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MEDICINE and CULTURE

From disease to illness and back again

What is the value of medical anthropology? Let me begin by recounting a story. I was working in Handsworth in Birmingham, UK, at the time of the riots in 1986. The riots were first thought to be directed against the mainly white police force, and against local shops and businesses. One local psychiatrist even argued, in evidence to the Government-initiated Silverman inquiry, that the riots were the work of cannabis-intoxicated young Afro-Caribbean men.! However, the inquiry suggested that the rioters were white and Afro-Caribbean men in numbers proportional to the local population. Some women and a few young men of Asian origin were also involved. The eventual consensus was that the disturbances were not racially motivated but were a result of the frustration of unemployed people who lived in a ghetto area and who had destroyed their own neighbourhood in despair. Four days after the riots ended, I was telephoned by a local (Asian) general practitioner (GP) who asked me-a white male hospital psychiatrist-to visit a 15-year-old girl from Bangladesh. She had been in Britain for two years, lived with her family, spoke English well, and attended the local mixed secondary school. She was, he said briefly,

hysterical. The streets were still full of debris being cleared up. Many shops had been burned down, and those that remained had shutters still up or boards nailed across windows to prevent further looting. Police had withdrawn to a discrete distance, and people were gathering on pavements to assess the damage. Life was cautiously re-establishing its pattern. Around the comer I found the house. The family warily opened the door. I introduced myself. Hasmat (as I shall call her here) was in the downstairs room lying on the floor, eyes closed, occasionally thrashing about with her arms and legs, and shouting something neither the family nor I could understand. Her parents stood helplessly, placing cushions under her head, holding her hands, and trying to calm her down. Occasionally, she got up and quietly joined the others but seemed oblivious to what was happening. She assured us that she was well, was puzzled by our concern, but refused to eat. She would then collapse back onto the floor. Her father told me that she was seriously ill with fits and he was glad I had come to take her to hospital. He was distressed but also, I thought, angry. Her elder brother took me aside and told me that Hasmat "was putting it on" because she had been arguing with her father for months about going out in the evening with her schoolfriends. After greeting Hasmat, I asked her father what they had done to help her. Reluctantly, he told me that he had taken his daughter to the mosque when she had started talking strangely (the GP had told the father off for such

"nonsense"). He said that someone at the mosque had spoken Koranic verses over her to make the spirit leave but this action had failed since she was genuinely ill. Perhaps the spirit had left her sick. Had the family lost anything in the riots? No, and no-one they knew had been hurt. I persisted. Could the riots possibly be the cause of Hasmat’s distress? He said no: how can riots, however terrible, just by themselves make people have fits? I thought he was probably right and asked the family to leave. I explained that I wanted to talk with Hasmat alone. Standard medical practice. I told her I guessed she was upset by something. She gazed at me, past me, blankly, detached. I felt uncomfortable, somehow embarrassed. She asked me to promise to keep a secret. I agreed rather reluctantly. If I was a doctor, she said, shouldn’t I now examine her? I declined. What had happened? She told how, on the morning after the riots ended, she and her brother’s young wife had secretly unpadlocked the door-her father had secured it firmly from the inside when the looting spread down a nearby road-and had gone out to have a look "for fun". Terrified at the devastation, they had returned immediately without anyone else in the family knowing. She had seen a boy from her school and thought he might attack her. Back in the house she had "felt dizzy". That was all. Could I now tell her father that she was sick, but it was not serious, and she could not possibly go to hospital? I invited the family back into the room and told them that Hasmat had become ill because of the awful events locally, but that she would soon be well without any medicine. What was the sickness then? The best that I could come up with was that she was "weak". They looked nonplussed. I suggested she now had something to eat and said I would call again the next day with a colleague, a Bengali community worker. That afternoon I was telephoned by the GP who reported that Hasmat seemed much better after my visit. He had reinforced my advice but the family felt let down because I had not seemed very interested: no treatment, no hospital. He had given her some sleeping tablets to keep everybody happy, "a placebo for the whole family" as he put it. The next day the father left a message for me at the hospital: his daughter was much better and she did not need to see a psychiatrist or community worker again. I tried unsuccessfully to arrange another appointment. The GP subsequently told me that everything was back to normal, and I forgot about the whole business. About two months ADDRESS: Centre for Medical Anthropology, University College, Gower Street, London WC1E6BT, UK. Correspondence to Dr R. Littlewood (DPhil, MRCPsych)

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later I was contacted by the West Midlands poisons unit for details of my patient who had just taken an overdose of tablets. I am not going to offer a "solution" here. I merely want to illustrate the choices and identifications that are available in different explanatory models of illness and distress, each with their own personal experiences and their own social ideologies. Mine must be included-a white male doctor with my own assumptions about gender and ethnicity, preoccupied with the riots, and involved in and controlling (in some part) the process.

