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IN HER LIFETIME: Female Morbidity and Mortality in Sub-Saharan Africa 1 Summary PREAMBLE As mothers, as workers, as citizens, as members of families and communities, women play a central and increasingly complex role in the life of Sub-Saharan Africa. That reality, however, has been reflected in only a patchy, disjointed, and erratic way in the worlds of medicine and public health. Scientific attention and preventive health efforts have almost single-mindedly focused on women's health as it affects their offspring, and on women's lives as centered on reproduction alone. In essence, women have been treated as mothers or wives, rather than as individual female human beings living whole lives. There are powerful reasons why this has been so; perhaps the most compelling of these has been demographic. Anxiety about population growth, and consequent concern about the high fertility rates in developing countries, drove the expansion of family planning services that began in the 1960s in much of the developing world. The emphasis, therefore, was on reproduction, not on reproductive health. These attempts to give women at least some control over the number and timing of births in their lives were eminently worthwhile, but they were incomplete. The second reason has also involved numbers. The emphasis placed on the survival of infants and very young children during the past 15 years responded to the dictates of mortality statistics. To a degree, this was appropriate. Throughout the developing world, death rates in infants and children were higher than in any other age group, in many cases stunningly high. A large proportion of these deaths were seen to be—and, indeed, proved to be—avoidable, as relatively low-cost technologies and program interventions became increasingly available. Efforts to reduce mortality in this vulnerable population were essential but, again, were incomplete: the survival, health, and nutritional status of females seemed to matter—both physiologically and programmatically —only because they influenced child survival and well-being. There are other reasons as well for the neglect of women's health issues. In virtually all countries, both developing and developed, government administration is categorical and disarticulated. Ministries of agriculture, health, education, infrastructure, labor, commerce, and industry do their work separately, unified only by the annual budgeting efforts of central finance ministries. Gender or age categories are almost never a target for public investment; when they are, such efforts are usually internal to a single sector. From a bureaucratic standpoint, this is logical, but such a disjointed approach rarely responds very well to the special needs of particular populations or to the resolution of wide-ranging national problems. Finally, efforts over the past 25 years toward women's fuller participation in the life and development of
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IN HER LIFETIME: Female Morbidity and Mortality in Sub-Saharan Africa nations have stressed their legal and political rights—to vote, to hold office, to work, to inherit. Yet, as necessary and urgent as this emphasis has been, it too is incomplete. Current directions are much more expansive; ''women's human rights" include protection from political persecution and gender violence; property rights and fair compensation for work in a safe workplace; the ability to practice free and responsible parenthood; and the setting of reproductive rights in the context of overall health. Every one of these initiatives has been crucial for large numbers of individuals and families. Had they not been undertaken, it would be more difficult now to think more expansively. At the same time, these partial approaches create a special dilemma for females because their responsibilities are so complex. The female role is at least a double one: women have the primary charge for reproduction and the care of their own offspring, and often care for the parental or grandchild generation as well. At the same time, in most of the developing world, and increasingly in the developed world, women play a major role in the production of goods and services. In Sub-Saharan Africa, female children are quite young when they are first called to share in family labor, first births come early, and life expectancy has been short; thus, females are bearing children, caring for them, and working throughout their lives. As overall life expectancy in the region continues to lengthen, however, the span of those years widens, so that a model of health care in which females are statistically and medically important only in their ability to survive infancy and bear children is proving increasingly inadequate. The challenge that confronts us now is how to maintain female health and well-being across that widening and ever more complex span, and adjust to the new needs that will arise. THE "LIFE SPAN" APPROACH In 1988, when the Institute of Medicine began to conceptualize this study and held the first planning meeting, its articulation of a "life cycle" approach to thinking about female health was novel and innovative. There was virtually no published literature dedicated to the methodological potential of this approach, nor were there any case applications. The basic premise of the approach is that human health and illness are not invariably haphazard, but an accumulation of conditions that begin earlier in life, in some respects before birth. A second premise holds that the factors that favor health and precipitate ill-health are not purely genetic or biological, but can be social, economic, cultural, and psychological, and that these elements can work together or against one another across the span of an individual's life in ways that we are only beginning to understand. The third premise is that any reasonable public health strategy must recognize these dynamics and the resulting continuity of risk over the entire course of the female lifetime. Since that first meeting in 1988, momentum in domestic and international thinking has grown around the need for a more inclusive and integrative model of women's health and well-being, and "life cycle" as a term of art has acquired a certain currency. In 1994 the World Bank published two documents1 with the life cycle as a central theme, and the United Nations International Conference on Population and Development enlarged the perspective on family planning beyond provision of contraceptives to the assurance of women's total health and economic well-being. 2 The Institute of Medicine and this committee are gratified to have contributed to the thought processes underlying these works and excited to see the concept taking hold. Early in their deliberations, the authors of this report considered whether or not to stay with the term "life cycle." On the one hand, the concept had been the organizing device for the study and surely conveyed the desired elements of continuity and inheritance. On the other hand, the term has a procreative connotation that, in effect, excludes women who either produce no offspring or are past childbearing, and thus can be seen as reducing health to its reproductive value alone. From this perspective, for example, the health of a female adolescent is of interest only as a preface to the onset of her reproductive life, not as helping to make her whole life safer, better, and more productive. In addition, the emphasis on the healthy survival of the fetus makes it the prime beneficiary of health interventions; the mother is the target of those interventions only as the conduit of their beneficial effects, so that the benefit she derives is secondary. Reproduction is a central and uniquely valuable role of women and must be accounted for, but it is not all they do, and that must be accounted for as well.
