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In this brief report, we
think the following topics also require special mention: (1) the
village health workers' role; (2) the terminology used to denote
the health centre, its services and practitioners; (3) the role
of Basotho men during childhood illnesses; and, (4) our
assessment of rapid anthropological methods.
Village health workers
Although we realize that the cadre of village health workers (VHWs) we met may not be representative of all village health workers, we found them eager to learn and participate in new health activities. They understand and recognize the traditional customs and lifestyle of the villagers. They live in close proximity to their constituents and will, no doubt, influence a new health activity like ARI. The village health worker system offers another layer of health care that is more immediate than what the nurses at the clinic can offer. When provided with ARI-related training, VHWs can assist mothers to make the critical decision about when they should seek care for a child with ARI.
Culturally-specific terminology
When translated, terms used by villagers in Lesotho do not always correspond precisely to their English analogs. For example, the terminology used to denote the health centre, its services and practitioners differs from conventional use. In this sample, we encountered some who were astonished to be asked, "Do you ever go to the (kliniking) clinic?" Women above childbearing age and men do not go to the "clinic". Some villagers associate the term "clinic" with specific health activities (immunization, prenatal care, well baby clinics), but not the site of health care delivery. Likewise, the Sesotho term for a medical "doctor" includes nurses and health care workers at health centres who "give medicines", wear white coats, attend sick (vs. well) people, and use "instruments". Investigators using survey instruments that ask the Basotho, "Did you go to the doctor?" should expect that respondents who answer affirmatively may have seen anyone who delivered modern medicine to them.
The role of males during childhood illnesses
In most child survival surveys, the respondents have been women. However, while we were interviewing in one village, the men wanted to be included. The male interviewer in our research team responded spontaneously and conducted a group interview with a small group of farmers. The men spoke openly about their knowledge of childhood illnesses. Most memorable is this statement by one farmer:
"My responsibility as a man in the case of children having diseases is to give money and discuss the problems with my wife. It is also my responsibility as a man to see to it that my child is sent to the hospital or to the doctor. If I know the Sesotho medicine, I see to it that I get it14.''
This group of men, and others who were interviewed, saw their roles to include paying for their family's medical expenses, discussing health decisions with their wives, collecting herbs, and transporting their sick children to the health practitioner. Wilson and Kimane (1990) verified the extent of the Basotho men's involvement during the national study conducted two months later.15 In patrilineal, patriarchal societies like Lesotho, male involvement in health care decision-making may have been underestimated by policy makers and planners. In considering these data, health education strategies should be developed to include males as a target audience.
Assessment of Rapid Anthropological Methods
Although we were able to provide a rapid response to programme needs, the assessment methods used in this study introduced biases that should be addressed. Sampling biases occurred in two areas of the study design: site selection and selection of respondents. Since both sites were located in periurban areas near the capital city, and we did not include respondents in the remote sections of the country, or from pert-urban areas other than the capital. Additionally, our sampling scheme was designed to include mothers who were primarily home makers and could be found either in their home or in nearby fields. Excluded were mothers who may have been commuting to work in the city, then returning during the evening after we had finished our interviews. Our use of village health workers facilitated access to respondents, but their presence may have biased care takers' responses to our questions. Since e this study was to be followed by a quantitative study. we were willing to accept these biases and those associated with non-response in return for data which could be collected and analyzed rapidly in time to influence the design of the quantitative study.
The observations of any scientist are subject to error. Also, researcher inferences are subject to bias. Thus, our decision to include some data while excluding others may have biased the results. This type of decision making is the norm in ethnographic research.16 In our case, the justification of our inferences is based on the assumption that the interactive process used to collect and analyze the data produced results that reflect the reality of the sample population, an emic analysis. An emic analysis that reflects the values of the study population is a better model of their health beliefs and behaviours than one constructed solely from an etic approach.17 Throughout the course of the study, we sought the Sesotho terms that appropriately elicited illnesses with ARI symptoms, we tested the best approach to eliciting responses, we honed our instrument. The results of Phase Two, the follow-up quantitative study,18 validated the major findings in this study. We considered these biases acceptable, given the goals and time constraints of the project.
The entire study was completed in three weeks. Five days were spent arranging logistics of the field work, selecting the interviewers, and developing the initial instrument. Twelve days were spent in the field collecting data in two health catchment areas. A draft report was written in two days by the social scientists, presented to the Ministry, and left in country. A final report was provided to the Lesotho Ministry of Health (LMOH) one month later.
