research-article

Harvesting Caregiving Knowledge: Design Considerations for Integrating Volunteer Input in Dementia Care

Authors:

Shengdong Zhao,

Joseph Jay WilliamsAuthors Info & Claims

CHI '18: Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems

Paper No.: 79, Pages 1 - 12

https://doi.org/10.1145/3173574.3173653

Published: 19 April 2018 Publication History

Abstract

Improving volunteer performance leads to better caregiving in dementia care settings. However, caregiving knowledge systems have been focused on eliciting and sharing expert, primary caregiver knowledge, rather than volunteer-provided knowledge. Through the use of an experience prototype, we explored the content of volunteer caregiver knowledge and identified ways in which such non-expert knowledge can be useful to dementia care. By using lay language, sharing information specific to the client and collaboratively finding strategies for interaction, volunteers were able to boost the effectiveness of future volunteers. Therapists who reviewed the content affirmed the reliability of volunteer caregiver knowledge and placed value on its recency, variety and its ability to help bridge language and professional barriers. We discuss how future systems designed for eliciting and sharing volunteer caregiver knowledge can be used to promote better dementia care.

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[1]

Ofra Amir, Barbara J. Grosz, Krzysztof Z. Gajos, Sonja M. Swenson, and Lee M. Sanders. 2015. From Care Plans to Care Coordination: Opportunities for Computer Support of Teamwork in Complex Healthcare. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems (CHI '15), 1419--1428.

Digital Library

[2]

Virginia Braun and Victoria Clarke. 2006. Using thematic analysis in psychology. Qualitative Research in Psychology 3, 2: 77--101.

[3]

Rob Brennan. Volunteering in care homes - Knowhow Nonprofit. Retrieved August 1, 2017 from https://knowhownonprofit.org/people/volunteers-andyour-organisation/volunteering-in-care-homes

[4]

Marion Buchenau and Jane Fulton Suri. 2000. Experience Prototyping. In Proceedings of the 3rd Conference on Designing Interactive Systems: Processes, Practices, Methods, and Techniques (DIS '00), 424--433.

Digital Library

[5]

John Champaign, Robin Cohen, and Disney Yan Lam. 2015. Empowering Patients and Caregivers to Manage Healthcare Via Streamlined Presentation of Web Objects Selected by Modeling Learning Benefits Obtained by Similar Peers. ACM Trans. Intell. Syst. Technol. 6, 4: 54:1--54:41.

Digital Library

[6]

Jenny C. C. Chung. 2009. An intergenerational reminiscence programme for older adults with early dementia and youth volunteers: values and challenges. Scandinavian Journal of Caring Sciences 23, 2: 259-- 264.

[7]

Tira Cohene, Ron Baecker, and Elsa Marziali. 2005. Designing Interactive Life Story Multimedia for a Family Affected by Alzheimer's Disease: A Case Study. In CHI '05 Extended Abstracts on Human Factors in Computing Systems (CHI EA '05), 1300-- 1303.

Digital Library

[8]

Masashi Crete-Nishihata, Ronald M. Baecker, Michael Massimi, Deborah Ptak, Rachelle Campigotto, Liam D. Kaufman, Adam M. Brickman, Gary R. Turner, Joshua R. Steinerman, and Sandra E. Black. 2012. Reconstructing the Past: Personal Memory Technologies Are Not Just Personal and Not Just for Memory. Human-Computer Interaction 27, 1--2: 92-- 123.

[9]

Thecla Damianakis. 2007. Volunteers' experiences visiting the cognitively impaired in nursing homes: a friendly visiting program. Canadian Journal on Aging = La Revue Canadienne Du Vieillissement 26, 4: 343-- 356.

[10]

Brian DeRenzi, Nicola Dell, Jeremy Wacksman, Scott Lee, and Neal Lesh. 2017. Supporting Community Health Workers in India Through Voice- and WebBased Feedback. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (CHI '17), 2770--2781.