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IN HER LIFETIME: Female Morbidity and Mortality in Sub-Saharan Africa In contrast, the term "life span" is neither ambiguous nor limiting. It clearly refers to an individual's entire life experience from birth to death, whether or not that includes reproduction. The term applies equally to analysis of male health. That the focus of this study is on female health should not be seen to imply a lack of concern for males. The health and well-being of males over the life span is of rightful and necessary concern in itself, as well as in its many implications for family health and well-being. Finally, the term "life span" is becoming more widely applicable as more countries go through the demographic and epidemiologic transitions that will profoundly transform their health profiles. Although the communicable diseases still dominate national health profiles in Sub-Saharan Africa, the dimensions of the noncommunicable, social, and environmental diseases are growing. Overall life expectancy has increased, and infant-child mortality has fallen, so that growing numbers of individuals are surviving to experience the chronic effects of earlier disease exposures and the "newer" diseases of the later years. Health systems throughout Sub-Saharan Africa, already greatly stressed, will have to find ways to respond, sooner rather than later. In many cases, that time has already arrived. THE STUDY PROCESS Background As part of its continuing concern for the Sub-Saharan African region, The Carnegie Corporation of New York has had abiding interest in the present and future role of women in the development of the region, as well as in their ability to play that role. Given the breadth of that interest, the Corporation found the concept of a holistic approach to the health dimensions of women's role appealing. In consequence, the Corporation provided funds to the Institute of Medicine (IOM) for a planning meeting, held in 1991, to define the design, determine the scope, and develop a detailed plan for implementation of a study on female morbidity and mortality in Africa south of the Sahara. Subsequently, the Carnegie Corporation, the United Nations Development Programme, the World Health Organization, and the National Research Council provided additional funds in support of the study, the two committee meetings that followed, and publication of the final report. The Committee and Its Process The 14-member interdisciplinary committee appointed to conduct the study included experts in anthropology, chronic diseases, demography, epidemiology, infectious diseases, injury and violence, mental health, nutrition, obstetric health, occupational and environmental health, and sexually transmitted diseases and HIV. Half of the committee members were from Sub-Saharan Africa, and principal authorship for the chapters to be included in the report was evenly distributed among the committee members. In evaluating the evidence on female health in Sub-Saharan Africa, the committee examined a wide range of information sources, including demographic and health surveys; epidemiologic studies; case series and individual case reports available both from peer-reviewed journals and the often rich, unpublished literature available locally in Africa; conference and symposium proceedings; newsletters from professional health organizations and women's groups; academic dissertations and theses; and the body of analysis carried out in conjunction with the World Bank's work on the global burden of disease. Whenever possible, the committee examined the primary data sources. The committee anticipated that it would be hampered in its task by paucity of data, especially age-specific and sex-specific data. That issue surfaces throughout this document in different contexts, and is the subject of the Appendix to this volume. As is often the case, however, the "no data" concern was partially unfounded: there is a substantial body of information about Africa, women in Africa, and health in Africa. Nonetheless, gaining a solid, longitudinal understanding across the life span was impeded by incomplete data' unevenness in data quality, consistency, and reliability; and a lack of the kinds of disaggregation by age and sex that are absolutely essential to that understanding.
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IN HER LIFETIME: Female Morbidity and Mortality in Sub-Saharan Africa Study Objectives The committee set out to accomplish two objectives. First, it wished to elaborate and test the life span model and its utility for thinking about health and illness as cumulative products of the synergy among different diseases and conditions. Sub-Saharan Africa was taken as the case in point, but the committee also hoped to demonstrate the general utility of the life span model. Second, it wished to provide a unified documentary base for use in developing a systematic agenda for research and health policy formulation around female health in Sub-Saharan Africa. The committee expects that the audience for the report will include African and non-African researchers, policymakers in African ministries of health, international donor agencies, and indigenous and international nongovernmental organizations. Dilemmas and Strategies The committee faced two major challenges: selection of the topic areas, individual diseases, and disease clusters for its analysis, and how to organize its work and the final report, given that its subject matter was multifactorial in etiology, cumulative in manifestation, not always clearly linear or transparent, and sometimes biomedical and sometimes not. For example: Should malnutrition be considered as disease, predisposing condition, or sequela? Should the diseases selected be just those that are exclusive to, or more prevalent in, females, implying that all other diseases have the same ramifications for both males and females? Should the tropical infectious diseases be viewed as vector-borne or poverty-borne? More broadly, is poverty simply the largest health problem, and the problem from which all others derive? Should the study focus be solely biomedical? If so, did that mean that socioeconomic, cultural, and political dimensions were to be ignored? If not, were those dimensions to be taken up specifically in each chapter, or generically, as applicable to all health problems? Should the report be organized according to the phases of the life span, or by health problem? The committee first decided that the study would emphasize the biomedical aspects of women's health, but would also establish at the outset the social, economic, and cultural factors that interact most powerfully with human biological processes. The committee recognized that this decision might be controversial, because it would appear to go against the current interest in more inclusive models of health in general, and women's health in particular. The biomedical focus might also appear to ignore the current sentiment in developing countries that Western medical models are rigid, mechanistic, narrow, and insensitive to cultural and gender realities.3 At the same time, disease cannot be understood without reference to biology. There is no question that the burden of disease on Sub-Saharan African women is very, very large, but in the committee's view it had not yet been "unpacked" and laid out systematically in a way that would reveal all its features. As a consequence, modern medical systems—not just in Africa, but worldwide—are not well informed about gender differences. This is partly the result of the general exclusion of women from clinical studies of the treatments being prescribed for them; the general belief that, in most situations, women and men will not differ significantly in their responses to treatment; and the notion that much of what women present as illness is psychosomatic. This disregard of gender is a mistake. There are gender differences, and they are relevant. Differences between men and women in size, fat ratios, and metabolic rates are associated with differences in drug concentration, metabolism, and response. Psychosocial differences are associated with differences in exposures to all manner of risk. In addition, intergender differences change over time, in females in conjunction with menarche, menstruation, pregnancy, lactation, menopause, and aging. Finally, there is the possibility that genetic, physiologic, or morphologic traits associated with sex may either exacerbate or attenuate infection in males and females, and may even affect the incidence of disease and the processes of co-infection in ways that are not a function of exposure alone (see Chapters 4 and 10 in this volume). In sum, examination of the biomedical component of the burden of morbidity and mortality is necessary and