From this experience, we have learned that the speed of conducting anthropological research can be enhanced by: 1) focusing the scope of the research problem; 2) cooperating with a multidisciplinary research team that can answer technical questions rapidly; 3) working with a country national social scientist with expertise in his or her own culture; 4) collaborating with governmental agencies in the host country who are participating and fully cooperative with the research activity; and 5) having the managerial support of a resident project staff member.
In traditional anthropological field work, the focus of the research has been the production of an ethnography that gives insight into many facets of social life. In this project, we focused on one specific aspect of behaviour: the caretakers' response to children with symptoms of ARI. For other sociocultural information, we relied upon previously published literature, and the researchers' previous knowledge of Basotho culture19.
The anthropologist in this project had an unusual opportunity to work with a Mosotho sociologist and two trained interviewers while collecting and analyzing the data in the field. The authors worked together to refine the interview guide and write the reports.
The speed with which research activities were completed was further enhanced by the structure of the organization in which the anthropologist works. This organization, the International Health Program Office at CDC, includes experts from several disciplines: anthropology, epidemiology, evaluation, health education, clinical medicine, and public health training. Members of this multidisciplinary team bring the strength of their own disciplines to the development of each research effort funded through the ASCI-CCCD project. The anthropologist had access to technical advice even while in the field.
The research team was spared months of field time because of the cooperation of the Ministry of Health. Since the Ministry had initiated the request for a social science study of community ARI behaviours, it had a vested interest in providing support throughout the project. The MOH's preexisting rapport with clinic staff and village health workers facilitated our efforts to establish rapport in the field. Additionally, the Ministry arranged for government clearance of the research protocol. All of these activities could add months to traditional anthropological fieldwork.
In Lesotho, as in many places in the developing world, relationships between people are important. The normal relationships the anthropologist may have built with key informants and key officials had already been established by the CCCD Technical Officer prior to the research endeavour. Having trustworthy persons in the country who are knowledgeable about the social and political structure and adept at removing logistic barriers to operational research was key to the success and timely completion of our work. The Technical Officer served as a liaison with the governmental agencies and worked with local officials to help minimize logistic obstacles.
In summary,
we conclude that rapid anthropological methods provided useful
information for ARI policy and programme development in Lesotho.
The speed with which data can be collected and analyzed can be
enhanced if the anthropologist works with professionals
indigenous to the culture of the respondents, and if local
facilitation is provided.
This study is the result
of the collective efforts of the following agencies and their
staff: Family Health Division of the Lesotho Ministry of Health,
USAID African Child Survival Initiative-Combatting Childhood
Communicable Diseases Project, and International Health Program
Office of the Centers for Disease Control in Atlanta, Georgia.
Funding was provided by the United States Agency for
International Development (Africa Regional Project No. 698-0421).
A special note of thanks to those in Lesotho who made this study possible: Dr. Mpolai Moteetee, Head of the Family Health Division, Lesotho Ministry of Health; interviewers Miss Mampetlo Vickie Ramashamole and Mr. Khethang Patrick Hanyane; and the staff and village health workers of Bethany and Matukeng.
At the
Centers for Disease Control, David Gittelman, Ronald Waldman,
Virginia Sturwold, Steven Redd, Stanley Foster, Andrew Vernon,
and Melinda Moore provided input and feedback throughout the
stages of this work.
1. World Health
Organization Programme for the Control of Acute Respiratory
Infections. Acute respiratory infections in children: Case
management in small hospitals in developing countries. Geneva:
WHO, 1991.
2. Redd S. Moteetee M, Waldman R. Diagnosis and management of acute respiratory infections in Lesotho. 5(3): 255-260, 1990: Health Poll Plan.
3. Ashton, H. The Basuto, 2nd ed. London: Oxford University Press, 1987.
4. Ellenberger DF. History of the Basuto. New York: Negro University Press, 1969.
5. The term "caretaker" refers to any person responsible for child care. This category includes mothers, grandmothers, fathers, and others in whose care a parent leaves his child. The respondents are primary caretakers in a household with a resident child under the age of 5.
6. Also known as Rapid Ethnographic Assessment, Rapid Anthropological Techniques, and Rapid Assessment Procedures.
7. See Fetterman (1989) for further discussion on selecting small purposive samples for ethnographic research.
8. Although we prioritized obtaining individual interviews, we included some group interviews. Our goal was to interview respondents in a setting most conducive to producing rich, textual data. We relied on the experience of Mrs. Shale, the Basotho social scientist, who suggested that interviews conducted in the most natural setting for the respondents would lower the social barriers between the research team and the respondents. When the team met potential respondents who had already assembled themselves into a group (e.g., two groups of village health workers), they were interviewed in a group. Or, if respondents were engaged in a group activity (e.g., canning fruit, washing clothing, visiting, etc.), the participants were given the option to be interviewed in a group or individual format.