Illness and disease The common approach to an individual such as Hasmat is reach a formal diagnosis—eg, hysteria, with a note about "cultural conflict", and some poorly informed speculation about Islamic family values. And then? Either clinical despair or some attempt to persuade the family to accept our interpretation of these events in terms of "depression" or "generational conflict". Doctors may not be inclined to take any of the family’s explanations seriously apart from that of the elder brother who suggested that Hasmat was "putting it on".2 Is this case merely an example of family tensions that should have been left to sort themselves out? Hasmat herself moved towards a more medical solution, an overdose of medically prescribed drugs with subsequent hospital admission. Some family members suggested that she required skilled biomedical intervention. The cultural and political interpretation of the episode is a product of my own perceptions: should Hasmat have been admitted to hospital straight away with ethnicity, personal preoccupations, and to

Fig 1-Mammography, a preventive medical technique widely adopted by the western world.

now

such as driving after drinking alcohol, unprotected sex in an era of AIDS, or cigarette smoking, they need to examine the ways in which risk is perceived, and how wider social values or institutions reinforce or create the way in which choices are made.4 behaviours

Medical

It is no accident that the greatest interest in social science within medicine is found among psychiatrists. Psychiatry is the most self-doubting specialty: it is concerned with the ambiguities of the social practice of medicine. Extreme clinical presentations such as overdoses or Munchausen’s syndrome mark the edges. These instances show our difficulty in distinguishing between an understanding of the patient in "naturalistic" terms-as a physical body, subject to disturbances that can be interpreted and controlled through methods similar to those used in the physical sciences-or the "personalistic" understandings that we apply to everyday life where we acknowledge personal qualities such as memory, reflection, anticipation, and

anthropology Western societies face striking changes in their patterns of sickness and health. Ironically, the success of biological medicine has produced a patient population who live longer, but who have chronic and non-life-threatening disease. It is doubtful whether these improvements in health over the past century can really be attributed to medical knowledge.5 What are the cultural and moral understandings of notions such as sickness and mortality? When ill, how do we attempt to answer the question "why me?". Dissatisfaction with what is popularly regarded as excessive medical emphasis on disease (the biological understanding of sickness) has led increasing numbers of patients to seek health care from complementary medicine, self-help groups, or through overtly political perspectives such as the womens’ health movement.6 Psychotherapy and counselling services have expanded in forms ranging from Californian "New Age" theories and neurolinguistic programming to established psychoanalytical therapy. Increasing numbers of nurses and medical professionals are training in various non-western medical practices—eg,

responsibility. Medical anthropology provides a rigorous basis for the social interests of psychiatry that have remained a marginal discipline within medicine. Psychiatric assessment involves the taking of an extensive social history followed by interpretations similar to those applied in the social sciences. But it is only in extreme instances that doctors call for a psychiatrist. Most doctors muddle along and assume that a patient’s perspective is similar to ours, or that the patient will follow our professional advice. Occasionally, we target undesirable illness-related behaviour, unhealthy diet, or lack of exercise through fragmentary attempts at persuasion. Whether in health education policy or in individual patients, doctors know little about a person’s knowledge of sickness and health, in any class or culture. These questions are not asked. If medical anthropology has its own impulse, it is to encourage understanding of patients’ own illness experiences, the way in which they view their sickness and health,3 and the context in which such beliefs originate and continue. If doctors seek to change high-risk

Fig 2-An Indian street-side homoeopath practice.

family context ignored?

now

with his portable

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acupuncture and Naikan-while hospital medicine is

now

recognise the skills of chiropractice and hypnotherapy. Religious movements offer "spiritual" more

prepared

to

alternatives. Black and ethnic minorities are often dissatisfied with medical services available to them, notably in the area of mental health where certain illnesses-eg, schizophreniaare diagnosed disproportionately among minority groups and where culturally sensitive therapies have yet to be offered.’ If some minority group members, like Hasmat, are moving towards reframing their experiences in a more medical direction, probably with the encouragement of the medical profession, others may see their illness in political terms. Traditional ideas of family responsibility or illness causation are often met with little sympathy in clinical departments, and health education programmes both in western countries and the developing world are limited by an inadequate understanding of popular beliefs of sickness and health. What do these changes mean for the future? Is our society entering a pluralistic market-place for health care or are there important underlying long-term changes in the patterns of health-care uptake. Medical anthropologists have become established as a recognised group within social anthropology. They concentrate on individuals’ own experience and understanding of illness, and relate these beliefs to society’s core values, their symbolic representations of power, chance, and misfortune, and to gender relations, social structure, and values of communities. In summary, medical anthropologists apply a more "holistic" approach.8 The traditional emphasis within anthropology on smallscale and non-literate societies has shifted, with a recognition that we live in an inter-connected world. All systems of medicine have powerful and shared symbols and metaphors, whether the white coat and high technology image of modem medicine (fig 1), or the no less ritualistic equipment of the shaman or Unani practitioner (fig 2). Both are certainly pragmatic-they are seen to work-but both also embody shared social concerns that make them

acceptable.