Digital Library

[11]

Lorraine T. Dorfman, Susan A. Murty, Jerry G. Ingram, Ronnie J. Evans, and James R. Power. 2004. Intergenerational Service-Learning in Five Cohorts of Students: Is Attitude Change Robust? Educational Gerontology 30, 1: 39--55.

[12]

Paul P. Falkowski. 2013. Volunteer programming impact on long-term care facilities. Thesis. Retrieved December 27, 2015 from http://digitalcommons.unl.edu/cehsdiss/169/

[13]

Pin Sym Foong and Shengdong Zhao. 2016. Design Considerations for Volunteer Support in Dementia Care. In Proceedings of the International Symposium on Interactive Technology and Ageing Populations (ITAP '16), 54--63.

Digital Library

[14]

Laura N. Gitlin, Laraine Winter, Tracey Vause Earland, E. Adel Herge, Nancy L. Chernett, Catherine V. Piersol, and Janice P. Burke. 2009. The Tailored Activity Program to Reduce Behavioral Symptoms in Individuals With Dementia: Feasibility, Acceptability, and Replication Potential. The Gerontologist 49, 3: 428--439.

[15]

Human Resources and Skills Development Canada Government of Canada. 2015. Report of the National Seniors Council on Volunteering Among Seniors and Positive and Active Aging - Overview of Volunteering Among Canadian Seniors. Retrieved December 27, 2015 from http://www.seniorscouncil.gc.ca/eng/research_publicat ions/volunteering/page07.shtml

[16]

Gary Gowans, Jim Campbell, Norm Alm, Richard Dye, Arlene Astell, and Maggie Ellis. 2004. Designing a Multimedia Conversation Aid for Reminiscence Therapy in Dementia Care Environments. In CHI '04 Extended Abstracts on Human Factors in Computing Systems (CHI EA '04), 825--836.

Digital Library

[17]

Sara Raquel Costa Guerra, Sara Holtum Demain, Daniela Maria Pias Figueiredo, and Liliana Xavier Marques De Sousa. 2012. Being a Volunteer: Motivations, Fears, and Benefits of Volunteering in an Intervention Program for People With Dementia and Their Families. Activities, Adaptation & Aging 36, 1: 55--78.

[18]

Xinning Gui, Yu Chen, Yubo Kou, Katie Pine, and Yunan Chen. 2017. Investigating Support Seeking from Peers for Pregnancy in Online Health Communities. Proc. ACM Hum.-Comput. Interact. 1, CSCW: 50:1--50:19.

Digital Library

[19]

Barbara J. Harmer and Martin Orrell. 2008. What is meaningful activity for people with dementia living in care homes? A comparison of the views of older people with dementia, staff and family carers. Aging & Mental Health 12, 5: 548--558.

[20]

Sharon K. Holmberg. 1997. A walking program for wanderers: Volunteer training and development of an evening walker's group. Geriatric Nursing 18, 4: 160-- 165.

[21]

Maia L. Jacobs, James Clawson, and Elizabeth D. Mynatt. 2015. Comparing Health Information Sharing Preferences of Cancer Patients, Doctors, and Navigators. In Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing (CSCW '15), 808--818.

Digital Library

[22]

Wallis Jansson, Britt Almberg, Margareta Grafström, and Bengt Winblad. 1998. The Circle Model-support for relatives of people with dementia. International Journal of Geriatric Psychiatry 13, 10: 674--681.

[23]

Annemarie Jost, Eva Neumann, and K.-H. Himmelmann. 2010. Synchronized Communication Between People with Dementia and their Volunteer Caregivers. A Video-Based Explorative Study on Temporal Aspects of Interaction and the Transfer to Education. Current Alzheimer Research 7, 5: 439--444.

[24]

Ann Kolanowski and Linda Buettner. 2008. Prescribing Activities that Engage Passive Residents. An Innovative Method. Journal of gerontological nursing 34, 1: 13--18.

