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Diseases of poverty The stigma of tropical disease Access to care Women's role as family health-care providers
The tropical diseases18 are among the most pervasive and neglected diseases of the world. Malarial parasites, for example, are found in approximately 100 countries, and annually infect an estimated 270 million people, kill up to 2 million more (far more than does AIDS), and cause at least 100 million cases of acute illness (Cowley 1992; who 1993). Approximately 200 million people are infected with schistosomiasis in 76 countries, and about 200 000 die each year from the disease (who 1991). It is estimated that there are over 12 million leishmaniasis cases worldwide and approximately 350 million people are considered at risk (who 1990). About 20 million people are affected by onchocerciasis (Stephenson 1987; Warren et al. 1993), and it is estimated that 10-12 million people suffer from leprosy infection (Htoon et al. 1993). The gender dimensions of tropical diseases have been largely neglected. The area has traditionally been dominated by a biomedical perspective, and the subjects of research have tended to be men and children. When the effects of tropical diseases on women have been addressed, research has "focused primarily on sex differences, particularly related to pregnancy and reproduction, and has not examined these in relation to broader social roles and responsibilities" (Rathgeber and Vlassoff 1993, p. 513). Although a biomedical viewpoint has predominated, there remain many outstanding questions about the influence of biological factors on tropical diseases, including the effect of sex on the susceptibility and intensity of infection and progression of disease (Brabin and Brabin 1992; Duncan 1992; Michelson 1992; Vlassoff 1994). Women appear to "mount a better immune response" to some tropical diseases (such as malaria, leprosy, and visceral leishmaniasis) and "either have a stronger natural immunity or a stronger and more rapid cellular response" (Agyepong 1992, p. 179). However, many researchers have been quick to point out that any advantage gained by sex hormones in women may be quickly lost during pregnancy when the immune system becomes depressed and susceptibility to disease increases (Brabin and Brabin 1992). In the developing world, many cycles of pregnancy and lactation, often beginning at an early age, heighten women's vulnerability to disease. Parasitic infection in pregnancy can lead to malnutrition and deterioration in women's disease state and also have serious implications for fetal growth and development (Brabin and Brabin 1992).
Intercurrent infections and poor nutrition, other factors that compromise women's immunological reactivity, may further modulate this response (Ulrich et al. 1992). As a result of discriminatory feeding practices and female poverty, girls and women suffer disproportionately from poor nutrition and are impaired in their ability to fight disease (Duncan 1992). The depressed health status of women also influences their disease recovery. There is also a growing body of research that suggests that "morbidity and mortality rates reflect not so much sex differences in the biology of disease, but the mediation of disease through cultural and social circumstances" (Manderson 1994, p. 1; see also Tandon 1995). The sociocultural dimensions of tropical diseases include the ways in which gender affects the transmission of disease and risk of infection, the recognition of, and response to, signs of infection, the social experience of illness, access to care, and the effectiveness of interventions. Gender-differentiated "life spaces"An understanding of the patterned use and management of "local life spaces" by men and women is central to understanding why women face different levels of exposure to infection than men and why the risk of infection to some tropical diseases varies from one geographic area to another (Parker 1992; Kettel 1996). For example, although women and men, overall, appear to be equally affected by schistosomiasis and malaria, male to female ratios of disease prevalence vary considerably from region to region depending on the sexual division of labour and responsibility (Anyangwe et al. 1994; Vlassoff and Bonilla 1994). "In this respect, there is no clear direction of sex bias: in some instances it is men who carry the burden of infection, in other instances, women" (Manderson 1994, p. 2). Women play a key role in food production in many parts of the developing world, and their agricultural responsibilities, which include planting, weeding, harvesting, threshing, and winnowing, can expose them to an increased risk of tropical diseases such as malaria and onchocerciasis. Malarial parasites are transmitted to humans through the bite of specific vectors of Anopheles mosquitos (Nájera et al. 1993). Onchocerciasis is caused by the parasitic worm Onchocerca volvulus and is spread through the bite of blackflies that transmit worm larvae from infected to uninfected people. In parts of Nigeria, women spend more time in high transmission zones than men, and are more exposed to the bites of disease vectors for onchocerciasis and malaria (Amazigo 1994). Despite women's important participation in agricultural activities, sometimes their activities are not fully acknowledged and the risks associated with their work are not thoroughly identified by researchers. For example, Amazigo (1994) noted that, in the assessment of exposure to onchocerciasis vector bites, the tasks predominantly carried out by women were often ignored. If the full range of women's activities are not considered in estimates of disease prevalence, the extent of female infection can be underestimated (Vlassoff and Bonilla 1994).
