobile
communications tools (Mocotos) for children with ASD [89]. These tools are more than just digital
versions of current augmentative communication systems. The first Mocoto prototype functions much
like a choice board [117] (see Figure 2 lower right) or communications “wallet” (see Figure 2 upper right)
and utilizes a mobile platform, the Nokia N800 (see Figure 2 left). Both children and adults can use the
touch screen on the device for interactions. Adult caregivers can also make use of desktop software to
“program” the devices. These tools enable adjustment and use of augmentative communications systems
more easily and flexibly using information produced by caregivers in the moment (setting up choices for
the children to select, instructions for activities, and so on) as well as rules that can be implemented by
caregivers preemptively (limitations on food choices based on allergies and so on). The current Mocotos
prototype has no data visualization features, however, which will be important to involving parents and
teachers in understanding and making use of the augmentative communication intervention. Thus,
building on preliminary results from interviews with teachers we are currently conducting, we will
incorporate data logging and visualization techniques, including multiple levels of data presentation, such
as high level glanceable displays and the ability to “drill down” into the data.
In the second year, we will complete a pilot deployment study of Mocotos in an early childhood
education center (preschool). In this study, we will work with two teachers at one school as well as
administrative staff and the school assistive technologies specialist. Teachers in early childhood special
education centers already make use of a wide variety of analog and digital assistive technologies and will
be able to comment on the features and uses of Mocotos in comparison to those tools. We will send a
recruitment invitation home to the parents and guardians of the children in each of the two preschool
classes selected with information about Mocotos and the study. We will then work with the teacher and
parents or guardians of each child enrolled to set up appropriate options within the tools (e.g., food
choices that are in keeping with the dietary needs of a particular child). These children will make use of
Mocotos for four weeks each. At the end of this time, we will interview the parents, teachers, and school
staff members who interacted with the children and the system to understand what features supported
their needs and how and what new features should be added to support other needs. We will also analyze
the usage logs to understand how frequently these tools were used and how. Furthermore, we will use the
logs as data sets against which to test new algorithms and explore alternate means of more easily
presenting communications options (for example, through the use of simple machine learning
algorithms). Finally, we will use these logs as data sets for designing and developing visualization
techniques for supporting caregivers analysis and hypothesis testing.
This pilot study will provide two primary outcomes:
(1) establishing educational feasibility, assessed in terms of teacher and parent ability to program the
assistive devices and integrate them into their everyday home and school activities, in particular
comparing these elements available in the augmented mobile tool for logging and supported
communication and the traditional tools available in classrooms; and
(2) further design guidance for technological interventions in augmentative communication and
monitoring and analysis of health and education data for young children with ASD.
Based on these outcomes, in the third year, we will continue iterative development on Mocotos,
focusing on the addition of more advanced features and making the tools robust enough to sustain a long-
term deployment study. Teachers and parents do minimal data analysis of language skill building at
present, often due to a lack of data to analyze. Thus, our initial designs will be based on the
recommendations of special education and assistive technologies specialists in addition to teachers and
parents. In the PI’s past work, this approach was helpful to developing initial prototypes for pilot
deployments, but advanced features, in particular visualizations based on how teachers and parents - as
opposed to researchers and specialists – interact with the data often require observations and interviews of
in situ use [47]. For example, as previously mentioned, we anticipate the potential need for more complex
visualizations and data analysis features, the design of which rests in part on understanding how the tools
might be used in a real setting. As another example, we may also incorporate video modeling into the
mobile tools, in which video clips of a task being performed successfully are displayed alongside some
instructions for the child and caregiver [27, 81] to support the transition to independent communication
and reduce the potential for long-term reliance on these systems.
After developing a more complete and robust prototype, in the fourth year, we will conduct a longer
(one five month school term) study of its effectiveness as an augmentative communications system and
a record-keeping, diagnostic, and analysis system. In this study, we will recruit from two to four
classrooms from each of two school centers, depending on the response rate we observe in the pilot study.
