Annals of Tropical Medicine & Parasitology
ISSN: 0003-4983 (Print) 1364-8594 (Online) Journal homepage: http://www.tandfonline.com/loi/ypgh19
Raising awareness about reproductive morbidity W. Graham, M. Berer, J. Price & L. Brabin To cite this article: W. Graham, M. Berer, J. Price & L. Brabin (1992) Raising awareness about reproductive morbidity, Annals of Tropical Medicine & Parasitology, 86:sup1, 11-18, DOI: 10.1080/00034983.1992.11812730 To link to this article: http://dx.doi.org/10.1080/00034983.1992.11812730
Published online: 15 Nov 2016.
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Citing articles: 6 View citing articles
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Date: 08 August 2017, At: 04:27
Annals ofTropical Medicine and Parasitology, Vol. 86, Supplement No. I, 11-18 (1992)
Raising awareness about reproductive morbidity
Downloaded by [University of Saskatchewan Library] at 04:27 08 August 2017
BYW.GRAHAM Maternal and Child Epidemiology Unit, School ofHygiene and Tropical Medicine, London WCJE 7HT, U.K. M.BERER 16 Sach Road, London ES 9LJ, U.K.
J. PRICE AND L. BRABIN* School of Tropical Medicine, Pembroke Place, Liverpool L3 SQA, U.K.
Lack of awareness of the extent and effect of reproductive morbidity on the health and quality oflife of women in developing countries is evident at national, community and individual levels. Raising awareness at national level requires population-based, epidemiological information which must be validated. At community level, public opinion mediates womens' actions when they are sick and fear of social consequences provides a barrier to treatment. Individually, women find it difficult to talk about sexual reproductive health and its management. Methodologies currently being developed for raising awareness at all levels are described.
A World Health Organization Technical Group Report has defined reproductive morbidity as any condition or dysfunction of the reproductive tract, or any morbidity which is a consequence of reproductive behaviour including pregnancy, abortion, childbirth or sexual behaviour (Safe Motherhood, 1990). Lack of awareness that reproductive morbidity (obstetric or gynaecological) is a serious health problem of women should be a cause for concern. A study by Bang et al. ( 1989), in two Indian rural villages, of gynaecological disease in 650 women is one of only a few studies which have aimed for a community-based sample of women in a developing country. Their study has raised questions and stimulated interest in developing methodologies to investigate reproductive morbidity, to improve the quality of prevalence data and increase community interest in programmes to detect and manage gynaecological disease. The study also showed the inability of many women "Author to whom correspondence should be addressed. 0003--4983/92/SIOO!l +08 $08.00/0
to distinguish normal and pathological conditions and reflects the fact that health services have done little to teach women to care for themselves between pregnancies. Raising awareness is necessary to encourage health care providers to identify common morbid conditions and their underlying causes. This should lead to a policy for the management of reproductive morbidity which increases women's control over sexual health and confidence to seek treatment. Raising awareness is integrally related to the collection and feeding back of information. Information of different types and precision is needed to influence opinion and motivate action at several levels. At the national level, the process of increasing awareness is one of persuading policy makers to give priority to the issue of reproductive morbidity. They are unable to do so in the absence of epidemiological data which demonstrate the significance of the problem. Raising awareness at community level involves increasing knowledge and concern about © 1992 Liverpool School ofTropical Medicine
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TABLE Methodologies for detecting reproductive morbidity* CROSS SECTIONAL
e
e
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e
e
Interview, physical examination and laboratory tests for all eligible women or a representative community sample; Interview of all eligible women, but physical examination and laboratory tests for symptomatic women only; Interview, physical examination and laboratory tests for all women attending defined local health care serv1ces. Interview alone. t
LONGITUDINAL
e
Interview of pregnant women with follow-up interviews during the interpartum period, through to the next pregnancy. t *Adapted from Safe Motherhood (1991). tinterview methodologies yield data on self-perceived morbidity with no validation by clinical diagnosis.