[25]

Ee Heok Kua, Emily Ho, Hong Hee Tan, Chris Tsoi, Christabel Thng, and Rathi Mahendran. 2014. The natural history of dementia. Psychogeriatrics: The Official Journal of the Japanese Psychogeriatric Society 14, 3: 196--201.

[26]

Hildy S. Lipner, Jenine Bosler, and Gloria Giles. 1990. Volunteer participation in feeding residents: training and supervision in a long-term care facility. Dysphagia 5, 2: 89--95.

[27]

João Martins, José Carilho, Oliver Schnell, Carlos Duarte, Francisco M. Couto, Luís Carriço, and Tiago Guerreiro. 2014. Friendsourcing the Unmet Needs of People with Dementia. In Proceedings of the 11th Web for All Conference (W4A '14), 35:1--35:4.

Digital Library

[28]

David Merritt, Jasmine Jones, Mark S. Ackerman, and Walter S. Lasecki. 2017. Kurator: Using The Crowd to Help Families With Personal Curation Tasks. 1835-- 1849.

Digital Library

[29]

Maletsabisa Molapo, Melissa Densmore, and Limpho Morie. 2016. Apps and Skits: Enabling New Forms of Village-To-Clinic Feedback for Rural Health Education. In Proceedings of the 7th Annual Symposium on Computing for Development (ACM DEV '16), 10:1--10:10.

Digital Library

[30]

Joseph Nagel, Peter Cimbolic, and Margie Newlin. 1988. Efficacy of elderly and adolescent volunteer counselors in a nursing home setting. Journal of counseling Psychology 35, 1: 81.

[31]

Olle Söderhamn, Ulrika Söderhamn, Landmark, Aasgaard, and Hilde Eide. 2012. Volunteering in dementia care -- a Norwegian phenomenological study. Journal of Multidisciplinary Healthcare: 61.

[32]

Graham Stokes. 1996. Challenging behaviour in dementia: A psychological approach. In Handbook of the Clinical Psychology of Aging, R.T. Woods (ed.). Wiley Publishing, Chichester, 601--628.

[33]

Jayne Wallace, Anja Thieme, Gavin Wood, Guy Schofield, and Patrick Olivier. 2012. Enabling Self, Intimacy and a Sense of Home in Dementia: An Enquiry into Design in a Hospital Setting. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '12), 2629--2638.

Digital Library

[34]

Gemma Webster and Vicki L. Hanson. 2014. Technology for Supporting Care Staff in Residential Homes. ACM Trans. Access. Comput. 5, 3: 8:1--8:23.

Digital Library

[35]

Haoqi Zhang, Edith Law, Rob Miller, Krzysztof Gajos, David Parkes, and Eric Horvitz. 2012. Human computation tasks with global constraints. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, 217--226. Retrieved September 18, 2017 from http://dl.acm.org/citation.cfm?id=2207708

Digital Library

[36]

Community Health Workers. Retrieved December 30, 2017 from https://www.apha.org/aphacommunities/member-sections/community-healthworkers

[37]

NVPC | Individual Giving Survey (2012). Retrieved December 30, 2015 from http://knowledge.nvpc.org.sg/individual-givingsurvey-2012/

[38]

Volunteering in the United States News Release. Retrieved September 18, 2017 from https://www.bls.gov/news.release/volun.htm

[39]

MAXQDA: Qualitative Data Analysis Software | Windows & Mac. MAXQDA - The Art of Data Analysis. Retrieved September 14, 2017 from http://www.maxqda.com/

Cited By

Soares LKettley S(2024)The Ripple Framework: Co-Producing Social, Cultural, and Economic Value in Care Through a Generative and Relational ApproachInternational Journal of Environmental Research and Public Health10.3390/ijerph2111152121:11(1521)Online publication date: 15-Nov-2024
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Cherian JRay SMernar TTaele PMach HKoh JYe PHammond T(2024)A Step Toward Better Care: Understanding What Caregivers and Residents in Assisted Living Facilities Value in Health Monitoring SystemsProceedings of the ACM on Human-Computer Interaction10.1145/36372908:CSCW1(1-29)Online publication date: 26-Apr-2024
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Ibrahim ZKarimi PMartin-Hammond AHarrington CSiek K(2024)What Do We Do? Lessons Learned from Conducting Systematic Reviews to Improve HCI DisseminationExtended Abstracts of the CHI Conference on Human Factors in Computing Systems10.1145/3613905.3637117(1-8)Online publication date: 11-May-2024
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Index Terms

