Using Cultural Probes in the Sensitive Research Setting of Informal Caregiving. A Case Study

  • 1 Multidisciplinary Design & User Research, Institute of Visual Computing & Human-Centered Technology, Vienna University of Technology, Vienna, Austria
  • 2 University of Siegen, Siegen, Germany
Susanne Hensely-Schinkinger
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  • Multidisciplinary Design & User Research, Institute of Visual Computing & Human-Centered Technology, Vienna University of Technology, Vienna, Austria
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  • Susanne Hensely-Schinkinger holds a Master in Medical Computer Science from the Vienna University of Technology and a Master in Nursing Studies from the University of Vienna. Currently she works as a PhD scholar at the Vienna University of Technology. Her research was integral part of the TOPIC project and her interests are centred on issues of technological support in the context of informal care.
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, Marén Schorch
  • 14312University of Siegen, Siegen, Germany
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  • Marén Schorch is a PostDoc researcher and leader of the junior research group “KontiKat” at the University of Siegen, Germany. She holds a PhD in Sociology and is specialized in qualitative social methods. From 2013–2016, she was head of the German part of the EU AAL project “TOPIC” (The Online Platform for Informal Caregivers). Her research and publication focus is in the fields of Computer Supported Cooperative Work (CSCW) and Sociology (qualitative methods and biography). She is especially interested in the way how people deal with extreme events, informal caregiving and health.
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and Hilda Tellioğlu
  • Multidisciplinary Design & User Research, Institute of Visual Computing & Human-Centered Technology, Vienna University of Technology, Vienna, Austria
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  • Hilda Tellioğlu is an Associate Professor at the Vienna University of Technology. As a computer scientist she has been involved with both research and teaching on: software engineering, design & development of information technology in networked (work) environments, computer support for co-operative work (CSCW) in systems design in health care work and in architectural planning, knowledge management, social networks, interaction design, tangible user interaction.
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Abstract

This case study report covers our experiences in using Cultural Probes during the first phase of our European and interdisciplinary research project TOPIC (The Online Platform for Informal Caregivers). In that stage of our research, we focused on two major issues: first, describing and analyzing the characteristics of the care and coordination work of elderly informal caregivers, and second, on first implications for design for the field of informal care. Although our general methodological approach was qualitative (ethnographic) with participant observation and interviewing, we included Cultural Probes as an additional method to ethnography for gaining insight information about the care practices by the means of self-observation of and reflection by the informal caregivers. The paper describes our adaptation of the Cultural Probes approach, the similarities and differences to Gaver et al. [1999. Interactions. 6(1): 21–29], the items of our TOPIC Cultural Probes Kit in detail, and re-constructs the design process of one of the items (the actimoClock). Based on the experiences of our participants with the probes kit and our analyses of that use, we also present lessons learned, pros and cons for including that method in the sensitive setting of informal caregiving.

  • [1]

    Bischofberger, I., Lademann, J., and Radvanszky, A. 2009. «work & care»–Erwerbstätigkeit und Pflege vereinbaren: Literaturstudie zu Herausforderungen für pflegende Angehörige. Betriebe und professionelle Pflege. Pflege. 22(4): 277–286.

    • Crossref
    • Export Citation
  • [2]

    Boehner, K., Vertesi, J., Sengers, P., and Dourish, P. 2007. How HCI Interprets the Probs. Proceedings of the 2007 CHI Conference on Human Factors in Computing Systems. 1077–1086.

  • [3]

    Boehner, K., Gaver, W., and Boucher, A. 2012. Probes. In: (Lury, C., and Wakreford, N. eds) The Inventive Method: The Happening of the Social. Routledge, London/New York, pp. 185–201.

  • [5]

    Breidenstein, G., Hirschauer, S., Kalthoff, H., and Niewand, B. 2013. Ethnografie. Die Praxis der Feldforschung. UVK Verlag. Konstanz.