When both women and men perform farm work, their different responsibilities can create disparate risks. In Simbok, Cameroon, men specialized in cash-crop activities; whereas, women were primarily responsible for tending food crops, such as groundnut and maize (Anyangwe et al. 1994). Women usually undertook the weeding and harvesting of their food crops before dawn so that they could be at the markets by daybreak. Predawn is one of the peak periods for the transmission of malaria and the timing of their activities meant that women were at greater risk for this disease (Anyangwe et al. 1994). Although most women wore trousers to farm, their arms and faces were rarely protected. Laundry and fetching water are predominantly female chores. Because mosquito habitats and malaria transmission sites are focused around water, women's regular visits to springs or rivers infested with mosquito larvae can increase their risk of malaria (Nájera et al. 1993; Anyangwe et al. 1994). Although some sociocultural factors can predispose women to malaria infection, other practices can safeguard females. Cultural restrictions on women's mode of dress or on their freedom of movement may protect them from mosquito bites (Silva 1988). Spending the early evening hours in the kitchen where smoke from fires protects them from mosquitos will offer women further protection (while exposing them to air pollution). If men, on the other hand, spend significant amounts of time sitting outside in the evening or sleep outdoors, they will be exposed to an increased risk of malaria in endemic regions (Reubin 1992). Schistosomiasis is the broad descriptive term given to a group of helminth (worm) infections caused by schistosomes. The majority of human infections are caused by four related species that develop within an aquatic snail host and are transmitted to humans through direct skin penetration or the drinking of contaminated water. Transmission of water-borne diseases, such as schistosomiasis, is linked to culturally prescribed and gender-differentiated responsibilities and activities. Women tend to have more frequent and intense water contacts than men because they are usually responsible for gathering water and washing clothes (Parker 1992). Infection rates for women vary from region to region depending on the time of day these activities take place (which, in turn, impacts on the degree of cercarial contact) (Michelson 1992). In Kotto Barombi, Cameroon, schistosomiasis posed a particular risk for women and girls who were responsible for water collection, laundry, bathing children, washing utensils, lake-side fishing, and wetland-rice cultivation (Anyangwe et al. 1994). Each of these activities required constant and prolonged contact with the infested lakes; in fact, women sometimes spent as much as 6-10 hours at a time in the lake waist deep, urinating and defecating when necessary (Michelson 1992; Anyangwe et al. 1994). Female children were exposed to the water as early as 3 years of age. Women's water-contact activities were often very social -- groups of women carried out their work together and mundane tasks were transformed into times for social entertainment and information sharing. Given the enjoyable nature of the activities, women rejected interventions aimed at reducing their contact with the lake. In comparison with women, men had little direct exposure to the water. Their fishing activities were conducted from canoes in the middle of the lake. In other societies, however, cultural dictates may result in men having significant contact with infected waters. In communities where males swim and bathe for recreation in reservoirs, canals, and rivers or fish, men and boys may be more exposed to water-borne diseases than women (Michelson 1992). Infection rates for schistosomiasis can be significantly lower for women in Muslim regions of the world because of restrictions on women's activities (Amazigo 1994; Anyangwe et al. 1994). In Muslim societies, women often remain secluded in their households, and men are responsible for almost all activities that are linked to the possibility of contamination from water, such as obtaining water for cooking and washing. Religious practices involving water contact, such as ablution and wadu (ritual washing), are also strictly male activities. Higher prevalence rates of schistosomiasis can occur among men in Muslim communities when ablution pools at Mosques become contaminated with host snails and serve as transmission sites (Michelson 1992).
Males are generally at a greater risk than females for leishmaniasis, a group of sandfly-transmitted parasitic diseases, and this risk has traditionally been associated with their occupations (Ayele 1988; Nandy et al. 1988). Activities that most typically place men at risk throughout endemic areas include deforestation, agriculture, hunting, road construction, and work on water-resource development projects. In Peru, leishmaniasis is associated with the opening of new roads, oil extraction, lumbering, and gold mining (Timotea and Llanos-Cuentas 1994). Differences in clothing patterns, with women being better clothed than men, may also expose men more than women (Thakur 1981). Although women are usually less exposed to the bite of leishmaniasis vectors, they will also be at risk if they are responsible for gathering wood in infected areas. Recent studies that have demonstrated that the leishmaniasis sandfly vector inhabits the walls of houses raises issues related to domestic transmission (Kaendi 1994). Women may be more exposed in areas where the disease is highly endemic and vector densities are greater in or near the house (Badaro 1988). Cysticercosis is an infection produced by larval tapeworms of the genus Taenia. It is acquired by eating the raw or undercooked meat of infected pigs and cattle (Sarti 1994). Women's domestic roles may put them at risk of acquiring taeniasis. As they prepare meals, women may eat by nibbling, even when the meat is still raw or undercooked, and can become infected. Moreover, when women prepare and serve food without applying sound sanitary practices, they can become the main sources of cysticercosis to their family if they contaminate the food (Sarti 1994). The role of women in the promotion and preservation of health in the home also puts them at increased risk of acquiring highly contagious diseases like leprosy and cholera. Women are responsible for caring for ill family members, and the contagious nature of these diseases makes it more likely that they too will contract the diseases (Durana 1994).
