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Translating social support practices into online services for family caregivers

Published: 10 May 2009 Publication History

Abstract

The aim of our ongoing research project is to design a platform for family caregivers to help them cope with the burden of daily caregiving. With a view to designing relevant information and communication services, we analyzed the social support practices observed among the members of a group of caregivers, whose spouses were suffering from Alzheimer's disease. Based on interviews and a field survey, we characterized this collective and identified the caregivers' latent and expressed needs. Our approach consists in linking these needs to naturally occurring situations in order to translate them into meaningful functionalities.

References

[1]
Atifi H., Mandelcwajg S., Marcoccia M. 2007. Diasporas et Internet : analyse interactionnelle contrastive de forums de discussion communautaires. In Cooperation and conflict in ingroup and intergroup communication. Selected Papers from the XthBiennal Congress of the IADA, L. Ionescu-Ruxandoiu (Ed.) (Bucharest 2005), Bucharest, Editura Universitatii din Bucuresti, 373--384.
[2]
Barnes, M.K. and Duck, S. 1994. Everyday communicative contexts for social support. In Communication of social support: Messages, interactions, relationships and community, B. R. Burleson, T. L. Albrecht & I. G. Sarason (Eds.). Thousand Oaks: Sage. 175--194.
[3]
Becker H., 1963. Outsiders. Glencoe, The free Press.
[4]
Bercot R. 2003. Le vécu du conjoint. Paris: Eres.
[5]
Bers, M. U., Gonzalez-Heydrich, J., and DeMaso, D. R. 2001. Identity construction environments: supporting a virtual therapeutic community of pediatric patients undergoing dialysis. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (Seattle, Washington, United States). CHI '01. ACM, New York, NY, 380--387. DOI= http://doi.acm.org/10.1145/365024.365302
[6]
Blake, E. 2007. Information and social support for semi-literate people living with HIV. interactions 14, 5 (Sep. 2007), 29--32. DOI= http://doi.acm.org/10.1145/1288515.1288535
[7]
Callon M., 1986. Éléments pour une sociologie de la traduction. La domestication des coquilles Saint-Jacques dans la Baie de Saint-Brieuc. L'année sociologique, 36, 169--208.
[8]
Carroll, J.M. (1998). Minimalism beyond the Nurnberg Funnel. Cambridge, MA: MIT Press.
[9]
Cheng L., Stone L., Farnham S., Clark A.M., Zaner M. 2000. HutchWorld: Lessons Learned-A Collaborative Project: Fred Hutchsinson Cancer Research Center & Microsoft Research. In Proceedings of Virtual Worlds, Second International Conference (Paris, France, July 5-7, 2000). VW 2000. Springer, 12--23.
[10]
Cohendet, P., Creplet F., Dupouet, O., 2001. Organisational innovation, Communities of Practice and Epistemic Communities: the Case of Linux. In: Kirman A., Zimmermann, J.B. (Eds.), Economics with Heterogeneous Interacting Agents. Berlin: springer-verlag, 303--326.
[11]
Creeger, M. 2006. Better health care through technology. Queue 4, 9 (Nov. 2006), 13--15. DOI= http://doi.acm.org/10.1145/1180176.1180186
[12]
Dannecker A. and Lechner U. 2007. Online and Offline Integration in Virtual Communities of Patients - an Empirical Analysis. In Proceedings of the Third Communities and Technologies Conference (Michigan State University, USA, June 28-30, 2007) C&T 2007. Springer, 151--170.
[13]
Durkheim E., 1893. De la division du travail social. Paris, Alcan.
[14]
Goffman, E. (1981). Forms of talk. Oxford, Basil Blackwell.
[15]
Granovetter M., 1973. The Strength of Weak Ties. American Journal of Sociology. 78, 6 (May 1973), 1360--1380.
[16]
Grimes, A., Bednar, M., Bolter, J. D., and Grinter, R. E. 2008. EatWell: sharing nutrition-related memories in a low-income community. In Proceedings of the ACM 2008 Conference on Computer Supported Cooperative Work (San Diego, CA, USA, November 08 - 12, 2008). CSCW '08. ACM, New York, NY, 87--96. DOI= http://doi.acm.org/10.1145/1460563.1460579
