skip to main content
research-article

Care Workers' Wellbeing in Data-Driven Healthcare Workplace: Identity, Agency, and Social Justice

Published: 04 October 2023 Publication History

Abstract

This paper zooms in on a particularly precarious and largely invisibilized group of care workers: middle-aged and less-educated female migrant workers from rural China. Drawing from a mixed-methods study, we specifically examine how the extensive use of data-driven technologies impacts care workers' wellbeing in the workplace. Our findings suggest the extensive use of data-driven healthcare technologies are eroding care workers' workplace wellbeing, especially their sense of identity, agency, and perceived justice. Specifically, in the data-driven workplace, care workers are treated as a servant to data, instead of a human with agency and knowledge. They are no merely care workers who provide various care services for care receivers, but also data workers, whose practices and agency are greatly limited by data. This aggravates preexisting hardship of care workers, and reproduces new social injustice. We suggest CSCW researchers and practitioners take into account how pre-existing social structures shaped the designs of socio-technological systems, and reconceptualize the paradigm of "data-drivenness" for more just and ethical data-driven healthcare technologies.

References

[1]
AARHUS UNIVERSITY. 2018. Conference on Datafication of Healthcare Transforming practices, roles, and knowledge. https://conferences.au.dk/datafication2018/.
[2]
AARP. 2015. Caregiving in the U.S. https://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-us-research-report-2015.pdf.
[3]
Chloe Adler and Carole Lalonde. 2019. Identity, agency and institutional work in higher education: a qualitative meta-synthesis. Qualitative Research in Organizations and Management: An International Journal (2019).
[4]
Seyram Avle and Sarah Fox. 2021. Tech Labor. Interactions XXVIII.4 (2021).
[5]
Claus Bossen, Kathleenh Pine, Federico Cabitza, Gunnar Ellingsen and Enricomaria Piras. 2019. Data work in healthcare: An Introduction, SAGE Publications Sage UK: London, England, 465--474.
[6]
Bailey Bryant. 2019. Caregiver Shortage Could Mean 7.8 Million Unfilled Jobs By 2026. https://homehealthcarenews.com/2019/01/caregiver-shortage-could-mean-7--8-million-unfilled-jobs-by-2026/.
[7]
Neenal Chappell and Rcolin Reid. 2002. Burden and well-being among caregivers: examining the distinction. The Gerontologist 42, 6 (2002), 772--780.
[8]
Yunan Chen, Victor Ngo and Sunyoung Park. 2013. Caring for caregivers: designing for integrality. In Proceedings of the 2013 conference on Computer supported cooperative work (CSCW'2013), 91--102.
[9]
Cassiem Chew. 2017. Caregiver shortage reaches critical stage. Provider 43 (2017), 14--28.
[10]
Victoria Clarke and Virginia Braun. (Ed.). 2014. Thematic analysis. Encyclopedia of critical psychology, Springer, 1947--1952.
[11]
Arianna Dagliati, Alberto Malovini, Valentina Tibollo and Riccardo Bellazzi. 2021. Health informatics and EHR to support clinical research in the COVID-19 pandemic: an overview. BRIEFINGS IN BIOINFORMATICS 22, 2 (2021), 812--822.
[12]
Karen Danna and Rickyw Griffin. 1999. Health and well-being in the workplace: A review and synthesis of the literature. JOURNAL OF MANAGEMENT 25, 3 (1999), 357--384.
[13]
Charles Davenport. 2020. What the Senior Caregiver Shortage Means for the Eldercare Industry. https://americanhealthcarejournal.com/2020/10/30/what-the-senior-caregiver-shortage-means-for-the-eldercare-industry/.
[14]