adverse effects on women's health and reproductive success when there are no adequate and accessible services to detect, treat and advise on gynaecological complaints. At the individual level raising awareness requires help for men and women to overcome embarrassment and gain new knowledge about sexuality and reproductive health and support to women to confront social attitudes which prevent them seeking medical help. RAISING AWARENESS AT THE NATIONAL/INTERNATIONAL LEVEL Community/population-based information, required for National Planning, can be defined in the following ways (Graham and Campbell, 1990): (a) it refers to aggregate level information (rather than the individual/case management level); (b) it attempts to be representative and statistically reliable; (c) it is not health facility based. There are several approaches to the collection of community-based data on reproductive morbidity. The merits of each have to be considered in relation to the resources available to researchers, the level of existing health services available to the community studied (i.e. community resources), the spectrum of disease to
be investigated, and the relative validity of different methodologies. One set of alternative methodologies has been defined (Table). Prevalence data from community-based studies will be a stimulus to successful policy making only if: (a) thevalidityofthedatacan be substantiated; (b) there are clear priorities for action; (c) the underlying causes of disease can be identified and ameliorated. (a) Establishing and Improving Validity The question of validity is important since studies with questionable methodologies will be disregarded by policy makers and are of little value in raising awareness. There are two main aspects to consider: firstly, determining validity and secondly, improving validity. Both are the subject of current research (Campbell and Graham, 1991; Safe Motherhood, 1991). The validity of data depends on the validity of the measurement tools which, in the case of reproductive morbidity, may be divided basically into questionnaires and clinical or laboratory-based tests. Whilst the former yields self-perceived morbidity, the latter is usually regarded as providing information on 'true' or objective disease (Kroeger, 1985). The debate on which is preferable is unresolved,
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AWARENESS OF REPRODUCTIVE MORBIDITY
although it is now recognized that the decision depends primarily on the uses of information. Thus, for example, as regards understanding patterns of careseeking, it could be suggested that selfperceived morbidity of women is more pertinent than objective measurement. The debate is further complicated by uncertainty over whether self-perceived and physically-diagnosed conditions represent the same disease entities (Graham and Campbell, 1990). These issues notwithstanding, the main approach to establishing validity is by comparison of findings from different sources which use different methodologies. This requires that assumptions are made as regards 'the truth' or 'gold standard'. Laparoscopy, for instance, is generally viewed as the ultimate test for diagnosing pelvic inflammatory disease and is used to validate clinically assessed cases. Similarly, high vaginal swabs could be employed to confirm infections of the lower reproductive tract suggested by symptoms reported by women during interviews. Determining validity is often based on a sub-sample of all study subjects, in part owing to the costs and feasibility of using more than one form of assessment, especially in communitybased data collection. Bang et a/. ( 1989), for instance, confined validity assessment to symptomatic women who were offered examinations on the basis of symptoms identified initially through interviews. This approach is extremely sensitive to refusal rates. In a recent study of reproductive tract infections by Wasserheit et a/. ( 1989), almost a quarter of all women reporting symptoms refused to be interviewed. In a multi-centre study by Omran and Standley ( 1981 ), refusal rates for gynaecological examinations ranged from 28% in Syria to 63% in India. An alternative approach often used in survey research for assessing the validity of questionnaire instruments, called 'seeding', involves following-up women who have undergone clinical or laboratory-
13
based examinations at health facilities and for whom the outcome is known. The interviewers should be 'blind' to the earlier assessment and will thus attempt to identify morbidity solely on the basis of the questions asked. This form of assessment is usually undertaken as part of a pilot study, and thus validity is established for the questionnaire rather than the results from the final survey. Improving validity in the case of clinical or laboratory tests depends primarily on refining the diagnostic skills of health personnel and the precision of equipment and techniques, as well as on the greater availability of test facilities. Data collection based on questionnaires has a wider range of options for increasing validity, which fall into two main areas-those related to the interviewing context and those related to the interview schedule. In the former case, the use of well-trained interviewers, the exclusion of proxy respondents, and the selection of appropriate recall periods can all contribute to high quality data. The questionnaire schedule, on the other hand, can be designed to improve the validity of the results by means of question-wording which is unambiguous, culturally sensitive and consistent with local terminology. The use of tracer conditions or symptom algorithms has also been shown to improve validity (Kroeger, 1988), as well as being used to arrive at probabilistic assessments of reporting accuracy (FigaTalamanca et al., 1986).
(b) Establishing Priorities TheW orld Health Organization Technical Group on Reproductive Morbidity recommended that the highest research priority should be given to determining the prevalence of chronic obstetric morbidity (Safe Motherhood, 1990). The incidence of acute obstetric morbidity, and the prevalence and incidence of gynaecological morbidity were thought to be oflower priority. No justification for this order of priorities was given. While a case can be
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made for giVlng priority to conditions known (a) to endanger health and reproductive potential and (b) to involve high social and economic costs to women and their families, it must be emphasized that there may be a conflict between the interests of health planners and the priorities of women themselves (Graham and Campbell, 1990). Also, the health significance of some conditions-such as menorrhagia, which increases the risk of anaemia (Cohen and Gibor, 1980)-has not been investigated in women in developing countries and the priority that should be accorded to them still requires evaluation.