Diseases of povertyTropical diseases are "diseases of neglect and exacerbated by poverty" (Amazigo 1994). The impoverished living conditions of many women in the developing world translate into added risk for disease transmission. Many diseases particularly affect those who lack the basic conditions necessary to ensure good health, such as clean water, sanitation, and adequate housing. For example, Bonilla et al. (1991) reported that women living in poor housing and those who fetched water outside the household had more malaria than women who cooked in adequate kitchens or had water in their houses. Lack of ventilation, poor housing, and overcrowding are risk factors associated with leprosy, a highly infectious disease transmitted through droplets of bodily secretions (from saliva to pus from ulcers) (Duncan 1992). Most cases of leprosy among women in Venezuela were associated with deficient standards of living with regard to economic status (79%), literacy and education (78%), nutrition (75%), hygiene (66%), and living quarters (73%) (Ulrich et al. 1992). Another study found that the prevalence for leprosy in Venezuela was more than six times higher in areas of low economic development than in the areas with the highest levels of development (see Ulrich et al. 1992, p. 12). The absence of basic systems for sewage disposal and water management at the community level are primary factors that lead to the transmission of cholera. Cholera is an acute, infectious disease of the intestinal tract that is caused when the bacillus Vibrio cholerae is swallowed. Humans are believed to be the only reservoir of cholera infection (Stephenson 1987). The parasite is excreted from the body in feces and vomit, and it can be transmitted when patients or infected materials are handled. Flies can also carry the parasite to food or water. In Colombia, women living in poor housing constructed over contaminated water and those responsible for fetching water outside the household faced a higher risk of acquiring cholera (Durana 1994).
Chagas' disease is widespread in poor, rural areas throughout Latin America, and women appear to be most adversely affected (Sotomayer et al. 1994). It is caused by infection by the protozoan flagellate parasite Trypanosoma cruzi and is most commonly transmitted by bloodsucking triatomine bugs. Traditionally a rural problem, Chagas' disease is increasingly becoming an urban issue as a result of migration. The vector can live and breed in cracks and holes of walls and roofs of poor housing, such as those constructed of mud and thatch. Crowded peri-urban conditions hasten the spread of Chagas' disease, and women living in poverty are most at risk (Sotomayer et al. 1994). Communities affected by leishmaniasis are often among the most impoverished sectors of a nation (Wijeyaratne et al. 1994). Poor housing and poor hygienic practices increase the risk of transmission of leishmaniasis in peri-domestic areas. The vectors of visceral leishmaniasis are attracted to livestock and dogs kept in the home and to houses made of materials such as grass that are easily invaded by sandflies (who 1990). A high number of people sleeping in the same room can also attract sandflies.
The stigma of tropical diseaseThere is considerable social stigma associated with many tropical diseases for both women and men. Herrin (1988) used a questionnaire to explore the social consequences of schistosomiasis infection in the Philippines. He discovered that people "looked down upon" those who were infected and reported that "it was thought that an individual infected by [schistosomiasis] would damage the social standing of his/her family." Individuals testing positive to Chagas' disease have been denied employment in many Latin American cities and, in Brazil, women infected with Chagas' have lost their jobs when their illness was discovered (Zajac 1992, p. 143). Leprosy bears a deep historical stigma and is associated with ostracism and sense of fear and revulsion more than any other tropical disease (Ulrich et al. 1992). A study exploring perceptions of those with leprosy found that people were unwilling to employ, work with, provide housing to, or shake hands with leprosy patients (Tekle-Haimanot et al. 1992). Although stigma can have dramatic personal consequences for both men and women, women can be far more vulnerable because social stigma may compound other problems of powerlessness and subordination that women face simply because they are female (Manderson et al. 1993). A study that explored the implications of disease-related disability on women and men found that a significantly higher percentage of women, compared with men, were divorced with the onset of disability (Hellandendu 1992). Disability affected the woman's chances of staying married depending on the extent to which disability interfered with execution of her household and farming activities (Hellandendu 1992). Because cholera is associated with unsanitary living conditions, men and women afflicted with cholera may be labeled as dirty and poor. Women, who are usually responsible for maintaining healthy living conditions within the home, may feel the shame of such labeling more acutely than men (Durana 1994). A number of tropical diseases, such as leprosy, guinea worm, leishmaniasis, onchocerciasis, cysticercosis, and urinary schistosomiasis, may cause visible physical disfigurement and disability. Onchocerciasis, for example, can result in a disfiguring skin condition that causes depigmentation and a premature aged appearance (Vlassoff 1994), and leprosy can produce severe mutilation of the face and extremities. Because physical attractiveness is highly valued for women in all