Ian Hodgson

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Bradford, UK

Explanatory models and HIV

 

Culture, meaning and perceptions: 

explanatory models and the delivery of HIV care

Please cite this page thus: Hodgson, I. (2000) - Culture, meaning and perceptions: explanatory models and the delivery of HIV care. Abstract MoPeD2772, XIIIth International AIDS Conference, Durban, South Africa, July 14th-19th.

Abstract

Issues: Explanatory models of illness have been considered in a large number of culture-focused studies, in general health, and with reference to HIV. Located in both the developed and developing world, these studies traditionally focus on the experience of clients, and demonstrate the role of culture in shaping a persons' construction of the meaning of illness and disease. In the case of HIV, insights into a person's perceptions of risk have been especially valuable.
Description: Equal consideration, however, needs to be given to the context of carers engaging with this client group, but not infected with the virus. Cultural frameworks, useful in dealing with new or threatening situations, are instrumental in shaping responses to HIV and AIDS in carers as well as service users. In the developed world for example, HIV is one of the first incurable infectious diseases for a generation, and this fact alone is likely to be a key contributory factor underpinning the many studies suggesting attitudes towards people with HIV are negative. These attitudes are likely to be rooted in instinctive self-protective mechanisms (in an exaggerated fear of contagion, perhaps), and perpetuate beliefs about the 'body' and 'society' that are unable to disengage from a construction that neglects the needs and rights of the individual client, seeing instead a perceived danger to the collective.
Focus: Cultural beliefs are articulated in narratives from the distant and recent past that still play a primary role in our 'modern' world. Often superseding objectivity and moral imperatives, these are a useful 'window' into the architecture of a culture's value system, and can provide important insights into the content of explanatory models of illness.
Conclusion: This presentation will propose a new model, derived from a review of relevant cultural narratives, which will assist in the understanding of the culture of HIV care, and carers' explanatory models of the HIV. It will emphasise that an awareness of these underlying frameworks in the health care milieu is essential. Recommendations will be made as to reducing the dissonance between professional and client, often rooted in cultural conflict and close to Michel Foucault's 'medical gaze', and assist in the development of an appropriate context of care for people with HIV.

1. Centrality of culture

Culture dominates our lives; it forms the framework within which we understand and make sense of the world. It is variously defined, but the most useful states that culture is the acquired knowledge people use to interpret experience and generate behaviour (Spradley, 1980). A broader definition is: 'a set of guidelines…which individuals inherit as members of a particular society, and which tells them how to view the world, how to experience it emotionally, and how to behave in it in relation to other people, to supernatural forces or Gods, and to the natural environment' (Helman, 1994, p 2).

2. Explanatory models

Cultures, in making sense of illness, have clusters of explanatory models, the lenses through which cultures perceive and understand illness. First developed by Arthur Kleinman (1980), the term refers to interpretive notions about an episode of sickness and treatment that are employed by all those engaged in the clinical process. Importantly, both carers and patients utilise explanatory models extensively.

In particular, explanatory models address 5 aspects of illness:

· the cause of the condition
· the timing and mode of onset of the symptoms
· the pathophysiological processes involved
· the natural history and severity of the illness
· appropriate treatments for the condition

According to Kleinman, non-professional explanatory models tend to be idiosyncratic, changeable, and heavily influenced by cultural and personal factors. In a discussion of explanatory models, Helman suggests that medical explanatory models are 'based on single, causal chains of scientific logic' (1994, p111).

3. Explanatory models and HIV/AIDS

HIV and AIDS are complex and frightening phenomena, and explanatory models provide a toolkit to bestow some degree of meaning. This absorption of new phenomena into existing models is significant, and many studies have demonstrated this process of integration (e.g. Mogensen, 1997; Bechtel and Apakupakul, 1999).

Explanatory models, in this case adopted by health care workers in the West, are equally subject to 'rules of thumb' that appear at odds with scientific orthodoxy. Within the context of sophisticated health care systems, the role of cultural narratives, in the form of myths, are powerful engines in the shaping of explanatory models, and even a cursory literature review of the perceptions of HIV held by health care workers reveals that extant narratives are providing the basis for some of the more prevailing institutionalised representations informing explanatory models. These can be classified into:

  • notions about the infected - the need to know who is infected with HIV is strong (Akinsanya and Rouse, 1992), and is part of a broader group of narratives about infiltration and treachery - including the Trojan Horse story and mediaeval stories of Satanic mutability, to the ubiquitous Harry Potter stories. This need to know is also fed by paranoia and the hidden discourse of the person with HIV wishing to 'do harm'.
  • just punishment - the notion that illness is 'sent' as a punishment for some previous misdemeanour is ancient. The inverse of this, of course, is that perceived personal morality is seen as providing protection from infection (Nemeroff, Brinkman et al., 1994).
  • contagion - amplified fears of infection are one of the commonest and confused aspects of explanatory models for HIV, and many studies describe an exaggerated fear of infection amongst nursing staff (e.g. Akinsanya and Rouse, 1992; Burtis and Evangelisti, 1992; Hettiaratchy, Baines et al., 1997; Fusilier, Manning et al., 1998). Narratives describing situations in which HIV could spread through routes in addition to the 'orthodox' are widespread - the film Philadelphia (1993) illustrates this well.

4. A suggested framework

Health care interventions must be culturally adroit in order to have any chance of success (Dowsett, 1999), and this paper proposes a model that allows a critique of explanatory models according to two criteria: proximity to a context promoting physical safety (i.e. protection from infection); and proximity to a context promoting cultural safety (respect for the person). The structure is derived in part from the grid-group model developed by Douglas (1996/1970). See model below in fig. 1.