National Development and Reform Commission. 2021. The 14th Five-Year Plan and the Vision 2035 of China. https://www.ndrc.gov.cn/xxgk/zcfb/ghwb/202103/t20210323_1270124.html?code=&state=123.
[15]
Pamela Doty, Korbin Liu and Joshua Wiener. 1985. An overview of long-term care. Health Care Financing Review (Health Care Financ Rev) 6, 3 (1985), 69.
[16]
Carl Eisdorfer, Saraj Czaja, Davida Loewenstein, Markp Rubert and Soledad Arg U Elles, et al. 2003. The effect of a family therapy and technology-based intervention on caregiver depression. The Gerontologist 43, 4 (2003), 521--531.
[17]
Lynn Etters, Debbie Goodall and Barbarae Harrison. 2008. Caregiver burden among dementia patient caregivers: a review of the literature. Journal of the American Academy of Nurse Practitioners 20, 8 (2008), 423--428.
[18]
Virginia Eubanks (Ed.). 2018. Automating inequality: How high-tech tools profile, police, and punish the poor. St. Martin's Press.
[19]
Sanford Finkel, Saraj Czaja, Zoran Martinovich, Carol Harris and Donna Pezzuto, et al. 2007. E-care: a telecommunications technology intervention for family caregivers of dementia patients. The American journal of geriatric psychiatry 15, 5 (2007), 443--448.
[20]
Cynthiad Fisher. 2014. Conceptualizing and measuring wellbeing at work.
[21]
Geraldine Fitzpatrick and Gunnar Ellingsen. 2013. A review of 25 years of CSCW research in healthcare: contributions, challenges and future agendas. Computer Supported Cooperative Work (CSCW) 22, 4 (2013), 609--665.
[22]
Adamm Grant, Marlysk Christianson and Richardh Price. 2007. Happiness, health, or relationships? Managerial practices and employee well-being tradeoffs. Academy of Management Perspectives 21, 3 (2007), 51--63.
[23]
Jonathan Grudin. 1988. Why CSCW applications fail: problems in the design and evaluation of organizational interfaces. In Proceedings of the ACM conference on Computer-supported cooperative work (CSCW'1988), 85--93.
[24]
Eva Grunfeld, Doug Coyle, Timothy Whelan, Jennifer Clinch and Leonard Reyno, et al. 2004. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CANADIAN MEDICAL ASSOCIATION JOURNAL 170, 12 (2004), 1795--1801.
[25]
Eileen Haggerty. 2017. Healthcare and digital transformation. Network Security, 8 (2017), 7--11.
[26]
Gillianr Hayes, Kareng Cheng, Senh Hirano, Karenp Tang and Marnis Nagel, et al. 2014. Estrellita: a mobile capture and access tool for the support of preterm infants and their caregivers. ACM Transactions on Computer-Human Interaction 21, 3 (2014), 1--28.
[27]
Christian Heath and Paul Luff. 1996. Documents and professional practice: bad organisational reasons for good clinical records. In Proceedings of the ACM conference on Computer supported cooperative work (CSCW'1996), 354--363.
[28]
Klaus Hoeyer and Sarah Wadmann. 2020. 'Meaningless work': How the datafication of health reconfigures knowledge about work and erodes professional judgement. ECONOMY AND SOCIETY 49, 3 (2020), 433--454.
[29]
Torhild Holthe, Rita Jentoft, Cathrine Arntzen and Kirsten Thorsen. 2018. Benefits and burdens: family caregivers' experiences of assistive technology (AT) in everyday life with persons with young-onset dementia (YOD). Disability and Rehabilitation: Assistive Technology 13, 8 (2018), 754--762.
[30]
Evelynjs Hovenga, Michaelr Kidd and Sebastian Garde (Ed.). 2010. Health informatics: an overview. Ios Press.
[31]
Taranu Ionut. 2016. Data mining in healthcare: decision making and precision. Database Systems Journal 6, 4 (2016), 33--40.
[32]
Izhaohu. The Introduction of Izhaohu. http://www.izhaohu.com/#/about/company.
[33]