societies, and because "[women's] life chances [are] more closely associated with their physical appearance than those of men" (Vlassoff 1994, p. 1251), disfiguring diseases can have a particularly profound impact on women and can generate serious psychological and emotional stress on those afflicted. In a study of leprosy patients in India, 51% of women were forced to leave home because of the disease, compared with 32% of men.19 Women with leprosy have been abandoned by their husbands, had their children taken away from them, and even been sent to live in a cave (Mull et al. 1989). Women do not even have to have leprosy themselves to be harmed -- they just have to be in contact with infected individuals. Women with male relatives known to have leprosy can have problems marrying (Mull et al. 1989). Almost 70% of nurses in a leprosy-endemic country said that unmarried nurses working in leprosy hospitals would have difficulty getting married (Awofeso 1992). In some Nigerian communities, leprosy was found to have a devastating impact on the schooling and marriage prospects of girls.20 Because of complaints from parents of healthy children, teachers expelled infected children. Children who were forced to leave school usually took up menial jobs or quickly married before the onset of physical deformities. Once their condition became visible, adolescent girls with leprosy experienced a high rate of divorce. Until recently, skin disease associated with onchocerciasis has been given little consideration by disease-control programs -- nearly all attention has been on blindness, which is the most debilitating aspect of the disease. However, a study conducted in rural Nigeria found that unsightly lesions from acute and chronic papular dermatitis, and thickened, irritated skin, limited the chances that young adolescent girls would find marriage partners (Amazigo 1994). Girls with this disease also tried to conceal their condition, and often shied away from school and social activities. Stigma not only affected marriage prospects, it also limited the ability to make friends and "essentially disqualified [those with the disease] from full social acceptance" (Amazigo 1994, p. 88). Males, on the other hand, did not face the same degree of ostracism.
Because some tropical diseases have symptoms that show up in the genital area, they may be incorrectly perceived as stds. Infected women may be labeled as "immoral," and their disease may be viewed as a "punishment" for sexually promiscuous or deviant behaviour. The sexual freedom accorded to men in most societies, and differential attitudes toward the presence of stds in men and women, mean that men are generally not treated in such a harsh fashion -- indeed, tropical disease symptoms in the genital area can be considered a sign of virility for men (Vlassoff and Bonilla 1994). In many African societies, for example, urinary schistosomiasis in men ("red water") is a sign of coming of age and virility. In Amagunze, Nigeria, schistosomiasis infection in women most frequently affects the urinary system and is regarded by the community as an STD that is associated with immoral sexual behaviour (Amazigo 1994). Hematuria adversely affected the marriage prospects of adolescent girls, led to accusations by husbands of sexual misconduct, caused divorce and abandonment in some cases, and affected women's work capacity and family responsibilities (Amazigo 1994). A woman with urinary schistosomiasis from Anambra State, Nigeria, described her situation (from the 1985 Nigerian Fertility Survey, as cited in Amazigo 1994). During your adolescent age when other girls are hurrying out of primary school for suitors, you (the infected girl with haematuria) are busy convincing our parents and eligible male friends ... that the blood in your urine is not gonorrhoea contracted from a promiscuous lifestyle. When you finally get married, you complain of (postcoital) bleeding and irritation in your vagina. Therefore you are unable to satisfy the sexual desires of your husband. Imagine your fate. Even when you are innocent, with these symptoms, who will believe you? Finally, women are often accused of being the transmitters of disease, and they may be held responsible when other family members fall ill. For example, some people maintain that leprosy is caused by having intercourse with a "bad" or menstruating woman (Mull et al. 1989). Sotomayer et al. (1994) interviewed pregnant women who had tested positive for Chagas' disease in Bolivia. When informed that they had tested positive to Chagas' disease, the women expressed normal fears about dying and the possible detrimental effects to their unborn children; they also expressed a direct concern about the potential reactions of their partners to the news (Sotomayer et al. 1994). Without adequate information, husbands often blame their wives for both the incidence and transmission of Chagas' disease, and warn their children to "be careful of your mother because she may infect you" (Sotomayer et al. 1994, p. 122). This type of reaction caused added stress for the women, who already had to deal with the fact that they were infected. Health services must be made more aware of the stigmas associated with many tropical diseases, especially for women. More research in this area is needed, particularly about the social and psychological effects (anxiety and depression) of disfigurement for women. Access to careThe wide range of factors that influence whether or not a woman obtains quality care from available health facilities is discussed in Chapter 8. However, brief mention is made here of some factors because they affect women's access to diagnosis and treatment for tropical