(c) Understanding Underlying Causes Prevalence data gives an indicator of the frequency with which a morbid condition is found in a given population, but it does not establish cause. Significant associations between risk factors and clinical status can be correlated on the basis of prevalence data which may help identify underlying causes-although this depends on the range and type of variables selected for investigation. The strength of the association is related to the validity of the data and the scale of the investigation. Information on risk factors which can be accurately diagnosed or investigated by questioning rather than examination, such as obstetric history, tends to be more readily available. Improving the availability and validity of data on a wider range of indicators of risk will provide better information on underlying causes. In addition, in-depth information, such as that collected in case histories, will be needed-not simply to verify underlying causes, but for perceptions of women on how to deal with them. Moreover, the term 'causes' needs to be interpreted at several levels (as now recognized in the case of maternal deaths (WHO, 1986) to include a continuum from broad determinants, such as low socio-economic status, to the more proximate factors, such as reproductive his-
tory, to the direct pathogenic causes, such as chlamydia. Increasing awareness may not lead to appropriate interventions unless the underlying causes associated with a high prevalence of morbidity are understood. To do this, other approaches will be useful, one of which is considered below, in the section Individual Awareness and Reproductive Health: A Case Study. RAISING AWARENESS AT COMMUNITY LEVEL Women face many difficulties in dealing with reproductive health problems. They need access to information about the causes and practical treatments available, as well as to appropriate health services (Berer and Ray, in press). In the face of suboptimal services, women live with symptoms, pain and morbidity. Individual women may perceive they have gynaecological problems, but if other women with similar problems seek no help, they will fear ridicule for seeking medical care for problems considered not to be serious or not culturally accepted as illness. Making a course of action socially acceptable is basic to what might be termed community support, and is a more helpful concept than that of 'community participation'. Bang and Bang (l989) showed that an effective way of doing this was through the media, using health fairs, public plays or workshops, making sure to involve community leaders, and local women's organizations. Such activities create a climate of opinion for talking to men about women's health problems, and for personal interviews with women about their reproductive and sexual histories. To say that women are unaware of reproductive morbidity as mentioned above, is not accurate. Women who do not attend clinics or hospitals may erroneously be seen as ignoring their health problems. In fact, many herbal and other traditional medicines are specifically intended and sold for reproductive health problems. Women's actions take place in a social framework, within which public opinion mediates their course of action. Community opinion, both men and women's opinions, may
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15
hinder efforts to seek better treatment through a variety of mechanisms, such as:
for women to take time to attend for pre-natal care.
(a) Misinformation Confronting misinformation is essential since, if not challenged, it will become a block to change. For example, gynaecological disease is sometimes linked to the use of contraception, in spite of the fact that many women never use contraception and still have disease (MacCormack and Draper, 1989). Yet studies have shown a statistical association between gynaecological disease and past or present contraceptive use. Wasserheit et a!. ( 1989) found that, in a rural community in Bangladesh, women who used IUDs were four times as likely to report symptoms of reproductive tract infection, and seven times as likely to have confirmed infection. It would be important to explain to women why their perceptions are only partially right.
(c) Feelings of Humiliation There is a scarcity of female gynaecologists and obstetricians to examine and treat women, and this is a major deterrent to women in many cultures. This is but one aspect of the health provider-patient relationship which women, especially women of poorer socio-economic status, find deterring.
(b) Barriers to Treatment It is unlikely that women's lack of knowledge or awareness will be the main, or the only reason for failure to seek treatment. Reasons can range from lack of time; insufficient money to pay for medical visits, drugs, or a stay in hospital; physical inaccessibility; refusal of husband or senior relatives to give permission; no transport; previous adverse experiences ofbeing treated ineffectively, rudely or in a culturally inappropriate manner. To meet some of the problems, a radio programme called 'Your Wife's Health is Important. Look After Her' was organized in Sokoto State, Nigeria, to convince men that their wives needed medical help during pregnancy and child birth (M. Berer, unpubl. obs.). This was supplemented with a television programme, a vehicle with a public address system, and posters displayed in local villages. In each village, the head was contracted to call men together to listen to the talks and be given posters. Such programmes make it more socially acceptable
(d) Fear of Social Consequences Treatment for some reproductive problems, especially sexually transmitted diseases, raises the problem of infidelity, which disturbs not only the relationship between husband and wife but also that between their respective families. For example, women are often unable to suggest use of condoms to their husbands because it would imply that the husband was involved in extra-marital relationships. Conversely, husbands who find their wives suffer from a sexually transmitted disease may resort to physical violence or divorce in retribution, even though the source of infection may have been the husband himself. While still infective, women will be advised not to engage in sexual relations with their husbands, which may lead to tension in the marital relationship. If the community of women is not aware of the need for supportive action, individual women will be unable to initiate and sustain courses of action in the face of opposition from family and community.