The goal will be to enroll 20 children and their families in the study. The method of this study will match
in many ways that of the pilot study, with adjustments made based on lessons from that work. Our
education collaborators will help us to identify and train teachers of children with ASD who are making
use of assistive and augmentative communication devices in their classrooms currently. We will supply
both the mobile tools and desktop based systems for supporting analysis of the logged data to teachers
and other school-based caregivers and parents. The children enrolled in this study will make use of these
tools over a period of five months, or one full school semester, which should be long enough to observe
sustained use after the initial novelty of the system wears off. Furthermore, this amount of time should
enable the participants to begin to see trends in the data logged over time. We will interview caregivers
monthly throughout the study and observe the children and their caregivers making use of these devices
both in their homes and in the schools. Finally, like in the initial pilot study, we will analyze software logs
to understand how and when the participants made use of various pieces of functionality.
The outcomes of this study will be assessed during data analysis in the fifth year and include:
(1) evaluation of the design guidelines, features, and implementation of our prototype systems, which will
in turn provide
(2) further design guidance and support for researchers interested in this and other related domain
problems; and
(3) understanding of how these tools may support sustained educational outcomes over multiple months;
and finally,
(4) a platform from which to examine research questions surrounding educational and health benefits
maintained over the lifetime of a child with ASD through further longitudinal inquiry and follow-up
outcomes measurements.
5.4 Human Subjects
In both the research and the education plan, research with human subjects will be used to evaluate the
progress of the work. IRB approval has been obtained for the formative studies in this research, which are
considered expedited by the University of California, Irvine (UCI) IRB. Approval of the campus IRB will
be obtained before beginning the other research activities with human subjects. The deployment studies
will involve minors and medically relevant information. In this case, the integrated nature of the IRB at
UCI involving both the social and behavioral board and the medical board will support our ability to
maintain appropriate research procedures and approvals across collaborative teams. Furthermore, based
on our collaborators’ history in conducting research with premature infants and children with autism, we
are confident by working with them, we will be able to recruit the numbers of patients and caregivers
required for these studies without substantial difficulty. In the case of research conducted in local
preschools, our current sites of interest do not have their own IRBs, but we will still maintain approval
from the administrative heads of special education in these school districts. Maintaining confidentiality in
accordance with HIPAA [54], FERPA [32], and IRB guidelines will be relevant in all cases.
5.5 Expected Outcomes and Dissemination
This work will provide multiple significant outcomes, both in terms of research results and the software
systems themselves. First, we will use the interview, observation, and survey data to understand caregiver
experiences with mobile tools for supporting record-keeping around early childhood interventions for
chronic conditions. These data will inform design requirements for future technologies to support preterm
and typical infant care at home and communication with children with special needs at homes and in
schools. Second, all of the mobile software presented to the caregivers will be made open source,
enabling other computing researchers to design and develop new related systems and healthcare and
education resources to adopt the tools for other purposes.
In addition to the positive outcomes related to the technologies themselves, the potential for positive
research outcomes in healthcare and education is enormous with this work. Thus, a primary outcome
measure of this work will revolve around the health and education benefits to the children and the records
and analysis benefits to professional caregivers and parents. We will measure these outcomes during the
duration of the grant period as well as in longitudinal follow-up studies for years beyond the scope of this
grant. Parents and other caregivers often experience enormous stress [38], and families are often burdened
by the extra care required for a child with chronic health conditions [109]. Thus, a secondary expected
outcome is the improvement of caregiver health through reduction of caregiver stress and burnout as will
be measured through the interviews and surveys of caregiver concern described in the previous sections.
We will disseminate results through three major venues. First, we will publish to the major human-
computer interaction, medical informatics, and collaborative technologies venues such as CHI, Ubicomp,
CSCW, and AMIA. Second, we will also publish results in major educational and assistive technologies
venues such as the International Meeting for Autism Research (IMFAR), Interaction Design for Children
(IDC), and the ACM Conference on Computers and Accessibility (ASSETS). Finally, we will publish any
medically relevant results to PubMed and the NIH clinical trials databases.
6 TIMELINE
Due to the potential for long-term outcomes, this research will extend beyond the scope of this proposal
in longitudinal studies of effectiveness in which children and caregivers may be monitored for years or
even decades. In this section, however, we outline the timeline relevant to the scope of this proposal.
