Author(s):

  • Tamanna Motahar
  • Jason Wiese

Abstract:

Personal informatics (PI) has become an area of significant research over the past decade, maturing into a sub-field that seeks to support people from many backgrounds and life contexts in collecting and finding value in their personal data. PI research includes a focus on people with chronic conditions as a monolithic group, but currently fails to distinguish the needs of people with motor disabilities (MD). To understand how current PI literature addresses those needs, we conducted a mapping review on PI publications engaged with people with MD. We report results from 50 publications identified in the ACM DL, Pubmed, JMIR, SCOPUS, and IEEE Xplore. Our analysis shows significant incompatibilities between the needs of individuals with MD and the ways that PI literature supports them. We also found inconsistencies in the ways that disability levels are reported, that PI literature for MD excludes non-health-related data domains, and an insufficient focus on PI tools’ accessibility and usability for some MD users. In contrast with Epstein et al.’s [36] recent PI review, behavior change and habit awareness were the most common motivation in these publications. Finally, many of the reviewed articles reported involvement by caregivers, trainers, healthcare providers, and researchers across the PI stages. In addition to these insights, we provide recommendations for designing PI technology through a user-centric lens that will broaden the scope of PI and include people regardless of their motor abilities.

Documentation:

https://doi.org/10.1145/3534614

References:

  1. Charles Abraham and Susan Michie. 2008. A taxonomy of behavior change techniques used in interventions. Health psychology 27, 3 (2008), 379.Google Scholar
  2. Elgin Akpinar, Yeliz Yeşilada, and Selim Temizer. 2020. The Effect of Context on Small Screen and Wearable Device Users’ Performance-A Systematic Review. ACM Computing Surveys (CSUR) 53, 3 (2020), 1–44.Google ScholarDigital Library
  3. Sonya Allin, John Shepherd, Teri Thorson, Jennifer Tomasone, Sarah Munce, Gary Linassi, Christopher B McBride, Tizneem Jiancaro, and Susan Jaglal. 2020. Web-based health coaching for spinal cord injury: results from a mixed methods feasibility evaluation. JMIR rehabilitation and assistive technologies 7, 2 (2020), e16351.Google Scholar
  4. 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. 470–481.Google ScholarDigital Library
  5. 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. 35–46.Google ScholarDigital Library
  6. Ahmad Alsaleem, Ross Imburgia, Andrew Merryweather, Jeffrey Rosenbluth, Stephen Trapp, and Jason Wiese. 2020. Applying Ability-Based Design Principles to Adaptive Outdoor Activities. In Proceedings of the 2020 ACM Designing Interactive Systems Conference. 1–12.Google ScholarDigital Library
  7. Julia Amann, Maddalena Fiordelli, Mirjam Brach, Sue Bertschy, Anke Scheel-Sailer, and Sara Rubinelli. 2020. Co-designing a Self-Management App Prototype to Support People With Spinal Cord Injury in the Prevention of Pressure Injuries: Mixed Methods Study. JMIR mHealth and uHealth 8, 7 (2020), e18018.Google ScholarCross Ref
  8. Julia Amann, Maddalena Fiordelli, Anke Scheel-Sailer, Mirjam Brach, and Sara Rubinelli. 2020. Opportunities and challenges of a self-management app to support people with spinal cord injury in the prevention of pressure injuries: qualitative study. JMIR mHealth and uHealth 8, 12 (2020), e22452.Google ScholarCross Ref
  9. Diego E Arias, Esteban J Pino, Pablo Aqueveque, and Dorothy W Curtis. 2015. Wireless monitoring system for wheelchair users with severe mobility impairment. In Mobile Health. Springer, 195–219.Google Scholar
  10. Gustavo Armagno. 2012. The Role of HCI in the Construction of Disability. In The 26th BCS Conference on Human Computer Interaction 26. 1–4.Google Scholar
  11. Giulia Barbareschi, Catherine Holloway, Nadia Bianchi-Berthouze, Sharon Sonenblum, and Stephen Sprigle. 2018. Use of a low-cost, chest-mounted accelerometer to evaluate transfer skills of wheelchair users during everyday activities: observational study. JMIR rehabilitation and assistive technologies 5, 2 (2018), e11748.Google ScholarCross Ref
  12. Eric PS Baumer, Vera Khovanskaya, Mark Matthews, Lindsay Reynolds, Victoria Schwanda Sosik, and Geri Gay. 2014. Reviewing reflection: on the use of reflection in interactive system design. In Proceedings of the 2014 conference on Designing interactive systems. 93–102.Google ScholarDigital Library
  13. Pedro Belinchon-deMiguel, Pablo Ruisoto, and Vicente Javier Clemente-Suarez. 2018. A complete psychophysiological profile of a Paralympic athlete in a ultraendurance: A case study. In Proceedings of the Sixth International Conference on Technological Ecosystems for Enhancing Multiculturality. 471–476.Google ScholarDigital Library