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IN HER LIFETIME: Female Morbidity and Mortality in Sub-Saharan Africa useful in any effort to understand the strategic points of vulnerability and the complex interplay of disease determinants, manifestations, and sequelae across an individual lifetime. Scrutiny of the possible earlier determinants of disease will suggest a very different research and intervention agenda than would be produced through traditional cross-sectional analysis. Such a perspective, and the knowledge it produces, will also be more likely to foster prevention and the idea of medicine as "a culturally tailored continuum of care."4 The committee also noted that the compilation of information about women's health in Sub-Saharan Africa would in itself be a useful service, and it would assist scholars and policymakers involved in the larger contextual issues influencing health. Indeed, statements of the scientific and statistical facts can be compelling in themselves, reaching beyond their more specific epidemiologic and program uses to raise consciousness or command policy attention. The examples of AIDS and female genital mutilation are particularly instructive in this regard. Given the biomedical orientation of the report, the chapters are organized around discrete sets of health problems. Factors that influence or contribute to female health—education, income, availability of health services, and civil rights—are addressed in a separate, overarching chapter at the beginning of the report. Because individual chapters might be used independently, however, chapter authors were encouraged to highlight the socioeconomic and cultural factors that were particularly salient to the topic under discussion. The internal organization of each chapter follows the life span sequence: infancy, childhood, adolescence, adulthood, and older age, with information about demographic subgroups included as data permitted. The committee considered organizing the entire report according to the life span sequence. From a public health standpoint, this approach might be desirable. From a practical standpoint, however, that strategy would have introduced significant constraints and redundancies. In selecting the focus of individual chapters, the committee concentrated on health problems that: (1) are exclusive to females; (2) place a greater absolute burden of morbidity, mortality, or disability on females than they place on males; and (3) produce burdens of comparable magnitude for both sexes, but have unique implications for females. The committee also discussed the merits of using a measure being developed by the World Health Organization and the World Bank in their work on the global burden of disease, the disability-adjusted life year, or DALY.5 The measure proved useful in Chapter 10, which examines eight tropical infectious diseases and their relative burdens; the data bases for DALY computation in these instances were reasonably robust. Definitions Sub-Saharan Africa This report considers the 39 mainland countries of the continent south of the Sahara, with the addition of the island nations, as Sub-Saharan Africa. That term is used throughout this report interchangeably with the terms "Africa" and "the region." The countries north of the Sahara are understood to constitute North Africa and to be oriented more toward the Middle Eastern Crescent than toward the rest of the continent to their south. The committee was fully aware of the subcontinent's great heterogeneity, and it accounts for this by providing individual country data and pointing to significant differences where they exist, as well as to zones of commonality. Sex and Gender Throughout this report, the term "sex" is used when the reference is to the fundamental biological distinctions between males and females; survey data, for example, are disaggregated by sex. Although formal lexicons equate the two terms, current usage of the term "gender" is more expansive. As applied in this report, "gender'' includes not only biological or sex differences between males and females, but also subsumes the context of their behavior in society, the different roles they perform, the range of social and cultural expectations and the constraints placed on them by virtue of their sex, and the ways they cope with those expectations and constraints.6
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IN HER LIFETIME: Female Morbidity and Mortality in Sub-Saharan Africa Report Organization In Her Lifetime is divided into 11 chapters. This segment, Chapter 1, introduces the study and presents its rationale, objectives, strategy, processes, definitions, and organization and summarizes its conclusions and recommendations. Chapter 2 describes socioeconomic and sociocultural contexts and influences. Chapters 3 through 11 present the evidence on female morbidity and mortality for specific diseases and conditions: nutrition; obstetric and gynecologic health; nervous system disorders; mental health problems; selected chronic diseases; injury; occupational and environmental health; tropical infectious diseases; and sexually transmitted diseases, including HIV infection. The Appendix describes the nature and extent of the evidentiary base on female health in Sub-Saharan Africa. Each chapter starts with a brief opening statement, followed immediately by a summary table depicting the diseases or conditions discussed in the chapter that produce disproportionate burdens for females. The chapter then offers a discussion of a given health problem or cluster of problems, and presents a summary table showing the process of the problem or cluster across the female life span. The chapter concludes with a statement of the research needs brought into focus by the discussion and a comprehensive set of references. Despite a common format, each chapter reflects the distinctive character of its subject and the data bases used. Thus, the internal structure of the chapters is somewhat heterogeneous. A chapter on eight different tropical infectious diseases, for example, must differ from a chapter on models of occupational and environmental health in Africa, as a chapter on a fundamental factor such as nutrition must differ from a piece on nervous system disorders. CONCLUSIONS AND RESEARCH NEEDS Conclusions The committee debated whether its purview included generating a set of overarching policy recommendations related to the contextual dimensions of female health in Sub-Saharan Africa. It concluded that, first, a plethora of other organizations was already immersed in meetings and discussions of the positions they wished to take at the 1994 Cairo Conference on Population and Development and the 1995 Conference on Women in Beijing. For example, a number of women's organizations indigenous to Africa were deeply involved in many of those processes. Second, the committee itself had been explicitly configured to include African and non-African women and men whose preeminent expertise was scientific, and that expertise would provide the strength of the final report. The committee would add no real value to the report by commenting on broad international policy issues, but a thoughtful presentation of the biomedical dimensions of female health would be a distinctive contribution. In effect, the committee had already anticipated its principal—and only—policy recommendation. It had set out, in effect, to test the life span model and to see if it provided enough understanding of female morbidity and mortality in Sub-Saharan Africa to be worth pursuing, not only in the study region, but elsewhere as well. The committee has since concluded that the life span model is extremely useful, indeed necessary, to adequately organize data collection and analysis in more informative ways; design applied research; identify areas where significant biological factors are involved, but so poorly understood as to require fundamental research; approach decisions about development of diagnostics and therapies in the context of real needs and constraints; and to conceptualize all levels of health services as care that extends beyond the episodic and reactive. This chapter, organized around three summary tables, is intended to cut across the entire document in three ways. First, it considers the major health problems of Sub-Saharan African females identified in the report in "Gender-Related Burden." Table 1-1 summarizes the tables that appear at the beginning of Chapters 3 through 11, and is organized by type of health problem. The remaining two tables follow the life span in organization. The second cut analyzes those burdens and their implications in each phase of the female life span. Table 1-2 summarizes the tables in the "Conclusions" section of Chapters 3 through 11.
