TRANSACTIONS OF THE ROYAL SOCIETY OF TROPICAL MEDICINE AND HYGIENE (1992) 86, 465-466 465

1 Leading Article ( I I

Listening to the people: improving disease control using social science approaches

Carol Vlassoff Special Programme for Research and Training in Tropical Diseases, World Health Organization, 1211 Geneva 27, Switzerland

The need for the involvement of social scientists in public health and biomedical research seems to be gen- erally accepted within the scientific community. It is rec- ognized that social science is required to elucidate the process of community participation, for example, and to suggest ways of bringing this about in particular situ- ations; that understanding the social and economic con- ditions of a population is essential for successful disease control; and that ‘culture’, however defined, somehow affects people’s knowledge, attitudes and behaviour in relation to health. None the less, for most biomedical scientists social science remains a ‘black box’ about which very little is known, and ways of approaching this discipline have often been inadequate. For example, so- cial scientists have frequently been called upon to rescue a situation when all other measures have failed-when, for example, people refuse to co-operate in an immuniza- tion programme, or when problems such as drug resist- ance threaten the viability of medical solutions. Social scientists have often been seen in a service capacity, rather than as equal partners working towards a common solution. Social scientists, on the other hand, often ex- perience frustration in attempting to understand and ad- dress health problems, partly because of lack of training in the medical field, and partly because of a certain pro- fessional resistance-fear that bv entering the health field their own discipline will become taintid or that their credibility within the social sciences will be questioned.

Fortunately, this impasse is rapidly disappearing and there is a growing openness in the scientific community to multidisciplinary approaches to health research, in- volving a combination of skills from the biomedical field- oriented disciplines, including epidemiology, entomo- logy and public health, to the full range of social sciences, including sociology, economics, anthropology, demography and psychology (VLASSOFF, 1991). Re- search teams may consist of specialists working side by side, completing ‘pieces of the puzzle’ as relatively dis- crete units feeding into a final common analysis. More frequently, the nature and complexity of the questions relating to disease demand a more interactive and inter- dependent relationship among the disciplines. Such re- search has been termed ‘transdisciplinary’ because it transcends the confines of particular fields to devise new and innovative methodological strategies. A few examples of such approaches,from studies-funded by the Snecial Proeramme for Research and Training in Troui- ~1

cal Diseases (TDR), are given here. A recently completed seven-country study of com-

munity perceptions of urinary schistosomiasis used a combination of epidemiological, laboratory and socio- logical methods to investigate the reliability of local per- ceptions for identifying communities at high risk of uri- nary schistosomiasis (LENGELER et al., 1991, 1992). Simple questionnaires for schoolchildren, teachers and other key informants were delivered through the educa- tional system and administered entirely by teachers and community leaders, and validated by urine tests con- ducted by the research team. A second step was carried out in most countries whereby teachers were trained to use reagent dipsticks to test the urine of the schoolchild- ren. This process was also validated by the research team in a sample of the communities. The results demon- strated that questionnaires had very high negative predic-

tive values, so that communities could be confidently considered to be at low risk of the disease. Moreover, community participation and awareness were maximized through the involvement of teachers in the urine testing process. A study in the Amazon comparing people’s retrospective reports of malaria episodes with serology similarly confirmed the accuracy of self-reporting (SINGER & OYA SAWYER, 1992). As the diagnosis and grading of clinical disease is time consuming, expensive and often impractical, particularly among highly mobile populations, these studies demonstrate that a rapid and reliable alternative is available, namely, asking the people.

Qualitative research methods, borrowed mainly from anthropology, are now increasmgly used in health re- search (MANDERSON & AABY, 1992). In-depth inter- views, participant observation and focus group inter- views may be used, for example, to obtain descriptive information before a study or to assist with the selection of a suitable research site; to provide data on the range of ideas and opinions on topics of interest preparatory to questionnaire development; and to investigate in depth data from epidemiological or sociological studies. With adequate training, researchers can obtain qualitative data relatively quickly, and these can later be validated by questionnaires or biomedical studies.

Information of a sensitive nature, including the fear and suffering experienced from stigmatizing diseases such as leprosy or elephantiasis, risk-taking associated with sexually transmitted diseases, or personal or inter- personal factors affecting health seeking behaviour, may be extremely difficult to capture by survey techmques. Here, qualitative methods are essential to unveil the com- plex dimensions of a problem. Until recently it was widely believed, for example, that the social and econ- omic importance of onchocerciasis was related mainly to its blinding effects. Disease control programmes thus fo- cused principally on areas where blindness was preval- ent. A multidisciplinary study in Nigeria used qualitative techniques to investigate the importance of the disease to adolescent girls (AMAZIGO & OBIKEZE, 1991). The re- searchers learned that skin disease from onchocerciasis was dreaded by the population, that it was an impedi- ment to marriage among those with visible signs of the disease, and that it was an important cause of divorce, es- pecially for women.

