Enacting Appreciations
Beyond the Patient Perspective
DOI:
https://doi.org/10.48006/2358-0097/V9N1.E9105Keywords:
ethnography, health research, language, patient perspective, performativity, representationAbstract
The “patient perspective” serves as an analytical tool to present patients as knowing subjects in research, rather than as objects known by medicine. This paper analyses problems encountered with the concept of the patient perspective as applied to long-term mental health care. One problem is that “having a perspective” requires a perception of oneself as an individual and the ability to represent one’s individual situation in language; this excludes from research patients who do not express themselves verbally. Another problem is that the idea of “talk” as a representation of the world ignores the fact that talk is also performative in the world: it requires, at least, the ability to deal with an interview situation. To think up alternative ways of including patients as subjects in research, I develop an approach that takes this performativity as a starting point. Analysing practical situations and activities, I argue that patients enact appreciations, making known what they like or dislike by verbal or non-verbal means in a given material environment, in situations that are co-produced by others. Thus, subjectivity is linked to situations and interactions, rather than just to individual characteristics; to “patient positions,” rather than “patient perspectives.”
References
AUSTIN, J. 1992. How to Do Things with Words: Harvard University Press.
BARBOT, J. and DODIER, Nicolas. 2002. “Multiplicity in Scientific Medicine: The Experience of HIV-Positive Patients”. Science, Technology and Human Values, 27(3) pp.404-440. DOI: https://doi.org/10.1177/016224390202700304
BLUMHAGEN, D. 1980. “Hyper-Tension: A Folk Illness with a Medical Name”. Culture, Medicine and Psychiatry, 4, p. 197–227. DOI: https://doi.org/10.1007/BF00048414
BOOTH, T; BOOTH, W. 1994. “The Use of Depth Interviewing with Vulnerable Subjects: Lessons from a Research Study of Parents with Learning Difficulties”. Social Science and Medicine, 39(3), 415–424. DOI: https://doi.org/10.1016/0277-9536(94)90139-2
BRANDON, D; and RIDLEY, J. 1988. Beginning to Listen. A Study of the Views of Residents Living in a Hostel for Mentally Handicapped People. London: MIND, National Association for Mental Health.
BURY, M. 1982. “Chronic illness as biographical disruption”. Sociology of Health and Illness, 4, p. 167–182. DOI: https://doi.org/10.1111/1467-9566.ep11339939
BURY, M. 1991. “The Sociology of Chronic Illness: A Review of Research and Prospects”. Sociology of Health and Illness, 13, p.451–468. DOI: https://doi.org/10.1111/j.1467-9566.1991.tb00522.x
BURY, M. 2001. “Illness Narratives: Fact or fiction?”. Sociology of Health and Illness, 23, p. 263–285. DOI: https://doi.org/10.1111/1467-9566.00252
CAMPBELL, S; ROLAND, M; BUETOW, S. 2000. “Defining Quality of Care”. Social Science and Medicine, 51, p.1611–1625. DOI: https://doi.org/10.1016/S0277-9536(00)00057-5
CASTEL, R; CASTEL, F; LOVELL, A. 1979. La Société psychiatrique avancée: Le modèle américain (The advanced psychiatric society. The American model). Paris: Grasset.
CHARMAZ, K. 2000. “Experiencing Chronic Illness”. In: Gary Albrecht, Ray Fitzpatrick, and Susan Scrimshaw (Eds.) Handbook of Social Studies in Health and Medicine, pp. 277–292. London: Sage. DOI: https://doi.org/10.4135/9781848608412.n18
CHATTERJI, R. 1998. “An Ethnography of Dementia. A Case Study of an Alzheimer’s Disease Patient in the Netherlands”. Culture, Medicine and Psychiatry, 22, p. 355–382. DOI: https://doi.org/10.1023/A:1005442300388
CLARK, P; BOWLING, A. 1989. “Observational Study of Quality of Life in NHS Nursing Homes and Long-stay Ward for the Elderly”. Ageing and Society 9, p. 123–148. DOI: https://doi.org/10.1017/S0144686X00013520
CLARK, P; BOWLING, A. 1990. “Quality of Everyday Life in Long-stay Institutions for the Elderly. An Observational Study of Long-stay Hospital and Nursing Home Care”. Social Science and Medicine, 310(11), p.1201–1210. DOI: https://doi.org/10.1016/0277-9536(90)90260-Y
COHEN, M.Z, TRIPP-REIMER, T; SMITH, C; SOROFMAN, B; LIVELY, S. 1994. “Explanatory Models of Diabetes: Patient Practitioner Variation”. Social Science and Medicine, 38(1), p.59–66. DOI: https://doi.org/10.1016/0277-9536(94)90300-X
CORBIN, J.M; STRAUSS, A. 1988. Unending Work and Care. Managing Chronic Illness at Home. San Francisco/ London: Jossey-Bass Publishers.