Year
Objective Activity Description
1 2 3 4 5
In-depth interviews with parents, medical personnel,
Design and develop and preschool teachers to uncover the balance of
mobile & ubiquitous features required for mobile phone based interventions X
computing to support record-keeping surrounding infant care at
technologies for home without intruding on home life.
recording & analysis Continued iterative design of record-keeping and
X X
assistive devices
In-depth interviews with stakeholders to uncover
Evaluate the socio- potential concerns that may be raised by manual or
X
technical issues of automatic recording, solutions to those concerns, and
recording technologies considerations around their sharing and saving.
for chronic health In-depth interviews with users surrounding these same
concerns issues with respect to the specific technologies being X X X X
designed, developed, and evaluated in this work
Evaluation of health impacts of participants in pilot
deployments of tools for supporting both premature
X X
infant exercise in the home and language development
for children with special needs in pre-schools.
Evaluate health
outcomes of Evaluation of health impacts in longer-term
technologies deployment of technologies for both premature infant X
and preschool aged special needs populations
Planning for follow-up interviews and longitudinal
X
monitoring of patients from longer deployment study
Combined analysis of tool usage, interview data, and
Generalized platform X
health outcomes data from deployment studies
and design guidelines
for mobile and Development of generalized design guidance for
ubiquitous computing chronic healthcare technologies, including mapping of
X
for chronic care features and benefits observed to those likely in other
chronic care domains

7 SIGNIFICANCE OF THE RESULTS

The pervasive computing technologies for healthcare agenda has the potential to address many of the
needs of the growing population of children with chronic health care concerns by anticipating the growth
of mobile technology use in healthcare and in everyday life. Understanding the design requirements for
and creating initial solutions to two chronic childhood ailments will contribute greatly to the societal
value of such mobile devices.
The project will create techniques and technologies that are general enough to be applicable for healthcare
in general, and to provide a specific example of the application of mobile healthcare technologies to
chronic illness and children for two populations: ELBW infants and children with ASD. Demonstrating
positive health outcomes in addition to interesting and novel technological advances is likely to inspire
other researchers – both medical and computing – to work towards interdisciplinary research agendas that
involve the application and use of mobile and ubiquitous computing towards healthcare.
Mobile healthcare technologies have applications in many other areas of healthcare, but in particular,
given the longevity and need for seamless integration into everyday life, for chronic healthcare. These
technologies could be used in combating childhood obesity (e.g., in similar work to that of adults [22, 67,
82, 111, 115]), and in fact, we are beginning to work with medical collaborators on a project of that
nature as part of the nationwide Project Healthy effort [94]. Mobile technologies can and should be
integrated fully into other research agendas for health, as suggested in part by the Captology or Persuasive
Computing agenda [35]. These potential application areas are enormous, but in particular, those issues in
need of real-time, mobile decision-making support and educational interventions (e.g., sexual education,
tobacco use reduction, and nutrition choice for diabetes or obesity) are of particular relevance to this
effort and could benefit from our results.
These potential applications point to the relevance of mobile and ubiquitous healthcare technologies to
several domains that currently exist or are not far into the future. In the longer term, this research will also
help to create new forms of human-machine interactions, where small wearable and mobile systems play
a more significant role in computation. Although mobile phones are often touted as being more
pervasively with individuals than may always be reality [97], people are becoming increasingly reliant
and dependent upon these devices. Furthermore, as these tools become more integrated into everyday
interactions, so too are they likely to become more integrated into health activities. As computational
systems grow both smaller and more powerful and managing chronic illness continues to be a high
priority for society, it will become increasingly important and relevant for these mobile tools to be
integrated into standards of care and best practice treatments and interventions.
Finally, perhaps one of the greatest pieces of intellectual merit of this work may not be observable for
decades. Widespread use of integrated, mobile recording technologies for everyday and chronic
healthcare concerns will over time create a corpus of data that can be mined by behavioral, medical, and
public policy researchers to understand how these disorders manifest, what impacts interventions have on
large scales, what early indicators of future challenges may exist, and more. These datasets will provide
opportunities for researchers in data analysis, visualization, and intelligent systems in addition to the
potential for advancing human-centered computing, medical, and educational research.