INDIVIDUAL AWARENESS AND REPRODUCTIVE HEALTH: A CASE STUDY Raising women's awareness about reproductive morbidity cannot be separated from questions about women's sexuality and the social idiom in which this is expressed. The Society for Social Uplift for Rural Action (SUTRA) was started some 12 years ago in
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the foothills of the Himalayas by an Indian social worker from Maharashtra. The organization has developed a strong base in women's groups within the surrounding villages and links with sister organizations in neighbouring districts. Over the years, the members have been involved in local development initiatives, such as village water supplies and a statewide campaign round issues such as deforestation and liquor control (Society for Social Uplift for Rural Action, 1990; Price, 1992). Despite women's increasing involvement in development programmes and campaigns, they continue to be affected by the patriarchal nature of local society in Himachal Pradesh. Women bear a major responsibility for maintaining family honour. Biological events such as menarche and childbirth are socially significant for the family and community, and senior women and men are watchful that these events are passed through in accordance with social norms. There is little room for women to talk about sexual matters, and girls often turn to friends or sisters rather than to their mothers for guidance. Once married, maternal and child health care services may be available, but there is little recognition given to gynaecological problems, sexually transmitted diseases, violence against women in sexual relations and the psychological impact of these (Sarin, 1989). In 1986, in the same place, in response to women's demands for access to skills and information that would increase their effectiveness in addressing local issues, a series of workshops was organized. Their primary purpose was not to collect information for research but to support women staff, particularly in dealing with issues related to women's health, sexual relations and violence against women. The staff were all local, having personal experience of the day-today problems of survival, and of the disadvantages faced by women, such as illiteracy.
Workshop Processes (Society for Social Uplift for Rural Action and Central Social Welfare Board, 1987) The workshops were held over a number of days and aimed to create an atmosphere of trust and openness between women. Initially, sessions were run by women facilitators, but in time, the agenda was determined by the participants. Group sessions used the personal experiences of women, local beliefs and ideologies as the starting point for exploration and analysis of women's roles in society. The Workshop functioned on a number of different levels-intellectual, emotional and physical-and the combination of these was vital to their success, as were the opportunities offered for self-expression.
Several processes emerged which were helpful in increasing the confidence of women to explore sensitive issues: (A) STORYTELLING
All women shared experiences of personal events, such as menstruation, childbirth and marriage, some of which had been painful and distressing events. The session diminished the fear and isolation women felt in regard to such issues as menstrual taboos and infertility, and allowed them to address previously taboo topics such as domestic violence and rape. (B) ROLE PLAY
Role play was built on women's personal stories, but more broadly explored how a particular issue for one woman, for example first menstruation, also affected women around her. This led to the discussion of traditions and practices that had often not been touched upon in the first narrative. The plays were videotaped and formed the basis for further group discussions about women's role in society.
(c) PICTURES For practical explanation of women's anatomy and physiological processes, simple line drawings and pictures were used (Hoskin, I 982). This type of presentation was, at times, both confusing and deeply embarrassing. Women were, as in other studies (MacCormack and Draper, 1989), also asked to draw pictures of their own anatomy, which provided a clearer understanding of concepts women held about their bodies, and led to discussions about relationships between men and women. (D) DANCING AND BODY WORK
Traditional songs, dancing and mime were not only a means of relaxation, but a source of material for analysis, especially those associated with marriage ceremonies, which were sometimes satirically re-worked by women. (E) MYTHS AND HISTORY
Myths and stories of the past were used to explain complex or deeply-held beliefs about women's roles and sexuality. Women identified with many of the ancient stories from Indian texts, and from images portrayed in temple architecture and sculpture (G. Thadani, pers. comm.).
AWARENESS OF REPRODUCTIVE MORBIDITY
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(F) SELF-EXAMINATION
This was arrived at only after the foregoing preparation gave courage to surmount the taboos preventing it. It led to discussion about women's relations with the medical profession and dealing with gynaecological problems (Nissim, 1986). The methodology described in this case study was successful because the women involved had known each other for many years and regular workshops were conducted over a three to four year period. These women became skilled and knowledgeable in relation to their own health, and were confident to work amongst women in their villages, and organize one-off workshops themselves. As a means of preparing women for leadership in health matters, the methodology is potentially very useful. As a result of the activity of women staff, women in many surrounding villages attended health services for treatment of gynaecological complaints which they had previously been too embarrassed to do. They began · campaigns to improve the quality of health services, arguing for a reduction in emphasis on family planning and a more comprehensive and sensitive approach to women's health problems. Alternatively, as a rapid appraisal technique, the methodologies may be useful to explore women's understanding of gynaecological health, but the data collected will be more superficial than in longer workshops (Welbourne, 1991). This approach could generate information on shortcomings in health service provision, and as such, form part of research into women's gynaecological health. It would also be a means of providing more factual information
17
to women. Once women are better informed, the coexistence of highly motivated women leaders can create conditions under which they organize to change opinion about women's health problemscertainly at local level-and with the appropriate support, at higher levels.
CONCLUSIONS In conclusion, collecting and feeding back information to health planners and communities must go hand-in-hand with efforts to create conditions in which interventions to improve women's health can succeed. Simply providing improved services for women is essential, but not enough. Similarly, the objectivity required to collect valid data should not prevent researchers from responding to the needs of the women with whom they have worked. This should involve feeding back information and helping women seek a solution (Berer, 1991). The predominant motive for 'action-research', as it is sometimes termed, is to inform and benefit the women who have been studied. This is the only way in which women will be able to form a community of aware women. Finally what is also required is community support of women-which is much more than is implied by 'community participation', since it means changing existing norms and values as they relate to women.