CORRIGAN, P.W; BULCAN, B; MCCRAKEN, S. 1996. “Can Severely Mentally Ill Adults Reliably Report Their Needs?” Journal of Nervous and Mental Disease, 184, p. 523–529. DOI: https://doi.org/10.1097/00005053-199609000-00002
CSORDAS, T.J (ed). 1994. Embodiment and Experience. The Existential Ground of Culture and Self. Cambridge: Cambridge University Press.
CSORDAS, T.J. 1994. “Introduction: The Body as Representation and Being-in-the-world”. In: T.J. Csordas (Ed.), Embodiment and Experience. The Existential Ground of Culture and Self, pp.1-26, Cambridge: Cambridge University Press.
DANIEL, E.V. 1994. “The Individual in Terror”. In: T.J. Csordas, (Ed) Embodiment and Experience. The Existential Ground of Culture and Self, p.229–247. Cambridge: Cambridge University Press.
DAVIES, A.D.M; SNAITH, P.A. 1980. “The Social Behaviour of Geriatric Patients at Mealtimes: An Observational and Intervention Study”. Age and Ageing, 9, p.93–99. DOI: https://doi.org/10.1093/ageing/9.2.93
DEEGAN, P.E. 1993. “Recovering our Sense of Value after Being Labelled Mentally Ill”. Journal of Psychosocial Nursing, 31, p. 7–11. DOI: https://doi.org/10.3928/0279-3695-19930401-06
FULFORD, K.M. 1989. “Mental Illness". In: R. Chadwick (Ed.). Encyclopaedia of Applied Ethics. San Diego: Academic Press.
GERHARDT, U. 1986. Patientenkarrieren. Frankfurt: Suhrkamp.
GERHARDT, U. 1989. Ideas about Illness. An Intellectual and Political History of Medical Sociology. London: Macmillan. DOI: https://doi.org/10.1007/978-1-349-20016-0
GERHARDT, U. 1990. “Introductory Essay. Qualitative Research on Chronic Illness: The Issue and The Story”. Social Science and Medicine, 11, p. 1149–1159. DOI: https://doi.org/10.1016/0277-9536(90)90255-Q
GOFFMAN, E. 1968. Essays on the Social Situation of Mental Patients and Other Inmates. Harmondsworth: Penguin.
HARBERS, H; MOL, A; STOLLMEYER, A. 2002. “Food Matters; Arguments for an Ethnography of Daily Care”. Theory, Culture and Society, 19, p. 207–226. DOI: https://doi.org/10.1177/026327602761899228
HARRISON, S; MORT, M. 1998. “Which Champions, Which People? Public and User Involvement in Health Care as a Technology of Legitimation”. Social Policy and Administration, 32, p. 60– 70. DOI: https://doi.org/10.1111/1467-9515.00086
HELMAN, C.G. 1978. “Feed a Cold, Starve a Fever. Folk Models of Infection in an English Suburban Community, and Their Relation to Medical Treatment”. Culture, Medicine and Psychiatry, 2, p. 107–137. DOI: https://doi.org/10.1007/BF00054580
HENDRIKS, R. 1998. “Egg Timers, Human Values and the Care of Autistic Youths”. Science, Technology and Human Values, 23(4), p. 399–424. DOI: https://doi.org/10.1177/016224399802300403
HUNT, L.M; JORDAN, B; IRWIN, S. 1989. “Views of What’s Wrong: Diagnosis, and Patients’ Concepts of Illness”. Social Science and Medicine, 28(9), p. 945–956. DOI: https://doi.org/10.1016/0277-9536(89)90324-9
ILLICH, I. 1975a. Medical Nemesis. London: Calder & Boyars.
ILLICH, I. 1975b. Limits to Medicine: The Expropriation of Health. London: Calder & Boyars.
KEITH, J. 1986. “Participant Observation”. In: Methods for Old-age Research. Strategies for Studying Diversity, pp. 1–21. Massachusetts: Bergin & Garvey Publishers.
KLEINMAN, A. 1980. Patients and Healers in the Context of Culture. Berkeley: University of California Press. DOI: https://doi.org/10.1525/9780520340848
KLEINMAN, A. 1980¿8 The Illness Narratives. Suffering, Healing and the Human Condition. New York: Basic Books.