9. Literally, kokoana means a tiny insect, but the term kokoana is associated with the behaviour of a two-headed little snake. When there is reddened tissue or any infection (e.g., an infected anus, eye, or ear) kokoana is thought to be eating away at the tissue, but it is so tiny as not to be visible. To some extent this concept is synonymous to the layman's perception of a virus or bacteria, an unseen entity that causes anatomic damage.
10. It is our understanding that this term represents an ARI that could have the symptoms of pneumonia: cough, fever, difficulty breathing, or fast breathing.
11. Mocheso literally means heat and refers to elevated body temperature.
12. In general, an etic definition defines reality from the researcher's point of view, using paradigms that may or may not reflect reality from the perspective of the research population. Comparatively, an emic analysis attempts to describe reality from the point of view of the population or culture under study.
13. Lifuba is the plural of sefuba.
14. Translated text. The original text was in Sesotho, the language of the Basotho.
15. In the quantitative study, 68% of the child caretakers of children with an ARI reported consulting with the child's father.
16. Spradley (1980: 10) writes that "In doing field work, you will constantly be making cultural inferences from what people say, from the way they act, and from the artifacts they use."
17. See Pelto and Pelto (1978).
18. Wilson and Kimane (1992).
19. The
consultant had worked for seven months in Lesotho in 1970. The
Mosotho social scientist was born, raised, and presently resides
in Lesotho.
Ashton H. The Basuto,
Oxford University Press. 2nd ed. London, 1987.
Bentley, ME, Pelto GH, Straus WL, Schumann DA, Adegbola C, de la Pena E, Oni FA, Brown KH, Huffman SL. Rapid ethnographic assessment: applications in a diarrhea management program. Social Science and Medicine 1988; 27(1): 107-116.
Debus M, Handbook for Excellence in Focus Group Research. Washington, DC: Porter Novelli, 1988.
Ellenberger DF, History of the Basuto. New York: Negro University Press, 1969.
Krueger RA, Focus Groups: A Practical Guide for Applied Research., Newbury Park, CA: Sage Publications, 1988.
Morgan DL, Focus Groups as Qualitative Research. Newbury Park, CA: Sage Publications, 1988.
Pelto PJ and Pelto GH. Anthropological Research: The Structure of Inquiry. New York: Cambridge University Press, 1978
Real M, Kumar V, Nanda M and Vanmaja K. Beliefs and practices of urban mothers regarding 'trot' end 'cold' foods in childhood illnesses. Ann. of Trop. Paediatr., 1982; 2:93-96.
Redd S. Moteetee M, Waldman R. Diagnosis and management of acute respiratory infections in Lesotho. Health Poll and Plan. 1990; 5(3): 255-260.
Scrimshaw S. and Hurtado E, Rapid assessment procedures for nutrition and primary health care: anthropological approaches to improving programme effectiveness. Los Angeles: UCLA Latin American Center, 1987.
Spradley, James P. Participant Observation. New York: Holt Rinehart and Winston, 1980.
Wilson, RP, Kimane I. The diagnosis and management of acute respiratory infections by caretakers of children under the age of five in Lesotho, 1989: An anthropological study. Atlanta, GA: International Health Program Office, Centers for Disease Control, 1992
Wilson RP, Kimane I. Mothers' perception of ALRI: a case study in Lesotho. In Gadomski, A. (ed.), Acute Lower respiratory infection and child survival in developing countries: understanding the current status and directions for the 1990s. Proceedings of a Workshop held August 1-3, 1989. Baltimore: Johns Hopkins University School of Public Health, 1990.
World Health Organization Programme for the Control of Acute Respiratory Infections. Acute respiratory infections in children: case management in small hospitals in developing countries. Geneva: WHO, 1991.
Yoder S. Qualitative
research in Zaire: training of a UNICEF team in Lumbumashi.
Working Papers Series, Health Communication Evaluation Research
Group, Annenberg School of Communications. Philadelphia:
University of Pennsylvania, 1988.
LESOTHO ARI COMMUNITY
STUDY, PHASE I, 1989
Interviewers: After introducing the project, and requesting the respondent's participation in the study, record their name, village, year of birth, number of children, years of schooling completed, sex, and any other obvious indicators of socio-economic status observed.
Please be certain that the following 10 questions are asked of each respondent.