Andersfogh Jensen and Dennis Normark (Ed.). 2018. Pseudoarbejde: Hvordan vi fik travlt med at lave ingenting. Gyldendal Business.
[34]
Naveena Karusala, Azra Ismail, Karthiks Bhat, Aakash Gautam and Sachinr Pendse, et al. 2021. The future of care work: towards a radical politics of care in CSCW research and practice. In Companion Publication of the Conference on Computer Supported Cooperative Work and Social Computing (CSCW'2021), 338--342.
[35]
Elizabeth Kaziunas, Marks Ackerman, Silvia Lindtner and Joycem Lee. 2017. Caring through data: Attending to the social and emotional experiences of health datafication. In Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing (CSCW'2017), 2260--2272.
[36]
Hanna Kinowska and Lukaszjakub Sienkiewicz. 2022. Influence of algorithmic management practices on workplace well-being--evidence from European organisations. Information Technology & People, ahead-of-print (2022).
[37]
Predrag Klasnja and Wanda Pratt. 2012. Healthcare in the pocket: mapping the space of mobile-phone health interventions. JOURNAL OF BIOMEDICAL INFORMATICS 45, 1 (2012), 184--198.
[38]
Florian Ldenpfennig, Francisco Nunes and Geraldine Fitzpatrick. 2015. ProxyCare: Integrating informal care into formal settings. In 9th International Conference on Pervasive Computing Technologies for Healthcare (PervasiveHealth'2015), 141--144.
[39]
Paulm Leonardi and Jeffreyw Treem. 2020. Behavioral visibility: A new paradigm for organization studies in the age of digitization, digitalization, and datafication. ORGANIZATION STUDIES 41, 12 (2020), 1601--1625.
[40]
Znaonui Liang, Gang Zhang, Jimmyxiangji Huang and Qmmingvivian Hu. 2014. Deep learning for healthcare decision making with EMRs. In Proceedings of IEEE International Conference on Bioinformatics and Biomedicine (BIBM'2014), 556--559.
[41]
Silvia Lindtner, Shaowen Bardzell and Jeffrey Bardzell. 2016. Reconstituting the utopian vision of making: HCI after technosolutionism. In Proceedings of the CHI Conference on Human Factors in Computing Systems (CHI'2016), 1390--1402.
[42]
Leslies Liu, Senh Hirano, Monica Tentori, Kareng Cheng and Sheba George, et al. 2011. Improving communication and social support for caregivers of high-risk infants through mobile technologies. In Proceedings of the ACM 2011 conference on Computer supported cooperative work (CSCW'2011), 475--484.
[43]
Deborah Lupton. 2016. The diverse domains of quantified selves: self-tracking modes and dataveillance. ECONOMY AND SOCIETY 45, 1 (2016), 101--122.
[44]
Xiaojuan Ma. 2018. Towards Human-Engaged AI. In Proceedings of the 27th International Joint Conference on Artificial Intelligence (IJCAI'2018), 5682--5686.
[45]
Keshini Madara Marasinghe. 2016. Assistive technologies in reducing caregiver burden among informal caregivers of older adults: a systematic review. Disability and Rehabilitation: Assistive Technology 11, 5 (2016), 353--360.
[46]
Naja Moller and Trine Nielsen. 2020. Who Does the Work of Data? Health Matters (2020).
[47]
Feliciam Moore. 2008. Agency, identity, and social justice education: Preservice teachers' thoughts on becoming agents of change in urban elementary science classrooms. RESEARCH IN SCIENCE EDUCATION 38, 5 (2008), 589--610.
[48]
Wben Mortenson, Alex Pysklywec, Marcusj Fuhrer, Jeffreyw Jutai and Michelle Plante, et al. 2018. Caregivers' experiences with the selection and use of assistive technology. Disability and Rehabilitation: Assistive Technology 13, 6 (2018), 562--567.
[49]
Julie MUSILEK. 2019. How to Build a Culture of Health and Wellness at Work. Great Place to Work (2019).
[50]
