LIHS Mini Master Class

Transcription

1 Alexandru Nicusor Matei 2013 CC BY-NC-ND 2.0 Thursday, 9 th February 2017 Illness narratives for qualitative health research Dr Lina Masana Lina Masana University of Leeds This work is made available for reuse under the terms of the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International Licence.

2 Aims of the session Provide an overview about illness narratives From an anthropological perspective (social and cultural anthropology / medical anthropology) With a focus on qualitative health research

3 What is an illness narrative?

4 Anthropology, ethnography, narratives Studying the human being Classical anthropology: studying The Other. Foreign cultures/societies. Anthropology At Home: studying in/within our own society and cultural context. Western context. Cross-cultural studies How? Through narratives

5 How can ethnography contribute to the study of health and illness? Of interest for health research: Sociology of health and illness Social determinants of health Culture, illness and health Local and global health How? Through illness narratives

6 Narratives OR ILLNESS narratives? Accounts, stories, around the experience of being ill friends work illness hobbies family narratives

7 What s an illness narrative? Accounts, stories, around the experience of being ill that tell us about: perceptions values beliefs experiences Individual and social experiences concerning health and illness expectations feelings thoughts

8 Illness narratives Forms of narratives: Fiction (literature, film,...) Non-fiction: Oral account (interview) Written account (diary, blog, ) Lay people Professional writers (self-help books, autoethnographies, ) Involve different actors/perspectives/views: People with illness TEXT AS A CULTURAL EXPRESSION Close relatives/friends (loved ones, significant others) / others Health professionals

9 Illness or disease?

10 Illness Illness, sickness and disease Subjective perception. Personal experience of illness and suffering. Sickness Social perception. Social and cultural attributions/response to illness and/or disease. Disease Objective perception. Medicine. Pathological or biological condition. Physical body. Illness without disease, disease without illness Kleinman, A., Eisenberg, L., & Good, L Culture, illness, and care: Clinical lessons from anthropologic and cross-cultural research. Focus, 4,

11 Illness narratives: at home Bla bla bla Bla bla ble

12 Clinical encounter Bla bla bli

13 Medical records / Doctors notes Are medical records an equivalent of patients illness narratives? to be responded later

14 Social encounter Family, friends, co-workers, others Bla bla blo Bla bla bli Bla bla bla

15 Ethnographic encounter The anthropologist the researcher Bla bla blo Bla bla bla Bla bla bli

16 How to explore illness narratives? Kleinman - Explanatory models of illness What do you think has caused your problem? Why do you think it started when it did? What do you think your sickness does to you? How does it work? How severe is your sickness? Will it have a short or long course? What kind of treatment do you think you should receive? What are the most important results you hope to receive from this treatment? What are the chief problems your sickness has caused for you? What do you fear most about your sickness? Adapted from: Kleinman, A., Eisenberg, L., & Good, L Culture, illness, and care: Clinical lessons from anthropologic and cross-cultural research. Focus, 4,

17 What do we pay attention to? What people say (think, believe, feel, perceive ) What people do not say What people say they do What people do Bla bla blu

18 Explanatory Models of illness: what for? Eliciting the patient s (explanatory) model gives the physician knowledge of the beliefs the patient holds about his illness, the personal and social meaning he attaches to his disorder, his expectations about what will happen to him and what the doctor will do, and his own therapeutic goals. Comparison of patient model with the doctor s model enables the clinician to identify major discrepancies that may cause problems for clinical management. Such comparisons also help the clinician know which aspects of his explanatory model need clearer exposition to patients (and families), and what sort of patient education is most appropriate. And they clarify conflicts not related to different levels of knowledge but different values and interests. Part of the clinical process involves negotiations between these explanatory models, once they have been made explicit. (Kleinman et al, 2006:147)

19 Understanding illness narratives 1 Sender-Message-Receiver Sender: ill person / sick person/ patient Aim / Intentionality / Purpose Why telling the illness story? Time When? Place Where? Actors involved To who? Role / Relationship / Power / Knowledge What? and How? (information control) Sociocultural context Personal characteristics (age, gender, etc.) Personal circumstances (feelings, health perception, etc.)

20 Understanding illness narratives 2 Sender-Message-Receiver Professional receiver: health professional / researcher Aim / Purpose Why listening to the illness story? Time When? Place Where? Actors involved Who? Role / Relation / Power / Knowledge How to listen? Empathy, sensibility, respect How to read? Analytical framework Sociocultural context Personal characteristics (age, gender, etc.) Personal circumstances (feelings, health perception, etc.)

21 Narrative example diabetes 1 When they tell you [diagnosis] it is like a slap in your face, my world collapsed. It is not oh, ok, I have diabetes as meaning we know what it is and what it entails, she has to monitor sugar, she has to do moderate exercise, she has to maintain a balanced diet, that s all. No, no, no. What do you mean by THAT S ALL? Has anyone wondered what does that ALL mean? What does ALL this mean REALLY? (Laura) [oral emphasis in capital letters] Medical records: Denial, anger. Non acceptance of diagnosis. Anxiety. Need psychological counselling to adjust/accept to disease.

22 Narrative example diabetes 2 The diabetic nurse told me about the food but no I am not I am not going to eat lettuce all day. She wants to take all the good things off so no, I will not do that. (Tim) Medical records: Non compliance with diet recommendations. Not wanting to change diet.

23 Medical records / Doctors notes Are medical records an equivalent of patients illness narratives? NO!

24 How can we transform medical records into an equivalent of patients illness narratives? Doctors treat diseases Doctors need to be reminded about paying attention to illness experience and narratives Clinicians can perform a miniethnography (Kleinman & Benson, 2006)

25 Other genres of illness narratives... Autobiographies and self-help books Autoethnographies (Frank, 1991, 1995) Pathographies (Hawkins, 1999) Narrative medicine (Charon, 2001)

26 Conclusions Why we need illness narratives for qualitative applied health research? To understand illnesses experiences from an holistic perspective To learn patients needs/preferences To improve clinical encounter To facilitate informed decision-making To help illness/disease self-management To understand health programmes/implementations failures To help designing interventions

27 References 1 Illness narratives: Kleinman, A The Illness Narratives: Suffering, Healing, and The Human Condition. New York: Basic Books. Kleinman, A. & Benson, P Anthropology in the Clinic: The Problem of Cultural Competency and How to Fix It. PLoS Medicine, 3(10): Kleinman, A.; Eisenberg, L. & Good, B Culture, illness, and care: Clinical lessons from anthropologic and cross-cultural research. Focus, 4, Autoethnographies/Illness narratives: Frank, A. W At The Will of The Body. Reflections on Illness. Boston: Houghton Mifflin Company. Frank, A. W The Wounded Storyteller - Body, Illness and Ethics. Chicago: University of Chicago Press.

28 References 2 Narrative methods: Riessman, C Narrative Methods for the Human Sciences. CA, USA: SAGE Publications Narrative medicine: Charon, R Narrative Medicine: form, function and ethics. Annals Internal Medicine, 2; 134(1): Charon, R Narrative Medicine: Honoring the Stories of Illness. Oxford: Oxford UP. Pathographies: Hawkins, A.H. (1999) Reconstructing Illness: Studies in Pathographies. West Lafayette. Purdue University Press. *Images used from: Google images, free access.

29 Thursday, 9 th February 2017 Thank you! Dr Lina Masana L.Masana@leeds.ac.uk lina.masana@gmail.com Lina Masana University of Leeds This work is made available for reuse under the terms of the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International Licence.