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IN HER LIFETIME: Female Morbidity and Mortality in Sub-Saharan Africa The third cut, shown in Table 1-3, assembles the "Research Needs" identified in each chapter of the report and arranges them according to the life span. Gender-Related Burden This section provides an overview of the health problems in Sub-Saharan Africa that are exclusive to females; have greater impact on females than males; and generate comparable burdens for both sexes, but have some special significance for females. "Significance" here means having an impact on health that—for biological, reproductive, sociocultural, or economic reasons—differs in its implications for females and males. The organizing table (Table 1-1) follows the order of the book chapters; order under each heading (for example, "nutrition") is alphabetical, with no other priority implied. The listing under "obstetric morbidity and mortality" merits special comment. Males obviously have no obstetric or gynecologic problems. With the exception of "genital mutilation," however, all the health problems listed under this heading do afflict males. The overriding point here is that although the sexes share an array of health problems, pregnancy and parturition exacerbate or are exacerbated by them, with the result that females suffer a greater net effect than males. Nutrition A comparison with other regions of the world reveals that Sub-Saharan African females appear to be better nourished than females in South Asia, but they are equally or more malnourished than females in most other parts of the world. In contrast with South Asia, there is no consistent pattern of a higher prevalence of protein-energy malnutrition (PEM) among females than among males, despite a generally higher work burden among African women. Nor is there any indication that either the prevalence or sequelae of vitamin A deficiency are worse in females than in males in the region, although the deficiency is highly prevalent in some areas. These various deficiencies have implications for reproductive capacity and resilience in females both because of the increased nutritional demands of pregnancy and the increased and severe risks that pregnancy and childbirth pose for a woman who has been stunted by PEM. In addition, two very important deficiency disorders, iron-deficiency anemia and iodine deficiency disorders, occur more commonly in females than in males, and put females at substantial relative disadvantage; iron-deficiency anemia is a major risk factor for maternal mortality. As life expectancy lengthens in Sub-Saharan Africa, the impact of nutritional factors beginning at birth will become manifest in degenerative diseases and other functional impairments in adult life. Obstetric morbidity and mortality Of all geographic regions, Africa has the highest maternal mortality ratios, and this in itself is the most significant factor in comparing health outcomes in that region by gender. The events and conditions that are associated with pregnancy, childbirth, and the puerperium for women everywhere are exacerbated in Sub-Saharan Africa by severe lack of access to appropriate care for obstetric emergencies of any kind. There are additional conditions and events shared by females and males, in many cases at roughly equal prevalence rates, that have particularly serious consequences for females precisely because they are female and because they reproduce. These conditions and events are rarely considered in any unitary way. For that reason, they are listed in Table 1-1 as preexisting or concurrent conditions that also affect males, but are exclusively female in the way they either exacerbate risk during pregnancy and childbirth, or are themselves exacerbated by those events. The length of this list is impressive. It includes six highly prevalent and burdensome tropical infectious diseases (dracunculiasis, or Guinea worm disease; leprosy; malaria; onchocerciasis; schistosomiasis; and trypanosomiasis); five chronic diseases (cardiomyopathies, diabetes, hypertension, rheumatic heart disease, and sickle-cell disease), including one that is clearly genetic (sickle-cell disease); three nutrition-related conditions (anemia, iodine deficiency, and protein-energy malnutrition); and three conditions related to female sexual and gender identity (HIV/AIDS, the sequelae of female genital mutilation, and the entire group of sexually transmitted diseases). These health problems not only interact deleteriously with the gravid state and the act of parturition, but frequently with one another as well. A particularly pernicious cluster involves HIV/AIDS, the other sexually
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IN HER LIFETIME: Female Morbidity and Mortality in Sub-Saharan Africa TABLE 1-1 Health Problems in Sub-Saharan Africa: Gender-Related Burdena Problem Exclusive to Femalesb Greater for Females Burden for Females and Males Comparable, but of Particular Significance for Femalesc Nutritional status (Chapter 3) Iodine deficiency X Iron-deficiency X Protein-energy malnutrition X Nervous system disorders (Chapter 5) Demyelinating diseases X Epilepsies X Headache syndromes X Impaired cognition and dementias X Neurologic complications of collagen diseases X Toxic and nutritional disorders X Mental health problems (Chapter 6) Psychological disorders X associated with pregnancy and puerperium Cardiovascular and cerebrovascular diseases, cancers, and chronic obstructive pulmonary disorders (Chapter 7) Cancers X? Bladder X Breast Cervix X X Skin Uterine, ovarian, choriocarcinoma X Cardiomyopathies associated with pregnancy X Gestational diabetes mellitus X Rheumatic heart disease X Injury (Chapter 8) Domestic abuse X Household burns X Rape and sexual assault X Adverse occupational and environmental factors (Chapter 9)d Ergonomic stressors X Exposure to indoor air pollution X Exposure to organic dusts from food processing X Exposure to toxic wastes X Job overload X Lack of job control X Othere X X X Tropical infectious diseases (Chapter 10) Burkitt's lymphoma X Dracunculiasis X (pelvic infection) X Leishmaniasis X (stigmatization) Leprosy X (in pregnancy) X (stigmatization)
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IN HER LIFETIME: Female Morbidity and Mortality in Sub-Saharan Africa Problem Exclusive to Femalesb Greater for Females Burden for Females and Males Comparable, but of Particular Significance for Femalesc Malaria X (in pregnancy) X Onchocerciasis X (stigmatization) Schistosomiasis X (ages 15–44) X Trypanosomiasis X (ages 0–4) X Trachoma X (neonatal vaginitis) X Sexually transmitted diseases/HIV/AIDS (Chapter 11) HIV/AIDS X Other sexually transmitted diseases X Other diseases with special implications for females Measlesf X (ages 0–4) Sickle-cell diseaseg X Obstetric morbidity/mortalityb (Chapter 4) Anemia X Cardiomyopathies X Diabetes X Dracunculiasis X Genital mutilation, sequelae X HIV/AIDS X Hypertension X Iodine deficiency/goiter X Leprosy X Malaria X Onchocerciasis X Protein-energy malnutrition X Schistosomiasis X Sexually transmitted diseases X Trypanosomiasis X a The order of this table follows the order of the book chapters. Order under each rubric is alphabetical, and no priority of any kind is implied. b Males obviously do not have obstetric and gynecologic problems. All the health problems listed, however, occur in both males and females. The difference is that they may be exacerbated by the processes of pregnancy and parturition. This gender differential needs to be taken into account, both in research and in application. c "Significance" is defined here as having an impact on health that is different in its implications for women than for men for any reason —biological, reproductive, sociocultural, or economic. d Because of limitations in what we know about adverse occupational and environmental factors in many areas of where females live and work, these designations should be considered pieces of a research agenda, a list of unanswered questions about the nature, extent, and sequelae of different exposures for female health. e "Other" includes ill-fitting personal protective equipment designed for men; working under recommended exposure limits for occupational hazards designed for healthy, well-nourished men in the developed countries working an eight-hour day; exposure to malaria prophylaxis and infection not only from malaria but also from other tropical infectious diseases that pose serious risks for pregnant women or are exacerbated by pregnancy; exposure to uncontrolled chemical and ergonomic hazards that pose risks for the fetus; effects of chemicals, indoor smoke, and injury hazards that extend to infants; work-time requirements that further compromise breastfeeding and infant nutrition; and lack of sufficient "off time" to allow for appropriate rehabilitation from injury or work-related disease, thus elevating the risks from hazardous exposures or increasing female workloads. f Measles is, of course, not a tropical infectious disease. It is included in this study because of measles-related research that suggests the possibility of some fundamental difference at the level of the immune system between males and females that could be relevant to the tropical infectious diseases. g Sickle-cell is a genetic disease with special implications for childbearing.
