Location via proxy:   [ UP ]  
[Report a bug]   [Manage cookies]                
skip to main content
10.1145/3461778.3462122acmconferencesArticle/Chapter ViewAbstractPublication PagesdisConference Proceedingsconference-collections
research-article

The Impact of Spinal Cord Injury on Participation in Human-Centered Research

Published: 28 June 2021 Publication History

Abstract

Individuals with spinal cord injuries (SCI) can have multiple cognitive and physical disabilities because of their injury. Appropriately-designed technology can be empowering and transformative for this population. Unfortunately, just like most technologies, user-centered research methods do not directly account for differing motor and communication abilities. This paper synthesizes SCI literature and leverages our own experiences in three research projects spanning five years with SCI users to highlight significant challenges that HCI researchers might face while employing user-centered methods with this population; communication disabilities, motor disabilities, and difficult contextual or environmental factors can make it difficult or impossible to use standard HCI methods when working with SCI users. We conclude with a set of guidelines and challenges for the HCI community to consider, which can be used both when evaluating papers that work with this population, and to fuel development of new methods or approaches that better-serve them.

Supplementary Material

Supplemental file (DIS21-127_Supplemental.pdf)

References

[1]
Ahmad Alsaleem, Ross Imburgia, Mateo Godinez, Andrew Merryweather, Roger Altizer, Tamara Denning, Jeffery Rosenbluth, Stephen Trapp, and Jason Wiese. 2019. Leveraging Shared Control to Empower People with Tetraplegia to Participate in Extreme Sports. In The 21st International ACM SIGACCESS Conference on Computers and Accessibility (Pittsburgh, PA, USA) (ASSETS ’19). Association for Computing Machinery, New York, NY, USA, 470–481. https://doi.org/10.1145/3308561.3353775
[2]
Ahmad Alsaleem, Ross Imburgia, Andrew Merryweather, Roger Altizer, Jeffrey Rosenbluth, Stephen Trapp, and Jason Wiese. 2020. Experience is Not Required: Designing a Sailing Experience for Individuals with Tetraplegia. In Proceedings of the 2020 ACM Designing Interactive Systems Conference (Eindhoven, Netherlands) (DIS ’20). Association for Computing Machinery, New York, NY, USA, 35–46. https://doi.org/10.1145/3357236.3395529
[3]
Margherita Antona, Stavroula Ntoa, Ilia Adami, and Constantine Stephanidis. 2009. User Requirements Elicitation for Universal Access.
[4]
Tapomayukh Bhattacharjee, Ethan K. Gordon, Rosario Scalise, Maria E. Cabrera, Anat Caspi, Maya Cakmak, and Siddhartha S. Srinivasa. 2020. Is More Autonomy Always Better? Exploring Preferences of Users with Mobility Impairments in Robot-Assisted Feeding(HRI ’20). Association for Computing Machinery, New York, NY, USA, 181–190. https://doi.org/10.1145/3319502.3374818
[5]
Ayşe G. Büyüktür, Mark S. Ackerman, Mark W. Newman, and Pei-Yao Hung. 2017. Design Considerations for Semi-Automated Tracking: Self-Care Plans in Spinal Cord Injury. In Proceedings of the 11th EAI International Conference on Pervasive Computing Technologies for Healthcare (Barcelona, Spain) (PervasiveHealth ’17). Association for Computing Machinery, New York, NY, USA, 183–192. https://doi.org/10.1145/3154862.3154870
[6]
Ayse G. Buyuktur, Pei-Yao Hung, Mark W. Newman, and Mark S. Ackerman. 2018. Supporting Collaboratively Constructed Independence: A Study of Spinal Cord Injury. Proc. ACM Hum.-Comput. Interact. 2, CSCW, Article 26 (Nov. 2018), 25 pages. https://doi.org/10.1145/3274295
[7]