  14. 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. 183–192.Google ScholarDigital Library
  15. Ayse G Buyuktur, Pei-Yao Hung, Mark W Newman, and Mark S Ackerman. 2018. Supporting Collaboratively Constructed Independence: A Study of Spinal Cord Injury. Proceedings of the ACM on Human-Computer Interaction 2, CSCW (2018), 1–25.Google ScholarDigital Library
  16. Charles Campeau-Vallerand, François Michaud, François Routhier, Philippe S Archambault, Dominic Létourneau, Dominique Gélinas-Bronsard, Claudine Auger, et al. 2019. Development of a web-based monitoring system for power tilt-in-space wheelchairs: formative evaluation. JMIR rehabilitation and assistive technologies 6, 2 (2019), e13560.Google Scholar
  17. Patrick Carrington, Kevin Chang, Helena Mentis, and Amy Hurst. 2015. ” But, I don’t take steps” Examining the Inaccessibility of Fitness Trackers for Wheelchair Athletes. In Proceedings of the 17th international acm sigaccess conference on computers & accessibility. 193–201.Google ScholarDigital Library
  18. 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. 3103–3112.Google ScholarDigital Library
  19. Patrick Carrington, Denzel Ketter, and Amy Hurst. 2017. Understanding fatigue and stamina management opportunities and challenges in wheelchair basketball. In Proceedings of the 19th International ACM SIGACCESS Conference on Computers and Accessibility. 130–139.Google ScholarDigital Library
  20. Patrick Carrington, Gierad Laput, and Jeffrey P Bigham. 2018. Exploring the data tracking and sharing preferences of wheelchair athletes. In Proceedings of the 20th international acm sigaccess conference on computers and accessibility. 242–248.Google ScholarDigital Library
  21. Patrick Alexander Carrington. 2017. Chairable Computing. University of Maryland, Baltimore County.Google Scholar
  22. William P Cheshire and Roy Freeman. 2003. Disorders of sweating. In Seminars in neurology, Vol. 23. Copyright© 2003 by Thieme Medical Publishers, Inc., 333 Seventh Avenue, New …, 399–406.Google Scholar
  23. Eun Kyoung Choe. 2014. Designing self-monitoring technology to promote data capture and reflection. Ph.D. Dissertation.Google Scholar
  24. Eun Kyoung Choe, Bongshin Lee, Matthew Kay, Wanda Pratt, and Julie A Kientz. 2015. SleepTight: low-burden, self-monitoring technology for capturing and reflecting on sleep behaviors. In Proceedings of the 2015 ACM International Joint Conference on Pervasive and Ubiquitous Computing. 121–132.Google ScholarDigital Library
  25. Tya Chuanromanee and Ronald Metoyer. 2021. Transgender People’s Technology Needs to Support Health and Transition. In Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems. 1–13.Google ScholarDigital Library
  26. Chia-Fang Chung, Kristin Dew, Allison Cole, Jasmine Zia, James Fogarty, Julie A Kientz, and Sean A Munson. 2016. Boundary negotiating artifacts in personal informatics: patient-provider collaboration with patient-generated data. In Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing. 770–786.Google ScholarDigital Library
  27. Chia-Fang Chung, Nanna Gorm, Irina A Shklovski, and Sean Munson. 2017. Finding the right fit: understanding health tracking in workplace wellness programs. In Proceedings of the 2017 CHI conference on human factors in computing systems. 4875–4886.Google ScholarDigital Library
  28. Bettye Rose Connell. 1997. The principles of universal design, version 2.0. http://www.design.ncsu.edu/cud/univ_design/princ_overview.htm (1997).Google Scholar
  29. Sunny Consolvo, Predrag Klasnja, David W McDonald, and James A Landay. 2014. Designing for healthy lifestyles: Design considerations for mobile technologies to encourage consumer health and wellness. (2014).Google Scholar
  30. Alessio Conti, Marco Clari, Mari Kangasniemi, Barbara Martin, Alberto Borraccino, and Sara Campagna. 2020. What self-care behaviours are essential for people with spinal cord injury? A systematic review and meta-synthesis. Disability and Rehabilitation (2020), 1–16.Google Scholar
  31. Dan Cosley, Elizabeth Churchill, Jodi Forlizzi, and Sean A Munson. 2017. Introduction to this special issue on the lived experience of personal informatics. Human-Computer Interaction 32, 5-6 (2017), 197–207.Google ScholarDigital Library
  32. Elaine H Coulter, Philippa M Dall, Lynn Rochester, Jon P Hasler, and Malcolm H Granat. 2011. Development and validation of a physical activity monitor for use on a wheelchair. Spinal Cord 49, 3 (2011), 445–450.Google Scholar
  33. Pooja M Desai, Elliot G Mitchell, Maria L Hwang, Matthew E Levine, David J Albers, and Lena Mamykina. 2019. Personal health oracle: Explorations of personalized predictions in diabetes self-management. In Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems. 1–13.Google ScholarDigital Library