Ann Netten. 2014. Measuring social care outcomes: How the ASCOT toolkit helps services improve people's lives. https://www.pssru40.org.uk/ascot.
[51]
Sohu News. 2019. For the Shortage of Elderly Caregiver, how can We Keep the Caregivers? https://www.sohu.com/a/306725613_825955.
[52]
Xinhua News. 2020. We need more caregivers. http://www.xinhuanet.com/politics/2020-09/03/c_1126446000.htm.
[53]
Xinhua News. 2019. Elderly Caregivers, with "no Educational Requirements", but "Strict Occupational Skills Standards". http://www.xinhuanet.com/fortune/2019--11/01/c_1125179013.htm.
[54]
Renmin News. 2020. Technologies Supported Chinese Ageing Care. http://www.stdaily.com/cehua/qzcyj/2020--10/20/content_1030006.shtml.
[55]
Renmin News. 2021. Building Full-coverage, High-quality, Professional, and Sustainable Ageing Care Facilities to Cope with Ageing Boom. http://www.gov.cn/xinwen/2021-04/01/content_5597224.htm.
[56]
Xinhua News. 2018. How to stop elder maltreatment in the facilities. http://www.xinhuanet.com/2018-06/30/c_1123057931.htm.
[57]
Liuqian Ni, Yuling Sun, Yanqin Yang and Liang He. 2019. Human-Engaged Health Care Services Recommendation for Aging and Long-term Care. In Proceedings of IEEE 23rd International Conference on Computer Supported Cooperative Work in Design (CSCWD'2019), 339--344.
[58]
Kavous Salehzadeh Niksirat, Sayan Sarcar, Huatong Sun, Effielc Law and Torkil Clemmensen, et al. 2018. Approaching engagement towards human-engaged computing. In Extended Abstracts of the 2018 CHI Conference on Human Factors in Computing Systems, 1--4.
[59]
General Office of the State Council of China. 2020. Notice on the Strategies of Improving Seniors' Capability of Using Digital Technologies. http://www.gov.cn/zhengce/content/2020--11/24/content_5563804.htm.
[60]
Jes Olesen (Ed.). 2018. Det syge væsen: Hvordan det kan helbredes (The sick creature: How it can be cured). Copenhagen: Saxo.
[61]
International Labour Organization. Workplace well-being. https://www.ilo.org/safework/areasofwork/workplace-health-promotion-and-well-being/WCMS_118396/lang--en/index.htm.
[62]
World Health Organization. 2015. China country assessment report on ageing and health. https://apps.who.int/iris/handle/10665/194271.
[63]
Xavier Parent-Rocheleau and Sharonk Parker. 2022. Algorithms as work designers: How algorithmic management influences the design of jobs. HUMAN RESOURCE MANAGEMENT REVIEW 32, 3 (2022), 100838.
[64]
Kathleenh Pine and Melissa Mazmanian. 2014. Institutional logics of the EMR and the problem of'perfect'but inaccurate accounts. In Proceedings of the 17th ACM conference on Computer supported cooperative work and social computing (CSCW'2014), 283--294.
[65]
Anthony Poon, Vaidehi Hussain, Julia Loughman, Arielc Avgar and Madeline Sterling, et al. 2021. Computer-Mediated Peer Support Needs of Home Care Workers: Emotional Labor and the Politics of Professionalism. Proceedings of the ACM on Human-Computer Interaction 5, CSCW2 (2021), 1--32.
[66]
PSSRU. ASCOT-Carer. https://www.pssru.ac.uk/ascot/projects/.
[67]
Davide Ravasi and Anna Canato. (Ed.). 2010. We are what we do (and how we do it): Organizational technologies and the construction of organizational identity. Technology and organization: Essays in honour of Joan Woodward, Emerald Group Publishing Limited.
[68]
Jeffery Reeves, Hannahm Hollandsworth, Francescaj Torriani, Randy Taplitz and Shira Abeles, et al. 2020. Rapid response to COVID-19: health informatics support for outbreak management in an academic health system. JOURNAL OF THE AMERICAN MEDICAL INFORMATICS ASSOCIATION 27, 6 (2020), 853--859.
[69]