diseases. The overemphasis placed on women's reproductive health in developing countries has had notable negative ramifications for women's care. Because women tend to associate modern health services with family planning or care for their children, they often think that treatment is unavailable for their nonreproductive health needs, and they are therefore hesitant to articulate concerns related to tropical diseases (Vlassoff and Bonilla 1994). A study of women suffering from malaria in Saradidi, Kenya, found that 90% of the women recognized that they were suffering from malaria but 53% did not take prophylaxis because they did not know it was available (Kaseje et al. 1987). Women may not report unusual signs and symptoms because they are "not aware that they (nurses) can treat filariasis. They do not remove nodules and doctors hardly come to our centre" (Amazigo 1994, p. 86). Unfortunately, women's beliefs about available services are usually right. The disproportionate focus on reproduction has resulted in a dearth of personnel and facilities for the detection, documentation, and treatment of tropical diseases among women who attend health-care clinics. The incredible stigma associated with many tropical diseases also means that women sometimes go to great ends to hide their disease. Women are loathe to expose some of the dreaded effects of lymphatic filariasis and leishmaniasis, which include unsightly deformities in which the legs assume elephantine shape and size. If women perceive themselves to be disfigured or unattractive, they may not feel psychologically prepared to seek treatment. Because they fear rejection and abandonment by friends and family, women often hide their affliction and prefer to remain isolated in their homes, particularly after disease symptoms become visible (Amazigo 1994). The lack of female health workers can prevent women from presenting for care for all their health needs, and this is particularly the case for physically deforming diseases. The reluctance of women to be seen by male physicians means that early detection of disease is impaired.
Although the costs associated with treatment and control of tropical diseases, including insecticide spraying, drug treatment, and hospitalization, can be prohibitive for both men and women, women can be disproportionately hindered by such costs because of the limitations on their earnings and their complete exclusion from the cash economy in some locations (Paolisso and Leslie 1995). With limited financial resources, even relatively low-cost preventive measures such as insecticide-impregnated bednets can be beyond the means of poor households -- an inability to afford to buy sufficient nets for all family members, coupled with gender discrimination, can mean that men and boys will be given bednets before women and girls (Alilio 1994). The various factors impeding women's access to diagnosis and care can make it difficult to confirm definitive sex distributions for tropical diseases. As an illustration, men appear to be more at risk for leprosy than women, and the male to female reported prevalence ratio is about 2 to 1 (Ulrich et al. 1992). Researchers are increasingly suggesting, however, that the accuracy of official statistics could be affected by women's underreporting for care. Limited access to health services, the overburden of household and childcare responsibilities, and the stigma associated with leprosy, may make it less likely for women to show up at clinics to be diagnosed and result in gross underestimates of disease prevalence. Even strategies created deliberately to overcome these barriers may be unsuccessful in obtaining accurate numbers. For example, if researchers go from home to home to detect active cases, women in seclusion may be unable to open their doors to males. This could result in the systematic skipping of women (Manderson 1994).
In one rural area of Thailand, there had been a long-held belief that men were more exposed to malaria that women because they showed up at malaria clinics more frequently (only 16% of people attending clinics were women). Survey data, however, revealed no significant sex differences in infection. Furthermore, the introduction of a mobile malaria unit increased women's participation to 33% (Ettling 1989). Women's role as family health-care providersIllness and disease have special implications for women because, in both developing and industrialized countries, women have a central role as health providers within the family (Jones and Catalan 1989; Strebel 1994). According to gender stereotypes and the sexual division of labour, it is a woman's "natural responsibility" to nurture and take care of household members (Salinas 1988; Lange et al. 1994; Strebel 1994). Women's traditional responsibilities in the promotion and maintenance of the total health and well-being of family members include producing and preparing nutritious foods; providing quality water and essential energy needs; caring for family members, especially children, the disabled, and the elderly; imparting information to others about the prevention and treatment of illnesses and the maintenance of good health; traveling long distances to take children to clinics; treating common diseases and injuries; ensuring the cleanliness of children; undertaking the everyday work of feeding and nursing household members; ensuring sanitation; and trying to keep poor quality housing clean (Momsen 1991; McCauley et al. 1992; Kwawu 1994; Manderson 1994). Women's role as health providers is strongly valued by women themselves (Vlassoff 1994), and even when women have paid work outside the home, they invariably continue to perform these responsibilities.