Clinically applied anthropology We know very little about popular understandings of sickness in any culture. To the doctor, lay explanatory models of sickness are characterised by "vagueness, multiplicity of meanings, frequent changes, and lack of sharp boundaries between ideas and experience." In contrast, professional medical theories presume "single causal trains of scientific logic". However, studies by medical anthropologists suggest that this division is not found throughout clinical practice.9 Psychiatrists and primary carers will not be surprised to learn that their own understanding of illness includes "multiple and manifestly contradictory models"—behavioural, biochemical, psychodynamic, and sociologica1.1O Medical anthropology applies data from different contexts to assess social as well as biological causation and can redirect traditional epidemiological research. Ethnographic studies focus on a community lived in by an anthropologist, usually for a year or more, although the term "ethnographic" often refers to any participant observation. Although the field-work approach is often purely qualitative, with enhanced validity but diminished reliability, these studies lead to more epidemiological approaches that use conventional sampling procedures,

questionnaires, and rating scales.

Participant-observation studies have looked at how patients understand psychotropic drugs; they have patterns of child abuse and relatives’ understanding of schizophrenia, and have investigated the pattern of life of chronically ill patients. An anthropologically informed medicine can support the interests of ethnic minorities through collaboration with lay healers or through research initiated at the request of community groups. Doctors know little of the importance of illnesses such as Jacob-Creutzfeldt disease and AIDSrelated dementia for groups in which they are more common; or how families with thalassaemia, Huntington’s disease, or Tourette’s syndrome view their illness and its transmission. How do such families conceive of what we call genetic transmission? An anthropological viewpoint may help in assessing the lives of institutionalised psychiatric patients who are now being placed in the community, especially since ethnographic studies were originally cited as justification for deinstitutionalisation. Medical anthropologists may act as advocates for the patient’s perspective and values. In the US, the clinical work of anthropologists has become part of a move to patient-centred medicineY Detailed accounts of how patients’ understand their illness can radically assist examined

patient-doctor negotiation over appropriate treatment. Anthropology is especially valuable in psychosomatic medicine, where divergence between the explanatory models of patient and doctor are commonplace. An anthropological perspective enables the liaison psychiatrist to reduce staff-patient conflicts by clarifying the meaning of their respective explanatory models 9 In nursing, anthropology can operationalise such diffuse but powerful notions as empathy and care.12 Clinically applied anthropology is helpful to psychiatrists who take part in liaison consultation, individual psychotherapy and cognitive therapy, and group and milieu work on psychosomatic wards. On the psychosomatic ward at University College Hospital each patient completes an "explanatory model questionnaire": the patient’s perspective then becomes the basis of negotiation and audit in ward rounds and in individual nurse-patient work. Many of these patients have had a long and tortuous relationship with the medical profession that itself becomes part of their model of responsibility and causality. Medical anthropology is congenial to doctors because of its interest in clinical practice and biological explanation, and because of its concern with the patients’ experience of becoming i11.13 It is also mercifully almost jargonfree. And Hasmat? Although I was reluctant to offer a solution, her condition improved once both her and her family’s idiom of distress was taken seriously. I wish to thank Mr Philippe Plailly and the permission to reproduce photographic material.

Science Photo

Library for

REFERENCES

Community initiated research: a study of psychiatrists’ conceptualisations of ’cannabis psychosis’. Psychiatr Bull 1988; 12:

1. Littlewood R.

486-88. 2. Kleinman A. The illness narratives: suffering, healing and the human condition. New York: Basic books, 1988. 3. Kleinman A. Patients and healers in the context of culture. Berkeley: University of California Press, 1980. 4. Douglas M. Risk acceptability and the social sciences. London: Routledge and Kegan Paul, 1985. 5. McKeown T. The role of medicine: dream, mirage or nemesis. London: Nuffield Provincial Hospitals Trust, 1976.

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6. Thomas KJ, Carr J, Westlake L, Williams BT. Use of non-orthodox and conventional health care in Great Britain. Br Med J 1991; 302: 207-10. 7. Littlewood R, Lipsedge M. Aliens and alienists: ethnic minorities and psychiatry. London: Unwin Hyman, 1989. 8. Helman C. Culture, healh and illness. 2nd ed. London: Wright, 1990. 9. Good BJ, Good M-JD. The semantics of medical discourse. In: Mendelsohn E, Elkand Y, eds. Science and cultures: sociology of the sciences, vol 5. Dordrecht: Reidel, 1981.