Harvesting Caregiving Knowledge: Design Considerations for Integrating Volunteer Input in Dementia Care
1. Human-centered computing

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cover image ACM Conferences

CHI '18: Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems

April 2018

8489 pages

ISBN:9781450356206

DOI:10.1145/3173574

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Regan Mandryk
University of Saskatchewan, Canada
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University of Waterloo, Canada
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Mark Perry
Brunel University London, UK
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University College London, UK

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Published: 19 April 2018

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CHI '18 Paper Acceptance Rate 666 of 2,590 submissions, 26%;

Overall Acceptance Rate 6,199 of 26,314 submissions, 24%

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Cited By

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https://doi.org/10.3390/ijerph21111521
Cherian JRay SMernar TTaele PMach HKoh JYe PHammond T(2024)A Step Toward Better Care: Understanding What Caregivers and Residents in Assisted Living Facilities Value in Health Monitoring SystemsProceedings of the ACM on Human-Computer Interaction10.1145/36372908:CSCW1(1-29)Online publication date: 26-Apr-2024
https://dl.acm.org/doi/10.1145/3637290
Ibrahim ZKarimi PMartin-Hammond AHarrington CSiek K(2024)What Do We Do? Lessons Learned from Conducting Systematic Reviews to Improve HCI DisseminationExtended Abstracts of the CHI Conference on Human Factors in Computing Systems10.1145/3613905.3637117(1-8)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613905.3637117
Vidas DThompson ZKelly RWaycott JTamplin JVieira Sousa TKulik LLampit ALautenschlager NBaker F(2024)Family Caregiver Experiences of Using a Mobile App for Music-based Training to Support Dementia CareProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642308(1-16)Online publication date: 11-May-2024
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Petterson AJaimes Rodriguez IDoggett OChandra P(2024)Networks of care in digital domestic labour economiesProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642200(1-16)Online publication date: 11-May-2024
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Sun YMa XLindtner SHe L(2023)Data Work of Frontline Care Workers: Practices, Problems, and Opportunities in the Context of Data-Driven Long-Term CareProceedings of the ACM on Human-Computer Interaction10.1145/35794757:CSCW1(1-28)Online publication date: 16-Apr-2023
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Hodge JFoley SLambton-Howard DBooi LMontague KCoulter SKirk DMorrissey K(2023)Exploring Participants’ Representations and Shifting Sensitivities in a Hackathon for DementiaACM Transactions on Computer-Human Interaction10.1145/357181430:3(1-35)Online publication date: 10-Jun-2023
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Zhao WKelly RWaycott J(2023)Technology Deployment for Social Connection in Residential Aged Care: Care and Technology Providers' Experiences During the COVID-19 PandemicExtended Abstracts of the 2023 CHI Conference on Human Factors in Computing Systems10.1145/3544549.3585662(1-7)Online publication date: 19-Apr-2023
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Thach KLederman RWaycott J(2023)Key Considerations for The Design of Technology for Enrichment in Residential Aged Care: An Ethnographic StudyProceedings of the 2023 CHI Conference on Human Factors in Computing Systems10.1145/3544548.3581176(1-16)Online publication date: 19-Apr-2023
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Li LArnold VPiper A(2023)“Any bit of help, helps”: Understanding how older caregivers use carework platforms for caregiving supportProceedings of the 2023 CHI Conference on Human Factors in Computing Systems10.1145/3544548.3580659(1-17)Online publication date: 19-Apr-2023
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