Diagnosing illness and caring for the sickWomen are usually the first point of contact when family members are ill (Rathgeber and Vlassoff 1993). Children, if they turn to anyone at all, usually tell their mothers first about their health problems. Mothers also usually diagnose family illnesses, and may "discover ... an infection if they noticed blood on the children's clothing or bed" (Anyangwe et al. 1994, p. 81). Women do the bulk of the caring for the sick, whereas men rarely take on this responsibility (Tsikata 1994). When a family member is ill, it is a woman who decides whether self-treatment is appropriate, whether and when medical attention is necessary, and what kind of health services are required (Rathgeber and Vlassoff 1993). They may provide a range of products and remedies for treatment of family members, including tonics, herbal extracts, poultices, ointments and oils, and a variety of other medicines (McCauley et al. 1992; Kettel 1996). Women prepare efficacious herbal remedies for skin diseases, intestinal helminths, constipation, diarrhea, and other complaints (MacCormack 1992). It is women who usually accompany sick family members to a health centre or hospital and act as mediators between health professionals and family members (Cardaci 1992; Tsikata 1994).
Implications of a woman's illnessThere have been few studies measuring the impact of a woman's illness on other family members. It is important that women are healthy both for their own sake and for their key role in maintaining healthy families (Kaendi 1994). The state of women's health and well-being contributes directly to the health and well-being of their families, especially children and the elderly, and therefore contributes to the community as a whole. A woman's incapacitation can affect general family health because she will no longer be able to fill her essential roles (Amazigo 1994; Anyangwe et al. 1994). Incapacitation as a result of malaria, for example, prevents women from taking advantage of antenatal services and from taking infants to clinics for immunization (Brieger et al. 1989). Chronic and repeated malaria infections, or serious schistosomiasis infection, can lead to decreased capacity for women to carry out their household and farming activities. A household will probably experience a loss of income during a woman's illness if she is involved in the paid work force (Durana 1994). However, loss of income caused by illness can be difficult to measure because women who suffer from disease may work longer hours or work even harder just to meet the demands of their job.
If a woman is very ill and experiences great pain or is hospitalized, her domestic and economic work must still be done, which can have negative implications for other family members, particularly in female-headed households. A World Bank study found that school attendance of young people aged 15-20 years was reduced by half if the household had lost an adult female member in the previous year (World Bank 1993). Girls are particularly affected and are more likely than boys to be kept from schooling to assume increased domestic responsibilities in societies where girls' education is given lower priority than boys' (wash Field Report 1988; World Bank 1993). In the case of serious maternal illness, "the mother's burden becomes the daughter's sacrifice -- a sacrifice much less frequently demanded of boys" (UNFPA 1990, p. 15). More research to explore the effects of a woman's illness is needed, particularly its effects on absenteeism, drop-out rates, and learning outcomes of school-age girls (Amazigo 1994; Anyangwe et al. 1994).
Disease-control measuresMany diseases are transmitted either within or around the household and can best be controlled by careful management of the local biophysical environment. Control strategies consequently must involve the active participation of all householders. The social role of women as health providers within the family provides them with opportunities to play an important role in controlling the transmission of disease at the household level. Indeed, the ultimate success and effectiveness of interventions may depend on the participation of women. Women have significant power and authority within the domestic domain. If women's cooperation is not assured in interventions, there may be low rates of participation in disease-control activities. For example, if women are uncomfortable with the intrusion of male vector-control personnel into their household, they may resist the reorganization of the domestic environment to fit control measures.
A good example of the importance of gaining the compliance and cooperation of women to ensure the success of interventions can be seen in the case of bednets. Insecticide-impregnated bednets are increasingly being used as a control strategy for malaria in Asia, Latin America, and Africa. Nets soaked in antimosquito insecticide and used to cover beds can significantly reduce malaria-related deaths (who 1993). Women will probably bear the primary responsibility for reimpregnating bed nets every 6 months, and the success of this intervention will depend on their participation (Alilio 1994; Amazigo 1994). As described by (Reubin 1992, p. 49) in Women and Tropical Diseases: It is [women] who will bring the family bed nets to the health centres to be dipped in pyrethroid suspension, it is they who will put them on mattresses to dry, and see that the children stay under them at night. It is they who will decide whether the nets are to be washed and at what intervals, and when they need to be retreated with pyrethroid because mosquitoes are beginning to bite again. Similarly, if mosquito repellent creams, soaps, or smokes are used on a large scale in integrated control programmes of the future, it will be the responsibility of the women to see that they are used properly by the family, and that children in particular wash repellent applications off their skins before reapplication Vlassoff (1994) reported that a pilot study funded by who in Ghana sought to determine people's preferences for insecticide-impregnated bednets. They found that women did not want white nets because they quickly became dirty and unsightly. As a result, a decision was made to dye the nets gray. To date, the project has proceeded well. Sanitary conditions are the key to preventing diseases such as leishmaniasis, cysticercosis, and cholera. Because women usually have major responsibility for household sanitation and environmental practices, their participation in any control and treatment strategy is clearly essential to ensure its sustainability. Women can play an important role in strategies to improve sanitation and hygiene practices, such as ensuring proper garbage disposal and drainage, improving the quality of the water supply, adopting hygienic food-preparation practices, and eliminating actual or potential sandfly breeding and resting sites, such as garbage piles, piles of bricks, and stones (Stephenson 1987; Warren et al. 1993).