REFERENCES BANG, R. & BANG, A. (1989). Commentary on a community-based approach to reproductive health care. International Journal ofGynaeocology and Obstetrics, (Suppl. 3), 125-129. BANG, R. A., BANG, A. T., BAITULE, M., CHOUDHARY, Y., SARMUKADDAM, s. & TALE, 0. (1989). High prevalence of gynaecological disease in rural Indian women. Lancet, i, 85-88. BERER, M. & RAY, S. (In press). Women and HIVJAIDS: an International Resource Book. London: Resources & Technologies Action Group. CAMPBELL, 0. M. R. & GRAHAM, W. J. (1991). Measuring the determinants of maternal morbidity and mortality: defining and selecting outcomes and determinants, and demonstrating associations. Publication No.4. London: Maternal and Child Epidemiology Unit. CoHEN, B.]. B. & GmoR, Y. (1980). Anaemia and menstrual loss. Obstetrics and Gynaecological Survey, 35, 597-618.
FIGA-TALAMANCA, 1., SINMATHURAY, T. A. & YusoF, K. (1986). Illegal abortion: an attempt to assess its costs to the health services and its incidence in the community. International Journal of Health Services, 16, 375-389.
GRAHAM, W. J. & CAMPBELL, 0. M. R. (1990). Measuring maternal health: defining the issues. Publication No. 1. London: Maternal and Child Epidemiology Unit.
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HosKIN, W. P. (1982). Baljanm Sachitra Pustak (Universal Childbirth Picture Book). Ahmedabad, India: Chetna. KRoEGER, A. (1985). Response errors and other problems of health interview surveys in developing countries. World Health Statistics Quarterly, 38, 15-37. KROEGER, A. (1988). Validity and consistency of interviews. In: Training Modules for Household Surveys on Health and Nutrition. WHOfHST /ESM/88.1. Geneva: World Health Organization. MAcCoRMACK, C. P. & DRAPER, A. (1989). Social and cognitive aspects of female sexuality in Jamaica. In: The Cultural Construction ofSexuality, ed. Coplan, D. pp. 143-165. London: Routledge. NISSIM, R. (1986). Natural Healing in Gynaecology: a Manual for Women. New York: Pandora. OMRAN, A. R. & STANDLEY, C. C. (1981). Family Formation Patterns and Health: Further Studies. Geneva: World Health Organization. PRICE, J. (1992). Who determines need?. A case study of a women's organisation in North India. Institute of Development Studies Bulletin, 23, 50-57. SAFE MOTHERHOOD (1990). Measuring reproductive morbidity. WHO/MCH/90.4. Geneva: World Health Organization. SAFE MOTHERHOOD (1991). Guidelines for conducting prevalence studies on reproductive morbidity. Geneva: World Health Organization. SARIN, M. (1989). Himachali women: a situational analysis. Report to UNICEF. Jagjitnagar, India: Society for Social Uplift for Rural Action. SociETY FOR SociAL UPLIFT FOR RURAL AcTION (1990). Organising hill women: a quest for change. Internal evaluation report. Jagjitnagar, India: Society for Social Uplift for Rural Action. SociETY FOR SociAL UPLIFT FOR RuRAL AcTION & CENTRAL SociAL WELFARE BoARD (1987). Organisers' training: awareness generating camps for women. Internal evaluation report. Jagjitnagar, India: Society for Social Uplift for Rural Action. WASSERHEIT, J. N., HARRIS, J. R., CHAKRABORTY, J., KAY, B. A. & MAsoN, K. J. (1989). Reproductive tract infections in a family planning population in rural Bangladesh. Studies in Family Planning, 20, 69-80. WELBOURN, A. (1991). The social and economic dimensions of poverty and ill-health. Report to Department oflnternational Community Health. Liverpool: Liverpool School of Tropical Medicine. WoRLD HEALTH ORGANIZATION (1986). Maternal mortality: helping women off the road to death. World Health Organization Chronicle, 40,175-183.
ISSN: 0003-4983 (Print) 1364-8594 (Online) Journal homepage: http://www.tandfonline.com/loi/ypgh19
Raising awareness about reproductive morbidity W. Graham, M. Berer, J. Price & L. Brabin To cite this article: W. Graham, M. Berer, J. Price & L. Brabin (1992) Raising awareness about reproductive morbidity, Annals of Tropical Medicine & Parasitology, 86:sup1, 11-18, DOI: 10.1080/00034983.1992.11812730 To link to this article: http://dx.doi.org/10.1080/00034983.1992.11812730
Published online: 15 Nov 2016.
