Ian Hodgson
Bradford, UK
PhD study
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Ian Hodgson
Bradford, UK PhD study
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An
ethnographic investigation into the culture of health care workers involved in
the care of people with human immunodeficiency virus (HIV) and acquired immune
deficiency syndrome (AIDS)
Details
of the intended study 1. Background
General statement Culture plays a
significant role in a person’s understanding of illness (Helman, 1994)
. Numerous studies have demonstrated the role of explanatory models of
illness that are based on subjective experience and the prevailing cultural
context, as providing a valuable tool in helping to construct meaning, and make
sense of the world (e.g. Weiss, 1988; Farmer, 1994)
. Many
studies have concentrated on the experiences of people who are ill. This study,
however, intends to focus on the carers, who also have access to a range of
their own explanatory models, albeit mediated to a greater or lesser degree by
personal experience, and the relatively objective base of professional
knowledge. Focus The
reaction of nurses and other health care workers to people infected with HIV
(particularly those with limited experience in the care of this client group)
has been the subject of large numbers of studies.
The construction of HIV is often dependent upon not upon what people know
about the virus, but rather what they believe
they know – the ‘reality of the really made up’ (Overing, 1997)
, and reactions are in some circumstances inconsistent with accepted germ
theory, and in others are based on a rationale framed by instinctive reactions
derived from personal and cultural belief systems. This results in contexts
where there is an exaggerated fear of contagion, and a need to ‘categorise’
the infected person. The corollary of this is often an unwillingness to care (Fusilier,
Manning et al., 1998)
and the application of a pejorative moral framework (Forrester
and Murphy, 1992)
. Recent review papers e.g. Valimaki (1998)
suggest that, overall, attitudes are proving surprisingly resilient to
change. Hodgson
(1997)
suggests that four major determinants play a part in shaping an
individual’s reaction: political; psychological; sociological and
anthropological. It is the latter feature that will be the focus of this study.
Specifically, the role of culture in
the understanding of HIV/AIDS will be investigated, elements of which may
include: the knowledge base of the profession;
elements from the individual’s personal
cultural history; or the prevailing mindset of the general population at large, often articulated through a variety of
media channels. Aim of this study This
study intends to investigate the culture of health care workers in close
proximity with this client group. For this study, ‘health care workers’
includes any carer working directly with the client group, of whatever level of
experience. Other members of staff who do not deliver direct care, but who
engage indirectly with the client group will also form part of the study (as
according to the ethical framework below). 2.
Methodology
Overview This
study, is based on a qualitative (emic) methodology, as described by Morse (1992)
and (Kim, 1993). It is broadly anthropological, and will use research methods derived
from ethnography. Two methods will be used to collect data: observation
(observer as participant); and interview. Interview material will be subjected
to narrative analysis (using
techniques suggested by Reissman (1993)
, in order that underlying themes can be identified. Main
Study
Collection
of data will take place whilst the researcher spends a period of time
accompanying a group of health care workers caring for people infected with HIV
in a specialised unit. In-depth interviews will also form part of the study.
Elements of cultural activity that will be observed include (from
Spradley, 1980)
:
Ethical
Issues All
aspects of the methodology will be scrutinised by the appropriate committees.
The especially sensitive nature of the context of HIV will be respected, and
confidentiality will be maintained throughout the study. Consent will be
obtained where appropriate. The focus of this study is
health care workers. All staff will be informed where possible, and written
consent will be obtained in all situations where this is reasonably practicable.
All observation will be overt. Ongoing
notes and documentation will be immediately available on request, and final
conclusions from the study will be provided for all participating staff prior
to submission for publication. 3.
Other factors relevant to this study Three further factors need
mention with reference to this particular project: the role of cultural
narrative; the contrast between ‘disease’ and ‘illness’; and the unique
nature of this study. Firstly,
with regard to cultural knowledge, one aspect of this study that will be of
particular interest are data relating
to cultural narrative, for example myth. Here ‘myth’ is not defined in the
pejorative sense, as an untrue story. Rather, it will be assumed that myths are
a central component of the ‘glue’ that holds a culture together,
re-iterating and reinforcing beliefs about the world (Moyers,
1988)
. They provide a practical framework (heuristic) that allows appropriate
responses to any emerging context or situation (Douglas,
1984)
. The method of dissemination may vary, and will be determined by the
prevailing media and communication frameworks – word of mouth; art (i.e.
painting/drawing); written word; radio; television; the Internet. Secondly,
that there is a recognition of the perceptible
difference between disease and illness. As discussed in Foster
and Anderson (1978)
the former is a pathological
construct, and the latter is culturally
defined. Illness definitions are firmly
embedded in the matrix of cultural beliefs held by a society; disease is
diagnosed and treated by 'experts', and illness is essentially an impairment of
normal function – a factor defined by the prevailing belief system. In areas (say)
where malaria is endemic, it is perceived as not pathological but ‘normal’.