1. What kind of illnesses do children five years of age and younger have here in this village?
2. Which are the most severe?
3. What about illnesses that make breathing difficult?
4. Do children suffer from sefuba in this village? (If the answer is no, skip to question 5).
4a. Please describe the symptoms of sefuba.
4b. Are there different types of sefuba? If respondent says yes, pleas ask him/her: Please name and describe the symptoms of the different types of sefuba.
4c. Has any of your children had any of these illnesses? If yes, ask: What happened to that child? What did you to try to help the child get better?
4d. Is there any other method of treating these different types of sefuba?
4e. Do you know of any traditional medicines used for these illnesses we've discussed today? What are they? When do you use them? For which type of sefuba are they used?
4f. Is there anything else you do to help children suffering from the illnesses discussed in this interview?
5. Is there a traditional healer in your village? Is there a religious healer? Do you ever seek his or her help when your child or someone you know is ill? What does the healer do to help you or your family member? Can the traditional healer treat sefuba? How?
6. Have you ever attended the clinic? (Why/why not?)
7. Have you ever taken any of your sick children there?
8. Have you ever taken a child with sefuba there? If yes, ask what happened. (Did the child get better? What kind of treatment was given.?)
9. Is there any reason why you would not take a child with sefuba (or any other childhood disease) to the clinic?
10. What do you think is the best way to educate people about new ways to improve their health and the health of their families? What makes this method a good one?
11. Do you have a radio? Do you listen to it? Have you heard about health education? Which messages have you heard?
12. Are there any special clothes for children who have sefuba? Any special food or drink?
Make
closing statements, thank the informant, and take leave.
The transcultural epilepsy demonstration project
General findings
Utilization of epilepsy specific health services
Psychosocial concerns
Educational campaign
Endnote
References
By Anna Long, Susan C. M. Scrimshaw, and Nyrma Hernandez
Anna Long is with the School of Public Health, UCLA. Susan C. M. Scrimshaw is Associate Dean at the School of Public Health, UCLA.1 Nyrma Hernandez is the Deputy Executive Vice President of the Epilepsy Foundation of America in Landover, MD.
This paper describes one of the earliest adaptations of the RAP guidelines, their use for determining the cultural values that influence the perception of health and reactions to epilepsy among different ethnic groups in the United States. The study made evident the need for both services and education campaigns for persons with epilepsy to address the issues specific to ethnic and underserved groups. - Eds.
INCREASING NUMBERS OF anthropological studies of various ethnic groups in the United States show that cultural identification and values are retained for many generations and play a significant role in the individual's behaviour in relation to health and illness. Ethnic and cultural values are known to influence people in their perceptions of health, reactions to illness, levels of information about and trust in treatment sources, and attitudes toward health care and social service providers. Four studies report estimates of the incidence and prevalence of epilepsy among whites and non-whites in the United States. Each study reveals an increased rate among blacks compared with the white population, consistent across males and females [1-3]. Hauser [3] found the prevalence of epilepsy in the United States to be 6 to 7 per 1,000 for whites, 9 to 10 per 1,000 for Hispanics, and 10 to 12 per 1,000 for blacks; with the risk of seizures during a lifetime at 10% for whites and 25% for blacks (no figures are available for Hispanics). Hauser observes however, that whether this difference is real or whether it is due to such factors as increased risk of head injury or poorer perinatal care in lower socio-economic status populations, it remains an unanswered question.
In
recognition of these concerns, the Epilepsy Foundation of
America's National Board of Directors called for a national
transcultural programme initiative, which culminated in the
launching of a national transcultural demonstration project in
1986 targeting American Black, Haitian, and Hispanic communities
in Dade County, Florida, an ethnically and culturally diverse
area of the country.
Implemented in
collaboration with the Epilepsy Foundation of South Florida and
the University of California at Los Angeles, the project had as
its goal to develop a better understanding of epilepsy among
ethnic and culturally diverse groups, to find more effective ways
to reach these groups, and to make services and epilepsy
education more accessible and relevant. The first phase of the
project consisted of an ethnographic field study among American
Black, Haitian, and Cuban communities in Dade County, Florida,
designed to elicit answers to the following questions: (a) How do
individuals and families in these groups recognize epilepsy and
what do they consider to be its nature and treatment? (b) Who are
the key figures who influence individual and family health care
practices? (c) What are some of the special needs of individuals
with epilepsy and their families in these communities? (d) What
are some of the unique strengths and resources of these groups,
and how can they be marshalled to address the needs of people
with epilepsy?
