ABSTRACT
Informal or family caregivers receive no professional training and are overburdened. The CSCW community has increasingly examined ways to support informal caregivers. However, the solutions have primarily focused on managing the negative emotions of informal caregivers. Informal caregivers go through a range of emotional experiences, which are often invisible to others. In this work, we aim to use the context of informal caregiving needs and experiences to understand how we can design future Artificial Intelligence (AI) systems for supporting emotion work. We conducted user studies and interviews to understand what informal caregivers perceive as emotion work in two caregiving contexts: parenting and Alzheimer’s Disease and Related Dementias (ADRD). Based on the findings, we propose a framework for generating design requirements for AI systems that support emotion work. Our work contributes to how we can design AI to support people’s practices that involve emotion work.
- Shiroq Al-Megren, Khalid Majrashi, and Ragad Mohammad Allwihan. 2021. ” The Dementia Diva Strikes Again!”: A Thematic Analysis of How Informal Carers of Persons with Dementia Use TikTok. In Adjunct Publication of the 23rd International Conference on Mobile Human-Computer Interaction. 1–6.Google Scholar
- Muhammad Aledeh and Prince Habib Adam. 2020. Caring for dementia caregivers in times of the COVID-19 crisis: A systematic review. American Journal of Nursing Research 8, 5 (2020), 552–561.Google ScholarCross Ref
- Pierre Bourdieu. 1977. Outline of a Theory of Practice. Number 16. Cambridge university press.Google Scholar
- Malaz Boustani, Cathy Schubert, and Youcef Sennour. 2007. The challenge of supporting care for dementia in primary care. Clinical interventions in aging 2, 4 (2007), 631.Google Scholar
- Virginia Braun and Victoria Clarke. 2012. Thematic analysis.American Psychological Association.Google Scholar
- Yunan Chen, Victor Ngo, and Sun Young Park. 2013. Caring for caregivers: designing for integrality. In Proceedings of the 2013 conference on Computer supported cooperative work. 91–102.Google ScholarDigital Library
- Carole A Cohen, Angela Colantonio, and Lee Vernich. 2002. Positive aspects of caregiving: rounding out the caregiver experience. International journal of geriatric psychiatry 17, 2 (2002), 184–188.Google ScholarCross Ref
- Marci D Cottingham and Rebecca J Erickson. 2020. The promise of emotion practice: At the bedside and beyond. Work and Occupations 47, 2 (2020), 173–199.Google ScholarCross Ref
- Victoria Cristancho-Lacroix, Jérémy Wrobel, Inge Cantegreil-Kallen, Timothée Dub, Alexandra Rouquette, Anne-Sophie Rigaud, 2015. A web-based psychoeducational program for informal caregivers of patients with Alzheimer’s disease: a pilot randomized controlled trial. Journal of medical Internet research 17, 5 (2015), e3717.Google ScholarCross Ref
- Sara J Czaja, David Loewenstein, Richard Schulz, Sankaran N Nair, and Dolores Perdomo. 2013. A videophone psychosocial intervention for dementia caregivers. The American Journal of Geriatric Psychiatry 21, 11 (2013), 1071–1081.Google ScholarCross Ref
- Michiel de Jong, Vera Stara, Viviane von Döllen, Daniel Bolliger, Marcel Heerink, and Vanessa Evers. 2018. Users requirements in the design of a virtual agent for patients with dementia and their caregivers. In Proceedings of the 4th EAI International Conference on Smart Objects and Technologies for Social Good. 136–141.Google ScholarDigital Library
- Karen Donelan, Craig A Hill, Catherine Hoffman, Kimberly Scoles, Penny Hollander Feldman, Carol Levine, and David Gould. 2002. Challenged to care: Informal caregivers in a changing health system. Health affairs 21, 4 (2002), 222–231.Google Scholar