A fine anecdotal example of this can be seen in Carlo Levi’s autobiographical
work Christ Stopped at Eboli (Levi,
1982/1947)
. This
study will identify cultural factors that will influence the construction of HIV
as an illness within the current ‘world view’ of health care workers, a
vital area for study in relation to beliefs
about the epidemic (Aggleton,
1998)
. The findings will inform the education of carers and health promotion
strategies. They should prove of special value in the current, changeable
period, in which improved treatment regimes are altering the ‘picture’ of
HIV, presenting challenges to both health care workers (Aalen,
Farewell et al., 1999)
, and people with HIV (Hodgson, 1999)
. Thirdly,
the
majority of studies in the past have utilised questionnaires and/or hypothetical
critical incident scenarios to elicit ‘predicted
behaviours’ and ‘expected attitudes’ of health care workers when in the
proximity of a person infected with HIV. In contrast, this study intends,
through the use of ethnography, to provide invaluable contextual
data, a key benefit of ethnography (Geertz,
1993)
. This will provide deeper and meaningful insights into how health care
workers construct an understanding of HIV, and in particular will yield the cultural
influences upon this understanding. 4.
Further details Academic supervisors are based at the University of Bradford, and South Bank University. 5.
References Aggleton,
P. (1998). “Signs of
success ?” Current HIV Education Research(6): 1-2. Douglas,
M. (1984). Purity and
Danger: An analysis of the concepts of pollution and taboo. London,
Routledge. Farmer,
P. (1994). “Aids-Talk and
the Constitution of Cultural Models.” Social Science & Medicine 38(6): 801-809. Forrester,
D. and P. Murphy (1992).
“Nurses attitudes toward patients with AIDS and AIDS-related risk factors.” Journal
of Advanced Nursing 17(1260-1266). Foster,
G. and B. Anderson (1978). Medical
Anthropology. New York, John Wiley & Sons. Fusilier,
M., M. R. Manning, et al.
(1998). “AIDS knowledge and attitudes of health-care workers in Mexico.” Journal
of Social Psychology 138(2):
203-210. Geertz,
C. (1993). The
Interpretation of Cultures. London, Fontana. Helman,
C. G. (1994). Culture,
Health and Illness. Oxford, Butterworth-Heinemann. Hodgson, I. (1997). “Attitudes towards HIV: entropy and healthcare ethics.” Journal of Advanced Nursing 26: 283-288 - abstract here Hodgson,
I. (1999). “HIV and
Combination therapy: facing the challenge of a new era.” British Journal of
Nursing 8(1): 39-43 - abstract
here Kim,
S. H. (1993). “Identifying
alternative linkages among philosophy, theory and method in nursing science.” Journal
of Advanced Nursing 18: 793-800. Levi,
C. (1982/1947). Christ
Stopped at Eboli. Harmondsworth, Penguin. Morse,
J., Ed. (1992). Qualitative
Health Research. Newbury Park, California, Sage. Moyers,
B. (1988). Introduction
to: J. Campbell The Power of Myth. New York, New York. Overing,
J. (1997). The role of myth:
an anthropological perspective or: 'The Reality of the Really Made Up'. Myths
and Nationhood. G. Hosking and G. Schopflin. London, Hurst and Company. Reissman,
C. (1993). Narrative
Analysis. Newbury Park, California, Sage. Spradley,
J. (1980). Participant
Observation. New York, Holt, Rinehart and Winston. Valimaki,
M., T. Suominen, et al.
(1998). “Attitudes of professionals, students and the general public to
HIV/AIDS and people with HIV/AIDS: a review of the research.” Journal of
Advanced Nursing 27(4): 752-759. Weiss,
M. G. (1988). “Conceptual
models of diarrhoeal illness: conceptual framework and review.” Social
Science and Medicine 27(1): 5-16.
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