Dr. Blaine Robin MSc, PhD [ Occupational Therapist & Sociologist ]

Undergraduate seminarAll Saints University, Roseau, Dominica

11th June 2015

“ The importance for Medical Professionals in appreciating the cultural background of patients (including race and ethnicity) when assessing the needs of patients ”.

Why is this important to medical professionals?

- Reduce prejudicial and stereo typical ideas and therefore build a better form of mutual respect between people.

- Build a better understanding of cultural values of a particular group of people (e.g. Lupus Sufferers; HIV Aids sufferers; E Bola sufferers).

- Move towards a new professional paradigm of doctor to patient interactions

Professor Paul Farmer

Dr. Paul Farmer, physician and anthropologist, is chief strategist and co-founder of Partners In Health, Kolokotrones University Professor and chair of the Department of Global Health and Social Medicine at Harvard Medical School, and chief of the Division of Global Health Equity at Brigham and Women’s Hospital in Boston. He also serves as U.N. Special Adviser to the Secretary-General on community-based medicine and lessons from Haiti. Farmer has written extensively on health, human rights, and the consequences of social inequality. His most recent books are In the Company of the Poor: Conversations with Dr. Paul Farmer and Fr. Gustavo Gutiérrez, Reimagining Global Health: An Introduction, and To Repair the World: Paul Farmer Speaks to the Next Generation.

Professor Arthur Kleinman

Medical anthropology, social suffering, mental health, stigma, subjectivity, moral experience, and caregiving, Reimagining Global Health, a book on subjectivity in China with his former students (Deep China. 2012, UC Press), and a book on moral life in China (Governance of Life in Chinese Moral Experience. 2011, Routledge),What Really Matters: Living a Moral Life Amidst Uncertainty and Danger (OUP, 2006), Writing at the Margin: Discourse between Anthropology and Medicine (UC Press, 1995), and The Illness Narratives: Suffering and on culture, bereavement and psychiatry. He has co-authored articles on stigma and mental illness; on the appropriate uses of culture in clinical practice; and on medical anthropology.

Aims of the presentation

1. To take today’s audience through the journey I made as a researcher to understand the lives of people with a common medical diagnosis.

2. To go through an abridged version of chapter 4: Research Methods from my publication – The Politics of Lupus.

3. To describe some of the challenges I experienced – both subtle and demanding – and how I overcame this.

4. To summarise the issues

Commence Presentation

Defining Ethnography

Ethnography: scientific description of the culture of a society bysomeone who has lived in it, or a book containing this: One of the aimsof ethnography is to contribute to an understanding of the humanrace. Malinowski wrote several ethnographies of the TrobriandIslands.

(http://dictionary.cambridge.org/dictionary/british/ethnography?q=Ethnography. Date accessed: September 2014).

Four modes of enquiry

Qualitative Data Analysis techniques used?QDA techniques included:

• Line - by - line coding • Thematic analysis• Constant comparison and • Framework tables

(cf. Miles and Huberman 1994, Braun and Clarke 2006, Glaser 1978).

The author as ethnographer

As an ethnographer I became the instrument of data collection.

‘[T]he self must not only be offered, it must be accepted’ (Goffman 1979 p 41).

[Implications: Practical examples – professionals that use immersion/infiltration; the need for reflection, debriefing & supervision]

Uncovering the issues

Line by Line coding

Framework Tables

Thematic Analysis

What is going on in their lives?

Event1a. Evaluation of activity e.g. previous nights sleep1b. Positive and negative outcome1c. Negative personal experience e.g. unusual symptoms1d. Multiple Events and Overload Event

Strategy2a. Idea2b. Psychological planning2c. Support from spouse e.g. maintaining sense of Humour2d. Carer struggling to cope2e. Positive interaction with others2f. Use of Equipment2g. Exercise2h. Being 2i. Yielding to the symptoms passive

Remaining objective: A grief observed

The death of a lupus sufferer - resilient mentality as resistance

Mixed narratives

Death and dying

What can we learn from bad practice and how can we go forward?

Social context of dying

On reflection the process of dying had commenced weeks before the my mother finally died. For me it comprised increasing moments of dependency on other people to perform routine dignity tasks of feeding, washing and toileting. She was unable to self-toilet to pass faeces or urine. She lay on her back with large pressure sores on her buttock, which often came into contact with urine and faeces.

She relied on a “male” catheter to pass her urine and her body had to be turned in order for her pads to be removed and changed without damaging the injured skin surrounding the site of the pressure sores. In addition she became unable to press the call alarm for help and assistance. The encroaching social death in mum’s situation was a precursor to actual physical/biological death (cf. Mulkay 1993). This process of social death began to appear to me as a series of power plays between others and mum. This began as others began to take control of mum’s body.

Heroism in dyingFor me mum never lost the respect of her children. She never became less of a mother because she was in an advanced state of illness. If anything they counterbalanced for her gradual loss of function, by ensuring that they remained committed to her state of personhood in the presence of themselves and others thus displaying how they would expect others to behave in her presence at this time. Mum was a heroine to her children (cf. Seale and Cartwright 1994). When required they cared for her and tended to her as if they were nurses, without shame, embarrassment or any other reservations. She deserved this status.

Linking evidence to practice

From Report of the Mid Staffordshire NHS Foundation Trust Executive summaryReference: First inquiry in hospital related deaths (2005 – 2009)The first inquiry heard harrowing personal stories from patients and patients’Families about the appalling care received at the Trust. On many occasions, theaccounts received related to basic elements of care and the quality of the patientexperience. These included cases where: Patients were left in excrement in soiledbed clothes for lengthy periods; Assistance was not provided with feeding forpatients who could not eat without help; Water was left out of reach; In spite ofpersistent requests for help, patients were not assisted in their toileting; Wards andtoilet facilities were left in a filthy condition; Privacy and dignity, even in death, weredenied; Triage in A&E was undertaken by untrained staff; Staff treated patients andthose close to them with what appeared to be callous indifference.p.13 Francis, R (2013) Publisher: London - The Stationery Office

Thank you

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