  34. James Enciso, Dhruval Variya, James Sunthonlap, Terrence Sarmiento, Ka Mun Lee, James Velasco, Roxanna N Pebdani, Ray D de Leon, Christine Dy, Stefan Keslacy, et al. 2021. Electromyography-Driven Exergaming in Wheelchairs on a Mobile Platform: Bench and Pilot Testing of the WOW-Mobile Fitness System. JMIR Rehabilitation and Assistive Technologies 8, 1 (2021), e16054.Google ScholarCross Ref
  35. Daniel Epstein, Felicia Cordeiro, Elizabeth Bales, James Fogarty, and Sean Munson. 2014. Taming data complexity in lifelogs: exploring visual cuts of personal informatics data. In Proceedings of the 2014 conference on Designing interactive systems. 667–676.Google ScholarDigital Library
  36. Daniel A Epstein, Clara Caldeira, Mayara Costa Figueiredo, Xi Lu, Lucas M Silva, Lucretia Williams, Jong Ho Lee, Qingyang Li, Simran Ahuja, Qiuer Chen, et al. 2020. Mapping and Taking Stock of the Personal Informatics Literature. Proceedings of the ACM on Interactive, Mobile, Wearable and Ubiquitous Technologies 4, 4 (2020), 1–38.Google ScholarDigital Library
  37. Daniel A Epstein, Felicia Cordeiro, James Fogarty, Gary Hsieh, and Sean A Munson. 2016. Crumbs: lightweight daily food challenges to promote engagement and mindfulness. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems. 5632–5644.Google ScholarDigital Library
  38. Daniel A Epstein, Bradley H Jacobson, Elizabeth Bales, David W McDonald, and Sean A Munson. 2015. From” nobody cares” to” way to go!” A Design Framework for Social Sharing in Personal Informatics. In Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing. 1622–1636.Google Scholar
  39. Daniel A Epstein, Jennifer H Kang, Laura R Pina, James Fogarty, and Sean A Munson. 2016. Reconsidering the device in the drawer: lapses as a design opportunity in personal informatics. In Proceedings of the 2016 ACM international joint conference on pervasive and ubiquitous computing. 829–840.Google ScholarDigital Library
  40. Daniel A Epstein, An Ping, James Fogarty, and Sean A Munson. 2015. A lived informatics model of personal informatics. In Proceedings of the 2015 ACM International Joint Conference on Pervasive and Ubiquitous Computing. 731–742.Google ScholarDigital Library
  41. Center for Disease Control and Prevention. [n.d.]. Best Fitness Watch for Wheelchair Users. https://helpandwellness.com/best-fitness-watch-for-wheelchair-users/Google Scholar
  42. Christopher Frauenberger. 2015. Disability and technology: A critical realist perspective. In Proceedings of the 17th International ACM SIGACCESS Conference on Computers & Accessibility. 89–96.Google ScholarDigital Library
  43. Jon Froehlich, Jacob O Wobbrock, and Shaun K Kane. 2007. Barrier pointing: using physical edges to assist target acquisition on mobile device touch screens. In Proceedings of the 9th international ACM SIGACCESS conference on Computers and accessibility. 19–26.Google ScholarDigital Library
  44. Katherine Froehlich-Grobe, Andrea C Betts, Simon J Driver, Danielle N Carlton, Amber Merfeld Lopez, Jaehoon Lee, and M Kaye Kramer. 2020. Group Lifestyle Balance Adapted for Individuals With Impaired Mobility: Outcomes for 6-Month RCT and Combined Groups at 12 Months. American Journal of Preventive Medicine 59, 6 (2020), 805–817.Google ScholarCross Ref
  45. Daniela Garcia-Castillo and Michael D Fetters. 2007. Quality in medical translations: a review. Journal of health care for the poor and underserved 18, 1 (2007), 74.Google ScholarCross Ref
  46. Xavier García-Massó, P Serra-Añó, LM Gonzalez, Yiyao Ye-Lin, Gema Prats-Boluda, and J Garcia-Casado. 2015. Identifying physical activity type in manual wheelchair users with spinal cord injury by means of accelerometers. Spinal Cord 53, 10 (2015), 772–777.Google ScholarCross Ref
  47. Brianna M Goodwin, Christine M Olney, John E Ferguson, Andrew H Hansen, Byron Eddy, Gary Goldish, Melissa M Morrow, and Tamara L Vos-Draper. 2021. Visualization of user interactions with a pressure mapping mobile application for wheelchair users at risk for pressure injuries. Assistive Technology (2021), 1–10.Google Scholar
  48. Tiago Guerreiro, Hugo Nicolau, Joaquim Jorge, and Daniel Gonçalves. 2010. Towards accessible touch interfaces. In Proceedings of the 12th international ACM SIGACCESS conference on Computers and accessibility. 19–26.Google ScholarDigital Library
  49. Tiago João Vieira Guerreiro, Hugo Nicolau, Joaquim Jorge, and Daniel Gonçalves. 2010. Assessing mobile touch interfaces for tetraplegics. In Proceedings of the 12th international conference on Human computer interaction with mobile devices and services. 31–34.Google ScholarDigital Library
  50. Marylou Guihan and Charles H Bombardier. 2012. Potentially modifiable risk factors among veterans with spinal cord injury hospitalized for severe pressure ulcers: a descriptive study. The journal of spinal cord medicine 35, 4 (2012), 240–250.Google ScholarCross Ref
  51. Florian Guldenpfennig and Geraldine Fitzpatrick. 2013. A monitoring device as assistive lifestyle technology: combining functional needs with pleasure. In Proceedings of the 4th augmented human international conference. 190–193.Google ScholarDigital Library
  52. Rebecca Gulotta, Jodi Forlizzi, Rayoung Yang, and Mark Wah Newman. 2016. Fostering engagement with personal informatics systems. In Proceedings of the 2016 ACM Conference on Designing Interactive Systems. 286–300.Google ScholarDigital Library
  53. H Gunn, KN Stevens, S Creanor, J Andrade, L Paul, L Miller, C Green, P Ewings, A Barton, M Berrow, et al. 2021. Balance Right in Multiple Sclerosis (BRiMS): a feasibility randomised controlled trial of a falls prevention programme. Pilot and feasibility studies 7, 1 (2021), 1–15.Google Scholar
  54. Daniel Harrison, Paul Marshall, Nadia Bianchi-Berthouze, and Jon Bird. 2015. Activity tracking: barriers, workarounds and customisation. In Proceedings of the 2015 ACM International Joint Conference on Pervasive and Ubiquitous Computing. 617–621.Google ScholarDigital Library
  55. Shivayogi V Hiremath, Dan Ding, Jonathan Farringdon, and Rory A Cooper. 2012. Predicting energy expenditure of manual wheelchair users with spinal cord injury using a multisensor-based activity monitor. Archives of physical medicine and rehabilitation 93, 11 (2012), 1937–1943.Google Scholar
  56. Shivayogi V Hiremath, Stephen S Intille, Annmarie Kelleher, Rory A Cooper, and Dan Ding. 2016. Estimation of energy expenditure for wheelchair users using a physical activity monitoring system. Archives of physical medicine and rehabilitation 97, 7 (2016), 1146–1153.Google Scholar
  57. impairment 2012. Motor impairment. Retrieved June 07, 2021 from https://www.neuromodulation.com/motor-impairmentGoogle Scholar
  58. Estephanie Jill. [n.d.]. The ICF: An Overview. https://www.cdc.gov/nchs/data/icd/icfoverview_finalforwho10sept.pdfGoogle Scholar
  59. Simon L Jones, William Hue, Ryan M Kelly, Rosemarie Barnett, Violet Henderson, and Raj Sengupta. 2021. Determinants of Longitudinal Adherence in Smartphone-Based Self-Tracking for Chronic Health Conditions: Evidence from Axial Spondyloarthritis. Proceedings of the ACM on Interactive, Mobile, Wearable and Ubiquitous Technologies 5, 1 (2021), 1–24.Google ScholarDigital Library
  60. Kazi Sinthia Kabir, Ahmad Alsaleem, and Jason Wiese. 2021. The Impact of Spinal Cord Injury on Participation in Human-Centered Research. In Designing Interactive Systems Conference 2021. 1902–1914.Google Scholar
  61. Shaun K Kane, Anhong Guo, and Meredith Ringel Morris. 2020. Sense and Accessibility: Understanding People with Physical Disabilities’ Experiences with Sensing Systems. In The 22nd International ACM SIGACCESS Conference on Computers and Accessibility. 1–14.Google ScholarDigital Library
  62. Kati S Karinharju, Alexandra M Boughey, Sean M Tweedy, Kelly M Clanchy, Stewart G Trost, and Sjaan R Gomersall. 2021. Validity of the Apple Watch® for monitoring push counts in people using manual wheelchairs. The journal of spinal cord medicine 44, 2 (2021), 212–220.Google Scholar
  63. Sung-In Kim, Eunkyung Jo, Myeonghan Ryu, Inha Cha, Young-Ho Kim, Heejung Yoo, and Hwajung Hong. 2019. Toward becoming a better self: Understanding self-tracking experiences of adolescents with autism spectrum disorder using custom trackers. In Proceedings of the 13th EAI International Conference on Pervasive Computing Technologies for Healthcare. 169–178.Google ScholarDigital Library
  64. Young-Ho Kim, Jae Ho Jeon, Bongshin Lee, Eun Kyoung Choe, and Jinwook Seo. 2017. OmniTrack: a flexible self-tracking approach leveraging semi-automated tracking. Proceedings of the ACM on Interactive, Mobile, Wearable and Ubiquitous Technologies 1, 3 (2017), 1–28.Google ScholarDigital Library
  65. K Kiuchi, T Inayama, Y Muraoka, S Ikemoto, O Uemura, and K Mizuno. 2014. Preliminary study for the assessment of physical activity using a triaxial accelerometer with a gyro sensor on the upper limbs of subjects with paraplegia driving a wheelchair on a treadmill. Spinal Cord 52, 7 (2014), 556–563.Google ScholarCross Ref
  66. Hedwig Kooijmans, HLD Horemans, HJ Stam, and JBJ Bussmann. 2014. Valid detection of self-propelled wheelchair driving with two accelerometers. Physiological measurement 35, 11 (2014), 2297.Google Scholar
  67. Hedwig Kooijmans, Marcel WM Post, Henk J Stam, Lucas HV Van der Woude, Dorien CM Spijkerman, Govert J Snoek, Helma MH Bongers-Janssen, CF Van Koppenhagen, Jos W Twisk, ALLRISC Group, et al. 2017. Effectiveness of a self-management intervention to promote an active lifestyle in persons with long-term spinal cord injury: The HABITS randomized clinical trial. Neurorehabilitation and neural repair 31, 12 (2017), 991–1004.Google Scholar
  68. Paul Krebs, James O Prochaska, and Joseph S Rossi. 2010. A meta-analysis of computer-tailored interventions for health behavior change. Preventive medicine 51, 3-4 (2010), 214–221.Google Scholar
  69. Michael Alan Kryger, Theresa M Crytzer, Andrea Fairman, Eleanor J Quinby, Meredith Karavolis, Gede Pramana, I Made Agus Setiawan, Gina Pugliano McKernan, Bambang Parmanto, and Brad E Dicianno. 2019. The effect of the interactive mobile health and rehabilitation system on health and psychosocial outcomes in spinal cord injury: randomized controlled trial. Journal of medical Internet research 21, 8 (2019), e14305.Google ScholarCross Ref
  70. Byron Lai, James Rimmer, Beth Barstow, Emil Jovanov, and C Scott Bickel. 2016. Teleexercise for persons with spinal cord injury: a mixed-methods feasibility case series. JMIR rehabilitation and assistive technologies 3, 2 (2016), e8.Google Scholar
  71. J Lazar, HJ Feng, and H Hochheiser. 2017. Working with research participants with disabilities: Research Methods in Human Computer Interaction.Google Scholar
  72. Marc Le Fort, Chloé Lefèvre, Pierre Kieny, Brigitte Perrouin-Verbe, and Jean-François Ravaud. 2021. The functioning of social support in long-term prevention after spinal cord injury. A qualitative study. Annals of physical and rehabilitation medicine 64, 4 (2021), 101454.Google ScholarCross Ref
  73. Yvonne C Learmonth, Dominique Kinnett-Hopkins, Ian M Rice, JL Dysterheft, and RW Motl. 2016. Accelerometer output and its association with energy expenditure during manual wheelchair propulsion. Spinal cord 54, 2 (2016), 110–114.Google Scholar
  74. Ian Li, Anind Dey, and Jodi Forlizzi. 2010. A stage-based model of personal informatics systems. In Proceedings of the SIGCHI conference on human factors in computing systems. 557–566.Google ScholarDigital Library
  75. Ian Li, Anind K Dey, and Jodi Forlizzi. 2011. Understanding my data, myself: supporting self-reflection with ubicomp technologies. In Proceedings of the 13th international conference on Ubiquitous computing. 405–414.Google ScholarDigital Library
  76. Ian Li, Yevgeniy Medynskiy, Jon Froehlich, and Jakob Larsen. 2012. Personal informatics in practice: improving quality of life through data. In CHI’12 Extended Abstracts on Human Factors in Computing Systems. 2799–2802.Google ScholarDigital Library
  77. Alessandro Liberati, Douglas G Altman, Jennifer Tetzlaff, Cynthia Mulrow, Peter C Gøtzsche, John PA Ioannidis, Mike Clarke, Philip J Devereaux, Jos Kleijnen, and David Moher. 2009. The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration. Journal of clinical epidemiology 62, 10 (2009), e1-e34.Google ScholarCross Ref
  78. Hsin-Yi Tanya Liu, Rui-Min Chia, I Made Agus Setiawan, Theresa Marie Crytzer, and Dan Ding. 2018. Development of “My Wheelchair Guide” app: a qualitative study. Disability and Rehabilitation: Assistive Technology (2018).Google Scholar
  79. Monika Löfgren and Cecilia Norrbrink. 2012. “But I know what works”-patients’ experience of spinal cord injury neuropathic pain management. Disability and rehabilitation 34, 25 (2012), 2139–2147.Google Scholar
  80. Kai Lukoff, Taoxi Li, Yuan Zhuang, and Brian Y Lim. 2018. TableChat: mobile food journaling to facilitate family support for healthy eating. Proceedings of the ACM on Human-Computer Interaction 2, CSCW (2018), 1–28.Google ScholarDigital Library
  81. Kelly Mack, Emma McDonnell, Dhruv Jain, Lucy Lu Wang, Jon E. Froehlich, and Leah Findlater. 2021. What Do We Mean by “Accessibility Research”? A Literature Survey of Accessibility Papers in CHI and ASSETS from 1994 to 2019. In Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems (Yokohama, Japan) (CHI ’21). Association for Computing Machinery, New York, NY, USA, Article 371, 18 pages. https://doi.org/10.1145/3411764.3445412Google ScholarDigital Library
  82. 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. 1–12.Google ScholarDigital Library
  83. Meethu Malu, Pramod Chundury, and Leah Findlater. 2019. Motor Accessibility of Smartwatch Touch and Bezel Input. In The 21st International ACM SIGACCESS Conference on Computers and Accessibility. 563–565.Google Scholar
  84. Meethu Malu and Leah Findlater. 2016. Toward accessible health and fitness tracking for people with mobility impairments. In Proceedings of the 10th EAI International Conference on Pervasive Computing Technologies for Healthcare. 170–177.Google ScholarDigital Library
  85. Meethu Malu and Leah Findlater. 2017. Sharing automatically tracked activity data: implications for therapists and people with mobility impairments. In Proceedings of the 11th EAI International Conference on Pervasive Computing Technologies for Healthcare. 136–145.Google ScholarDigital Library
  86. Lena Mamykina, Andrew D Miller, Elizabeth D Mynatt, and Daniel Greenblatt. 2010. Constructing identities through storytelling in diabetes management. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. 1203–1212.Google ScholarDigital Library
  87. Jennifer Mankoff, Gillian R Hayes, and Devva Kasnitz. 2010. Disability studies as a source of critical inquiry for the field of assistive technology. In Proceedings of the 12th international ACM SIGACCESS conference on Computers and accessibility. 3–10.Google ScholarDigital Library
  88. Aqueasha Martin-Hammond and Tanjala S Purnell. 2022. Bridging Community, History, and Culture in Personal Informatics Tools: Insights from an Existing Community-Based Heart Health Intervention for Black Americans. Proceedings of the ACM on Human-Computer Interaction 6, GROUP (2022), 1–23.Google ScholarDigital Library
  89. Mark Matthews, Elizabeth Murnane, and Jaime Snyder. 2017. Quantifying the changeable self: the role of self-tracking in coming to terms with and managing bipolar disorder. Human-Computer Interaction 32, 5-6 (2017), 413–446.Google ScholarDigital Library
  90. Mollie McKillop, Lena Mamykina, and Noémie Elhadad. 2018. Designing in the dark: eliciting self-tracking dimensions for understanding enigmatic disease. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems. 1–15.Google ScholarDigital Library
  91. Janis Lena Meissner, John Vines, Janice McLaughlin, Thomas Nappey, Jekaterina Maksimova, and Peter Wright. 2017. Do-it-yourself empowerment as experienced by novice makers with disabilities. In Proceedings of the 2017 conference on designing interactive systems. 1053–1065.Google ScholarDigital Library
  92. David A Mellis and Leah Buechley. 2014. Do-it-yourself cellphones: an investigation into the possibilities and limits of high-tech diy. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. 1723–1732.Google ScholarDigital Library
  93. Joanna Milward, Paolo Deluca, Colin Drummond, and Andreas Kimergård. 2018. Developing typologies of user engagement with the BRANCH alcohol-harm reduction smartphone app: qualitative study. JMIR mHealth and uHealth 6, 12 (2018), e11692.Google ScholarCross Ref
  94. Enid Montague, Jennifer Perchonok, et al. 2012. Health and wellness technology use by historically underserved health consumers: systematic review. Journal of medical Internet research 14, 3 (2012), e2095.Google ScholarCross Ref
  95. W Ben Mortenson, Gurkaran Singh, Megan MacGillivray, Mahsa Sadeghi, Patricia Mills, Jared Adams, and Bonita Sawatzky. 2019. Development of a self-management app for people with spinal cord injury. Journal of medical systems 43, 6 (2019), 1–12.Google ScholarDigital Library
  96. Tamanna Motahar, Isha Ghosh, and Jason Wiese. 2022. Identifying factors that inhibit self-care behavior among individuals with severe spinal cord injury. In CHI Conference on Human Factors in Computing Systems. 1–16.Google ScholarDigital Library
  97. Martez E Mott, Radu-Daniel Vatavu, Shaun K Kane, and Jacob O Wobbrock. 2016. Smart touch: Improving touch accuracy for people with motor impairments with template matching. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems. 1934–1946.Google ScholarDigital Library
  98. Elizabeth L Murnane, Tara G Walker, Beck Tench, Stephen Voida, and Jaime Snyder. 2018. Personal informatics in interpersonal contexts: towards the design of technology that supports the social ecologies of long-term mental health management. Proceedings of the ACM on Human-Computer Interaction 2, CSCW (2018), 1–27.Google ScholarDigital Library
  99. 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. 209–216.Google ScholarDigital Library
  100. Ditouah Didier Niama Natta, Thierry Lejeune, Christine Detrembleur, Berenice Yarou, Emmanuel S Sogbossi, Etienne Alagnidé, Toussaint Kpadonou, Clara Selves, and Gaëtan Stoquart. 2021. Effectiveness of a self-rehabilitation program to improve upper-extremity function after stroke in developing countries: A randomized controlled trial. Annals of Physical and Rehabilitation Medicine 64, 1 (2021), 101413.Google ScholarCross Ref
  101. Tom Edward Nightingale, Jean-Philippe Walhin, Dylan Thompson, and James Lee John Bilzon. 2015. Influence of accelerometer type and placement on physical activity energy expenditure prediction in manual wheelchair users. PloS one 10, 5 (2015), e0126086.Google ScholarCross Ref
  102. Francisco Nunes, Nervo Verdezoto, Geraldine Fitzpatrick, Morten Kyng, Erik Grönvall, and Cristiano Storni. 2015. Self-care technologies in HCI: Trends, tensions, and opportunities. ACM Transactions on Computer-Human Interaction (TOCHI) 22, 6 (2015), 1–45.Google ScholarDigital Library
  103. Sara H Olsen, Sandra L Saperstein, and Robert S Gold. 2019. Content and Feature Preferences for a Physical Activity App for Adults With Physical Disabilities: Focus Group Study. JMIR mHealth and uHealth 7, 10 (2019), e15019.Google Scholar
  104. Desmond O’Neill, Frances Horgan, Anne Hickey, and Hannah McGee. 2008. Stroke is a chronic disease with acute events. Bmj 336, 7642 (2008), 461–461.Google Scholar
  105. Sun Young Park and Yunan Chen. 2015. Individual and social recognition: Challenges and opportunities in migraine management. In Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing. 1540–1551.Google ScholarDigital Library
  106. Laura R Pina, Sang-Wha Sien, Teresa Ward, Jason C Yip, Sean A Munson, James Fogarty, and Julie A Kientz. 2017. From personal informatics to family informatics: Understanding family practices around health monitoring. In Proceedings of the 2017 acm conference on computer supported cooperative work and social computing. 2300–2315.Google ScholarDigital Library
  107. Ruth Pinder. 1996. Sick-but-fit or fit-but-sick? Ambiguity and identity at the workplace. Exploring the divide (1996), 135–156.Google Scholar
  108. Karin Postma, Johannes BJ Bussmann, Tijn van Diemen, Marcel WM Post, Jos Dekkers, Ilse JW van Nes, Rutger Osterthun, and Rita JG van den Berg-Emons. 2020. Physical Activity and Sedentary Behavior From Discharge to 1 Year After Inpatient Rehabilitation in Ambulatory People With Spinal Cord Injury: A Longitudinal Cohort Study. Archives of Physical Medicine and Rehabilitation 101, 12 (2020), 2061–2070.Google ScholarCross Ref
  109. Amon Rapp and Maurizio Tirassa. 2017. Know thyself: a theory of the self for personal informatics. Human-Computer Interaction 32, 5-6 (2017), 335–380.Google ScholarDigital Library
  110. Amanda Reichard, Muriel D Saunders, Richard R Saunders, Joseph E Donnelly, Eric Lauer, Debra K Sullivan, and Lauren Ptomey. 2015. A comparison of two weight management programs for adults with mobility impairments. Disability and health journal 8, 1 (2015), 61–69.Google Scholar
  111. John Rooksby, Mattias Rost, Alistair Morrison, and Matthew Chalmers. 2014. Personal tracking as lived informatics. In Proceedings of the SIGCHI conference on human factors in computing systems. 1163–1172.Google ScholarDigital Library
  112. Kate Rousseau-Harrison, Annie Rochette, François Routhier, Danielle Dessureault, François Thibault, and Odile Cote. 2012. Perceived impacts of a first wheelchair on social participation. Disability and Rehabilitation: Assistive Technology 7, 1 (2012), 37–44.Google ScholarCross Ref
  113. François Routhier, W Ben Mortenson, Louise Demers, Atiya Mahmood, Habib Chaudhury, Kathleen A Martin Ginis, and William C Miller. 2019. Mobility and participation of people with disabilities using mobility assistive technologies: Protocol for a mixed-methods study. JMIR research protocols 8, 4 (2019), e12089.Google Scholar
  114. Jessica Schroeder, Chia-Fang Chung, Daniel A Epstein, Ravi Karkar, Adele Parsons, Natalia Murinova, James Fogarty, and Sean A Munson. 2018. Examining self-tracking by people with migraine: goals, needs, and opportunities in a chronic health condition. In Proceedings of the 2018 Designing Interactive Systems Conference. 135–148.Google ScholarDigital Library
  115. sci [n.d.].Google Scholar
  116. Alexandru-Ionut Siean and Radu-Daniel Vatavu. 2021. Wearable Interactions for Users with Motor Impairments: Systematic Review, Inventory, and Research Implications. In The 23rd International ACM SIGACCESS Conference on Computers and Accessibility. 1–15.Google ScholarDigital Library
  117. Hardeep Singh, Arielle Shibi Rosen, Geoff Bostick, Anita Kaiser, and Kristin E Musselman. 2020. Exploring the causes and impacts of falls among ambulators with spinal cord injury using photovoice: a mixed-methods study. BMJ open 10, 8 (2020), e039763.Google Scholar
  118. Emma M Smith, Edward M Giesbrecht, W Ben Mortenson, and William C Miller. 2016. Prevalence of wheelchair and scooter use among community-dwelling Canadians. Physical therapy 96, 8 (2016), 1135–1142.Google Scholar
  119. Katta Spiel, Fares Kayali, Louise Horvath, Michael Penkler, Sabine Harrer, Miguel Sicart, and Jessica Hammer. 2018. Fitter, happier, more productive? The normative ontology of fitness trackers. In Extended abstracts of the 2018 CHI conference on human factors in computing systems. 1–10.Google Scholar
  120. Leanne Squair and H Groeneveld. 2003. Disability definitions. Teoksessa RD Steadward, GD Wheeler & EJ Watkinson (toim.) Adapted physical activity. Edmonton: the university of Alberta (2003), 45–64.Google Scholar
  121. PJ Standen, K Threapleton, A Richardson, Louise Connell, DJ Brown, S Battersby, F Platts, and Audrey Burton. 2017. A low cost virtual reality system for home based rehabilitation of the arm following stroke: a randomised controlled feasibility trial. Clinical rehabilitation 31, 3 (2017), 340–350.Google Scholar
  122. Cristiano Storni. 2014. Design challenges for ubiquitous and personal computing in chronic disease care and patient empowerment: a case study rethinking diabetes self-monitoring. Personal and Ubiquitous Computing 18, 5 (2014), 1277–1290.Google ScholarDigital Library
  123. Dallas Swendeman, Nithya Ramanathan, Laura Baetscher, Melissa Medich, Aaron Scheffler, W Scott Comulada, and Deborah Estrin. 2015. Smartphone self-monitoring to support self-management among people living with HIV: perceived benefits and theory of change from a mixed-methods, randomized pilot study. Journal of acquired immune deficiency syndromes (1999) 69, 0 1 (2015), S80.Google Scholar
  124. Ricardo A Tanhoffer, Aldre IP Tanhoffer, Jacqueline Raymond, Nathan A Johnson, Andrew P Hills, and Glen M Davis. 2015. Energy expenditure in individuals with spinal cord injury quantified by doubly labeled water and a multi-sensor armband. Journal of Physical Activity and Health 12, 2 (2015), 163–170.Google ScholarCross Ref
  125. Alexandra L Terrill, Justin J MacKenzie, Maija Reblin, Jackie Einerson, Jesse Ferraro, and Roger Altizer. 2019. A collaboration between game developers and rehabilitation researchers to develop a web-based app for persons with physical disabilities: case study. JMIR rehabilitation and assistive technologies 6, 2 (2019), e13511.Google Scholar
  126. Mohammad Mosayed Ullah, Ellie Fossey, and Rwth Stuckey. 2018. The meaning of work after spinal cord injury: a scoping review. Spinal Cord 56, 2 (2018), 92–105.Google ScholarCross Ref
  127. Emiliana Valderrama-Gama, Javier Damián, Ana Ruigómez, and José M Martín-Moreno. 2002. Chronic disease, functional status, and self-ascribed causes of disabilities among noninstitutionalized older people in Spain. The Journals of Gerontology Series A: Biological Sciences and Medical Sciences 57, 11 (2002), M716-M721.Google ScholarCross Ref
  128. John Vines, Gary Pritchard, Peter Wright, Patrick Olivier, and Katie Brittain. 2015. An age-old problem: Examining the discourses of ageing in HCI and strategies for future research. ACM Transactions on Computer-Human Interaction (TOCHI) 22, 1 (2015), 1–27.Google ScholarDigital Library
  129. Karine Wendrich, Pim van Oirschot, Marijn Bart Martens, Marco Heerings, Peter Joseph Jongen, and Lotte Krabbenborg. 2019. Toward digital self-monitoring of multiple sclerosis: investigating first experiences, needs, and wishes of people with ms. International journal of MS care 21, 6 (2019), 282–291.Google ScholarCross Ref
  130. Mary H Wilde, James M McMahon, Eileen Fairbanks, Judith Brasch, Robert Parshall, Feng Zhang, Sarah Miner, Deborah Thayer, Dan Schneiderman, and Brian Harrington. 2016. Feasibility of a web-based self-management intervention for intermittent urinary catheter users with spinal cord injury. Journal of wound, ostomy, and continence nursing: official publication of The Wound, Ostomy and Continence Nurses Society/WOCN 43, 5 (2016), 529.Google ScholarCross Ref
  131. Jacob O Wobbrock, Shaun K Kane, Krzysztof Z Gajos, Susumu Harada, and Jon Froehlich. 2011. Ability-based design: Concept, principles and examples. ACM Transactions on Accessible Computing (TACCESS) 3, 3 (2011), 1–27.Google ScholarDigital Library
  132. Yu-Sheng Yang, Ying-Chun Chou, Jui-Jen Hsu, and Jyh-Jong Chang. 2010. Effects of audio feedback on sitting behaviors of community-dwelling manual wheelchair users with spinal cord injuries. Assistive Technology 22, 2 (2010), 79–86.Google ScholarCross Ref
  133. Anon Ymous, Katta Spiel, Os Keyes, Rua M Williams, Judith Good, Eva Hornecker, and Cynthia L Bennett. 2020. ” I am just terrified of my future”—Epistemic Violence in Disability Related Technology Research. In Extended Abstracts of the 2020 CHI Conference on Human Factors in Computing Systems. 1–16.Google ScholarDigital Library
  134. Shikun Zhang, Florian Schaub, Yuanyuan Feng, and Norman Sadeh. 2019. “It Only Tells Me How I Slept, Not How to Fix It”: Exploring Sleep Behaviors and Opportunities for Sleep Technology. In International Conference on Information. Springer, 754–766.Google ScholarCross Ref
  135. Leming Zhou, Andi Saptono, I Made Agus Setiawan, and Bambang Parmanto. 2020. Making Self-Management Mobile Health Apps Accessible to People With Disabilities: Qualitative Single-Subject Study. JMIR mHealth and uHealth 8, 1 (2020), e15060.Google Scholar