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IN HER LIFETIME: Female Morbidity and Mortality in Sub-Saharan Africa transmitted diseases, and the sequelae of female genital mutilation. Anemia, malaria, and schistosomiasis form another cluster, as do diabetes and hypertension. Nervous system disorders This chapter assembles, for what seems to be the first time, an enormous body of information about nervous system disorders, a disease area virtually ignored in national or international health thinking. It is also the first effort to transect this set of disorders by gender. The compilation produces two major surprises. First, the burden generated by nervous system disorders appears heavier in African communities than in comparable communities elsewhere. Second, the female portion of that burden appears to be greater in quantitative terms than the male share. The burden of the demyelinating diseases, epilepsies, headache syndromes, the neurologic complications of collagen diseases, and toxic and nutritional disorders are all larger for females than for males, and all categories produce considerable disability, as well as a nontrivial and increasing amount of mortality. Overall, these diseases reflect the contribution of complex genetic potentiation, in some cases interacting with a variety of environmental factors that, at a minimum, contribute to confounding the understanding of the etiology and processes of the disease in question. Mental health problems There are two striking aspects of this part of Table 1-1: one is that it contains a single listing. The other striking aspect is invisible in the table, because it has to do with what is not included. Well-executed, community-based studies reveal that childbearing produces significant psychological morbidity among females in Sub-Saharan Africa, the region with the highest fertility rates in the world. This is a terribly important point. It is also significant that African women, despite substantial problems, adversities, and burdens, do not exceed males in rates of defined psychological disorders, as do the women of the developed countries. Even in the case of depression, which shows the greatest evidence of an excess among females in most studies throughout the rest of the world, the African picture is quite different: males demonstrate rates of the disorder that are comparable to or higher than the rates of females. The first questions that spring to mind are linked: Why do African women find childbearing so anxiety-provoking, and what factors make them otherwise so much more psychologically resilient than women elsewhere in the world? This pair of simple queries could be vastly illuminating. Selected chronic diseases Of the chronic diseases considered, most are unique to females by virtue of their physiology: cervical, uterine, and ovarian cancers, and choriocarcinoma; the cardiomyopathies associated with pregnancy; and gestational diabetes. Rheumatic heart disease, which is second only to hypertension and its complications among cardiovascular disorders resulting in hospital admissions in Sub-Saharan Africa, appears to be more common and to be associated with higher rates of morbidity and mortality in Sub-Saharan African females than in males. Cancers of the skin, and possibly those of the bladder, show a disproportionate burden in females compared with males, although the finding for bladder cancer is speculative and based on the assumption that females may be at a higher occupational risk of exposure to schistosomiasis, a risk factor for bladder cancer. The evidence presented in Chapter 10, which indicates higher DALYs for schistosomiasis in males than in females, suggests otherwise. Other gender-related environmental or occupational exposures, however, such as cooking fires in enclosed spaces, may place females in the region at elevated risk for other chronic diseases, particularly chronic obstructive pulmonary diseases. Injury There are three categories of injury that affect females disproportionately in Sub-Saharan Africa: household burns, domestic abuse, and rape and sexual assault. Household burns might be considered a hazard of inadequate domestic technology in any country where open cooking fires are the norm. The distribution of the other injuries, however, appears similar to that in females everywhere. These injuries also appear to be underreported for domestic and cultural reasons similar to those found in the rest of the world, but the numbers are increasing nonetheless. For females in Sub-Saharan Africa, violence—in the context of civil strife, at school, at work, and at home—leads the list of the causes of morbidity and, in some cases, mortality resulting from injury. And, as indisputably "biomedical" as its sequelae may be, this violence has its roots in the very foundations of gender relationships, and its remedy will require the involvement of many other sectors and disciplines beyond the health sector, as it does worldwide. The health sector can heal, but it cannot cure what resides in the larger society.