Submit your article to this journal
View related articles
Citing articles: 6 View citing articles
Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=ypgh19 Download by: [University of Saskatchewan Library]
Date: 08 August 2017, At: 04:27
Annals ofTropical Medicine and Parasitology, Vol. 86, Supplement No. I, 11-18 (1992)
Raising awareness about reproductive morbidity
Downloaded by [University of Saskatchewan Library] at 04:27 08 August 2017
BYW.GRAHAM Maternal and Child Epidemiology Unit, School ofHygiene and Tropical Medicine, London WCJE 7HT, U.K. M.BERER 16 Sach Road, London ES 9LJ, U.K.
J. PRICE AND L. BRABIN* School of Tropical Medicine, Pembroke Place, Liverpool L3 SQA, U.K.
Lack of awareness of the extent and effect of reproductive morbidity on the health and quality oflife of women in developing countries is evident at national, community and individual levels. Raising awareness at national level requires population-based, epidemiological information which must be validated. At community level, public opinion mediates womens' actions when they are sick and fear of social consequences provides a barrier to treatment. Individually, women find it difficult to talk about sexual reproductive health and its management. Methodologies currently being developed for raising awareness at all levels are described.
A World Health Organization Technical Group Report has defined reproductive morbidity as any condition or dysfunction of the reproductive tract, or any morbidity which is a consequence of reproductive behaviour including pregnancy, abortion, childbirth or sexual behaviour (Safe Motherhood, 1990). Lack of awareness that reproductive morbidity (obstetric or gynaecological) is a serious health problem of women should be a cause for concern. A study by Bang et al. ( 1989), in two Indian rural villages, of gynaecological disease in 650 women is one of only a few studies which have aimed for a community-based sample of women in a developing country. Their study has raised questions and stimulated interest in developing methodologies to investigate reproductive morbidity, to improve the quality of prevalence data and increase community interest in programmes to detect and manage gynaecological disease. The study also showed the inability of many women "Author to whom correspondence should be addressed. 0003--4983/92/SIOO!l +08 $08.00/0
to distinguish normal and pathological conditions and reflects the fact that health services have done little to teach women to care for themselves between pregnancies. Raising awareness is necessary to encourage health care providers to identify common morbid conditions and their underlying causes. This should lead to a policy for the management of reproductive morbidity which increases women's control over sexual health and confidence to seek treatment. Raising awareness is integrally related to the collection and feeding back of information. Information of different types and precision is needed to influence opinion and motivate action at several levels. At the national level, the process of increasing awareness is one of persuading policy makers to give priority to the issue of reproductive morbidity. They are unable to do so in the absence of epidemiological data which demonstrate the significance of the problem. Raising awareness at community level involves increasing knowledge and concern about © 1992 Liverpool School ofTropical Medicine
12
GRAHAM ET AL.
TABLE Methodologies for detecting reproductive morbidity* CROSS SECTIONAL
e
e
Downloaded by [University of Saskatchewan Library] at 04:27 08 August 2017
e
e
Interview, physical examination and laboratory tests for all eligible women or a representative community sample; Interview of all eligible women, but physical examination and laboratory tests for symptomatic women only; Interview, physical examination and laboratory tests for all women attending defined local health care serv1ces. Interview alone. t
LONGITUDINAL
e
Interview of pregnant women with follow-up interviews during the interpartum period, through to the next pregnancy. t *Adapted from Safe Motherhood (1991). tinterview methodologies yield data on self-perceived morbidity with no validation by clinical diagnosis.
adverse effects on women's health and reproductive success when there are no adequate and accessible services to detect, treat and advise on gynaecological complaints. At the individual level raising awareness requires help for men and women to overcome embarrassment and gain new knowledge about sexuality and reproductive health and support to women to confront social attitudes which prevent them seeking medical help. RAISING AWARENESS AT THE NATIONAL/INTERNATIONAL LEVEL Community/population-based information, required for National Planning, can be defined in the following ways (Graham and Campbell, 1990): (a) it refers to aggregate level information (rather than the individual/case management level); (b) it attempts to be representative and statistically reliable; (c) it is not health facility based. There are several approaches to the collection of community-based data on reproductive morbidity. The merits of each have to be considered in relation to the resources available to researchers, the level of existing health services available to the community studied (i.e. community resources), the spectrum of disease to