  • [5]

    Breskovic, I., de Carvalho, A. F. P., Schinkinger, S., and Tellioğlu, H. 2013. Social Awareness Support for Meeting Informal Carers’ Needs: Early Development in TOPIC. Adjunct Proceedings of the 13th European Conference on Computer Supported Cooperative Work. 2, 3–8.

  • [6]

    Burton, L. C., Zdaniuk, B., Schulz, R., Jackson, S., and Hirsch, C. 2003. Transitions in spousal caregiving. The Gerontologist. 43(2): 230–241.

    • Crossref
    • PubMed
    • Export Citation
  • [7]

    Carroll, J. M. 2000. Making Use: scenario-based design of human-computer interactions. MIT press. Cambridge.

  • [8]

    Carter, S., and Mankoff, J. 2005. When participants do the capturing: the role of media in diary studies. Proceedings of the 2005 CHI Conference on Human Factors in Computing Systems. 899–908.

  • [9]

    Chwalisz, K., and Kisler, V. 1995. Perceived Stress: A Better Measure of Caregiver Burden. Measurement and Evaluation in Counseling and Development. 28(2): 88–98.

  • [10]

    Connelly, K., Rehman Laghari, K., Mokhtari, M., and Falk, T. 2014. Approaches to Understanding the Impact of Technologies for Aging in Place: A Mini-Review. Gerontology. 60: 282–288.

    • Crossref
    • PubMed
    • Export Citation
  • [11]

    Coon, D. W., and Evans, B. 2009. Empirically based treatments for family caregiver distress: What works and where do we go from here?. Geriatric Nursing. 30(6): 426–436.

    • Crossref
    • Export Citation
  • [12]

    Crabtree, A., Hemmings, T., Rodden, T., Cheverst, K., Clarke, K., Dewsbury, G., Hughes, J., and Rouncefield, M. 2003. Designing with Care: Adapting cultural probes to inform design in sensitive settings. Proceedings of the Australian Computer-Human Interaction Special Interest Group. 4–13.

  • [13]

    Dourish, P. 2006. Implications for design. Proceedings of the 2006 CHI Conference on Human Factors in Computing Systems. 541–550.

  • [14]

    Elmståhl, S., Dahlrup, B., Ekström, H., and Nordell, E. 2017. The association between medical diagnosis and caregiver burden: a cross-sectional study of recipients of informal support and caregivers from the general population study ‘Good Aging in Skåne’, Sweden. Aging clinical and experimental research. 1–10.

  • [15]

    Emlet, C. A. 1996. Assessing the informal caregiver: team member or hidden patient?. Home care provider. 1(5): 255–262.

    • Crossref
    • PubMed
    • Export Citation
  • [16]

    Gaver, W. W., Boucher, A., Pennington, S., and Walker, B. 2004. Cultural probes and the value of uncertainty. Interactions: New Visions of Human-Computer Interaction. 11(5): 53–56.

    • Crossref
    • Export Citation
  • [17]

    Gaver, W., Dunne, T., and Pacenti, E. 1999. Design: Cultural. Interactions. 6(1): 21–29.

    • Crossref
    • Export Citation
  • [18]

    Glaser, B. G., and Strauss, A. L. 1967. The discovery of grounded theory. Strategies for qualitative research. Aldine de Gruyter.

  • [19]

    Graham, C., Rouncefield, M., Gibbs, M., Vetere, F., and Cheverst, K. 2007. How probes work. Proceedings of the 19th Australasian conference on Computer-Human Interaction: Entertaining User Interfaces. 29–37.

  • [20]

    Hensely-Schinkinger, S., de Carvalho, A. F. P., Glanznig, M., and Tellioğlu, H. 2015. The definition and use of personas in the design of technologies for informal caregivers. International Conference on Human-Computer Interaction. 202–213.

  • [21]

    Hörl, J., Kolland, F., and Majce, G. 2008. Hochaltrigkeit in Österreich: Eine Bestandsaufnahme. Bundesministerium für Arbeit, Soziales und Konsumentenschutz.

  • [22]

    Hughes, N., Locock, L., and Ziebland, S. 2013. Personal identity and the role of ‘carer’ among relatives and friends of people with multiple sclerosis. Social science & medicine. 96: 78–85.

    • Crossref
    • Export Citation
  • [23]

    Hutchinson, H., Mackay, W., Westerlund, B., Bederson, B. B., Druin, A., Plaissant, C., Beaudoin-Lafon, M., Conversy, S., Evans, H., Hansen, H., Roussel, N., and Eiderbäck, B. 2003. Technology Probes: Inspiring Design for and with Families. Proceedings of the 2003 CHI Conference on Human Factors in Computing Systems. 17–24.

  • [24]

    Kutner, G. 2001. AARP caregiver identification study. AARP.

  • [25]

    Long, K., Bakewell, L. L., McNaney, R. C., Vasileiou, K., Atkinson, M., Barreto, M., Barnett, J., Wilson, M., Lawson, S., and Vines, J. 2017. Connecting Those That Care: Designing for Transitioning, Talking, Belonging and Escaping. Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems. 1339–1351.

  • [26]

    Maaß, S., Schirmer, C., Bötcher, A., Buchmüller, S., Koch, D., and Schumacher, R. 2016. Partizipative Entwicklung von Technologien für und mit ältere/n Menschen. https://elib.suub.uni-bremen.de/edocs/00105568-1.pdf. Accessed June 21, 2018.

  • [27]

    Maaß, S., and Buchmüller, S. 2018. The Crucial Role of Cultural Probes in Participatory Design For and With Older Adults. i-com. Journal of Interactive Media. (2): this issue.

  • [28]

    Magnusson, L., Hanson, E., Britto, L., Berthold, H., Chambers, M., and Daly, T. 2002. Supporting Family Carers Through the Use of Information and Communication Technology – the EU Project ACTION. International Journal of Nursing Studies. 39(2002): 369–381.

    • Crossref
    • PubMed
    • Export Citation
  • [29]

    Marino, V. R., Haley, W. E., and Roth, D. L. 2017. Beyond hedonia: A theoretical reframing of caregiver well-being. Translational Issues in Psychological Science. 3(4): 400–409.

    • Crossref
    • Export Citation
  • [30]

    Mattelmäki, T., and Battarbee, K. 2002. Empathy probes. PDC 02 Proceedings of the Participatory Design Conference. 266–271.

  • [31]

    McKee, K. J., Philp, I., Lamura, G., Prouskas, C., Öberg, B., Krevers, B., Spazzafumo, L., Bien, B., Parker, C., Nolan, M. R., and Szczerbinska, K. 2003. The COPE index–a first stage assessment of negative impact, positive value and quality of support of caregiving in informal carers of older people. Aging & Mental Health. 7(1): 39–52.

    • Crossref
    • PubMed
    • Export Citation
  • [32]

    Mello, J. D. A., Macq, J., Van Durme, T., Cès, S., Spruytte, N., Van Audenhove, C., and Declercq, A. 2017. The determinants of informal caregivers’ burden in the care of frail older persons: a dynamic and role-related perspective. Aging & mental health. 21(8): 838–843.

    • Crossref
    • Export Citation
  • [33]

    Müller, C., Struzek, D., Schorch, M., and Neumann, M. 2017. Technology Probes als Mittel zur Unterstützung der Technik-Aneignung. In: (Burghardt, M., Wimmer, R., Wolff, C., and Womser-Hacker, C. eds) Mensch und Computer 2017. Gesellschaft für Informatik e.V., Regensburg, pp. 87–93.

  • [34]

    Müller, C., Neufeldt, C., Randall, D., and Wulf, V. 2012. ICT-development in residential care settings: Sensitizing design to the life circumstances of the residents of a care home. Proceedings of the 2012 CHI Conference on Human Factors in Computing Systems. 2639–2648.

  • [35]

    O’Connor, D. L. 2007. Self-identifying as a caregiver: Exploring the positioning process. Journal of Aging Studies. 21(2): 165–174.

    • Crossref
    • Export Citation
  • [36]

    Oldenkamp, M., Bültmann, U., Wittek, R. P., Stolk, R. P., Hagedoorn, M., and Smidt, N. 2018. Combining informal care and paid work: The use of work arrangements by working adult-child caregivers in the Netherlands. Health & social care in the community. 26(1): 122–131.

    • Crossref
    • Export Citation
  • [37]

    Pochobradsky, E. 2005. Situation pflegender Angehöriger: Endbericht. Bundesministerium für Soziale Sicherheit, Generationen u. Konsumentenschutz.

  • [38]

    Randall, D., Hughes, J., Sommerville, I., Rodden, T., and Bentley, R. 1993: Designing with Ethnography: Making Work Visible. Interacting with Computers. 5(2): 239–253.

    • Crossref
    • Export Citation
  • [39]

    Sanders, L. 2001. Collective creativity. Design. 6(3): 1–6.

  • [40]

    Schinkinger, S., and Tellioğlu, H. 2014. Design Implications to Systems Supporting Informal Caregivers’ Daily Life. International Conference on Human-Computer Interaction. 341–350.

  • [41]

    Schneider, U., Trukeschitz, B., Mühlmann, R., Jung, R., Ponocny, I., Katzlinger, M., and Österle, A. 2009. Wiener Studie zur informellen Pflege und Betreuung älterer Menschen 2008 (Vienna Informal Carer Study – VIC2008). Forschungsinstitut für Altersökonomie der Wirtschaftsuniversität Wien.

  • [42]

    Schorch, M., Wan, L., Randall, D., and Wulf, V. 2016. Designing for Those who are Overlooked. Insider Perspectives on Care Practices and Cooperative Work of Elderly Informal Caregivers. Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing. 787–799.

  • [43]

    Schulz, R., and Beach, S. R. 1999. Caregiving as a risk factor for mortality: The Caregiver Health Effects Study. Jama. 282(23): 2215–2219.

    • Crossref
    • PubMed
    • Export Citation
  • [44]

    Seltzer, M. M., and Li, L. W. 1996. The transitions of caregiving: Subjective and objective definitions. The Gerontologist. 36(5): 614–626.

    • Crossref
    • PubMed
    • Export Citation
  • [45]

    Suchman, L. 1995. Making Work Visible. Communications of the ACM. 38(9): 56–64.

    • Crossref
    • Export Citation
  • [46]

    Tellioğlu, H., Hensely-Schinkinger, S., and Pinatti De Carvalho, A. F. 2015. Modes of independence while informal caregiving. Studies in health technology and informatics. 217: 878–885.

    • PubMed
    • Export Citation
  • [47]

    Tellioğlu, H., Ehrenstrasser, L., and Spreicer, W. 2012. Multimodality in Design of Tangible Systems. i-com Zeitschrift für interactive und cooperative Medien. 11(3): 19–23.

  • [48]

    Tixier, M., and Lewkowicz, M. 2016. “Counting on the Group”: Reconciling Online and Offline Social Support among Older Informal Caregivers. Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems. 3545–3558.

  • [49]

    United Nations Population Fund. 2012. Ageing in the Twenty-First Century: A Celebration and A Challenge. http://unfpa.org/ageingreport/. Accessed February 5, 2018.

  • [50]

    Vetere, F., Davis, H., Gibbs, M. R., Francis, P., and Howard, S. 2006. A magic box for understanding intergenerational play. Proceedings of the 2006 CHI Conference on Human Factors in Computing Systems. 1475–1480.

  • [51]

    Winkler, I., Kilian, R., Matschinger, H., and Angermeyer, M. C. 2006. Lebensqualität älterer pflegender Angehöriger von Demenzkranken. Zeitschrift für Gerontopsychologie &-psychiatrie. 19(1): 17–24.

    • Crossref
    • Export Citation
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