Patrick Carrington, Amy Hurst, and Shaun K. Kane. 2014. Wearables and Chairables: Inclusive Design of Mobile Input and Output Techniques for Power Wheelchair Users. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (Toronto, Ontario, Canada) (CHI ’14). Association for Computing Machinery, New York, NY, USA, 3103–3112. https://doi.org/10.1145/2556288.2557237
[8]
C. Melody Carswell, Cindy H. Lio, Russell Grant, Martina I. Klein, Duncan Clarke, W. Brent Seales, and Stephen Strup. 2010. Hands-free administration of subjective workload scales: Acceptability in a surgical training environment. Applied Ergonomics 42, 1 (2010), 138–145. https://doi.org/10.1016/j.apergo.2010.06.003
[9]
Shih-Chung Chen, Ching-Yi Chien, Wei-Min Chang, and Shu-Wen Lin. 2008. A New Assistive Communication System for the Serious Disabled. In Proceedings of the 2nd International Convention on Rehabilitation Engineering & Assistive Technology (Bangkok, Thailand) (iCREATe ’08). Singapore Therapeutic, Assistive & Rehabilitative Technologies (START) Centre, Midview City, SGP, 59–64.
[10]
Mayo Clinic. 2019. Amyotrophic lateral sclerosis (ALS). https://www.mayoclinic.org/diseases-conditions/amyotrophic-lateral-sclerosis/symptoms-causes/syc-20354022, Retrieved: 1 February, 2021.
[11]
Mayo Clinic. 2020. Multiple sclerosis. https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269, Retrieved: 1 February, 2021.
[12]
LTC Tanya Estes, Deborah Backus, and Thad Starner. 2015. A wearable vibration glove for improving hand sensation in persons with Spinal Cord Injury using Passive Haptic Rehabilitation. In 2015 9th International Conference on Pervasive Computing Technologies for Healthcare (PervasiveHealth). 37–44. https://doi.org/10.4108/icst.pervasivehealth.2015.259137
[13]
Center for Disease Control and Prevention. 2020. The ICF: An Overview. https://www.cdc.gov/nchs/data/icd/icfoverview_finalforwho10sept.pdf, Retrieved: 31 August, 2020.
[14]
Mayo Foundation for Medical Education and Research (MFMER). 2020. Spinal Cord Injury: Symptoms. https://www.mayoclinic.org/diseases-conditions/spinal-cord-injury/symptoms-causes/syc-20377890, Retrieved: 6 August, 2020.
[15]
Natalie Friedman, Andrea Cuadra, Ruchi Patel, Shiri Azenkot, Joel Stein, and Wendy Ju. 2019. Voice Assistant Strategies and Opportunities for People with Tetraplegia. In The 21st International ACM SIGACCESS Conference on Computers and Accessibility (Pittsburgh, PA, USA) (ASSETS ’19). Association for Computing Machinery, New York, NY, USA, 575–577. https://doi.org/10.1145/3308561.3354605
[16]
Krzysztof Z. Gajos, Jacob O. Wobbrock, and Daniel S. Weld. 2007. Automatically Generating User Interfaces Adapted to Users’ Motor and Vision Capabilities. In Proceedings of the 20th Annual ACM Symposium on User Interface Software and Technology (Newport, Rhode Island, USA) (UIST ’07). Association for Computing Machinery, New York, NY, USA, 231–240. https://doi.org/10.1145/1294211.1294253
[17]
Eric Garshick. 2020. Respiratory physiologic changes following spinal cord injury. https://www.uptodate.com/contents/respiratory-physiologic-changes-following-spinal-cord-injury, Retrieved: 25 August, 2020.
[18]
Genetic and Rare Diseases Information Center. 2020. Locked-in syndrome. https://rarediseases.info.nih.gov/diseases/6919/locked-in-syndrome, Retrieved: 31 August, 2020.
[19]
Marine Guffroy, Vigouroux Nadine, Christophe Kolski, Frédéric Vella, and Philippe Teutsch. 2017. From human-centered design to disabled user & ecosystem centered design in case of assistive interactive systems. International Journal of Sociotechnology and Knowledge Development 9, 4(2017). https://doi.org/10.4018/IJSKD.2017100103
[20]
Kotaro Hara. 2014. Scalable Methods to Collect and Visualize Sidewalk Accessibility Data for People with Mobility Impairments. In Proceedings of the Adjunct Publication of the 27th Annual ACM Symposium on User Interface Software and Technology (Honolulu, Hawaii, USA) (UIST’14 Adjunct). Association for Computing Machinery, New York, NY, USA, 1–4. https://doi.org/10.1145/2658779.2661163