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IN HER LIFETIME: Female Morbidity and Mortality in Sub-Saharan Africa Occupational and environmental health Until very recently, consideration of this topic has been heavily skewed toward the developed countries and male subjects. There is very little work, published or unpublished, looking specifically at women, and most treatments of the subject of work and environmental variables are not differentiated by gender. This deficit is particularly unfortunate, given that females in Sub-Saharan Africa make more substantial contributions to the world of work than their counterparts in many other regions of the world, and thus can be considered to be at elevated risk of exposure to the kinds of adverse occupational and environmental health factors associated with work in the region. Although the conclusions of this chapter had to be based on analysis and inference from trends and emergent issues found in gender-blind material combined with analysis of women's work in Africa, these data provide strong indications of a substantial number of adverse occupational and environmental factors that burden female health status disproportionately in the region. These factors include increased exposure to indoor air pollution, toxic wastes, and organic dusts from food processing; job overload; lack of job control; and ergonomic stressors, among others. Tropical infectious diseases The first conclusion in this area is inferential and concerns what might be called "diseases of disfigurement"—dracunculiasis, leishmaniasis, leprosy, onchocerciasis, and trypanosomiasis. We presume these to be more burdensome for females than for males because of their effects on prospects for marriage and motherhood, and that these effects may be particularly cruel for adolescent girls. Adolescents tend not to present for clinical attention because they are generally asymptomatic; fear of stigma may also inhibit the seeking of care. They thus do not avail themselves of therapies that could resolve some of these diseases and prevent their lifelong sequelae. This is a special challenge to the provision of care. Five of the tropical infectious diseases generate a burden greater for females than for males: the pelvic infection and consequent reproductive damage from dracunculiasis and the greater absolute burdens of malaria, schistosomiasis, and African trypanosomiasis for females of certain ages. The size of the absolute and relative burden of trachoma for females is frankly startling, a finding that has been treated largely by silence in the literature. That a powerful preventive tool—handwashing —is available that could diminish this burden makes the situation especially sad. In environments where water is dear, this intervention is not simple, but it is possible. Although they are often viewed as episodic, the tropical infections produce large burdens of disability. They also act synergistically with one another and with some nonparasitic diseases to produce more severe disability and, sometimes, mortality where it might not otherwise occur. The burden of these diseases, which once weighed more heavily on males, now seems to be more evenly distributed between the sexes. Migration and changes in the division of labor appear to lead the list of factors contributing to this shift, but without solid epidemiologic longitudinal data, this conclusion remains a supposition. The final conclusion has to do with the traditional biomedical position that the only interesting distinctions between male and female susceptibility to tropical infectious diseases lie in the relationship to female reproductive function. This preconception has biased biomedical research toward pregnancy and pregnancy outcomes, placental transmission, and maternally induced protection in the neonate; excluded understanding of nonreproductive effects; and limited gender-relevant research to diseases that produce these effects. Science must often proceed narrowly to achieve depth of understanding, and traditional research (on malaria, for example) has provided valuable insights into the workings of all parasitic diseases. Nevertheless, it is time to broaden the focus. In addition, although differential exposure is a dominant factor in infection, there are tantalizing clues around the sequelae of parasitic infections (for example, schistosomiasis) and research on nonparasitic infections (such as cross-sex transmission of measles) that raise profound questions about the existence of genetic, physiologic, or morphologic traits associated with sex that either exacerbate or attenuate diseases in males and females. There may be basic mechanisms at the cellular level related to the relative biological strength of the sexes that will have consequences for research on sex and on infection, and may ultimately lead to improved control of severe and potentially fatal infections in general. Sexually transmitted diseases, including HIV infection The burden of all sexually transmitted diseases (STDs) in Sub-Saharan Africa is absolutely greater for females than it is for males, and it is growing. The causes and results of that burden remain dauntingly circular. The most important gender differentials are behavioral and
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IN HER LIFETIME: Female Morbidity and Mortality in Sub-Saharan Africa TABLE 1-2 Burden of Morbidity and Mortality Across the Female Life Span in Sub-Saharan Africa
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IN HER LIFETIME: Female Morbidity and Mortality in Sub-Saharan Africa women and because at least 60 percent of them bear their children outside any formal health facility, the extent to which this litany of morbidity actually plays out during these years is known only in the most fragmentary way. Indeed, the question may not even have been posed in any organized fashion, an oversight that requires prompt remedy. Another complex puzzle involving this age group is the apparent disjuncture implied by the combination of fertility that is still the highest of all regions, despite a falling trend; a large number of induced abortions; low utilization of modern contraceptives; and significant psychological morbidity around childbearing. Menopause and Post-Menopause (age 45 onward) We know little about menopause in Sub-Saharan Africa. We can hypothesize from the view of Western medicine that menopause is a biological pathology, or from the ethnographic view that menopause is a natural, temporary, and, on balance, desirable event from the standpoint of increased status for women and decreased menstrual requirements. 9 At present, it appears likely that the latter perspective prevails in Sub-Saharan Africa, but the evidence is scanty. From a biological perspective, the cumulative effects of different nutritional deficits may contribute to earlier menopause, but again we do not know. The number of women in Sub-Saharan Africa who reach the ages that permit full development of the degenerative diseases is increasing. Hypertension and stroke; diabetes; rheumatic heart disease; cardiomyopathies; chronic obstructive pulmonary disease; and cancers of the genital tract, breast, bladder, liver and skin have all appeared in the region. Stroke is now recognized as an increasingly important cause of morbidity and mortality in Sub-Saharan African women, as is coronary artery disease, which seems to have a poorer prognosis for women than for men in the region. Women also display higher glucose tolerance, a precursor of full-fledged diabetes mellitus. Rates of cervical and skin cancers—already high, and rising as women live longer—are also worthy of note. RESEARCH NEEDS The committee was pleased to learn that its concern about inadequate information was unfounded. A great deal has been written about Sub-Saharan