Education of family members on healthThe full participation of women in the process of health education is important. Women in most cultures play an important role in informing family members about health beliefs, illness behaviour, and the use of health services. They can, therefore, play a crucial role in the prevention and control of disease. For example, women educate their children about personal hygiene habits and health practices -- such as brushing teeth, food consumption and nutrition, and the importance of proper sanitation and waste disposal -- and ensure that children are immunized and cared for during the crucial years (Kwawu 1994; Lule and Ssembatya 1995). Women who are properly educated about tropical diseases can educate children about the parasite, routes of infection, and development of disease. Because education efforts focused mainly on women not only improve their health, but also the health of their families, interventions are increasingly targeting mothers to produce changes in health-related practices (Sarti 1994). Women who have been encouraged to change from an old water source to a new one, or who have been persuaded to use a latrine maintained by the household rather than to defecate in the bush can educate other family members about the importance of these practices. To reduce the transmission of schistosomiasis, women can be encouraged to limit their contact with infested waters and to teach their children not to play in infected lakes. As observed by Yudomustopo (1995) in Indonesia: Children who lived alongside the river enjoyed playing, bathing, and even toileting in the river. Women as mothers and educators took responsibility for the safety of their children ... and most women forbade their children from these activities.
Mata (1982) found that in a Mayan Indian village maternal attitudes and practices had greater impact on disease transmission in the family than socioeconomic class or level of education. Sarti (1994) from the Dirección Nacional de Epidemiologia, Secretaría de Salud, Mexico, produced changes in hygienic and sanitary practices related to disease through programs of community education focused on mothers. The mothers then went on to teach their children preventive health practices. Although women's role as providers of family health must be respected and taken into consideration in interventions, researchers have also been quick to point out the drawbacks of exclusively targeting women in disease-control interventions. Rathgeber and Vlassoff (1993), for example, cautioned that a focus on women as health providers may reinforce the notion that women are responsible for failures in disease-control efforts at the community level and lead to criticisms of women if desired activities are not implemented. Women may also need to make significant investments of time and energy to carry out the recommended control measures, and this could lead to the further overburdening of women (Winch et al. 1994). In this regard, there is a need for research to explore strategies that might lead to a more equitable distribution of family roles. Although the importance of gaining women's cooperation in disease-control measures must be remembered, family-health messages should perhaps be targeted at both women and men, rather than be directed solely to women (which perpetuates the idea that family health is primarily or exclusively the responsibility of women). Men must be encouraged to take a more active role in creating and maintaining a healthy home environment rather than to leave the entire responsibility to women.
Knowledge levelsThe ability of women to protect themselves from disease and to properly educate family members about prevention and treatment strategies is contingent on their access to proper information. Much research, however, points to significant gaps in women's understanding of disease. In Baringo, Kenya, significantly fewer women (12%) than men (26%) knew the correct etiology of visceral leishmaniasis (Kaendi 1994). Women's capacity to protect themselves and their families is hindered by a lack of understanding of causes, symptoms, transmission routes, and prevention and treatment strategies. A study of the transmission of malaria among adolescent girls in rural Ghana found that malaria was often believed to be caused by excessive heat and that most community members did not connect malaria to mosquitos (see Agyepong 1992). Although most women understood that malaria was caused by mosquito bites in a study conducted in Cameroon, some reported other causes including heavy rains, walking for a long time under the sun, and catching a cold (Anyangwe et al. 1994). In the same study, most mothers stopped giving malaria treatment to their children when the fever subsided, even if it was after a single dose of medication. In the Philippines, women sometimes put themselves at risk of malaria because they were unaware of the risks (Espino 1995). One mother would constantly go out of the mosquito net at night to prepare milk for her young infant. One pregnant woman refused treatment because she believed it would harm the baby. After she had given birth, this woman was diagnosed with malaria, but she gave the prescribed medication to the infant because she believed the baby had malaria (Espino 1995). There were serious misconceptions among women in Cameroon about how schistosomiasis was acquired. Women thought that the "worms" that cause schistosomiasis entered the human body through the urethra or anus during urination or defecation in the lake (Anyangwe et al. 1994). In Peru, women frequently attributed leishmaniasis to "contact with stale water, contact with the morning dew, and contact with the toroq tree, mosquitos and butterflies" (Timoteo and Llanos-Cuentas 1994, p. 129). Many women in endemic areas lack information about Chagas' disease (Zajac 1992; Sotomayer et al. 1994). In a study conducted in rural Bolivia, 59% of women did not realize that triatomine bugs transmitted Chagas' disease, although they recognized the bugs and had seen them in their homes (see Zajac 1992). Superstitious beliefs about other diseases have also been reported. Some women in Colombia thought cholera was a "disease of fate" (Durana 1994); whereas, leishmaniasis in Kosnipata, Peru, was sometimes attributed to magic or a retribution from God (Timoteo and Llanos-Cuentas 1994).
The decision-making authority of menMany researchers have also pointed out that interventions that exclusively target women because they are responsible for the care of children may have little impact because men have so much decision-making power within households (Amazigo 1994; Chiarella 1994; Kaendi 1994; Vlassoff 1994; Bello 1995; Udipi and Varghese 1995). In some cultures, women are expected to make decisions about child-health matters without necessarily involving other family members; however, in other societies, "the decision to change behaviour ha[s] to be sanctioned by the husband in the household and the community as a whole" (McCauley et al. 1992). In one study, permission to attend meetings with groups of women was often granted only after the goals of the program had been explained to community members and husbands (McCauley et al. 1992). According to a woman from KwaZulu-Natal, South Africa, "we need our husband's permission for absolutely everything" (Pagé 1995, p. 8). In the case of activities to prevent malaria, for example, the male of the household may make the crucial and ultimate decision concerning whether or not a mosquito net will be used, and if so, by which family members. Fathers, and sometimes mothers-in-law, may decide whether malaria prophylactics will be used. Mothers-in-law have reportedly prevented their daughters-in-law from taking malaria prophylactics because they believed they were in fact oral contraceptives (who 1995). According to Rogler (1989, cited in Yack 1992), interventions based on the assumption that mothers have the freedom to make health-care decisions for their children, presupposes the existence of a situation of choices, with mothers and significant others bidding for their preferences, within the context of equal say in households.
A study conducted by Halima Abdullah Mwenesi, from the Kenya Medical Research Centre, Nairobi, Kenya, provided a clear example of women's relative lack of decision-making power in some societies. Mwenesi examined the decision-making dynamics with regard to health-seeking behaviour among the Mijikenda and the Luo peoples of the Kilifi District, Coast Province, Kenya. She reported that both Luo and Mijikenda mothers, following the dictates of their patriarchal societies, are not expected to make any decision concerning themselves or their (husband's) children without consulting their husbands or other males in the household (Mwenesi 1994). Women routinely consulted their husband, and, in the absence of the husband, his father and brothers. Only if the father was away and the husband's brothers were younger siblings, would senior females in the household -- usually the mother-in-law or a senior sister-in-law -- be consulted. These societies have a well-defined social structure in which everyone "knows their place" (Mwenesi 1994). Husbands are consulted because "it is the way it is" (Mwenesi 1994), and men make all financial decisions. Among the Luo people, if relationships of seniority are ignored, it is believed that the "chira" infliction will befall the household. Qualitative research from male and female informants revealed that women could decide on simple home remedies or purchase over-the-counter drugs (such as acetylsalicylic acid, ASA). However, someone other than the mother had to be involved in important matters such as whether or not to seek treatment at a health facility or from a traditional healer, because it was believed that the husband (or his stand-ins) would be able to make a wiser decision than the mother.
Similarly, McCauley et al. (1992) reported that, among the Gogo people of Tanzania, mothers were responsible for the care of their ill children and treated them with herbal teas for minor ailments, but they had to seek the express permission of their husbands before using a health facility or traditional healer. Similar findings from Zaire were reported by Janzen (1978). The implications of these findings are serious -- "the time taken to consult various people for a child suffering from a severe disease could mean death or severe impairment" (Mwenesi 1994, p. 124). Likewise, if the woman herself is ill, her health could also be placed in jeopardy by such delays. Although interventions should recognize the importance of women as health promoters at the family level, they must also be sensitive to the complex set of factors that influence health behaviours. Women's lower status in the family must be considered, as must the fact that ultimate decision-making authority within households may rest with men. There is much work to be done with regard to improving the position of women in developing societies before exclusively women-centred interventions can be viewed as feasible solutions (Kaendi 1994).
The authors thank Lori Jones Arsenault of IDRC, a collaborating author on this chapter, for her valuable contribution. 18 Including malaria, schistosomiasis, filariasis (lymphatic filariasis and onchocerciasis), trypanosomiasis (Chagas' disease and African trypanosomiasis), leprosy, cholera, and leishmaniasis. 19 See Vlassoff, C.; Khot, S.; Rao, S., "Double jeopardy: women and leprosy in India." Unpublished (cited in un 1995, p. 73). 20 Unpublished research of M.A. Asuquo, National Institute for Medical Research, pmb 2013, Yaba, Lagos, Nigeria. |
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