Literature DB >> 32974678

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

Kristine D Cantin-Garside1, Maury A Nussbaum1, Susan W White2, Sunwook Kim1, Chung Do Kim3, Diogo M G Fortes3, Rupa S Valdez3.   

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.
© The Author(s) 2020. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For permissions, please email: journals.permissions@oup.com.

Entities:  

Keywords:  autism spectrum disorders; behavioral monitoring; caregivers; consumer health informatics; nonsuicidal self-injury; qualitative analyses

Year:  2021        PMID: 32974678      PMCID: PMC7883971          DOI: 10.1093/jamia/ocaa169

Source DB:  PubMed          Journal:  J Am Med Inform Assoc        ISSN: 1067-5027            Impact factor:   4.497


  40 in total

1.  Risk factors associated with self-injurious behaviors in children and adolescents with autism spectrum disorders.

Authors:  Emma G Duerden; Hannah K Oatley; Kathleen M Mak-Fan; Patricia A McGrath; Margot J Taylor; Peter Szatmari; S Wendy Roberts
Journal:  J Autism Dev Disord       Date:  2012-11

2.  Three approaches to qualitative content analysis.

Authors:  Hsiu-Fang Hsieh; Sarah E Shannon
Journal:  Qual Health Res       Date:  2005-11

3.  Transforming consumer health informatics through a patient work framework: connecting patients to context.

Authors:  Rupa S Valdez; Richard J Holden; Laurie L Novak; Tiffany C Veinot
Journal:  J Am Med Inform Assoc       Date:  2014-08-14       Impact factor: 4.497

4.  Symptom severity as a risk factor for self-injurious behaviours in adolescents with autism spectrum disorders.

Authors:  C Rattaz; C Michelon; A Baghdadli
Journal:  J Intellect Disabil Res       Date:  2015-01-12

5.  Parent and child perspectives on the nature of anxiety in children and young people with autism spectrum disorders: a focus group study.

Authors:  Ann Ozsivadjian; Fiona Knott; Iliana Magiati
Journal:  Autism       Date:  2012-02-01

6.  A New Paradigm of Technology-Enabled ‘Vital Signs’ for Early Detection of Health Change for Older Adults.

Authors:  Marilyn J Rantz; Marjorie Skubic; Mihail Popescu; Colleen Galambos; Richelle J Koopman; Gregory L Alexander; Lorraine J Phillips; Katy Musterman; Jessica Back; Steven J Miller
Journal:  Gerontology       Date:  2015       Impact factor: 5.140

7.  Brief Report: Using iPads for Self-Monitoring of Students with Autism.

Authors:  Joy F Xin; Mary E Sheppard; Michelle Brown
Journal:  J Autism Dev Disord       Date:  2017-05

Review 8.  Epidemiological surveys of autism and other pervasive developmental disorders: an update.

Authors:  Eric Fombonne
Journal:  J Autism Dev Disord       Date:  2003-08

9.  Participatory design of ehealth solutions for women from vulnerable populations with perinatal depression.

Authors:  Mara Gordon; Rebecca Henderson; John H Holmes; Maria K Wolters; Ian M Bennett
Journal:  J Am Med Inform Assoc       Date:  2015-09-05       Impact factor: 4.497

Review 10.  Data mining for wearable sensors in health monitoring systems: a review of recent trends and challenges.

Authors:  Hadi Banaee; Mobyen Uddin Ahmed; Amy Loutfi
Journal:  Sensors (Basel)       Date:  2013-12-17       Impact factor: 3.576

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  4 in total

1.  Mapping the time course of overt emotion dysregulation, self-injurious behavior, and aggression in psychiatrically hospitalized autistic youth: A naturalistic study.

Authors:  Jessie B Northrup; Matthew S Goodwin; Christine B Peura; Qi Chen; Briana J Taylor; Matthew S Siegel; Carla A Mazefsky
Journal:  Autism Res       Date:  2022-06-25       Impact factor: 4.633

2.  Engaging the disability community in informatics research: rationales and practical steps.

Authors:  Rupa S Valdez; Sophie E Lyon; Claire Wellbeloved-Stone; Mary Collins; Courtney C Rogers; Kristine D Cantin-Garside; Diogo Gonclaves Fortes; Chung Kim; Shaalini S Desai; Jessica Keim-Malpass; Raja Kushalnagar
Journal:  J Am Med Inform Assoc       Date:  2022-10-07       Impact factor: 7.942

3.  Building on Diana Forsythe's legacy: the value of human experience and context in biomedical and health informatics.

Authors:  Kim M Unertl; Joanna Abraham; Suzanne Bakken
Journal:  J Am Med Inform Assoc       Date:  2021-02-15       Impact factor: 4.497

4.  Multi-level modeling with nonlinear movement metrics to classify self-injurious behaviors in autism spectrum disorder.

Authors:  Kristine D Cantin-Garside; Divya Srinivasan; Shyam Ranganathan; Susan W White; Maury A Nussbaum
Journal:  Sci Rep       Date:  2020-10-07       Impact factor: 4.379

  4 in total

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