Africa in many areas germane to this report. At the same time, gaps and limitations will continue to constrain knowledge in areas where there really are no data; where data are currently organized in ways that limit their usefulness, but could be improved by reconsideration and reconfiguration; where additional information will be needed to properly design and assess interventions; and where current clues suggest potential breakthroughs. The committee's conclusions take into account the current reality that funds for research, always scarce, show no signs of becoming more ample. Thus, while the need for good, insightful, systematic research remains constant, research in a resource-poor situation may prove most useful if focused on design and evaluation of interventions that aim to reduce morbidity and mortality. Intellectually, the committee does not consider research as something distinct from action; research is action where it makes action plausible or possible. The committee also determined that, despite the undeniable differences between Sub-Saharan Africa and other regions, and despite the region's great heterogeneity, much research done elsewhere can serve here, at least for preliminary purposes. Work in other parts of the world on etiology, disease process, and case management of chronic diseases, for example, is sufficient for the design and testing of interventions in the African context. The summary of the research needs identified by the committee reflects these views. Table 1-3 summarizes these requirements in four research categories: (1) epidemiologic, (2) biomedical, (3) applied/operational, and (4) ethnographic. Category 1, epidemiologic research, includes national and regional surveys, population-based studies, and certain kinds of facility-based studies. Category 2, biomedical research, includes areas of fundamental research that might produce understandings about immune response and disease process, not only in Sub-Saharan Africa, but elsewhere as well, and clinical research for the testing of low-cost preventive, curative, palliative, and diagnostic technologies and interventions. Category 3, applied and operational research, includes all research concerned with the application and evaluation of program interventions, ranging from experiments in health delivery innovation to health education approaches. Category 4, ethnographic and behavioral research, includes any research into aspects of sociocultural and socioeconomic context that affect female health, positively or negatively, as well as studies of knowledge, attitudes, and practices that are relevant to the design and assessment
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IN HER LIFETIME: Female Morbidity and Mortality in Sub-Saharan Africa of any of the interventions in categories 1, 2, and 3. We ask the reader to turn to the last section of each chapter for a more detailed discussion of research needs in each biomedical area and, of course, to the text. This report consistently calls attention to areas where research is required or advisable. In every case, the health problem in question will necessarily intersect in some fashion with the ''ways of life of people." A few of these intersections have special relevance to thinking about female morbidity and mortality across the life span. The first is "medical distance," or gaps in knowledge about some fundamental gender -and sex-specific differences and the ways these differences affect community and individual experience of disease, episodically and throughout life. As long as such gaps persist in any major way, they will hamper health systems' efforts to encompass them in some explicit and methodical fashion. There seem to be, for example, both genetic and nongenetic aspects of differential susceptibility that have implications across the life span. The second issue is the manner in which females engage in health-seeking behavior across their life span, both for themselves and their families; how this varies by health problem and age; and how greater life expectancy and the experience of "new" diseases is managed. We need to approach this understanding in a more focused way, parsing "health-seeking behavior" into preventive actions and the seeking of treatment. It is possible to see these as two different domains of behavior, with different rules. Inadequate understanding of these rules may partially explain why attempts to modify behavior toward preventive goals are sometimes less than successful. Ethnographic research in Sub-Saharan Africa has been abundant. Nevertheless, like most such research, it has been carried out in small samples and, correctly or incorrectly, tends to be seen as anecdotal and therefore not powerful enough for the making of national policy. Thus, while it is possible to talk about traditional practices that may have extensive effects on female health status, it is not possible to determine how extensive these effects might be. Traditional dietary practices related to childbearing have a significant effect on female nutritional status, for example, but the extent of this effect is unknown. Nor is it known to what degree the use of traditional healers, in the absence of other health services, is truly deleterious to health. Methods of synthesizing what is presently available in the literature and ferreting out new data, economically yet reliably, is near the top of the list of contextual work that needs to be done. It has been possible to focus policy attention on the dilemma of female genital mutilation, with its profound biomedical implications and its equally profound cultural roots, precisely because its prevalence has been quantified to a degree that has attracted the world's attention. African women have become vigorously involved in this issue. It may be the African women, in the final analysis, who can best design the "Essential National Health," the biomedical-cum-social research to answer the many remaining questions about sex, gender, and disease. NOTES 1. Tinker, A., P. Daly, C. Green, et al. 1994. Women's Health and Nutrition: Making a Difference. World Bank Discussion Paper 246. Washington, D.C.: World Bank. World Bank. 1994. A New Agenda for Women's Health and Nutrition. Washington, D.C.: World Bank. 2. United Nations Fund for Population Activities. 1994. Programme of Action of the United Nations International Conference on Population and Development. Cairo and New York. 3. Cf. E. Fee and N. Krieger. 1993. Understanding AIDS: historical interpretations and the limits of biomedical individualism. American Journal of Public Health 83(10):1477–1486. G. Santow. 1995. Social roles and physical health: the case of female disadvantage in poor countries. Social Science and Medicine 40(2):147–161. C. Vlassoff. 1994. Gender inequalities in health in the Third World: uncharted ground. Soc. Sci. Med. 39(9):1249–1259. 4. M. Holloway. 1994. Trends in women's health: a global view. Scientific American, August:76–83. 5. C. J. L. Murray and A. D. Lopez, eds. 1994. Global Comparative Assessments in the Health Sector: Disease Burden, Expenditures and Intervention Packages. Geneva: World Health Organization. 6. C. Vlassoff. 1994. Gender inequalities in health in the Third World: uncharted ground. Soc. Sci. Med. 39(9):1249–1259. 7. United Nations Development Programme (UNDP). 1993. Young Women: Silence, Susceptibility, and the HIV Epidemic. New York. 8. A. Mansaray. 1992. Adolescent health in Sub-Saharan Africa in the 1990s: The role of social and behavioural research. Paper presented at the First International Conference on Social Science and Medicine, Africa Network, Nairobi, Kenya, August 10–13, 1992. 9. S. Chirawatkul and L. Manderson. 1994. Perceptions of menopause in northeast Thailand: contested meaning and practice. Social Science and Medicine 39(11):1545–1554.
