Literacy and health
towards a methodology for investigating patients' participation in healthcare
DOI:
https://doi.org/10.1558/japl.v1.i3.311Keywords:
Health literacy, literacy, critical discourse analysis, ethnography, medical discourseAbstract
Much has been written about the significance of patients’ literacy and language skills in the healthcare process, but there has been little critical analysis of the theories of language that underpin research and policy in this field. Discussions of the research methods and approaches that inform studies on patients’ reading and writing in healthcare settings are scarce. This paper presents a framework for studying the role of written language provided by healthcare institutions. It suggests an alternative to the narrow notions of health literacy that currently dominate the field. In order to illustrate this framework, the paper offers a detailed analysis of one particular case – the role of a patient information leaflet in the diagnostic process. The approach that is suggested draws on a combination of critical discourse analysis with ethnography.
References
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Candlin, S. (2000) New dynamics in the nurse-patient relationship? In S. Sarangi and M. Coulthard (eds) Discourse and Social Life 230–45. London: Pearson Education.
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Coupland, J. and Williams, A. (2002) Conflicting discourses, shifting ideologies: pharmaceutical, ‘alternative’ and feminist emancipatory texts on the menopause. Discourse and Society 13(4): 419–45.
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Fawns, M. and Ivani?, R. (2001) Form-filling as a social practice: taking power into our own hands. In J. Crowther, M. Hamilton and L. Tett (eds) Powerful Literacies 80–94. Leicester: NIACE.
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Freebody, P. and Freiberg, J. (1999) Health literacy and social practice: response to Nutbeam. Literacy and Numeracy Studies 9(2): 57–66.
Gafni, A., Charles, C. and Whelan, T. (1998) The physician-patient encounter: the physician as a perfect agent for the patient versus the informed treatment decision-making model. Social Science and Medicine 47(3): 347–54.
Glazer, H. R., Kirk, L. M. and Bosler, F. E. (1996) Patient education pamphlets about prevention, detection and treatment of breast cancer for low literacy women. Patient Education and Counselling 27(2): 185–9.
Guidry, J. J. and Fagan, P. (1997) The readability levels of cancer-prevention materials targeting African-Americans Journal of Cancer Education 12(2): 108–13.
Gee, J. P. (1996) Social Linguistics and Literacies. London: Taylor and Francis.
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Holden, S. (1996) Institutional language and power: a critical analysis of hospital language. In I. Falk and M. Pension (eds) Literacy, Adults and Diversity 66–84. National Languages and Literacy Institute of Australia.
Hyland, K. (2002) Teaching and Researching Writing. Harlow: Pearson Education.
Kalichman, S. C., Ramachandran, B. and Catz, S. (1999) Adherence to combination antiretroviral therapies in HIV patients with low health literacy. Journal of General Internal Medicine (14)5: 267–73.
Kalichman, S. C., Benotsch, E., Weinhardt, L. (2001) Quality of health information on the internet. Journal of the American Medical Association 286(17): 2092–3.
Lupton, D. (1992) Discourse analysis: a new methodology for understanding the ideologies of health and illness. Australian Journal of Public Health 16(2): 145–50.
Lupton, D. (1997) Consumerism, reflexivity and the medical encounter. Social Science and Medicine 45(3): 373–81.
Lupton, D. (1999) Archetypes of infection: people with HIV/AIDS in the Australian press in the mid 1990s. Sociology of Health and Illness 21(1): 37–53.
Maynard, D. W. (1991) The perspective-display series and the delivery and receipt of diagnostic news. In D. Boden and D. H. Zimmerman (eds) Talk and Social Structure: studies in ethnomethodology and conversation analysis 164–92. Cambridge: Polity Press.
McLellan, F. (1998) ‘Like hunger, like thirst’: patients, journals and the internet. Lancet (352)175: SII39–SII43.
Mishler, E. G. (1984) The Discourse of Medicine. Norwood, New Jersey: Ablex Publishing Corporation.
Molina, L. (2001) Readability of education materials and informed consent forms for women seeking surgical sterilization. Internal Journal of Gynaecology and Obstetrics 73(2): 177–8.
National Consumer Council (2004) Health Literacy: being able to make the most of health. London: National Consumer Council.
NHSE (1996) Patient Partnership: building a collaborative strategy. Leeds: NHS Executive.
Nicholas, D., Huntingdon, P., Williams, P. and Blackburn, P. (2001) Digital health information and health outcomes. Journal of Information Science 27(4): 265–76.
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Nutbeam, D. (2000) Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century. Health Promotion International 15(3): 259–67.
Parker, R., Baker, D., Williams, M. and Nurss, J. (1995) The test of functional health literacy in adults: a new instrument for measuring patients’ literacy skills. Journal of General Internal Medicine 10: 537–41.
Red-Danahay, D. H. (1997) Auto/Ethnography: rewriting the self and the social. Oxford: Berg.
Raich, P. C., Plomer, K. D. and Coyne, C. A. (2001) Literacy, comprehension and informed consent in clinical research. Cancer Investigation (19)4: 437–45.
Roberts, C. and Sarangi, S. (2002) Mapping and assessing medical students’ interactional involvement styles with patients. In K. S. Miller and P. Thompson (eds) Unity and Diversity in Language Use 99–125. London: BAAL/Continuum.
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Seale, C. (2001) Sporting cancer: struggle language in news reports of people with cancer. Sociology of Health and Illness 23(3): 308–29.
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Smagorinsky, P. (ed.) (1994) Speaking about writing: reflections on research methodology. London: Sage.
Smart, J. M. and Burling, D. (2001) Radiology and internet: a systematic review of patient information resources. Clinical Radiology 56: 567–870.
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Street, B. V. (1995) Social Literacies. London: Longman.
Street, B. V. (2001) (ed.) Literacy and Development. Ethnographic perspectives. London: Routledge.
Swales, J. (1998) Other Floors, Other Voices: a textography of a small university building. Cambridge: Cambridge University Press.
ten Have, P. (1991) Talk and institution: a reconsideration of the ‘asymmetry’ of doctorpatient interaction. In D. Boden and D. H. Zimmermann (eds) Talk and Social Structure: studies in ethnomethodology and conversation analysis. Cambridge: Polity Press.
Van Leeuwen, T. (1996) The representation of social actors. In C. Caldas-Coulthard and M. Coulthard (eds) Texts and Practices: readings in critical discourse analysis. London: Routledge.
Wall, G. (2001) Moral constructions of motherhood in breastfeeding discourse. Gender and Society 15(4): 592–610.
Weeks, W. B. and Wallace, A. E. (2002) Readability of British and American medical prose at the start of the 21st century. British Medical Journal 325: 1451–2.
Williams, M. V., Baker, D. W., Parker, R. M. and Nurss, J. R. (1998) Relationship of functional health literacy to patients’ knowledge of their chronic disease. Archives of Internal Medicine 158(2): 166–72.
Wodak, R. (1996) Disorders of Discourse. London: Longman.
World Health Organisation (1998) Health Promotion glossary. Health Promotion International 13(4): 349–64.
Baker, D. W., Williams, M. V., Parker, R. M., Gazmararian, J. A. and Nurss, J. (1999) Development of a brief test to measure functional health literacy. Patient Education and Counselling 38: 33–42.
Barton, D. (1994) Literacy – an Introduction to the Ecology of Written Language. Oxford: Blackwell.
Barton, D. and Hamilton, M. (1998) Local Literacies. London: Routledge.
Barton, D., Hamilton, M. and Ivanic, R. (2000) Situated Literacies. London: Routledge.
Barry, C. A., Stevenson, F. A., Britten, N., Barber, N. and Bradley, C. P. (2001) Giving voice to the lifeworld. More humane, more effective medical care? A qualitative study of doctor-patient communication in general practice. Social Science and Medicine 53: 487–505.
Basara, L. R. and Juergens, J. P. (1994) Patient package insert readability and design. American Pharmacy 34(8): 48–53.
Beaver, K. and Luker, K. (1997) Readability of patient information booklets for women with breast cancer. Patient Education and Counselling 31: 95–102.
Bental, D. (1999) Patient information systems that tailor to the individual. Patient Education and Counselling 36: 171–80.
Berland, G., Elliott, M. and Morales, L. (2001) Health information on the internet: accessibility, quality and readability in English and Spanish. Journal of the American Medical Association 285(20): 2612–21.
Black, D. and Great Britain Working Group on Inequalities in Health (1980) Inequalities in Health. Department of Health and Social Security.
Bloome, D. and Greene, J. (1997) Ethnography and ethnographers of and in education: a situated perspective. In J. Flood, S. B. Heath and D. Lapp (eds) Handbook of Research on Teaching Literacy through the Communicative and Visual Arts 181–202. New York: Macmillan.
Brandt, D. and Klinton, K. (2002) Limits of the local: expanding perspectives on literacy as a social practice. Journal of Literacy Research 34(3): 337–56.
Candlin, C. (2000) Reinventing the patient/client: new challenges to healthcare communication. The Cardiff Lecture. Retrieved from http://www.cf.ac.uk/encap/hcrc/ candlinlecture.pdf on 21st September 2004.
Candlin, S. (2000) New dynamics in the nurse-patient relationship? In S. Sarangi and M. Coulthard (eds) Discourse and Social Life 230–45. London: Pearson Education.
Coulter, A., Entwistle, V. and Gilbert, D. (1998) Informing Patients: an assessment of the quality of patient information materials. London: Kings Fund.
Coupland, J. and Williams, A. (2002) Conflicting discourses, shifting ideologies: pharmaceutical, ‘alternative’ and feminist emancipatory texts on the menopause. Discourse and Society 13(4): 419–45.
Davies, C. A. (1999) Reflexive Ethnography. London and New York: Routledge.
Davis, T., Crouch, M., Wills, G. and Miller, S. (1991) Rapid assessment of literacy levels of adult primary care patients. Family Medicine 23(6): 433–35.
Davis, T. et al. (2001) The role of inadequate health literacy skills in colorectal cancer screening. Cancer Investigation (19)2: 193–200.
Department of Health (1998) Information for Health: an information strategy for the modern NHS 1998–2005. London: Department of Health.
Department of Health (1999) Saving Lives: our healthier nation. Stationery Office.
Department of Health (2001) Building the Information Core: implementing the NHS plan. London: Department of Health.
Department of Health (2004) Choosing Health – Making Healthy Choices Easier. London: Department of Health.
Dixon-Woods, M. (2001) Writing wrongs? An analysis of published discourses about the use of patient information leaflets. Social Science and Medicine 52: 1417–32.
Ellis, C. (2001) Exploring loss through autoethnographic inquiry: autoethnographic stories, co-constructed narratives, and interactive interviews. In A. Bryman (ed.) Ethnography. Volume IV, London: Sage.
Ellis. C. and Bochner, A. P. (2003) Autoethnography, personal narrative, reflexivity: researcher as subject. In N. K. Denzin and Y. S. Lincoln (eds) Collecting and Interpreting Qualitative Material. Second Edition. Thousand Oaks: Sage.
Eysenbach, G. and Kohler, C. (2002) How do consumers search for and appraise health information on the World Wide Web? Qualitative study using focus groups, usability tests, and in-depth interviews. British Medical Journal 324(9).
Fairclough, N. (1992) Discourse and Social Change. Cambridge: Polity Press.
Fairclough, N. (1995) Critical Discourse Analysis. London: Longman.