[21]
Kotaro Hara, Christine Chan, and Jon E. Froehlich. 2016. The Design of Assistive Location-Based Technologies for People with Ambulatory Disabilities: A Formative Study. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (San Jose, California, USA) (CHI ’16). Association for Computing Machinery, New York, NY, USA, 1757–1768. https://doi.org/10.1145/2858036.2858315
[22]
Susumu Harada, Jacob O. Wobbrock, and James A. Landay. 2007. Voicedraw: A Hands-Free Voice-Driven Drawing Application for People with Motor Impairments. In Proceedings of the 9th International ACM SIGACCESS Conference on Computers and Accessibility (Tempe, Arizona, USA) (Assets ’07). Association for Computing Machinery, New York, NY, USA, 27–34. https://doi.org/10.1145/1296843.1296850
[23]
Megan Hofmann, Devva Kasnitz, Jennifer Mankoff, and Cynthia L Bennett. 2020. Living Disability Theory: Reflections on Access, Research, and Design(ASSETS ’20). Association for Computing Machinery, New York, NY, USA, Article 4, 13 pages. https://doi.org/10.1145/3373625.3416996
[24]
Kerstin Johansson, Åke Seiger, Malin Forsén, Jeanette Holmgren Nilsson, Lena Hartelius, and Ellika Schalling. 2018. Assessment of voice, speech and communication changes associated with cervical spinal cord injury. International Journal of Language & Communication Disorders 53, 4(2018), 761–775. https://doi.org/10.1111/1460-6984.12380 arXiv:https://onlinelibrary.wiley.com/doi/pdf/10.1111/1460-6984.12380
[25]
Shaun K. Kane, Amy Hurst, Erin Buehler, Patrick A. Carrington, and Michele A. Williams. 2014. Collaboratively Designing Assistive Technology. Interactions 21, 2 (March 2014), 78–81. https://doi.org/10.1145/2566462
[26]
J Lazar, HJ Feng, and H Hochheiser. 2017. Working with research participants with disabilities: Research Methods in Human Computer Interaction.
[27]
Henry W.J Lin, Leila Aflatoony, and Ron Wakkary. 2014. Design for One: A Game Controller for a Quadriplegic Gamer. In CHI ’14 Extended Abstracts on Human Factors in Computing Systems. Association for Computing Machinery, New York, NY, USA, 1243–1248. https://doi.org/10.1145/2559206.2581334
[28]
Peng Liu, Xianghua Ding, and Ning Gu. 2016. “Helping Others Makes Me Happy”: Social Interaction and Integration of People with Disabilities. In Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing (San Francisco, California, USA) (CSCW ’16). Association for Computing Machinery, New York, NY, USA, 1596–1608. https://doi.org/10.1145/2818048.2819998
[29]
Meethu Malu, Pramod Chundury, and Leah Findlater. 2018. Exploring Accessible Smartwatch Interactions for People with Upper Body Motor Impairments. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems (Montreal QC, Canada) (CHI ’18). Association for Computing Machinery, New York, NY, USA, 1–12. https://doi.org/10.1145/3173574.3174062
[30]
Healthline Media. 2016. Friedreich’s Ataxia. https://www.healthline.com/health/friedreichs-ataxia, Retrieved: 1 February, 2021.
[31]
Healthline Media. 2019. Muscular Dystrophy: Types, Symptoms, and Treatments. https://www.healthline.com/health/muscular-dystrophy#treatment, Retrieved: 1 February, 2021.
[32]
Dafne Zuleima Morgado Ramirez and Catherine Holloway. 2017. ”But, I Don’t Want/Need a Power Wheelchair”: Toward Accessible Power Assistance for Manual Wheelchairs. In Proceedings of the 19th International ACM SIGACCESS Conference on Computers and Accessibility (Baltimore, Maryland, USA) (ASSETS ’17). Association for Computing Machinery, New York, NY, USA, 120–129. https://doi.org/10.1145/3132525.3132529
[33]