- Rebecca J Erickson and Wendy JC Grove. 2008. Emotional labor and health care. Sociology Compass 2, 2 (2008), 704–733.Google ScholarCross Ref
- Judith R Gant, Ann M Steffen, and Sean A Lauderdale. 2007. Comparative outcomes of two distance-based interventions for male caregivers of family members with dementia. American Journal of Alzheimer’s Disease & Other Dementias® 22, 2 (2007), 120–128.Google Scholar
- Kyler M Godwin, Whitney L Mills, Jane A Anderson, and Mark E Kunik. 2013. Technology-driven interventions for caregivers of persons with dementia: a systematic review. American Journal of Alzheimer’s Disease & Other Dementias® 28, 3 (2013), 216–222.Google ScholarCross Ref
- André Hajek, Christian Brettschneider, Annette Ernst, Tina Posselt, Birgitt Wiese, Jana Prokein, Siegfried Weyerer, Jochen Werle, Angela Fuchs, Michael Pentzek, 2016. Longitudinal predictors of informal and formal caregiving time in community-dwelling dementia patients. Social psychiatry and psychiatric epidemiology 51 (2016), 607–616.Google Scholar
- Kirstie Hawkey, Kori M Inkpen, Kenneth Rockwood, Michael McAllister, and Jacob Slonim. 2005. Requirements gathering with alzheimer’s patients and caregivers. In Proceedings of the 7th international ACM SIGACCESS conference on Computers and accessibility. 142–149.Google ScholarDigital Library
- Arlie R Hochschild. 1983. The managed heart. Berkeley.Google Scholar
- Karen Holtzblatt and Hugh Beyer. 1997. Contextual design: defining customer-centered systems. Elsevier.Google Scholar
- Nam Tung Ly, Audrey Serna, Samir Aknine, and Jörn Hurtienne. 2016. Towards supporting caregivers to monitor the whereabouts of people with dementia. In Proceedings of the 9th Nordic Conference on Human-Computer Interaction. 1–4.Google ScholarDigital Library
- Sanika Moharana, Alejandro E Panduro, Hee Rin Lee, and Laurel D Riek. 2019. Robots for joy, robots for sorrow: community based robot design for dementia caregivers. In 2019 14th ACM/IEEE International Conference on Human-Robot Interaction (HRI). IEEE, 458–467.Google ScholarCross Ref
- René F Navarro and Jesús Favela. 2011. Usability assessment of a pervasive system to assist caregivers in dealing with repetitive behaviors of patients with dementia. In Proceedings of the 4th International Conference on PErvasive Technologies Related to Assistive Environments. 1–8.Google ScholarDigital Library
- Rebecca Eileen Olson. 2011. Managing hope, denial or temporal anomie? Informal cancer carers’ accounts of spouses’ cancer diagnoses. Social Science & Medicine 73, 6 (2011), 904–911.Google ScholarCross Ref
- Shelley Peacock, Dorothy Forbes, Maureen Markle-Reid, Pamela Hawranik, Debra Morgan, Lynn Jansen, Beverly D Leipert, and Sandra R Henderson. 2010. The positive aspects of the caregiving journey with dementia: Using a strengths-based perspective to reveal opportunities. Journal of Applied Gerontology 29, 5 (2010), 640–659.Google ScholarCross Ref
- Debra Sanders and Dorette Sugg Welk. 2005. Strategies to scaffold student learning: Applying Vygotsky’s zone of proximal development. Nurse educator 30, 5 (2005), 203–207.Google ScholarCross Ref
- Diva Smriti, Tsui-Sui Annie Kao, Rahil Rathod, Ji Youn Shin, Wei Peng, Jake Williams, Munif Ishad Mujib, Meghan Colosimo, Jina Huh-Yoo, 2022. Motivational Interviewing Conversational Agent for Parents as Proxies for Their Children in Healthy Eating: Development and User Testing. JMIR Human Factors 9, 4 (2022), e38908.Google ScholarCross Ref
- Clay Spinuzzi. 2005. The methodology of participatory design. Technical communication 52, 2 (2005), 163–174.Google Scholar