[17]
Gustafson D.H. and coll., "CHESS: 10 years of research and development in consumer health informatics for broad populations, including the underserved," International Journal of Medical Informatics, vol. 65, 2002, pp. 169 -- 177.
[18]
Hawkey, K., Inkpen, K. M., Rockwood, K., McAllister, M., and Slonim, J. 2005. Requirements gathering with alzheimer's patients and caregivers. In Proceedings of the 7th international ACM SIGACCESS Conference on Computers and Accessibility (Baltimore, MD, USA, October 09 - 12, 2005). Assets '05. ACM, New York, NY, 142--149. DOI= http://doi.acm.org/10.1145/1090785.1090812
[19]
Huysman M. and Wulf V. 2006. IT to support knowledge sharing in communities, towards a social capital analysis. Journal of Information Technology, 21, 1 (Feb. 2006), 40--51.
[20]
IFOP, 2008. Etude nationale "Connaître les aidants et leurs attentes". http://www.aveclesaidants.fr/index.php?rub=alaune&ssrub=enbref&lid=522#contenu
[21]
Jeong, H., Park, S., and Zimmerman, J. 2008. Opportunities to support parents in managing their children's health. In CHI '08 Extended Abstracts on Human Factors in Computing Systems (Florence, Italy, April 05 - 10, 2008). CHI '08. ACM, New York, NY, 3225--3230. DOI= http://doi.acm.org/10.1145/1358628.1358835
[22]
Johnson, G. J. and Ambrose, P. J. 2006. Neo-tribes: the power and potential of online communities in health care. Commun. ACM 49, 1 (Jan. 2006), 107--113. DOI= http://doi.acm.org/10.1145/1107458.1107463
[23]
Josefsson U. 2003. Patients' Online Communities Experiences of Emergent Swedish Self-help on the Internet. Proceedings of the First International Conference on Communities and Technologies (Amsterdam, Netherlands, September 21-23, 2003) C&T2003. Springer 369--390.
[24]
Kenny, P., Parsons, T., Gratch, J., and Rizzo, A. 2008. Virtual humans for assisted health care. In Proceedings of the 1st international Conference on Pervasive Technologies Related To Assistive Environments (Athens, Greece, July 16 - 18, 2008). PETRA '08, vol. 282. ACM, New York, NY, 1--4. DOI= http://doi.acm.org/10.1145/1389586.1389594
[25]
Leimeister J. M. and Krcmar H. Acceptance and Utility of a Systematically Designed Virtual Community for Cancer Patients. Proceedings of the Second Communities and Technologies Conference, Milano 2005 p129--149
[26]
Lewkowicz M., Marcoccia M., Atifi H., Bénel A., Gaglio G., Gauducheau N. and Tixier M. Online Social Support: Benefits of an Interdisciplinary Approach for Studying and Designing Cooperative Computer-Mediated Solutions. Proceedings of the 8th Conference on the Design of Cooperative Systems, 2008. p 99--110
[27]
Lewkowicz, M., Marcoccia, M., The Participative Framework as a design model for newsgroups: PartRoOM, in Darses, F., Dieng, R., Simone, C., Zacklad, M., Cooperative Systems Design, IOS Press, 2004, pp. 243--257.
[28]
Maloney-Krichmar, D. and Preece, J. A multilevel analysis of sociability, usability, and community dynamics in an online health community. ACM Trans. Comput.-Hum. Interact., 12, 2 (2005), 201--232.
[29]
Morris, M., Lundell, J., and Dishman, E. 2004. Catalyzing social interaction with ubiquitous computing: a needs assessment of elders coping with cognitive decline. In CHI '04 Extended Abstracts on Human Factors in Computing Systems (Vienna, Austria, April 24 - 29, 2004). CHI '04. ACM, New York, NY, 1151--1154. DOI= http://doi.acm.org/10.1145/985921.986011
[30]
Neal, L., Oakley, K., Lindgaard, G., Kaufman, D., Leimeister, J. M., and Selker, T. 2007. Online health communities. In CHI '07 Extended Abstracts on Human Factors in Computing Systems (San Jose, CA, USA, April 28 - May 03, 2007). CHI '07. ACM, New York, NY, 2129--2132. DOI= http://doi.acm.org/10.1145/1240866.1240965
[31]
Nisbet R. 1967. The sociological tradition. London: Heinemann Educational Books.
[32]
Norman, D. A. 1999. Affordance, conventions, and design. interactions 6, 3 (May. 1999), 38--43.