An ethnographic survey tool Rapid Assessment Procedures (RAP) [4] originally developed by Dr. Susan Scrimshaw of the School of Public Health, UCLA, and. Elena Hurtado, was adapted specifically for this project by Dr. Scrimshaw and Anna Long, a doctoral student at UCLA, resulting in the "Epilepsy Rapid Assessment Procedure (ERAP): Rapid Assessment Procedure for the Evaluation of Epilepsy Specific Beliefs, Attitudes and Behaviors" [5].
Interviewers from the communities who were culturally congruent with the three target populations were selected for training about epilepsy and anthropological field survey techniques using a specially developed field guide and training manual.
A total of
81 individuals, comprising four types of households in the three
communities, were interviewed. Types of households included those
from the general population and the target families, the latter
consisting of households in which at least one individual had
either exhibited seizure symptoms or had been diagnosed as having
epilepsy. These target families comprised those with family
members with epilepsy in the general health care system, those
with family members with epilepsy currently not in the health
care system, and those with epilepsy using the Cuban clinical
health care system.
Seizure recognition is the
first step in seeking treatment for epilepsy. We found seizure
recognition to be a major problem, not only in the Cuban, Black
and Haitian communities in general, but also in epilepsy target
households in these communities. The data indicate that concepts
and indicators used in determining health and illness, general
perceptions of common illnesses in adults and children, and
perceptions of epilepsy are important factors contributing to
lack of recognition, particularly of non-convulsive seizure
types.
Among Black, Cuban, and Haitian study participants, general perceptions of health and illness were clearly associated with seizure recognition. In all groups, health was defined as a state of emotional and physical wellbeing, with indicators such as good appearance, good mood and social behaviour, and normal functioning. On the other hand, informants used indicators such as inability to function normally, poor appearance, and the presence of symptoms to determine when an individual was ill. Tonic clonic seizures, by virtue of their obvious symptoms, were usually recognized as "epilepsy" and were generally considered chronic conditions to be dealt with by a physician.
Non-convulsive seizure types, such as complex partial and absence seizures, were usually not recognized as epilepsy. Often these conditions were considered temporary emotional upset or inattentiveness rather than seizures. Lower levels of recognition of these seizure types are due in part to the lack of dramatic symptomology and the ability of the individual with these seizures to function normally in the absence of seizures.
When examining informants' perceptions of common illnesses, informants in all three ethnic groups named less serious acute illnesses for children, and more serious, chronic conditions for adults. The perception that children's common illnesses are acute and less serious may contribute to lack of recognition of absence and complex partial seizures in children. Among Cuban informants, "nervous conditions" were named as adult common illnesses. The symptoms described by Cuban informants included many that were consistent with complex partial seizure symptoms, suggesting a high probability that complex partial seizures are often labelled as "nervous conditions" among some Cubans.
Complex partial seizures, because of low levels of recognition among all three groups, are an important case for discussion in this context. Complex partial seizures were least frequently recognized as epilepsy by all three ethnic groups. Absence seizures were also difficult to recognize by all families. Consequently, they were often defined and treated in culturally specific manners. Haitian general population informants only recognized tonic clonic seizure symptoms as a form of epilepsy. Complex partial seizure symptoms in this group were believed to be caused by emotional and mental disorders. Among Cubans, complex partial seizure symptoms were labelled "nervous conditions" or emotional problems. Among Black informants, these symptoms were labelled nervous breakdowns, emotional stress, and insanity.
The problem of seizure recognition in these communities requires extensive health education efforts campaigns. The design and approach taken in the implementation of health education in these communities will be the major factor in determining their success. First, health education materials focusing on recognition must present images of seizure symptoms that closely correspond to their actual appearance. Seizure recognition will increase by first drawing attention to these symptoms and then alerting individuals to the fact that these may be symptoms of epilepsy.
Second, any
educational health campaign materials must utilize
culturally-specific labels for the various seizure disorders in
order to facilitate recognition. For example, "spells,"
"attacks," "mal cadie," "fits,"
"crises," "nervous conditions," and
"ataques" or "convulsiones" among Hispanics
are common labels in these communities for symptoms consistent
with various seizure types. In order to facilitate seizure
recognition, materials must utilize culturally-specific names for
seizure symptoms, thereby linking the culturally recognized
condition to "epilepsy." Finally, educational materials
must present images of the community members themselves. The need
to utilize locally-recognized figures in depicting information in
culturally appropriate manners cannot be over-emphasized. In the
Haitian community, for example, epilepsy is a severely
stigmatized condition. Health education materials with
"EPILEPSY" printed boldly across the top will most
likely be received poorly.