8 PROPOSED EDUCATION PLAN
Our research will provide a novel educational experience to the undergraduate and graduate students
involved in the research both independently and as part of classes. In her first year as a professor, the PI
has already developed a reputation for contributing to the undergraduate research experience, receiving
the Chancellor’s Award for Excellence in Undergraduate Research in 2008. She supervised five
independent study research projects with undergraduates, some of which have already developed into
publications [51, 70]. We will apply for NSF REU supplements, recruit undergraduates to participate in
UCI’s Summer Undergraduate Research Program (SURP), UCI’s Undergraduate Research Opportunities
Program (UROP), and Calit2’s highly successful SURF-IT (Summer Undergraduate Research Fellowship
in Information Technology) program. The PI truly values her experiences in working with undergraduate
students in research and created a course last year focused on “Research Projects in Ubicomp” that
matched undergraduate students with graduate student mentors to allow hands-on application of in class
lessons to research projects. The majority of students enrolled in this class graduated this year, and many
are going on to graduate school. Of those remaining at UCI, two are continuing research with the PI.
The PI also integrated research into a core class this year: “Projects in Social Impacts of Computing.”
The PI integrated the students into a larger research project designed to assess the current state of medical
informatics at the UCI Medical Center and Long Beach Veterans Affairs. Their results will not only
impact administrative decisions at these medical centers but they will also advance research in
medical informatics, in which very few large scale assessments such as this have ever been conducted.
Since teaching this course, two students who had never before heard of medical informatics have decided
to apply to graduate programs in the area and nine (approximately 25%) are planning to participate in
research projects with the PI in the 2008-2009 school year.
In addition to these undergraduate classes, the PI also developed a graduate level course in surveillance
and record-keeping technologies tightly related to her research, “Surveillance, Sousveillance, and the
Use and Abuse of Recording Technologies.” One paper from this course has already been accepted to a
major human-computer interaction conference [64] and others are in development. During the duration of
this grant proposal, the PI will also create a course in “Pervasive Computing for Healthcare” for both
undergraduate and graduate students, incorporating results of this research effort.
Finally, the PI has a demonstrated commitment to educating and involving students and researchers in
efforts focused on children with special needs through venues that are inclusive of and integrative to
people from outside her home institution. For example, in 2007, she co-organized a Special Interest
Group on Technologies for Autism [42], a group that has maintained a strong online presence and from
which several cross-institutional research projects have emerged. During the time of this grant proposal,
she will plan a workshop focused on technologies for children with autism spectrum disorder in
cooperation with major non-profit autism research organizations, such as AutismSpeaks. This workshop
will include funding for student participants from a variety of institutions, in particular focusing on those
individuals from schools or disciplines that are traditionally underrepresented and underfunded.
9 CAREER GOALS AND PRIOR ACCOMPLISHMENTS
The PI has clear goals in her career in the coming years. She aims to have a significant impact on the
fields of HCI, Ubiquitous Computing, and Pervasive Computing for Healthcare through the proposed
research and educational agenda. These goals and this work are directly in line with the PI’s expected
duties as a tenure-track Assistant Professor in the Department of Informatics. Specifically, the work
described in the research section is in accordance with expected scholarly activities and contributes not
only to the Department of Informatics but will also help build the Center for Medical Informatics, and the
Institute for Clinical and Translational Research into world-class centers for interdisciplinary research.
Furthermore, the courses described in the education section satisfy the teaching workload and will
encourage further expansion of human-centered computing courses in the Department of Informatics.
Finally, the service activities required to engage students – particularly those of minority background – in
the research, to further promote the fields of study, and to broaden interdisciplinary civic engagement,
health, and technology research within and outside of UCI satisfy the PI’s service requirements.
The PI has published scholarly articles in top HCI and ubiquitous computing venues including CHI [48,
49, 53, 60, 72, 114], CSCW [64, 74, 120], Ubicomp [50, 73, 97], Pervasive [52], and Interaction Design
for Children [51, 89, 94] including three best paper nominations (top 5% of submissions) [60, 74, 120].
These articles have focused on topics including ubiquitous computing for treatment and diagnosis of
autism [48, 49, 50, 51, 53, 73, 74, 75] and cancer [52] as well as understanding the social, political, and
privacy-related implications of these technologies [48, 60]. Through the proposed work, she will be able
to use the techniques that have proven successful in her past work to expand her understanding from a
focus on older children and adults to a focus on very young children under five. This expansion of focus
is fundamental to achieving her long-term career goals of enabling both computing and medical
research communities to address the growing needs of patients with chronic conditions.