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IN HER LIFETIME: Female Morbidity and Mortality in Sub-Saharan Africa TABLE 1-3 Summary of Research Needs, Female Morbidity and Mortality in Sub-Saharan Africa Epidemiologic Research Biomedical Research Applied/Operational Studies Ethnographic and Behavioral Research Continuation/expansion of internationally sponsored information on cause-specific mortality/morbidity, ensuring that all data are disaggregated by sex and age, and that methods are standardized Studies of micronutrient deficiencies in girls and women Clinical-level recording and extra-clinical gathering of medical data on sequelae of female genital mutilation Case analyses (audits, confidential inquiries) to identify causes of maternal deaths in health care system dysfunction; design of case management algorithms Qualitative research on nature and magnitude of impact and management of menopause, and relationship of nutritional and general health status at onset Collection of data on causes and prevalence of disabilities Carefully designed cohort-tracking series studies to follow life span course in selected "population laboratories" Study of reasons for and implications of poorer prognosis for women than men of African descent with coronary artery disease Determination of feasibility and effectiveness of different preventive interventions for stroke, e.g., control of high blood pressure Systematic research (quantified ethnographic studies or meta-analysis) of local dietary practices that impinge on diet quality during pregnancy or postpartum Use of sentinel disease surveillance systems to identify and monitor changing patterns in mortality and morbidity Continued refinement of DALYs, and underlying assumptions and data base, and simplification of methodology for regional and local use Study of greater frequency of skin and other systemic disorders related to use of skin-lightening creams and ointments containing steroids and other toxic chemicals Confirmation of higher rates of glucose intolerance in SSA women than in men Nutrition interventions designed to account for nutrition-related toxic syndromes of the nervous system Research to determine how best to incorporate management of common neurologic diseases into primary care, and design of corresponding training Synthesis of work on similarities and differences between biomedical and traditional indigenous concepts of etiology and morbidity from different tropical infectious diseases Compilation of information on management of tropical infectious diseases particularly those producing disfigurement Modifications of existing longitudinal surveys of nutrition status, particularly child malnutrition in Sub-Saharan Africa, so that data are collected/analyzed/ reported by age and gender Chronic effects of pesticides and other home chemicals on peasant farmers and others in plantation and monocropping production Impact of bearing heavy weight at different ages and effects across the life span and life cycle with regard to degenerative osteoarthritic problems Developing means to improve nutrition for lactating mothers and protocols for guiding them toward best lactation practice Documentation and practical cataloging of creative approaches to better obstetric health care, treatment guidelines and algorithms Studies related to STD/HIV control: —factors determining sexual, health-seeking, and reproductive behaviors —factors determining women's social status —effects of female social status on sexual, health-seeking, and reproductive behavior Collection of nutrition data on neglected populations: adolescent girls; nonpregnant, nonlactating women; women past reproductive age Population-based studies of mortality, morbidity, and disability associated with induced abortion Respiratory damage, notably from chronic bronchitis, and reduced lung function across the life span Development of surrogate endpoints for maternal mortality Prevalence and trends in smoking in SSA females, and risk factors for smoking initiation among adolescent females, for purposes of developing appropriate intervention programs In-depth examination of social, economic, and mental health determinants of violence Mental health impact of psychosocial stressors related to work and environment, particularly effects of chronic fatigue
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IN HER LIFETIME: Female Morbidity and Mortality in Sub-Saharan Africa Epidemiologic Research Biomedical Research Applied/Operational Studies Ethnographic and Behavioral Research Integration of facility-based and population-based mortality and morbidity data, age- and sex-disaggregated for estimation of total impact of injuries in communities Key chronic disorders —Rheumatic heart disease —Hypertension and stroke —Cardiomyopathies —Coronary artery disease —Leukemias, lymphomas —Cancers of cervix, breast, uterus, ovary, skin, bladder —Choriocarcinoma —Diabetes —Chronic obstructive pulmonary disorder Evaluation of negative effects of lactation on mothers Study of dynamics of differential prevalence of psychiatric disorders in SSA females (collaborative, coordinated) Study of effects of perinatal depression on course of pregnancy, effects of postpartum depression on mother and neonate Studies of interaction of life events and expressed emotion and genesis and maintenance of depression Prevention strategies for preventing and controlling disability from injuries of importance to SSA females, including systems of trauma care and rehabilitation techniques Studies of magnitude, determinants, and variables affecting onset, course, and outcome of post-traumatic stress disorders, in order to define effective treatment approaches Collaborative, multidisciplinary study of causes, risk factors, and reporting of violence, toward design of preventive strategies and case management Studies of decision making in treatment-seeking behavior, including role of stigma in disease management Population-based studies of trachoma, prevalence and risk factors Risk factor studies Comparative surveys on risk factors for chronic disease —Hypertension: serum cholesterol and lipid fractions —Obesity —Nutritional risk factors Major risk factors for stroke in women Research into effects of co-infection and comorbidity with tropical infectious diseases, e.g., impact of HIV infection on female capacity to control falciparum parasitemia Development of simple, low-cost instruments for diagnosis of tropical diseases with similar symptomatology Assessment of occupational exposure limits, given gender and multiplicity of other environmental stressors Risk factors for domestic and work-site injuries Environmental and occupational risk factors for cancers and chronic obstructive pulmonary disease Risk factors for epilepsy Characterization of extent and severity of nutrition-related toxic syndromes of the nervous system Cell-level research on sex differences in severity, duration, and intensity of disease (e.g., measles) Better description of natural history of subclinical pelvic inflammatory disease Better understanding of impact of STDs/HIV on pregnancy outcomes, and influence of pregnancy on course of STDs Operational research related to STD/HIV including but not limited to: —integration of STD control with other programs —characteristics of health care systems that would better serve women's needs —counseling, testing, partner notification in resource-scarce, high-risk environments —program design for high-risk groups —involvement of traditional practitioners —development of better management algorithms for asymptomatic as well as symptomatic STD infections
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IN HER LIFETIME: Female Morbidity and Mortality in Sub-Saharan Africa Epidemiologic Research Biomedical Research Applied/Operational Studies Ethnographic and Behavioral Research Hospital case series investigations of higher prevalence and mortality rates for rheumatic heart disease in SSA females Development of simple, cheap treatment regimens for HIV-infected pregnant women to reduce perinatal transmission Development of noninvasive, simple, rapid, affordable diagnostic tests for identification of women with asymptomatic STD infection —development of simple management algorithms for opportunistic infections and neoplasms Intervention trials to help women, especially adolescents, in skills and self-esteem building to reject unsafe sexual behavior Development of female-controlled prevention methods, e.g., safe intravaginal microbicidal agents, with or without contraceptive effect Studies of long-term effects of childhood malnutrition on female work capacity Studies of functional consequences of adult malnutrition, including, but not limited to, physical consequences NOTE: DALY = disability-adjusted life year; SSA = Sub-Saharan African; and STD = sexually transmitted disease.
Representative terms from entire chapter: