Emotion Work in Caregiving: The Role of Technology to Support Informal Caregivers of Persons Living With Dementia

被引:3
作者
Smriti D. [1 ]
Wang L. [2 ]
Huh-Yoo J. [2 ]
机构
[1] Drexel University, 3675 Market St, Philadelphia, 19104, PA
[2] Drexel University, Philadelphia
基金
美国国家科学基金会;
关键词
Alzheimer's; Dementia; Emotion Work; Family Caregivers; Informal Caregivers; Technology;
D O I
10.1145/3637325
中图分类号
学科分类号
摘要
The 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 caregivers of Persons Living With Dementia (PLWD) to understand their needs and current coping strategies for overcoming caregiving burden, specifically around emotion work. The caregivers associated different personal meanings with caregiving. Participants wanted technology to take over some of the utilitarian, mundane caregiving tasks. At the same time, they did not want technology to take over the tasks that fostered personal connections with PLWD. As the disease progressed, caregivers started to lose their perceived bond with PLWD, making it more challenging to juggle between rewarding, positive emotions with negative experiences. We discuss such complexity of emotion work using the notion of Invisible Work to understand when technology should or should not support the emotion work engaged in informal caregiving. © 2024 Copyright held by the owner/author(s). Publication rights licensed to ACM.
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共 109 条
[21]  
Cristancho-Lacroix V., Wrobel J., Cantegreil-Kallen I., Dub T., Rouquette A., Rigaud A.-S., Et al., 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)
[22]  
de Jong M., Stara V., von Dollen V., Bolliger D., Heerink M., Evers V., Users requirements in the design of a virtual agent for patients with dementia and their caregivers, Proceedings of the 4th EAI International Conference on Smart Objects and Technologies for Social Good, pp. 136-141, (2018)
[23]  
Devendorf L., Andersen K., Kelliher A., Making design memoirs: Understanding and honoring difficult experiences, Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems, pp. 1-12, (2020)
[24]  
Dixon E., Michaels R., Xiao X., Zhong Y., Clary P., Narayanan A., Brewer R.N., Lazar A., Mobile Phone Use by People with Mild to Moderate Dementia: Uncovering Challenges and Identifying Opportunities: Mobile Phone Use by People with Mild to Moderate Dementia, Proceedings of the 24th International ACM SIGACCESS Conference on Computers and Accessibility, pp. 1-16, (2022)
[25]  
Donelan K., Hill C.A., Hoffman C., Scoles K., Feldman P.H., Levine C., Gould D., Challenged to care: Informal caregivers in a changing health system, Health affairs, 21, 4, pp. 222-231, (2002)
[26]  
Ducharme F., Dube V., Levesque L., Saulnier D., Giroux F., An online stress management training program as a supportive nursing intervention for family caregivers of an elderly person, Canadian Journal of Nursing Informatics, 6, 2, pp. 1-19, (2011)
[27]  
Foley S., Pantidi N., McCarthy J., Care and design: An ethnography of mutual recognition in the context of advanced dementia, Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems, pp. 1-15, (2019)
[28]  
Gabe J., Key Concepts in Medical Sociology Jonathan Gabe, Michael Bury, Mary Ann Elston SAGE. SAGE, pp. 4-10, (2004)
[29]  
Ghafurian M., Hoey J., Dautenhahn K., Social robots for the care of persons with dementia: A systematic review, ACM Transactions on Human-Robot Interaction (THRI), 10, 4, pp. 1-31, (2021)
[30]  
Gibson A.K., Anderson K.A., Acocks S., Exploring the service and support needs of families with early-onset Alzheimer's disease, American Journal of Alzheimer's Disease & Other Dementias®, 29, 7, pp. 596-600, (2014)