10 INTELLECTUAL MERIT
This proposal focuses on research relating to human-computer interaction, ubiquitous computing, and
medical informatics for the care of children with chronic conditions. The initial approach to this area will
involve the creation of interactive and automatic capture systems that allow for the review and
comprehension of long-term rich health data. This semi-automated record-keeping approach will be
situated in concrete implementations and tested in real world deployments with patients and their
families. The research will increase the understanding of the usability and usefulness of such records and
record-keeping technologies to caregivers, both professional and familial. Design, development, and
evaluation of these technologies will enable other researchers, commercial entities, and medical clinicians
to create and to use their own solutions to reduce the overhead of working with record-keeping devices.
Situating our solutions within familiar devices – mobile phones – and integrating the record-keeping
aspects of the care into other relevant caregiving activities will demonstrate and provide a model for
unobtrusive and low-cost solutions to other documentation needs for other care domains.
This work will not only advance the fields of mobile and ubiquitous computing but will also advance
clinical research using information technologies by encouraging integration of these technologies into
medical standards of care. This work will provide a roadmap for accomplishing close collaboration with
medical researchers and integration of technological interventions alongside medical, behavioral,
and educational interventions. Finally, this project is the first research effort to focus development and
application of these technologies on chronic care of children across multiple conditions thus advancing
the scientific and technical knowledge of these approaches in a potentially generalizable manner. The PI’s
background in relevant disciplines, her existing collaborative relationships at UCI and elsewhere, the
success of preliminary research in this area and the support of a major research university make it very
likely that this work will produce substantial research results.
11 BROADER IMPACTS
The research and educational agendas set forth in this proposal have the potential for both short and long
term broad impacts to society. In the short term, these research projects will benefit the patients and their
caregivers directly participating in the trials of these technologies. These trials will be conducted at the
UCI Medical Center (50% Hispanic births and 14% Asian births) and at local public preschools (41%
Asian, 10% Hispanic, 12% English as a second language). Minority populations, particularly those of low
socio-economic status, are often more severely impacted by chronic illness [19, 95]. Thus, in the long-
term, the impacts enjoyed by patients and caregivers will also more positively impact those populations.
The PI has a history of conducting research in public school systems and working with teachers in both
Georgia and California. As part of this project, we will apply for the Research Experience for Teachers
(RET) supplement to continue to involve special education and preschool teachers in the design, use, and
evaluation of technologies to support children with autism. In the short term, this involvement will
improve the research activities and care of the children in these schools. Many teachers already design
their own assistive technologies and educational software without referring to it in those terms. Thus, in
the long term, we anticipate these teachers may be inspired further to involve technology in their work or
even to return to graduate school to pursue advanced degrees in this area. We expect that involvement of
teachers in this research will also improve relationships between UCI and the surrounding community.
This research and educational agenda takes an important step in engaging the curriculum at UCI towards
what Buckley et al. term “Socially Relevant Computing” [17] and what the PI has been describing as
“Social and Technological Action Research,” mirroring trends toward engaged research in HCI [55]. This
research agenda will encourage recruitment of more women, currently a major challenge for computing in
general. The integration of medically and socially relevant projects into the PI’s undergraduate courses
“Projects in Social Impacts of Computing” and “Research Projects in Ubicomp” with subsequent
substantial interest in research in these areas by female students confirm what the literature indicates
about engaging women in “computing with a purpose” in their computing courses [34].
The PI has a history of working with women and minorities. Of the 18 research students (undergraduate
and graduate), she has supervised, 12 are women and 3 are African-American. In addition to continuing
this trend with student research assistants, we will use this research to attract diverse pre-college students
to the fields of information and computer sciences. The PI has already been involved with Project
Tomorrow, an effort to bring high school students to the UCI campus and introduce them to research in
information technology. The PI is also a member of the Institutional Committee on Civic Engagement for
creating an undergraduate minor in civic engagement that will include service-learning classes from the
School of Information and Computer Sciences. We will also introduce local teenage girls to computing
for social good through Girls Incorporated of Orange County, a non-profit center affiliated with the
nationwide Girls Incorporated program with which the PI was a volunteer while living in Atlanta.
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