‘Memory Mate’ as Boundary Object in Cancer Treatment for Patients with Dementia
Authors: Rachel Hurdley, Jane Hopkinson
Abstract:
This article is based on observation of a cross-disciplinary, cross-institutional team that worked on an intervention called ‘Memory Mate’ for use in a UK Cancer Centre. This aimed to improve treatment outcomes for patients who had comorbid dementia or other memory impairment. Comorbid patients present ambiguous, spoiled identities, problematising the boundaries of health specialisms and frames of understanding. Memory Mate is theorised as a boundary object facilitating service transformation by changing relations between oncology and mental health care practice. It crosses the boundaries between oncology and mental health. Its introduction signifies an important step in reconfiguring relations between the specialisms. As a boundary object, it contains parallel, even contesting worlds, with potential to enable an eventual synthesis of the double stigma of cancer and dementia. Memory Mate comprises physical things, such as an animation, but its principal value is in the interaction it initiates across disciplines and services. It supports evolution of practices to address a newly emergent challenge for health service provision, namely the cancer patient with comorbid dementia/cognitive impairment. Getting clinicians from different disciplines working together on a practical solution generates a dialogue that can shift professional identity and change the culture of practice.
Keywords: Boundary object, cancer, dementia, interdisciplinary teams.
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[1] J. B. Hopkinson, R. Milton, A. King and D. Edwards, “People with dementia: what is known about their experience of cancer treatment and cancer treatment outcomes? A systematic review,” Psycho-Oncology, vol. 25, pp. 1137 -1146, 2016.
[2] Welsh Government, “Welsh Dementia Action Plan”, 2019 https://gov.wales/sites/default/files/publications/2019-04/dementia-action-plan-for-wales.pdf
[3] L. McWilliams, C. Farrell, J. Keady, C. Swarbrick, L. Burgess, G. Grande, S. Bellhouse and J. Yorke, “Cancer-related information needs and treatment decision-making experiences of people with dementia in England: a multiple perspective qualitative study”, BMJ Open, vol. 8, e020250, 2018.
[4] G. Witham, C. Haigh, D. Mitchell and A. Beddow, “Carer Experience Supporting Someone with Dementia and Cancer: A Narrative Approach,” Qualitative Health Research, vol. 28, pp. 813–823, 2018.
[5] C. Martin, A. Shrestha, M. Burton, K. Collins and L. Wyld, “How are caregivers involved in treatment decision making for older people with dementia and a new diagnosis of cancer?” Psycho‐Oncology, vol. 28, pp. 1197– 1206, 2019.
[6] C. Surr, R. Kelley, A. Griffiths, L. Ashley, F. Cowdell, A. Henry, M. Collinson, E. Mason and A. Farrin “Enabling people with dementia to access and receive cancer treatment and care: The crucial role of supportive networks,” Journal of Geriatric Oncology, vol. 11, pp. 1125 – 1131, 2020.
[7] J. Hopkinson, A. King, N. Courtier, R. Milton and J. Elias, “Potential for identification of memory problems in the cancer clinic to enable improved treatment experience and outcomes: mixed methods case study research,” European Journal of Oncology Nursing, vol. 48, article number 101777, 2020.
[8] Alzheimer’s Society, 2017 https://www.dementiafriends.org.uk/register-champion
[9] E. Goffman, Frame Analysis: An Essay on the Organization of Experience. Cambridge, MA: Harvard University Press, 1993, p. 10.
[10] J. Braithwaite, R. Clay-Williams, E. Vecellio, D. Marks, T. Hooper, M. Westbrook, J. Westbrook, B. Blakely and K. Ludlow, “The basis of clinical tribalism, hierarchy and stereotyping: a laboratory-controlled teamwork experiment,” BMJ Open, 6:e012467, 2016.
[11] A. Fraser, E. Stewart and L. Jones, “Editorial: the importance of sociological approaches to the study of service change in health care,” Sociology of Health and Illness, vol. 41, pp. 1215-1220, p. 1219, 2019.
[12] T. Gieryn, “Boundary‐Work and the Demarcation of Science from Non‐Science: Strains and Interests in Professional Ideologies of Scientists,” American Sociological Review, vol. 48, pp. 781–95, 1983.
[13] S. L. Star, “This is Not a Boundary Object: Reflections on the Origin of a Concept,” Science, Technology, & Human Values, vol. 35, pp. 601-617, p. 603, 2010.
[14] E. Quinlan, “The ‘actualities’ of knowledge work: an institutional ethnography of multi‐disciplinary primary health care teams,” Sociology of Health & Illness, vol. 31, pp. 625-641, 2009.
[15] J. Waring, S. Bishop. F. Marshall, N. Tyler and R. Vickers, “An ethnographic study comparing approaches to inter-professional knowledge sharing and learning in discharge planning and care transitions,” Journal of Health Organization and Management, vol. 33, pp. 677-694, 2019.
