Towards in-home Collection of Behavior Specimens: Within the Cultural Context of autism in Pakistan

Nazneen,; Boujarwah, Fatima A.; Rozga, Agata; Abowd, Gregory D.; Arriaga, Rosa I.; Oberleitner, Ron; Pharkute, Suhas

doi:10.4108/icst.pervasivehealth.2012.248701

Cited by 3 publications

(2 citation statements)

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“…Other work has been aimed at reducing burden on users as much as possible, by seeking to automate data collection using capture and access, sensors, and other highly augmented collection methods. These types of systems collect large amounts of data automatically while a child is engaging in an activity [8,21], or with minimal involvement from staff or caregivers [7,9,10,16,17]. Our work complements these systems by providing an understanding of the expert's role in collecting data in situ.…”

Section: Why Paper Persists In the Workplacementioning

confidence: 99%

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Why do they still use paper?

Marcu

Tassini

Carlson

et al. 2013

Proceedings of the SIGCHI Conference on Human Factors in Computing Systems

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Autism education programs for children collect and use large amounts of behavioral data on each student. Staff use paper almost exclusively to collect these data, despite significant problems they face in tracking student data in situ, filling out data sheets and graphs on a daily basis, and using the sheets in collaborative decision making. We conducted fieldwork to understand data collection and use in the domain of autism education to explain why current technology had not met staff needs. We found that data needs are complex and unstandardized, immediate demands of the job interfere with staff ability to collect in situ data, and existing technology for data collection is inadequate. We also identified opportunities for technology to improve sharing and use of data. We found that data sheets are idiosyncratic and not useful without human mediation; improved communication with parents could benefit children's development; and staff are willing, and even eager, to incorporate technology. These factors explain the continued dependence on paper for data collection in this environment, and reveal opportunities for technology to support data collection and improve use of collected data.

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Section: Why Paper Persists In the Workplacementioning

confidence: 99%

“…A teacher, Clara, has prepared a lesson plan for her [13][14][15][16] year old students on different types of cows. Sitting at desks in a circle with her four students, she reads aloud a sentence at a time while showing them pictures of each cow.…”

Section: Introductionmentioning

confidence: 99%

Why do they still use paper?

Marcu

Tassini

Carlson

et al. 2013

Proceedings of the SIGCHI Conference on Human Factors in Computing Systems

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GeniAuti: Toward Data-Driven Interventions to Challenging Behaviors of Autistic Children through Caregivers' Tracking

Park

Bang

et al. 2022

Proc. ACM Hum.-Comput. Interact.

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Challenging behaviors significantly impact learning and socialization of autistic children and can stress and burden their caregivers. Documentation of challenging behaviors is fundamental for identifying what environmental factors influence them, such as how others respond to a child's such behaviors. Caregiver-tracked data on their child's challenging behaviors can help clinical experts make informed recommendations about how to manage such behaviors. To support caregivers in recording their children's challenging behaviors, we developed GeniAuti, a mobile-based data-collection tool built upon a clinical data collection form to document challenging behaviors and other clinically relevant contextual information such as place, duration, intensity, and what triggers such behaviors. Through an open-ended deployment with 19 parent-child pairs and three expert collaborators, caregivers found GeniAuti valuable for (1) becoming more attentive and reflective to behavioral contexts, including their own response strategies, (2) discovering positive aspects of their children's behaviors, and (3) promoting collaboration with clinical experts around the caregiver-tracked data to develop tailored intervention strategies for their children. However, participant experiences surface challenges of logging behaviors in social circumstances, conflicting views between caregivers and clinical experts around the structured recording process, and emotional struggles resulting from recording and reflecting on intensely negative experiences. Considering the complex nature of caregiver-based health tracking and caregiver--clinician collaboration, we suggest design opportunities for facilitating negotiations between caregivers and clinicians and accounting for caregivers' emotional needs.

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