Hi everyone, my name is Eunkyung Jo.
I'm a PhD student at UC Irvine.
I’m excited to present our work on GeniAuti
Toward data-driven interventions to challenging behaviors of autistic children through caregiver’s tracking.
I would like to thank our co-authors in different institutions.
Research suggests that 14-20% of young children engage in challenging behaviors that require intervention
such as self-injury and aggression.
Such behaviors can hinder the children's learning and socialization.
Caregivers of children who exhibit challenging behaviors also experience
increased stress, increased burden of care, and risk of injury.
Therefore, mitigating challenging behaviors can significantly improve both children’s and their family’s quality of life.
Caregivers’ behavioral tracking is fundamental for developing individualized intervention plans.
However, caregivers often find behavioral tracking burdensome given their other responsibilities.
In addition, caregiver--clinician collaboration might break down
when the collected data is less clinically relevant or logged in a non-standard way.
To reduce caregiver burdens in behavioral tracking in daily settings and improve collaboration with clinical experts,
we developed GeniAuti, a mobile application for assisting caregivers in systematically tracking
their children’s challenging behaviors and their response strategies.
I’ll share a video to walk you through the system.
First, GeniAuti enables scaffolded data collection.
With GeniAuti, users can systematically keep track of a specific sequence of behaviors
based on the ABC model.
The antecedent is what happened before a challenging behavior
The behavior is the specific challenging behavior that the child showed.
The consequence is the response that followed the behavior, which could contribute to maintaining the behavior over time.
This information helps clinical experts understand what triggers and maintains the challenging behavior.
In addition, GeniAuti provides data fields that remind caregivers to record important contextual information
to understand challenging behaviors,
such as the time, location, type, intensity, and function of the behavior.
Second, GeniAuti helps data capture on the fly.
Severe challenging behaviors are difficult for caregivers to record on the spot.
To enable in situ data collection, we implemented some features in GeniAuti,
such as voice recognition for entering the ABC information,
a timer widget for automatic time stamping,
and frequent behaviors to pre-register the dataset for common patterns of challenging behaviors.
We conducted a field deployment of GeniAuti with 19 parent-child pairs who were exhibiting challenging behaviors
and 3 expert collaborators at two hospitals.
Participants used GeniAuti in their daily lives for 2–7 weeks.
We observed debriefing sessions of the tracking data offered by our expert collaborators.
Lastly, we conducted an hour-long exit interview with each participant
to gain detailed information about the tracking experiences.
Through the study, we found the benefits and challenges of using GeniAuti for caregivers’ tracking.
In this talk, I’ll focus on the findings related to the two main challenges.
The repetitive tracking of challenging behaviors provoked emotional exhaustion for caregivers.
Despite the benefits of in situ data collection, caregivers didn’t feel ready for recording right after the episodes
because of their emotional exhaustion.
P9 ended up stopping tracking because she was too frustrated that her adolescent child kept showing inappropriate urination.
Engaging caregivers in clinically structured tracking practices with GeniAuti
also led to tensions in interpreting children's behaviors.
We found that clinical data collection structures could conflict with the caregivers' viewpoints.
Some participants were skeptical about documenting antecedents.
P8 stated, ``What happened before she hit me? She was just in the car with me, looking outside peacefully.
Then she hit me out of nowhere.''
However, clinical experts kept encouraging P8 to look for the potential triggers from the antecedents
of her child’s challenging behaviors
The conflicting views often led to disagreement
between the caregivers' and experts' interpretations of the children's challenging behaviors.
Clinical experts raised a concern that caregivers often interpreted their child's challenging behaviors
in a subjective manner without evidence.
However, some caregivers had strong enough opinions about the causes of the behaviors
that they could not take experts' advice.
For example, P9 strongly believed that her child's challenging behaviors became severe
due to physical factors such as gaining weight.
On the other hand, E2 thought his challenging behaviors resulted from seeking attention from his mother.
Based on the findings, we highlight the need for promoting negotiations between caregivers and clinicians.
Bringing clinical needs into caregivers' tracking tools introduced tension around how to interpret behavioral data.
We suggest that future technology support for caregiver-clinician collaboration should provide explicit mechanisms
for learning about and negotiating different perspectives.
Second, tracking as a listening tool for caregivers.
As a consequence of bringing solely clinical needs into tracking tools,
caregivers sometimes felt that their tracking experiences with GeniAuti were cold or emotionless.
We see an opportunity for tracking technology
to better serve as a listening tool for caregivers who engage in emotion-laden tracking.
Caregiver-based tracking systems should leverage the benefits of self-tracking
in supporting mindful journaling practices beyond clinical metrics for children's health.
Tracking systems can also support caregivers in sharing the data
to allow family, friends, and clinicians to better understand their daily challenges.
Thank you so much for listening.
Please feel free to contact me if you have any questions about this work.