Qualitative research has also identified a significant problem related to women’s under-utilization of primary health care facilities in developing countries. While lack of drugs and supplies, long delays in obtaining services and the costs of travel and treatment are important fac- tors, a more important concern is the quality of interac- tion between health provider and female patient: women are often treated disrespectfully and given unsatisfactory explanations concerning their illness ~HELITZER-ALLEN, 1989: FINERMAN. 1989: COSMINSKY. 1987). Moreover. their’role as family health providers ‘may be threatened by medical services that place them in an inferior and de- pendent position.

Social research may also be combined with the intro- duction of disease control measures for several purposes: to provide information on the acceptability and cost- effectiveness of interventions, to monitor the process and suggest improvements as a programme expands, or to

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test different strategies in different areas. Several current TDR-supported projects exemplify these approaches: a multi-country study’ in Latin -America on- ihe accept- abilitv and cost-effectiveness of insecticide uaints and canisiers for Chagas disease control; operational research accompanying the delivery of ivermectin in Nigeria for the treatment of onchocerciasis, on issues such as alterna- tive distribution strategies and health education; and operational research on similar issues to complement a large schistosomiasis control campaign in China. These studies are being conducted entirely by researchers from endemic countries and, by their very nature, involve in- teraction at all stages with disease control activities. Moreover, control programme staff are strongly encour- aged to participate in the research in order to enhance the probability of application of the results. At the same time, the involvement of disease control personnel in the investigative process raises their scientific capability, equipping them to undertake research relevant to the surveillance and monitoring of programme activities.

The ability to sustain disease control depends very much on ‘listeninn to the ueoule’. While neonle can usually be convinc:d to parti^cipate in a new programme with the help of community leaders or other influential people, mass communications or special incentives, sus- taining such participation is not straightforward. A study of housing improvement for the prevention of infestation by triatomine bugs, the Chagas disease vector, found that people were more motivated to participate in the pro- gramme when local materials were used, assistance was given for them to build or improve their own houses, and a system of credit was provided. Loans were systemati- cally repaid and people were satisfied with their dwell- ings because they themselves had been involved at every step of the renovation process (BRICENO-LEON, 1987). The researchers recognized. however. that this satisfac- tion stemmed more fyom pride in the new and pleasing appearance of their homes than from anticipated positive health effects. By contrast, a government programme (also operated on a credit system) that levelled existing houses and replaced them with modern prefabricated structures was largely unsuccessful in obtaining repay- ment for the new homes because the people had been mere recipients, rather than participants, in the pro- gramme. Many other studies have shown the importance of understanding, and adapting the needs of health pro- grammes to, community priorities if long-term participa- tion is to be sustained (PANNICKER & DHANDA, 1992).

The use of any scientific approach must, of course, be justified by the end to which it is to be applied. For

example, the purpose of the schistosomiasis study men- tioned above was to identify communities with relatively high prevalence of disease for targeting treatment or health education programmes. If, on the other hand, pre- cise estimates of the incidence of infection or disease were required questionnaires alone would not be suffi- cient. Similarly, qualitative research should be com- plemented, where possible, by quantitative validation. This interdependency of methods, and the need for inno- vative interdisciplinary approaches, are constant chal- lenges to social scientists and health researchers. The re- wards are found in scientific discovery and practical contributions to disease control.

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Lengeler, C., Mshinda, H., de Savigny, D., Kilima, I’., Mo- rona, D. & Tanner, M. (1991). The value of questionnaires aimed at key informants, and distributed through an existing administrative system, for rapid and cost-effec&e health as- sessment. World Health Statistics Quarterly, 44, 150-159.

Lengeler, C., Sala-Diakanda, D. M. & Tanner, M. (1992). Using questionnaires through an existing administrative sys- tem: a new approach to health. Health Policy and Planning, 7. 10-21.

Manherson, L. & Aaby, P. (1992). Can rapid anthropological procedures be applied to tropical diseases? Health Policy and Planning, 7,4655.

Pannicker, K. N. & Dhanda, V. (1992). Community participa- tion in the control of filariasis: World Health Forum, 13, 177- 181.

Singer, B. & Oya Sawyer, D. (1992). Perceived malaria illness reports in mobile populations. Health Policy and Planning, 7, 40-45.

Vlassoff, C. (1991). Social and economic research in TDR: fu- ture directions. Parasitology Today, 7, 37-39.

Transactions, volume 86, number 4, p. 464. In the citation accompanying the award of the Chalmers medal, line 9 should read 1991 (not 1981), and

line 23 should refer to 350 necropsies (not 250).

Morvan, J., Lesbordes, J.-L., Rollin, I?. E., Mouden, J.-C. & Roux, J. (1992). First fatal human case of Rift Valley fever in Madagascar. Transactions, 86, 320.

Lines 11-14 of paragraph 3 should read: None of the strains was recognized by an anti-nucleocapsid monoclonal antibody (RlP2E7), like the non-Egyptian African strains but unlike the 1979 Madagascar mosquito isolate (SALUZZO et al., 1989).