Understanding the experiences of self-injurious behavior in autism spectrum disorder: Implications for monitoring technology design. (24th September 2020)

• Record Type: Journal Article
• Authors: Cantin-Garside, Kristine D; Nussbaum, Maury A; White, Susan W; Kim, Sunwook; Kim, Chung Do; Fortes, Diogo M G; Valdez, Rupa S
• Is Part Of: Journal of the American Medical Informatics Association. Volume 28:Number 2(2021)
• Page Start: 303
• Page End: 310
• Publication Date: 2020-09-24
• Subjects: autism spectrum disorders -- nonsuicidal self-injury -- caregivers -- behavioral monitoring -- qualitative analyses -- consumer health informatics; Medical informatics -- Periodicals; Information Services -- Periodicals; Medical Informatics -- Periodicals; Médecine -- Informatique -- Périodiques; Informatica; Geneeskunde; Informatique médicale; Computer network resources; Electronic journals; 610.285
• DOI: 10.1093/jamia/ocaa169
• Languages: English
• ISSNs: 1067-5027

Abstract

Abstract: Objective: Monitoring 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. Materials and Methods: 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. Results: 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. Discussion: 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. Conclusions: 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.