Fairclough, N. (2001) Language and Power. (Second edition) London: Longman.
Fawns, M. and Ivani?, R. (2001) Form-filling as a social practice: taking power into our own hands. In J. Crowther, M. Hamilton and L. Tett (eds) Powerful Literacies 80–94. Leicester: NIACE.
Feinstein, L. (2001) Review of Quantified Evidence on the Wider Benefits of Learning and Related Potential Costs and Savings: crime and health. Centre for Research on the Wider Benefits of Learning, London: Institute of Education.
Freebody, P. and Freiberg, J. (1997) Adult Literacy and Health: reading and writing as keeping well practices. Australia Adult Literacy Research Network, Melbourne: Language Australia Publications.
Freebody, P. and Freiberg, J. (1999) Health literacy and social practice: response to Nutbeam. Literacy and Numeracy Studies 9(2): 57–66.
Gafni, A., Charles, C. and Whelan, T. (1998) The physician-patient encounter: the physician as a perfect agent for the patient versus the informed treatment decision-making model. Social Science and Medicine 47(3): 347–54.
Glazer, H. R., Kirk, L. M. and Bosler, F. E. (1996) Patient education pamphlets about prevention, detection and treatment of breast cancer for low literacy women. Patient Education and Counselling 27(2): 185–9.
Guidry, J. J. and Fagan, P. (1997) The readability levels of cancer-prevention materials targeting African-Americans Journal of Cancer Education 12(2): 108–13.
Gee, J. P. (1996) Social Linguistics and Literacies. London: Taylor and Francis.
Hammond, C. (2002) Learning to be Healthy. The wider benefits of learning papers, No. 3. Centre for the Wider Benefits of Learning, London: Institute of Education.
Henwood, F., Wyatt, S., Hart, A. and Smith, J. (2003) ‘Ignorance is bliss sometimes’: constraints on the emergence of the ‘informed patient’ in the changing landscapes of health information. Sociology of Health and Illness 25(6): 589–607.
Holden, S. (1996) Institutional language and power: a critical analysis of hospital language. In I. Falk and M. Pension (eds) Literacy, Adults and Diversity 66–84. National Languages and Literacy Institute of Australia.
Hyland, K. (2002) Teaching and Researching Writing. Harlow: Pearson Education.
Kalichman, S. C., Ramachandran, B. and Catz, S. (1999) Adherence to combination antiretroviral therapies in HIV patients with low health literacy. Journal of General Internal Medicine (14)5: 267–73.
Kalichman, S. C., Benotsch, E., Weinhardt, L. (2001) Quality of health information on the internet. Journal of the American Medical Association 286(17): 2092–3.
Lupton, D. (1992) Discourse analysis: a new methodology for understanding the ideologies of health and illness. Australian Journal of Public Health 16(2): 145–50.
Lupton, D. (1997) Consumerism, reflexivity and the medical encounter. Social Science and Medicine 45(3): 373–81.
Lupton, D. (1999) Archetypes of infection: people with HIV/AIDS in the Australian press in the mid 1990s. Sociology of Health and Illness 21(1): 37–53.
Maynard, D. W. (1991) The perspective-display series and the delivery and receipt of diagnostic news. In D. Boden and D. H. Zimmerman (eds) Talk and Social Structure: studies in ethnomethodology and conversation analysis 164–92. Cambridge: Polity Press.
McLellan, F. (1998) ‘Like hunger, like thirst’: patients, journals and the internet. Lancet (352)175: SII39–SII43.
Mishler, E. G. (1984) The Discourse of Medicine. Norwood, New Jersey: Ablex Publishing Corporation.
Molina, L. (2001) Readability of education materials and informed consent forms for women seeking surgical sterilization. Internal Journal of Gynaecology and Obstetrics 73(2): 177–8.
National Consumer Council (2004) Health Literacy: being able to make the most of health. London: National Consumer Council.