- Vimal Sriram, Crispin Jenkinson, and Michele Peters. 2019. Informal carers’ experience of assistive technology use in dementia care at home: a systematic review. BMC geriatrics 19, 1 (2019), 1–25.Google Scholar
- Susan Leigh Star and Anselm Strauss. 1999. Layers of silence, arenas of voice: The ecology of visible and invisible work. Computer supported cooperative work (CSCW) 8, 1 (1999), 9–30.Google ScholarDigital Library
- Elizabeth Stowell, Yixuan Zhang, Carmen Castaneda-Sceppa, Margie Lachman, and Andrea G Parker. 2019. Caring for Alzheimer’s disease caregivers: A qualitative study investigating opportunities for exergame innovation. Proceedings of the ACM on Human-Computer Interaction 3, CSCW (2019), 1–27.Google ScholarDigital Library
- Anselm Strauss and Juliet Corbin. 1994. Grounded theory methodology. Handbook of qualitative research 17, 1 (1994), 273–285.Google Scholar
- Charlotte Tang, Yunan Chen, Karen Cheng, Victor Ngo, and John E Mattison. 2018. Awareness and handoffs in home care: coordination among informal caregivers. Behaviour & Information Technology 37, 1 (2018), 66–86.Google ScholarCross Ref
- Carol Thomas, Sara M Morris, and Juliet C Harman. 2002. Companions through cancer:: the care given by informal carers in cancer contexts. Social science & medicine 54, 4 (2002), 529–544.Google ScholarCross Ref
- M Torkamani, L McDonald, AI Saez, C Kanios, M Katsanou, L Madeley, PD Limousin, AJ Lees, M Haritou, and M Jahanshahi. 2014. ALADDIN Collaborative Group. A randomized controlled pilot study to evaluate a technology platform for the assisted living of people with dementia and their carers. J Alzheimers Dis 41, 2 (2014), 515–523.Google ScholarCross Ref
- Timothy J Vogus, Allison S Gabriel, and Laura E McClelland. 2020. The social context of caregiving work in health care: Pushing conceptual and methodological frontiers. Work and Occupations 47, 2 (2020), 123–143.Google ScholarCross Ref
- Amy Waller, Sophie Dilworth, Elise Mansfield, and Rob Sanson-Fisher. 2017. Computer and telephone delivered interventions to support caregivers of people with dementia: a systematic review of research output and quality. BMC geriatrics 17, 1 (2017), 1–20.Google Scholar
- Tamara Zubatiy, Kayci L Vickers, Niharika Mathur, and Elizabeth D Mynatt. 2021. Empowering dyads of older adults with mild cognitive impairment and their care partners using conversational agents. In Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems. 1–15.Google ScholarDigital Library
Index Terms
- Bringing Emotions into Practice: A Framework for AI Design to Support Emotion Work
Recommendations
Bringing Emotions into Practice: The Role of AI in Supporting Emotional Work in Informal Caregiving
DIS '23 Companion: Companion Publication of the 2023 ACM Designing Interactive Systems ConferenceThe demanding nature of informal caregiving has negative consequences on caregivers’ emotional and physical health. HCI community has increasingly examined ways to support caregivers, but the solutions mostly focus on the negative emotions of ...
Emotion Work in Caregiving: The Role of Technology to Support Informal Caregivers of Persons Living With Dementia
CSCWThe CSCW and HCI community has increasingly examined ways to support informal caregivers through technology, given the increasing burden and its consequences on caregivers' emotional and physical health. In this paper, we interviewed 12 informal ...
Emotion Work in Experience-Centered Design
CHI '19: Proceedings of the 2019 CHI Conference on Human Factors in Computing SystemsExperience Centered Design (ECD) implores us to develop empathic relationships and understanding of participants, to actively work with our senses and emotions within the design process. However, theories of experience-centered design do little to ...
Comments