be investigated, and the relative validity of different methodologies. One set of alternative methodologies has been defined (Table). Prevalence data from community-based studies will be a stimulus to successful policy making only if: (a) thevalidityofthedatacan be substantiated; (b) there are clear priorities for action; (c) the underlying causes of disease can be identified and ameliorated. (a) Establishing and Improving Validity The question of validity is important since studies with questionable methodologies will be disregarded by policy makers and are of little value in raising awareness. There are two main aspects to consider: firstly, determining validity and secondly, improving validity. Both are the subject of current research (Campbell and Graham, 1991; Safe Motherhood, 1991). The validity of data depends on the validity of the measurement tools which, in the case of reproductive morbidity, may be divided basically into questionnaires and clinical or laboratory-based tests. Whilst the former yields self-perceived morbidity, the latter is usually regarded as providing information on 'true' or objective disease (Kroeger, 1985). The debate on which is preferable is unresolved,
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although it is now recognized that the decision depends primarily on the uses of information. Thus, for example, as regards understanding patterns of careseeking, it could be suggested that selfperceived morbidity of women is more pertinent than objective measurement. The debate is further complicated by uncertainty over whether self-perceived and physically-diagnosed conditions represent the same disease entities (Graham and Campbell, 1990). These issues notwithstanding, the main approach to establishing validity is by comparison of findings from different sources which use different methodologies. This requires that assumptions are made as regards 'the truth' or 'gold standard'. Laparoscopy, for instance, is generally viewed as the ultimate test for diagnosing pelvic inflammatory disease and is used to validate clinically assessed cases. Similarly, high vaginal swabs could be employed to confirm infections of the lower reproductive tract suggested by symptoms reported by women during interviews. Determining validity is often based on a sub-sample of all study subjects, in part owing to the costs and feasibility of using more than one form of assessment, especially in communitybased data collection. Bang et a/. ( 1989), for instance, confined validity assessment to symptomatic women who were offered examinations on the basis of symptoms identified initially through interviews. This approach is extremely sensitive to refusal rates. In a recent study of reproductive tract infections by Wasserheit et a/. ( 1989), almost a quarter of all women reporting symptoms refused to be interviewed. In a multi-centre study by Omran and Standley ( 1981 ), refusal rates for gynaecological examinations ranged from 28% in Syria to 63% in India. An alternative approach often used in survey research for assessing the validity of questionnaire instruments, called 'seeding', involves following-up women who have undergone clinical or laboratory-
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based examinations at health facilities and for whom the outcome is known. The interviewers should be 'blind' to the earlier assessment and will thus attempt to identify morbidity solely on the basis of the questions asked. This form of assessment is usually undertaken as part of a pilot study, and thus validity is established for the questionnaire rather than the results from the final survey. Improving validity in the case of clinical or laboratory tests depends primarily on refining the diagnostic skills of health personnel and the precision of equipment and techniques, as well as on the greater availability of test facilities. Data collection based on questionnaires has a wider range of options for increasing validity, which fall into two main areas-those related to the interviewing context and those related to the interview schedule. In the former case, the use of well-trained interviewers, the exclusion of proxy respondents, and the selection of appropriate recall periods can all contribute to high quality data. The questionnaire schedule, on the other hand, can be designed to improve the validity of the results by means of question-wording which is unambiguous, culturally sensitive and consistent with local terminology. The use of tracer conditions or symptom algorithms has also been shown to improve validity (Kroeger, 1988), as well as being used to arrive at probabilistic assessments of reporting accuracy (FigaTalamanca et al., 1986).
(b) Establishing Priorities TheW orld Health Organization Technical Group on Reproductive Morbidity recommended that the highest research priority should be given to determining the prevalence of chronic obstetric morbidity (Safe Motherhood, 1990). The incidence of acute obstetric morbidity, and the prevalence and incidence of gynaecological morbidity were thought to be oflower priority. No justification for this order of priorities was given. While a case can be
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made for giVlng priority to conditions known (a) to endanger health and reproductive potential and (b) to involve high social and economic costs to women and their families, it must be emphasized that there may be a conflict between the interests of health planners and the priorities of women themselves (Graham and Campbell, 1990). Also, the health significance of some conditions-such as menorrhagia, which increases the risk of anaemia (Cohen and Gibor, 1980)-has not been investigated in women in developing countries and the priority that should be accorded to them still requires evaluation.