[33]
PIXEL 2000. Etude PIXEL - L'entourage familial des patients atteints de la maladie d'Alzheimer. Novartis. http://www.mediathequenovartis.fr/novartis/spip.php?article107
[34]
Payton, F. C. and Brennan, P. F. 1999. How a community health information network is really used. Commun. ACM 42, 12 (Dec. 1999), 85--89. DOI= http://doi.acm.org/10.1145/322796.322814
[35]
Pfeil, U. and Zaphiris, P. 2007. Patterns of empathy in online communication. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (San Jose, California, USA, April 28 - May 03, 2007). CHI '07. ACM, New York, NY, 919--928. DOI= http://doi.acm.org/10.1145/1240624.1240763
[36]
Pillemer K. and Suitor J. J. Peer Support for Alzheimer's Caregivers: Is it Enough to Make a Difference? Research on Aging 2002; 24; 171DOI: 10.1177/0164027502242001
[37]
Preece, J. 1998. Empathic communities: reaching out across the Web. interactions 5, 2 (Mar. 1998), 32--43. DOI= http://doi.acm.org/10.1145/274430.274435
[38]
Ribes D. and Baker K. 2007. Modes of Social Science Engagement in Community Infrastructure Design. In Proceedings of the Third Communities and Technologies Conference (Michigan State University, USA, June 28-30, 2007) C&T 2007. Springer, 107--130.
[39]
Salem D. A., Bogat G. A. and Reid C. 1998. Mutual help goes online. Journal of Community Psychology, 25, 2 (Dec. 1998), 189--207.
[40]
Schank, R.C. & Abelson, R. 1977. Scripts, Plans, Goals, and Understanding. Hillsdale, NJ: Earlbaum Assoc.
[41]
Shenker, B. 1986. Intentional Communities: Ideology and Alienation in Communal Societies. London: Routledge & Kegan Paul.
[42]
Simpson R.G., 1996. Relationships between self-help health organisations and professional health care providers. Health and social care in the community, 4, 6 (Nov. 1996), 359--370.
[43]
Thoits, P. A. 1986. Social support as coping assistance. Journal of Consulting and Clinical Psychology, 54, 4, (Aug. 1986), 416--423.
[44]
Tonnies F., 1957 (1887), Community and society (translated and edited by Charles P. Loomis). The Michigan State University Press.
[45]
Wenger, E. 1998. Communities of practice : learning, meaning and identity. New York: CUP.
[46]
Zacklad, M. 2003. Communities of action: a cognitive and social approach to the design of CSCW systems. In Proceedings of the 2003 international ACM SIGGROUP Conference on Supporting Group Work (Sanibel Island, Florida, USA, November 09 - 12, 2003). GROUP '03. ACM, New York, NY, 190--197. DOI= http://doi.acm.org/10.1145/958160.9581

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cover image ACM Conferences
GROUP '09: Proceedings of the 2009 ACM International Conference on Supporting Group Work
May 2009
412 pages
ISBN:9781605585000
DOI:10.1145/1531674
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 ACM 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]

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Published: 10 May 2009

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Author Tags

  1. caregivers' community
  2. design
  3. healthcare network
  4. semi-directive interviews
  5. social support
  6. support group

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GROUP09: ACM 2009 International Conference on Supporting Group Work
May 10 - 13, 2009
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GROUP '09 Paper Acceptance Rate 40 of 110 submissions, 36%;
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  • (2024)Designing for Caregiver-facing Values Elicitation ToolsProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642214(1-20)Online publication date: 11-May-2024
  • (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
  • (2024)Privacy-Conscious Design Requirements to Support Older Adults’ Health Information SeekingHCI for Cybersecurity, Privacy and Trust10.1007/978-3-031-61379-1_13(188-211)Online publication date: 1-Jun-2024
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