[16] J. Lave and E. Wenger, Learning in Doing: Social, cognitive, and computational perspectives. Situated learning: Legitimate peripheral participation. Cambridge: Cambridge University Press, 1991.
[17] I. Pyrko, V. Dörfler and C. Eden, “Thinking Together: What makes Communities of Practice work?” Human Relations, vol. 70, pp. 389-409, p. 389, 2017.
[18] E. Wenger, Communities of Practice: Learning, Meaning and Identity. Cambridge, UK: Cambridge University Press, 1998.
[19] E. Wenger-Trayner, M. Fenton-O’Creevy, S. Hutchison, C. Kubiak and B. Wenger-Trayner, Learning in Landscapes of Practice: Boundaries, Identity, and Knowledgeability in Practice-based Learning. New York: Routledge, 2014.
[20] D. Allen, “Narrating Nursing Jurisdiction: ‘Atrocity Stories’ and ‘Boundary‐Work’,” Symbolic Interaction, vol. 24, pp. 75-103, 2001.
[21] S. Chreim, A. Langley, M. Comeau-Vallée, J.-L. Huq and T. Reay, “Leadership as boundary work in healthcare teams,” Leadership, vol. 9, pp. 201–228, 2013
[22] D. D'Andreta, M. Marabelli, S. Newell, H. Scarbrough and J. Swan, “Dominant cognitive frames and the innovative power of social networks,” Organization Studies, vol. 37, pp. 293-321, 2016.
[23] J. Rodriquez, “Negotiating Medical Authority: Shared Decision‐Making in the ICU,” Symbolic Interaction, vol. 44, pp. 555-575, 2020.
[24] A. Bartlett and B. Clarke, “An exploration of healthcare professionals’ beliefs about caring for older people dying from cancer with a coincidental dementia,” Dementia, vol. 11, pp. 559-565, 2012.
[25] M. Kangasniemi, M. Vaismoradi, M. Jasper and H. Turunen, “Ethical issues in patient safety: Implications for nursing management,” Nursing Ethics, vol. 2, pp. 904-16, 2013.
[26] A. Hillman, W. Tadd, S. Calnan,, M. Calnan, A. Bayer and S. Read, “Risk, governance and the experience of care,” Sociology of Health & Illness, vol. 35, pp. 939-955, p. 952, 2013.
[27] P. Corrigan, “How Stigma Interferes with Mental Health Care,” American Psychologist, vol. 59, pp.614–625, 2004.
[28] G. Scambler, “Health‐related stigma,” Sociology of Health & Illness, vol. 31, pp. 441-455, 2009.
[29] L. Birt, R. Griffiths, G. Charlesworth, P. Higgs, M. Orrell, P. Leung and F. Poland, “Maintaining Social Connections in Dementia: A Qualitative Synthesis,” Qualitative Health Research, vol. 30, pp.23–42, 2020.
[30] E. Goffman, Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs. NJ.: Prentice‐Hall Inc, 1963, p. 127.
[31] T. Nguyen and X. Li, “Understanding public-stigma and self-stigma in the context of dementia: A systematic review of the global literature,” Dementia, vol. 19, pp.148-181, p. 177, 2020.
[32] J. Swallow, “Constructing classification boundaries in the memory clinic: negotiating risk and uncertainty in constituting mild cognitive impairment,” Sociology of Health and Illness, vol. 42, pp. 99-113, 2020.
[33] H. Cramer, J. Hughes, R. Johnson, M. Evans, C. Deaton, A. Timmis, H. Hemingway, G. Feder and K. Featherstone, “‘Who does this patient belong to?’ boundary work and the re/making of (NSTEMI) heart attack patients,” Sociology of Health and Illness, vol. 40, pp.1404-1429, p. 1404, 2018.
[34] S. L. Star and J. Griesemer, “Institutional Ecology, ‘Translations’ and Boundary Objects: Amateurs and Professionals in Berkeley's Museum of Vertebrate Zoology, 1907-39,” Social Studies of Science, vol. 19, pp. 387–420, 1989.
[35] Z. Kertcher and E. Coslor, “Boundary Objects and the Technical Culture Divide: Successful Practices for Voluntary Innovation Teams Crossing Scientific and Professional Fields,” Journal of Management Inquiry, vol. 29, pp. 76-91, 2020.
[36] C. Papoutsi, J. Shaw, S. Paparini and S. Shaw, “We Need to Talk About Complexity in Health Research: Findings from a Focused Ethnography,” Qualitative Health Research, vol. 3, pp. 338–348, 2021.
[37] A. Hunter, J. Keady, D. Casey, A. Grealish and K. Murphy, “Psychosocial Intervention Use in Long-Stay Dementia Care: A Classic Grounded Theory,” Qualitative Health Research, vol. 26, pp. 2024–2034, 2016.
[38] J. Creswell, A Concise Introduction to Mixed Methods Research. London: Sage, 2015, p. 3.
[39] D. Silverman, Doing Qualitative Research. A Handbook. London. London: Sage 2005, p. 159.
[40] M. Ciesielska, K. Boström and M. Öhlander, “Observation Methods”, in Qualitative Methodologies in Organization Studies, Vol. 3, M. Ciesielska and D. Jemielnia, Ed. Heidelberg: Springer, 2018, pp. 33-52, p. 34.
[41] M. Hammersley and P. Atkinson, Ethnography: Principles in Practice, 4th edn. London: Routledge, 2019, pp. 142-157.
[42] J. Lofland, D. Snow L. Anderson and L. Lofland, Analyzing Social Settings: A Guide to Qualitative Observation and Analysis. 4th ed. Belmont, CA: Cengage Learning, 2005.
[43] G. McGivern and S. Dopson, “Inter-epistemic power and transforming knowledge objects in a biomedical network,” Organization Studies, vol. 31, pp. 1667-1686, 2010.
[44] B. Glaser and A. Strauss, Discovery of grounded theory: Strategies for qualitative research. Hawthorne, NY: Aldine de Gruyter, 1967.
[45] P. Atkinson, “The Ethnography of a Medical Setting: Reading, Writing, and Rhetoric,” Qualitative Health Research vol. 2, pp. 451-474, 1992.
[46] J. Law, After Method: mess in social science research. London: Routledge, 2004.
[47] N. Denzin, “Interpretive Methods: Micromethods”, in International Encyclopedia of the Social & Behavioral Sciences, 2nd ed., J. Wright, Ed. London: Elsevier, 2015, pp. 648-651, p. 650.
[48] B. Gray, Face to Face with Emotions in Health and Social Care. Springer, New York, NY, 2012, pp. 59-72.
[49] G. Martin and R. Finn, “Patients as team members: opportunities, challenges and paradoxes of including patients in multi‐professional healthcare teams,” Sociology of Health & Illness, vol. 33, pp. 1050-1065, p. 1050, 2011.
[50] R. Hurdley, “The Power of Corridors: Connecting Doors, Mobilising Materials, Plotting Openness,” The Sociological Review, vol. 58: 1: 45–64, 2010.
[51] N. Courtier, R. Milton, A. King, R. Tope, S. Morgan and J. Hopkinson, “Cancer and dementia: an exploratory study of the experience of cancer treatment in people with dementia,” Psycho-Oncology, vol. 25, pp. 1079-1084, 2016.
[52] M. Comeau-Vallée and A. Langley, “The Interplay of Inter- and Intraprofessional Boundary Work in Multidisciplinary Teams,” Organization Studies, vol. 4, pp. 1649–1672, 2020.
[53] G. Currie and L. White, “Inter-professional Barriers and Knowledge Brokering in an Organizational Context: The Case of Healthcare,” Organization Studies, vol. 33, pp. 1333–1361: 1353, 2012.
[54] E. Goffman, Forms of Talk. Philadelphia: University of Pennsylvania Press, 1981, p. 14.
[55] V. Pouthier, “Griping and Joking as Identification Rituals and Tools for Engagement in Cross-Boundary Team Meetings,” Organization Studies, vol. 38, pp. 753–774, 2017.
[56] J. Holmes and M. Marra, “Humour as a discursive boundary marker in social interaction”, in Us and Others: Social Identities Across Languages, Discourses and Cultures, A. Duszak, Ed. Amsterdam: John Benjamins Publishing, 2002, pp. 377-400.
[57] M. Atkinson and S. Singer, “Managing Organizational Constraints in Innovation Teams: A Qualitative Study Across Four Health Systems,” Medical Care Research and Review, vol. 78, pp. 521-536, 2021.
[58] K. Harvey and G. Brookes, “Looking Through Dementia: What Do Commercial Stock Images Tell Us About Aging and Cognitive Decline?” Qualitative Health Research, vol. 29, pp. 987–1003, 2019.
[59] T. Müller, “Stigma, the Moral Career of a Concept: Some Notes on Emotions, Agency, Teflon Stigma, and Marginalizing Stigma,” Symbolic Interaction, vol. 43, pp. 3-20, p. 16, 2020.
[60] M. Raji, Y. Kuo, J. Freeman and J. Goodwin, “Effect of a dementia diagnosis on survival of older patients after a diagnosis of breast, colon, or prostate cancer: Implications for cancer care,” Archives of Internal Medicine, vol. 168, pp. 2033-2040, 2008.
[61] E. Silva E. and M. Flynn, “Liminal Stigma and Disaligning Activity: Online Comments about Trump's Family Separation Policy,” Symbolic Interaction, vol. 43, pp. 126-155, 2020.
[62] G. Bowker and S. L. Star, Sorting things out: Classification and its consequences. Cambridge: MIT Press, 1999, p. 56.
[63] S. Dopson (2005) “The diffusion of medical innovations: Can figurational sociology contribute?” Organization Studies, vol.26, pp. 1125-1144, p. 1141, 2005.