KLEIJNEN, J.G.V.M; VISSER, A; BREEMHAAR, B; KLEIJSERS, J.H.M; GULIKERS, H.D.W; TE WIERIK, M; EMANS, B. 1989. Het Interviewen Van Ouderen. Ervaringen met het Mondeling Afnemen Van Enqueˆtes in Sociaal Wetenschappelijk Onderzoek, (Interviewing the elderly. Experience with Oral Questionaires in Social Scientific Research) Verouderingskatern. Maastricht: Rijksuniversiteit Limburg, Vakgroep economie van de gezondheidszorg, sectie Veroudering.
LAING, R.D. 1985. Wisdom, Madness and Folly, the Making of a Psychiatrist. London : Macmillan.
LAW, J; MOSER, I. 1999. “Managing Subjectivities and Desires”. Concepts and Transformation 4, p. 249–279. DOI: https://doi.org/10.1075/cat.4.3.03law
LILLRANK, A. 2002. “The Tension Between Overt Talk and Covert Emotions in Illness Narratives: Transition from Clinician to Researcher”. Culture, Medicine and Psychiatry, 26, p. 111–127. DOI: https://doi.org/10.1023/A:1015285013489
LINDENBAUM, S; LOCK, M. 1993. Knowledge, Power, and Practice. The Anthropology of Medicine and Everyday Life. Berkeley & Los Angeles: University of California Press. DOI: https://doi.org/10.1525/9780520354814
MATTINGLY, C. 1998. Healing Dramas and Clinical Plots: The Narrative Structure of Experience. Cambridge: Cambridge University Press. DOI: https://doi.org/10.1017/CBO9781139167017
MCGLYNN, E.A. 1997. “Six Challenges in Measuring the Quality of Health Care”. Health Affairs, 16, p.7–21. DOI: https://doi.org/10.1377/hlthaff.16.3.7
MILEWA, T; VALENTINE, J; CALNAN, M. 1999. “Community Participation and Citizenship in British Health Care Planning: Narratives of Power and Involvement in the Changing Welfare State”. Sociology of Health and Illness, 21 , p.445–465. DOI: https://doi.org/10.1111/1467-9566.00166
MISHER, E.G. 1986. Research Interviewing. Cambridge: Harvard University Press.
MOL, A. 2002. “De burger en het lichaam Politiek-theoretische verkenningen (The citi- zen and the body. Theoretical political explorations)”. Socrateslezing, http://www. human.nl/hkc/socrates/2002.htm.
MOL, A. 2002. The body multiple. Ontology in medical practice. Durham and London: Duke University Press. DOI: https://doi.org/10.1215/9780822384151
MOL, A; BERG, M. 1998. “An Introduction”. In: A. Mol and M. Berg (Eds.), Differences in Medicine: Unravelling Practices, Techniques and Bodies, p. 1–12. Durham and London: Duke University Press. DOI: https://doi.org/10.2307/j.ctv1220pvr.4
MOL, A; MESMAN, J. 1996. “Neonatal Food and the Politics of Theory: Some Questions of Method”. Social Studies of Science, 26, p.419–444. DOI: https://doi.org/10.1177/030631296026002009
MOSER, I; LAW, J. 1998. “Materiality, Textuality, Subjectivity: Notes on Desire, Complexity and Inclusion”. Concepts and Transformation: International Journal of Action Research and Organizational RenewalI, 3, p. 207–277. DOI: https://doi.org/10.1075/cat.3.3.03mos
MOSER, I; LAW, J. 2003. “´Making Voices’: New Media Technologies, Disabilities and Articulation”. In: Liesto, G., Morrison, A., and Rasmussen, T. (Eds.), Digital Media Revisited. Theoretical and Conceptual Innovation in Digital Domains, p. 491–520. Cambridge: MIT-Press.
OLIVER, M. 1990. The Politics of Disablement. London: Macmillan. DOI: https://doi.org/10.1007/978-1-349-20895-1
PINDER, R. 1992. “Coherence and Incoherence: Doctors’ and Patients’ Perspectives on the Diagnosis of Parkinson’s Disease”. Sociology of Health and Illness, 14(1), p.1–22. DOI: https://doi.org/10.1111/j.1467-9566.1992.tb00111.x
POLS, J. 2005. “Enacting appreciations: Beyond the patient perspective”. Health Care Analysis, v. 13, p. 203-221. DOI: https://doi.org/10.1007/s10728-005-6448-6
POLS, A.J. 1992. “Dementie, Taal en Teken: Een Semiotisch Onderzoek Bij Dementerende Ouderen. (Dementia, Language and Signs. A Semiotic Study with Demented Elderly Persons.)”. Maandblad Geestelijke Volksgezondheid 47, p. 809–826.
POUELS, S; PENNIX, K; HEYMAN, F. 1994. “Ouderen Aan Het Woord Over Zorgverlening (Elderly Speak About Care)”. Leeftijd, 32(6), p. 32–34.
PRIOR, L; PANG, L.C; HUAT, S.B. 2000. “Beliefs and Accounts of Illness. Views from Two Cantonese- Speaking Communities in England”. Sociology of Health Illness ,22, p. 815–839. DOI: https://doi.org/10.1111/1467-9566.00232
REYNOLDS, J; SWARTZ, L. 1993. “Professional Constructions of ‘Lay’ Illness: ‘Nerves’ in a Rural ‘coloured’ Community in South Africa”. Social Science and Medicine, 36(5), p. 654–664. DOI: https://doi.org/10.1016/0277-9536(93)90062-9
RIESSMAN, C.K. 1990. “Strategic Uses of Narrative in the Presentation of Self and Illness. A Research Note”. Social Science and Medicine, 30, p.1195–1200. DOI: https://doi.org/10.1016/0277-9536(90)90259-U
ROBINSON, I. 1986. Multiple Sclerosis. Tavistock: London.
SHAKESPEARE, T (ed). 1998. The Disability Reader. London and New York: Cassell.
SKULTANS, V. 2000. “Narrative Illness and the Body”. Anthropology and Medicine, 7, p. 5–13. DOI: https://doi.org/10.1080/136484700109322
TOOMBS, S.K. 1992. The Meaning of Illness. A Phenomenological Account of the Different Perspectives of Physician and Patient. Dordrecht, Boston, London: Kluwer Academic Publishers. DOI: https://doi.org/10.1007/978-94-011-2630-4
WAISMAN, L.C; ROWLAND, L.A. 1989. “Ranking of Needs: A New Method of Assessment for Use with Chronic Psychiatric Patients”. Acta Psychiatrica Scandinavia, 80, p. 260–266. DOI: https://doi.org/10.1111/j.1600-0447.1989.tb01335.x
WILLIAMS, G.H. 2000. “Knowledge Narratives”. Anthropology and medicine, 7, p.135–114. DOI: https://doi.org/10.1080/136484700109395
WILLIAMS, G.H. 1984. “The Genesis of Chronic Illness: Narrative Reconstruction”. Sociology of Health and Illness, 6, p. 175–200. DOI: https://doi.org/10.1111/1467-9566.ep10778250
WILLIAMS, S.J. 2000. “Chronic Illness as Biographical Disruption or Biographical Disruption as Chronic Illness? Reflections on a Core Concept”. Sociology of Health and Illness, 22(1), p. 40–67. DOI: https://doi.org/10.1111/1467-9566.00191
WILITIS, F.K. 1988. “Health Rating and Life Satisfaction in the Later Middle Years”. Journal of Gerontology, 43(5),p. 172–176.
WINANCE, M. 2001. The`se et Prothe`se. Le Processus d’Habilitation Comme Fabrication de la Personne. L’Association Franc¸aise Contre les Myopathies Face au Handicap. Ph.D. dissertation Department of Socio-Economie de l’Innovation, ENSMP, CSI.
WINKLER, C; WINNIGER, K. 1994. “Rape Trauma: Contexts of Meaning”. In: T. J. Csordas (Ed.) Embodiment and Experience: The Existential Ground of Culture and Self, p. 248–68, Cambridge: Cambridge University Press.
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2023 Novos Debates
This work is licensed under a Creative Commons Attribution 3.0 Unported License.
Open Access Statement
Novos Debates is an open access journal. We do not charge any fee for the publication of articles or for access to our issues. All our content, unless otherwise indicated, is licensed under Creative Commons Brazil Attribution 3.0 (CC BY 3.0 BR).
You are free to:
– Share — copy and redistribute the material in any medium or format
– Adapt — remix, transform, and build upon the material for any purpose, even commercially
– The licensor cannot revoke these freedoms as long as you follow the license terms.
Under the following terms:
– Attribution — You must give appropriate credit, provide a link to the license, and indicate if changes were made. You may do so in any reasonable manner, but not in any way that suggests the licensor endorses you or your use.
– No additional restrictions — You may not apply legal terms or technological measures that legally restrict others from doing anything the license permits.