NHSE (1996) Patient Partnership: building a collaborative strategy. Leeds: NHS Executive.
Nicholas, D., Huntingdon, P., Williams, P. and Blackburn, P. (2001) Digital health information and health outcomes. Journal of Information Science 27(4): 265–76.
Nutbeam, D. (1999) Literacies across the lifespan: health literacy. Literacy and Numeracy Studies 9(2): 47–56.
Nutbeam, D. (2000) Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century. Health Promotion International 15(3): 259–67.
Parker, R., Baker, D., Williams, M. and Nurss, J. (1995) The test of functional health literacy in adults: a new instrument for measuring patients’ literacy skills. Journal of General Internal Medicine 10: 537–41.
Red-Danahay, D. H. (1997) Auto/Ethnography: rewriting the self and the social. Oxford: Berg.
Raich, P. C., Plomer, K. D. and Coyne, C. A. (2001) Literacy, comprehension and informed consent in clinical research. Cancer Investigation (19)4: 437–45.
Roberts, C. and Sarangi, S. (2002) Mapping and assessing medical students’ interactional involvement styles with patients. In K. S. Miller and P. Thompson (eds) Unity and Diversity in Language Use 99–125. London: BAAL/Continuum.
Royal College of General Practitioners (1998) Independent inquiry into inequalities in health report (The Acheson Report). Royal College of General Practitioners.
Seale, C. (2001) Sporting cancer: struggle language in news reports of people with cancer. Sociology of Health and Illness 23(3): 308–29.
Seidel, G. (1990) ‘Thank God I said no to AIDS’: on the challenging discourse of AIDS in Uganda. Discourse and Society 1(1): 612–84.
Shohet, L. (2004) Health and literacy: perspectives. Literacy and Numeracy Studies 13(1): 65–83.
Smagorinsky, P. (ed.) (1994) Speaking about writing: reflections on research methodology. London: Sage.
Smart, J. M. and Burling, D. (2001) Radiology and internet: a systematic review of patient information resources. Clinical Radiology 56: 567–870.
Street, B. V. (1993) Cross-cultural Approaches to Literacy. Cambridge: Cambridge University Press.
Street, B. V. (1995) Social Literacies. London: Longman.
Street, B. V. (2001) (ed.) Literacy and Development. Ethnographic perspectives. London: Routledge.
Swales, J. (1998) Other Floors, Other Voices: a textography of a small university building. Cambridge: Cambridge University Press.
ten Have, P. (1991) Talk and institution: a reconsideration of the ‘asymmetry’ of doctorpatient interaction. In D. Boden and D. H. Zimmermann (eds) Talk and Social Structure: studies in ethnomethodology and conversation analysis. Cambridge: Polity Press.
Van Leeuwen, T. (1996) The representation of social actors. In C. Caldas-Coulthard and M. Coulthard (eds) Texts and Practices: readings in critical discourse analysis. London: Routledge.
Wall, G. (2001) Moral constructions of motherhood in breastfeeding discourse. Gender and Society 15(4): 592–610.
Weeks, W. B. and Wallace, A. E. (2002) Readability of British and American medical prose at the start of the 21st century. British Medical Journal 325: 1451–2.
Williams, M. V., Baker, D. W., Parker, R. M. and Nurss, J. R. (1998) Relationship of functional health literacy to patients’ knowledge of their chronic disease. Archives of Internal Medicine 158(2): 166–72.
Wodak, R. (1996) Disorders of Discourse. London: Longman.
World Health Organisation (1998) Health Promotion glossary. Health Promotion International 13(4): 349–64.
Published
2004-12-05
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Section
Articles
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Equinox Publishing Ltd.
How to Cite
Dray, S., & Papen, U. (2004). Literacy and health: towards a methodology for investigating patients’ participation in healthcare. Journal of Applied Linguistics and Professional Practice, 1(3), 311-332. https://doi.org/10.1558/japl.v1.i3.311