Eisenberg L. Disease and illness: distinctions between professional and popular ideas of sickness. Cult Med Psychiatry 1977; 1: 9-23. 11. Chrisman NJ, Maretzki TW, eds. Clinically applied anthropology Dordrecht: Reidel, 1982. 12. Holden P, Littlewood J, eds. Anthropology and nursing. London Routledge, 1991. 13. Littlewood R. From categories to contexts: a decade of the ’new cross-cultural psychiatry’. Br J Psychiatry 1990; 156: 308-27 10.

PUBLIC HEALTH Community control of scabies: a model based on use of permethrin cream

For 18 years treatment with lindane or crotamiton products has failed to stem the epidemic of scabies among the Kuna Indians in the San Blas islands of the Republic of Panama. Permethrin 5% cream was introduced as the only treatment in a programme to control scabies on an island of 756 inhabitants and involving workers recruited locally. Prevalence fell from 33% to less than 1% after every person was treated. As long as continued surveillance and treatment of newly introduced cases was maintained, prevalence of scabies remained below 1·5% for over 3 years. When supply of medication was

interrupted for 3 weeks, prevalence rose to 3·6%.

lost after the US invasion of rose to 12% within 3 months. skin Bacterial infections decreased dramatically when scabies was controlled. Permethrin is safe and effective even in areas where this disease has become resistant to lindane.

When control

was

Panama, prevalence

Introduction The San Blas archipelago off the Caribbean coast of Panama comprises some 360 islands, of which 66 are populated by the Kuna Indians. Scabies, a disease not previously known among the Kuna, was introduced in 1973-74. The infestation spread rapidly, and by 1976 all communities were affected. In 1975, we undertook a programme to control scabies on an island in the San Blas archipelago inhabited by 208 people, all of whom were treated head-to-toe with 1% lindane lotion (’Kwell’). Scabies was eliminated and controlled during 5 years of continued surveillance and treatment of new cases. On a neighbouring island, where only those with visible scabies were treated, prevalence was reduced by 50%, but returned to pretreatment levels within 6 months. A year later we treated scabies with 1 % lindane on an island with 2076 inhabitants, 70% of whom were infested.2 About half the population remained untreated because of lack of funds, and scabies returned to every

household within a year. From these attempts to control scabies we concluded that: "treatment of individual patients without regard to community epidemiology is time consuming, and unlikely to have a significant impact in epidemic situations."2 Scabies in Panama is increasingly resistant to lindane, but 5% permethrin cream (’Elimite’ Burroughs Wellcome) is safe and effective.3,4 In July, 1986, we launched the programme described here to control scabies with permethrin on the island of Ticantiki (Niadup). An essential component of the programme was to place management in the hands of the local community, with our role limited to planning, education, and evaluation of success. The study was conducted under the auspices of the Ministry of Health, Republic of Panama, and the Field Epidemiology Survey Team (FEST), University of Miami School of Medicine, Florida. Finance for the programme and drugs were provided by Burroughs Well come, USA.

Methods We wished to devise a programme which would be a useful model for others attempting to control scabies. Ticantiki was chosen because we had not worked previously with the population, had no contact with community leaders, and no facilities were available. The healthcare provision was a small health post with minimal facilities staffed by a local Kuna medical auxiliary. Permission for the study was granted by the village council, the local health committee, and the regional director of health. An abandoned building was fitted with furniture, a water supply, and an outdoor latrine. Solar-energy lighting and a water purification plant were installed. Throughout the programme only two FEST members were allowed on site at anv one time to preserve the concept of a community-based programme. The island was surveyed by aircraft and a map prepared showing

Department of Dermatology and Cutaneous Surgery, (Prof D Taplin, T L Meinking, BA, S L Porcelain, MPH, R L Athey, BA); and Department of Epidemiology and Public Health (Prof D. Taplin, S. L. Porcelain), University of Miami School of Medicine, Miami, Florida, USA; and Sistema Integrado de Salud de San Blas, Ministry of Health, Republic of Panama (J. A Chen, MD, P M. Castillero, MD, R Sanchez, MD) Correspondence to Prof D Taplin, Department of Dermatology and Cutaneous Surgery University of Miami, PO Box 016960, R-117, Miami, FL 33101 USA ADDRESSES:

From disease to illness and back again.

1013 MEDICINE and CULTURE From disease to illness and back again What is the value of medical anthropology? Let me begin by recounting a story. I w...
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