Xiangshi Ren, Chaklam Silpasuwanchai and John Cahill. 2019. Human-engaged computing: the future of human-computer interaction. CCF Transactions on Pervasive Computing and Interaction 1, 1 (2019), 47--68.
[70]
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 (CHI'2014), 1163--1172.
[71]
Alex Rosenblat and Luke Stark. 2016. Algorithmic labor and information asymmetries: A case study of Uber's drivers. International Journal of Communication 10 (2016), 27.
[72]
Minna Ruckenstein and Natashadow Schull. 2017. The datafication of health. Annual Review of Anthropology (ARAPCW) 46 (2017), 261--278.
[73]
Sally Savage and Susan Bailey. 2004. The impact of caring on caregivers' mental health: a review of the literature. Australian Health Review 27, 1 (2004), 111--117.
[74]
Maren Schorch, Lin Wan, Davidwilliam Randall and Volker Wulf. 2016. Designing for those who are overlooked: Insider perspectives on care practices and cooperative work of elderly informal caregivers. In Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work and Social Computing (CSCW'2016), 787--799.
[75]
Richard Schulz and Scottr Beach. 1999. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION 282, 23 (1999), 2215--2219.
[76]
Stefania De Simone. 2014. Conceptualizing wellbeing in the workplace. International journal of business and social science 5, 12 (2014).
[77]
SQUARE. 2016. 7 Key Factors for Workplace Well-Being. https://squareup.com/us/en/townsquare/7-key-factors-for-workplace-well-being.
[78]
Shanghai Statistics Bureau. 2020. The Salary of Shanghai. http://tjj.sh.gov.cn/tjxw/20200629/fc54a4124e70400098921b6fc5680e1e.html.
[79]
Yuling Sun, Xianghua Ding, Silvia Lindtner, Tun Lu and Ning Gu. 2014. Being senior and ICT: A study of seniors using ICT in China. In Proceedings of the SIGCHI Conference on Human factors in Computing Systems (CHI'2014), 3933--3942.
[80]
Yuling Sun, Xiaojuan Ma, Silvia Lindtner and Liang He. 2023. Data work of Frontline Care Workers: Practices, Problems, and Opportunities in the Context of Data-Driven Long-Term Care. Proceedings of the ACM on Human-Computer Interaction, 7, CSCW1 (2023), 28.
[81]
Prasanna Tambe, Peter Cappelli and Valery Yakubovich. 2019. Artificial intelligence in human resources management: Challenges and a path forward. CALIFORNIA MANAGEMENT REVIEW 61, 4 (2019), 15--42.
[82]
Richard Trenholm. 2021. Coded Bias review: Eye-opening Netflix doc faces racist technology. https://www.cnet.com/news/coded-bias-review-eye-opening-netflix-documentary-faces-up-to-racist-tech/.
[83]
Gemma Webster and Vickil Hanson. 2014. Technology for supporting care staff in residential homes. ACM Transactions on Accessible Computing (TACCESS) 5, 3 (2014), 1--23.
[84]
Zoieshui-yee Wong, Christian N O Hr, Craige Kuziemsky, Eman Leung and Youhuafrank Chen. 2017. Context Sensitive Health Informatics: Delivering 21st Century Healthcare-Building a Quality-and-Efficiency Driven System. In Context Sensitive Health Informatices: Redesigning Healthcare Work, 1--5.
[85]
Qingyu Xu, Yuling Sun and Liang He. 2021. Design Considerations for Information Collaboration in Long-term Senior Care System. In Proceedings of IEEE 24th International Conference on Computer Supported Cooperative Work in Design (CSCWD'2021), IEEE, 1040--1045.
[86]
Bong-min Yang. 2009. The future of health technology assessment in healthcare decision making in Asia. PHARMACOECONOMICS 27, 11 (2009), 891--901.
[87]
Jie Zhou, Yuling Sun and Liang He. 2018. A Data Driven Collaborative Caring Framework for Aging in Place in China. In Proceedings of IEEE 22nd International Conference on Computer Supported Cooperative Work in Design (CSCWD'2018), 359--364.

Cited By

View all
  • (2024)"Come to us first": Centering Community Organizations in Artificial Intelligence for Social Good PartnershipsProceedings of the ACM on Human-Computer Interaction10.1145/36870098:CSCW2(1-28)Online publication date: 8-Nov-2024
  • (2024)The Wand Chooses the IMU - Open Source Hardware for Synchronising Wearables using MagnetometersCompanion of the 2024 on ACM International Joint Conference on Pervasive and Ubiquitous Computing10.1145/3675094.3678485(939-943)Online publication date: 5-Oct-2024
  • (2024)Going Beyond XAI: A Systematic Survey for Explanation-Guided LearningACM Computing Surveys10.1145/364407356:7(1-39)Online publication date: 9-Apr-2024
  • Show More Cited By

Index Terms

  1. Care Workers' Wellbeing in Data-Driven Healthcare Workplace: Identity, Agency, and Social Justice

    Recommendations

    Comments

    Information & Contributors

    Information

    Published In

    cover image Proceedings of the ACM on Human-Computer Interaction
    Proceedings of the ACM on Human-Computer Interaction  Volume 7, Issue CSCW2
    CSCW
    October 2023
    4055 pages
    EISSN:2573-0142
    DOI:10.1145/3626953
    Issue’s Table of Contents
    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].

    Publisher

    Association for Computing Machinery

    New York, NY, United States

    Publication History

    Published: 04 October 2023
    Published in PACMHCI Volume 7, Issue CSCW2

    Permissions

    Request permissions for this article.

    Check for updates

    Author Tags

    1. agency
    2. care worker
    3. caregiving
    4. data-driven technology
    5. identity
    6. social justice
    7. workplace wellbeing

    Qualifiers

    • Research-article

    Funding Sources

    • Open Research Topics for the Key Laboratory of Statistics and Data Science Frontiers Theory and Applications, Ministry of Educationr 2023

    Contributors

    Other Metrics

    Bibliometrics & Citations

    Bibliometrics

    Article Metrics

    • Downloads (Last 12 months)256
    • Downloads (Last 6 weeks)19
    Reflects downloads up to 27 Jan 2025

    Other Metrics

    Citations

    Cited By

    View all
    • (2024)"Come to us first": Centering Community Organizations in Artificial Intelligence for Social Good PartnershipsProceedings of the ACM on Human-Computer Interaction10.1145/36870098:CSCW2(1-28)Online publication date: 8-Nov-2024
    • (2024)The Wand Chooses the IMU - Open Source Hardware for Synchronising Wearables using MagnetometersCompanion of the 2024 on ACM International Joint Conference on Pervasive and Ubiquitous Computing10.1145/3675094.3678485(939-943)Online publication date: 5-Oct-2024
    • (2024)Going Beyond XAI: A Systematic Survey for Explanation-Guided LearningACM Computing Surveys10.1145/364407356:7(1-39)Online publication date: 9-Apr-2024
    • (2024)Squeeze and Slide: Real-time continuous self-reports with physiological arousal to evaluate emotional engagement in short films of contemporary danceExtended Abstracts of the CHI Conference on Human Factors in Computing Systems10.1145/3613905.3651886(1-7)Online publication date: 11-May-2024
    • (2024)Data Storytelling in Data Visualisation: Does it Enhance the Efficiency and Effectiveness of Information Retrieval and Insights Comprehension?Proceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3643022(1-21)Online publication date: 11-May-2024
    • (2024)Unpacking ICT-supported Social Connections and Support of Late-life Migration: From the Lens of Social ConvoysProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642898(1-15)Online publication date: 11-May-2024
    • (2024)Chinese Elderly Healthcare-Oriented Conversation: CareQA Dataset and Its Knowledge Distillation Based Generation Framework2024 IEEE International Conference on Bioinformatics and Biomedicine (BIBM)10.1109/BIBM62325.2024.10822408(3866-3871)Online publication date: 3-Dec-2024

    View Options

    Login options

    Full Access

    View options

    PDF

    View or Download as a PDF file.

    PDF

    eReader

    View online with eReader.

    eReader

    Figures

    Tables

    Media

    Share

    Share

    Share this Publication link

    Share on social media