4.1 - The framework

Axis 1: this represents the degree of proximity to accepted notions of physical safety, based on what is known about HIV and modes of transmission.

Axis 2: this represents the degree of proximity to cultural safety - recognising and respecting the unique cultural identity of individuals (Kolaschek, 1998). This pertains to sensitivity to a person's social and cultural context, and is inversely related to the dominance of the institutionalised, Western explanatory models identified in section 3 above.

4.2 - The quadrants

Quadrant 1 : Pure biomedical position

Here, physical safety is maximised; scientific knowledge and information regarding safe behaviour is clear. The power of biomedicine is dominant, for knowledge of the physical body is extensive, and Foucault's 'medical gaze' is a reality. For Foucault, knowledge [in this case of the body] is power, and the transition of the person-as-individual to person-as-disease is an example of scientific objectivity meeting the 'naked individual' (Foucault, 1973). Tolerance of individual behaviour is likely to be low, because of an inability to 'listen' to alternative narratives - cultural safety is therefore at a minimum.

Quadrant 2: The 'popular' position

Here, physical safety is compromised - the accuracy of information regarding protective behaviour is poor, with flawed information regarding the virus being disseminated, often as an exaggerated fear of contagion. In addition cultural safety is also jeopardised - this is the position taken by the 'popular' (tabloid) press, where groups at risk of HIV are ostracised, and narratives conform to the prevailing cultural norms of blame and panic. The power of the Western institution remains, though the value of quadrant 1 (physical safety) is lost.

Quadrant 3: The 'individual/relativist' position

Here, physical safety remains compromised, though the threat to cultural safety is diminished, with the move away from institutionalised representations. Explanatory models in this quadrant are likely to be promulgated by people within social groups who may be at a higher risk of being infected with HIV, but choose to be selective about their risk of infection. Nemeroff (1995) suggests that certain people perceive HIV as socially discriminating - they know the risk factors, but consider that it does not apply to them.

Quadrant 4: The competent position

In this quadrant, both physical safety and cultural safety are maximised. Safe behaviour, and a consideration culture leads to cultural adroitness in health care interventions, coupled with a sure knowledge of maximising protection from infection. This is clearly the recommended location of the enlightened health care worker, who is sensitive to alternative understandings of sexuality generally, and HIV in particular.

5. Conclusion

  • Explanatory models are the lenses through which people can make sense of illness, and are informed by powerful narratives, that serve to locate the models within milieu that can be either aware of cultural diversity by viewing the body as context, or as prescriptive modes that view the body as system
  • Narratives that provide a rich source of material for explanatory models in both professional and lay groups.
  • Taken for granted assumptions of our culture-bound lenses should be challenged; mystical objects (constructed from narrative) that do not exist, such as 'evil doers' and 'contagion via touch', should be deconstructed - perhaps we should try and comprehend our own lives from the inside 'as an anthropologist might from the outside' (Dowsett, 1999, p96).
  • To function appropriately, it is recommended that health care workers be aware of cultural diversity, and eschew a search for universal patterns of 'risk taking' (ibid.)

References

Akinsanya, J. & Rouse, P. (1992). Who will care?: A survey of the knowledge and attitudes of hospital nurses to people with HIV and AIDS. Journal of Advanced Nursing 17(3): 400-401.
Bechtel, G. & Apakupakul, N. (1999). AIDS in southern Thailand: stories of krengjai and social conditions. Journal of Advanced Nursing 29(2): 471-475.
Burtis, R. & Evangelisti (1992). Will universal precautions protect me?: A look at Staff Nurses' attitudes. Nursing Outlook 40(3): 133-138.
Douglas, M. (1996/1970). Natural Symbols: Explorations in Cosmology. London, Routledge.
Dowsett, G. (1999). The indeterminate macro-social: new traps for old players in HIV/AIDS social research. Culture,Health and Sexuality 1(1): 95-102.
Foucault, M. (1973). The Birth of the Clinic. London, Tavistock.
Fusilier, M., Manning, M. R., Villar, A. J. S. & Rodriguez, D. T. (1998). AIDS knowledge and attitudes of health-care workers in Mexico. Journal of Social Psychology 138(2): 203-210.
Helman, C. G. (1994). Culture, Health and Illness. Oxford, Butterworth-Heinemann.
Hettiaratchy, S. W., Baines, S. & Viney, D. S. (1997). A survey of North Hampshire students' knowledge of HIV and related issues. Drugs-Education Prevention and Policy 4(1): 79-89.
Kleinman, A. (1980). Patients and healers in the context of culture: an exploration of the borderland between anthropology, medicine, and psychiatry.
Kolaschek, N. R. (1998). Cultural safety: a new concept in nursing people of different ethnicities. Journal of Advanced Nursing 27: 452-457.
Mogensen, H. O. (1997). The narrative of AIDS among the Tonga of Zambia. Social science & medicine 44(4): 431-440.
Nemeroff, C. (1995). Magical thinking about illness virulence: conceptions of germs from 'safe' versus 'dangerous' others. Health Psychology 14(2): 147 - 151.
Nemeroff, C., Brinkman, A. & Woodward, C. (1994). Magical contagion and AIDS risk in a college population. AIDS Prevention and Education 6(3): 249-265.
Spradley, J. (1980). Participant Observation. New York, Holt, Rinehart and Winston.

 

E: i.j.hodgson@brad.ac.uk

Fig. 1

 


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