Maia Naftali and Leah Findlater. 2014. Accessibility in Context: Understanding the Truly Mobile Experience of Smartphone Users with Motor Impairments. In Proceedings of the 16th International ACM SIGACCESS Conference on Computers & Accessibility (Rochester, New York, USA) (ASSETS ’14). Association for Computing Machinery, New York, NY, USA, 209–216. https://doi.org/10.1145/2661334.2661372
[34]
National Institute on Aging. 2017. Parkinson’s Disease. https://www.nia.nih.gov/health/parkinsons-disease, Retrieved: 1 February, 2021.
[35]
World Health Organization. 2020. Spinal Cord Injury. https://www.who.int/news-room/fact-sheets/detail/spinal-cord-injury, Retrieved: 16 September, 2020.
[36]
Charlotte Robinson, Emeline Brulé, James Jackson, Alice Torjussen, Joshua Kybett, and Tom Appshaw. 2020. Tricks and Treats: Designing Technology to Support Mobility Assistance Dogs. In Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems (Honolulu, HI, USA) (CHI ’20). Association for Computing Machinery, New York, NY, USA, 1–14. https://doi.org/10.1145/3313831.3376188
[37]
Andrew Sears and Vicki Hanson. 2011. Representing Users in Accessibility Research. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (Vancouver, BC, Canada) (CHI ’11). Association for Computing Machinery, New York, NY, USA, 2235–2238. https://doi.org/10.1145/1978942.1979268
[38]
Ameneh Shamekhi, Ha Trinh, Timothy W. Bickmore, Tamara R. DeAngelis, Theresa Ellis, Bethlyn V. Houlihan, and Nancy K. Latham. 2016. A Virtual Self-Care Coach for Individuals with Spinal Cord Injury. In Proceedings of the 18th International ACM SIGACCESS Conference on Computers and Accessibility(Reno, Nevada, USA) (ASSETS ’16). Association for Computing Machinery, New York, NY, USA, 327–328. https://doi.org/10.1145/2982142.2982199
[39]
Adam J. Sporka, Torsten Felzer, Sri H. Kurniawan, Ondřej Poláček, Paul Haiduk, and I. Scott MacKenzie. 2011. CHANTI: Predictive Text Entry Using Non-Verbal Vocal Input. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (Vancouver, BC, Canada) (CHI ’11). Association for Computing Machinery, New York, NY, USA, 2463–2472. https://doi.org/10.1145/1978942.1979302
[40]
Elin Tollefsen and Ove Fondenes. 2012. Respiratory complications associated with spinal cord injury.Tidsskrift for den Norske laegeforening: tidsskrift for praktisk medicin, ny raekke 132, 9 (2012). https://doi.org/10.4045/tidsskr.10.0922
[41]
Ovidiu-Ciprian Ungurean, Radu-Daniel Vatavu, Luis A. Leiva, and Réjean Plamondon. 2018. Gesture Input for Users with Motor Impairments on Touchscreens: Empirical Results Based on the Kinematic Theory. In Extended Abstracts of the 2018 CHI Conference on Human Factors in Computing Systems (Montreal QC, Canada) (CHI EA ’18). Association for Computing Machinery, New York, NY, USA, 1–6. https://doi.org/10.1145/3170427.3188619
[42]
Marijke Vandermaesen, Tom De Weyer, Karin Coninx, Kris Luyten, and Richard Geers. 2013. Liftacube: A Prototype for Pervasive Rehabilitation in a Residential Setting. In Proceedings of the 6th International Conference on PErvasive Technologies Related to Assistive Environments (Rhodes, Greece) (PETRA ’13). Association for Computing Machinery, New York, NY, USA, Article 19, 8 pages. https://doi.org/10.1145/2504335.2504354
[43]
Zawn Villines. 2019. Important Milestones in the Spinal Cord Injury Recovery Process. https://www.spinalcord.com/blog/important-milestones-in-the-spinal-cord-injury-recovery-process, Retrieved: 1 September, 2020.
[44]
Elizabeth C. Ward, Leigh Jarman, Petrea L. Cornwell, and Delena I. Amsters. 2016. Impact of voice and communication deficits for individuals with cervical spinal cord injury living in the community. International Journal of Language & Communication Disorders 51, 5(2016), 568–580. https://doi.org/10.1111/1460-6984.12232 arXiv:https://onlinelibrary.wiley.com/doi/pdf/10.1111/1460-6984.12232

Cited By

View all
  • (2024)GoalTrack: Supporting Personalized Goal-Setting in Stroke Rehabilitation with Multimodal Activity JournalingProceedings of the ACM on Interactive, Mobile, Wearable and Ubiquitous Technologies10.1145/36997238:4(1-29)Online publication date: 21-Nov-2024
  • (2024)Challenging Ableism: A Critical Turn Toward Disability Justice in HCIXRDS: Crossroads, The ACM Magazine for Students10.1145/366560230:4(50-55)Online publication date: 28-Jun-2024
  • (2024)Exploring how People with Spinal Cord Injuries Seek Support on Social MediaProceedings of the 26th International ACM SIGACCESS Conference on Computers and Accessibility10.1145/3663548.3675628(1-17)Online publication date: 27-Oct-2024
  • Show More Cited By

Recommendations

Comments

Information & Contributors

Information

Published In

cover image ACM Conferences
DIS '21: Proceedings of the 2021 ACM Designing Interactive Systems Conference
June 2021
2082 pages
ISBN:9781450384766
DOI:10.1145/3461778
Permission to make digital or hard copies of all or part of this work for personal or classroom use is granted without fee provided that copies are not made or distributed for profit or commercial advantage and that copies bear this notice and the full citation on the first page. Copyrights for components of this work owned by others than the author(s) must be honored. Abstracting with credit is permitted. To copy otherwise, or republish, to post on servers or to redistribute to lists, requires prior specific permission and/or a fee. Request permissions from [email protected].

Sponsors

Publisher

Association for Computing Machinery

New York, NY, United States

Publication History

Published: 28 June 2021

Permissions

Request permissions for this article.

Check for updates

Author Tags

  1. ICF
  2. Multiple disabilities
  3. Research methods
  4. Spinal cord injury

Qualifiers

  • Research-article
  • Research
  • Refereed limited

Conference

DIS '21
Sponsor:
DIS '21: Designing Interactive Systems Conference 2021
June 28 - July 2, 2021
Virtual Event, USA

Acceptance Rates

Overall Acceptance Rate 1,158 of 4,684 submissions, 25%

Contributors

Other Metrics

Bibliometrics & Citations

Bibliometrics

Article Metrics

  • Downloads (Last 12 months)52
  • Downloads (Last 6 weeks)5
Reflects downloads up to 27 Dec 2024

Other Metrics

Citations

Cited By

View all
  • (2024)GoalTrack: Supporting Personalized Goal-Setting in Stroke Rehabilitation with Multimodal Activity JournalingProceedings of the ACM on Interactive, Mobile, Wearable and Ubiquitous Technologies10.1145/36997238:4(1-29)Online publication date: 21-Nov-2024
  • (2024)Challenging Ableism: A Critical Turn Toward Disability Justice in HCIXRDS: Crossroads, The ACM Magazine for Students10.1145/366560230:4(50-55)Online publication date: 28-Jun-2024
  • (2024)Exploring how People with Spinal Cord Injuries Seek Support on Social MediaProceedings of the 26th International ACM SIGACCESS Conference on Computers and Accessibility10.1145/3663548.3675628(1-17)Online publication date: 27-Oct-2024
  • (2024)RE Methods for Virtual Reality Software Product Development: A Mapping StudyACM Transactions on Software Engineering and Methodology10.1145/364959533:4(1-31)Online publication date: 26-Feb-2024
  • (2024)Toward Building Design Empathy for People with Disabilities Using Social Media Data: A New Approach for Novice DesignersProceedings of the 2024 ACM Designing Interactive Systems Conference10.1145/3643834.3660687(3145-3160)Online publication date: 1-Jul-2024
  • (2024)Investigating Technology Adoption Soon After Sustaining a Spinal Cord InjuryProceedings of the ACM on Interactive, Mobile, Wearable and Ubiquitous Technologies10.1145/36435078:1(1-24)Online publication date: 6-Mar-2024
  • (2024)Reenvisioning Patient Education with Smart Hospital Patient RoomsProceedings of the ACM on Interactive, Mobile, Wearable and Ubiquitous Technologies10.1145/36314197:4(1-23)Online publication date: 12-Jan-2024
  • (2024)“I Thought: Everybody Wants to Participate, Right?”—Exploring Patient Motivation for Taking Part in Long-Term Qualitative ResearchAmbient Assisted Living10.1007/978-3-031-77318-1_32(478-492)Online publication date: 20-Dec-2024
  • (2023)A Meta-Synthesis of the Barriers and Facilitators for Personal Informatics SystemsProceedings of the ACM on Interactive, Mobile, Wearable and Ubiquitous Technologies10.1145/36108937:3(1-35)Online publication date: 27-Sep-2023
  • (2023)Understanding Participation among Disabled Creators in Online MarketplacesProceedings of the ACM on Human-Computer Interaction10.1145/36101057:CSCW2(1-28)Online publication date: 4-Oct-2023
  • Show More Cited By

View Options

Login options

View options

PDF

View or Download as a PDF file.

PDF

eReader

View online with eReader.

eReader

HTML Format

View this article in HTML Format.

HTML Format

Media

Figures

Other

Tables

Share

Share

Share this Publication link

Share on social media