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Understanding the experiences of self-injurious behavior in autism spectrum disorder: Implications for monitoring technology design

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dc.contributor.authorCantin-Garside, Kristine D.
dc.contributor.authorNussbaum, Maury A.
dc.contributor.authorWhite, Susan W.
dc.contributor.authorKim, Sunwook
dc.contributor.authorKim, Chung Do
dc.contributor.authorFortes, Diogo M.G.
dc.contributor.authorValdez, Rupa S.
dc.date.accessioned2025-09-05T21:26:37Z
dc.date.available2025-09-05T21:26:37Z
dc.date.issued2021
dc.descriptionAuthor Accepted Manuscript
dc.description.abstractMonitoring technology may assist in managing self-injurious behavior (SIB), a pervasive concern in autism spectrum disorder (ASD). Affiliated stakeholder perspectives should be considered to design effective and accepted SIB monitoring methods. We examined caregiver experiences to generate design guidance for SIB monitoring technology. Twenty-three educators and 16 parents of individuals with ASD and SIB completed interviews or focus groups to discuss needs related to monitoring SIB and associated technology use. Qualitative content analysis of participant responses revealed 7 main themes associated with SIB and technology: triggers, emotional responses, SIB characteristics, management approaches, caregiver impact, child/student impact, and sensory/technology preferences. The derived themes indicated areas of emphasis for design at the intersection of monitoring and SIB. Systems design at this intersection should consider the range of manifestations of and management approaches for SIB. It should also attend to interactions among children with SIB, their caregivers, and the technology. Design should prioritize the transferability of physical technology and behavioral data as well as the safety, durability, and sensory implications of technology. The collected stakeholder perspectives provide preliminary groundwork for an SIB monitoring system responsive to needs as articulated by caregivers. Technology design based on this groundwork should follow an iterative process that meaningfully engages caregivers and individuals with SIB in naturalistic settings.
dc.description.sponsorshipThis research was supported by a National Science Foundation Graduate Research Fellowship (to KDC-G) and a 4-VA Collaborative Research Grant (to RSV and MAN).
dc.identifier.citationCantin, K., Nussbaum, M., White, S., Kim, S., Kim, C.D., Fortes, D., Valdez, R.S. (2021). Understanding the experiences of self-injurious behavior in autism spectrum disorder: Implications for monitoring technology design. Journal of the American Medical Informatics Association, 28(2), 303-310. doi: 10.1093/jamia/ocaa169
dc.identifier.doi10.1093/jamia/ocaa169
dc.identifier.issn1527-974X
dc.identifier.urihttps://ir.ua.edu/handle/123456789/17153
dc.language.isoen_US
dc.publisherOxford University Press
dc.subjectautism spectrum disorders
dc.subjectnonsuicidal self-injury
dc.subjectcaregivers
dc.subjectbehavioral monitoring
dc.subjectqualitative analyses
dc.subjectconsumer health informatics
dc.titleUnderstanding the experiences of self-injurious behavior in autism spectrum disorder: Implications for monitoring technology design
dc.typeArticle
publicationissue.issueNumber2
publicationvolume.volumeNumber28

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