(c) Understanding Underlying Causes Prevalence data gives an indicator of the frequency with which a morbid condition is found in a given population, but it does not establish cause. Significant associations between risk factors and clinical status can be correlated on the basis of prevalence data which may help identify underlying causes-although this depends on the range and type of variables selected for investigation. The strength of the association is related to the validity of the data and the scale of the investigation. Information on risk factors which can be accurately diagnosed or investigated by questioning rather than examination, such as obstetric history, tends to be more readily available. Improving the availability and validity of data on a wider range of indicators of risk will provide better information on underlying causes. In addition, in-depth information, such as that collected in case histories, will be needed-not simply to verify underlying causes, but for perceptions of women on how to deal with them. Moreover, the term 'causes' needs to be interpreted at several levels (as now recognized in the case of maternal deaths (WHO, 1986) to include a continuum from broad determinants, such as low socio-economic status, to the more proximate factors, such as reproductive his-
tory, to the direct pathogenic causes, such as chlamydia. Increasing awareness may not lead to appropriate interventions unless the underlying causes associated with a high prevalence of morbidity are understood. To do this, other approaches will be useful, one of which is considered below, in the section Individual Awareness and Reproductive Health: A Case Study. RAISING AWARENESS AT COMMUNITY LEVEL Women face many difficulties in dealing with reproductive health problems. They need access to information about the causes and practical treatments available, as well as to appropriate health services (Berer and Ray, in press). In the face of suboptimal services, women live with symptoms, pain and morbidity. Individual women may perceive they have gynaecological problems, but if other women with similar problems seek no help, they will fear ridicule for seeking medical care for problems considered not to be serious or not culturally accepted as illness. Making a course of action socially acceptable is basic to what might be termed community support, and is a more helpful concept than that of 'community participation'. Bang and Bang (l989) showed that an effective way of doing this was through the media, using health fairs, public plays or workshops, making sure to involve community leaders, and local women's organizations. Such activities create a climate of opinion for talking to men about women's health problems, and for personal interviews with women about their reproductive and sexual histories. To say that women are unaware of reproductive morbidity as mentioned above, is not accurate. Women who do not attend clinics or hospitals may erroneously be seen as ignoring their health problems. In fact, many herbal and other traditional medicines are specifically intended and sold for reproductive health problems. Women's actions take place in a social framework, within which public opinion mediates their course of action. Community opinion, both men and women's opinions, may
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hinder efforts to seek better treatment through a variety of mechanisms, such as:
for women to take time to attend for pre-natal care.
(a) Misinformation Confronting misinformation is essential since, if not challenged, it will become a block to change. For example, gynaecological disease is sometimes linked to the use of contraception, in spite of the fact that many women never use contraception and still have disease (MacCormack and Draper, 1989). Yet studies have shown a statistical association between gynaecological disease and past or present contraceptive use. Wasserheit et a!. ( 1989) found that, in a rural community in Bangladesh, women who used IUDs were four times as likely to report symptoms of reproductive tract infection, and seven times as likely to have confirmed infection. It would be important to explain to women why their perceptions are only partially right.
(c) Feelings of Humiliation There is a scarcity of female gynaecologists and obstetricians to examine and treat women, and this is a major deterrent to women in many cultures. This is but one aspect of the health provider-patient relationship which women, especially women of poorer socio-economic status, find deterring.
(b) Barriers to Treatment It is unlikely that women's lack of knowledge or awareness will be the main, or the only reason for failure to seek treatment. Reasons can range from lack of time; insufficient money to pay for medical visits, drugs, or a stay in hospital; physical inaccessibility; refusal of husband or senior relatives to give permission; no transport; previous adverse experiences ofbeing treated ineffectively, rudely or in a culturally inappropriate manner. To meet some of the problems, a radio programme called 'Your Wife's Health is Important. Look After Her' was organized in Sokoto State, Nigeria, to convince men that their wives needed medical help during pregnancy and child birth (M. Berer, unpubl. obs.). This was supplemented with a television programme, a vehicle with a public address system, and posters displayed in local villages. In each village, the head was contracted to call men together to listen to the talks and be given posters. Such programmes make it more socially acceptable
(d) Fear of Social Consequences Treatment for some reproductive problems, especially sexually transmitted diseases, raises the problem of infidelity, which disturbs not only the relationship between husband and wife but also that between their respective families. For example, women are often unable to suggest use of condoms to their husbands because it would imply that the husband was involved in extra-marital relationships. Conversely, husbands who find their wives suffer from a sexually transmitted disease may resort to physical violence or divorce in retribution, even though the source of infection may have been the husband himself. While still infective, women will be advised not to engage in sexual relations with their husbands, which may lead to tension in the marital relationship. If the community of women is not aware of the need for supportive action, individual women will be unable to initiate and sustain courses of action in the face of opposition from family and community.
INDIVIDUAL AWARENESS AND REPRODUCTIVE HEALTH: A CASE STUDY Raising women's awareness about reproductive morbidity cannot be separated from questions about women's sexuality and the social idiom in which this is expressed. The Society for Social Uplift for Rural Action (SUTRA) was started some 12 years ago in
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the foothills of the Himalayas by an Indian social worker from Maharashtra. The organization has developed a strong base in women's groups within the surrounding villages and links with sister organizations in neighbouring districts. Over the years, the members have been involved in local development initiatives, such as village water supplies and a statewide campaign round issues such as deforestation and liquor control (Society for Social Uplift for Rural Action, 1990; Price, 1992). Despite women's increasing involvement in development programmes and campaigns, they continue to be affected by the patriarchal nature of local society in Himachal Pradesh. Women bear a major responsibility for maintaining family honour. Biological events such as menarche and childbirth are socially significant for the family and community, and senior women and men are watchful that these events are passed through in accordance with social norms. There is little room for women to talk about sexual matters, and girls often turn to friends or sisters rather than to their mothers for guidance. Once married, maternal and child health care services may be available, but there is little recognition given to gynaecological problems, sexually transmitted diseases, violence against women in sexual relations and the psychological impact of these (Sarin, 1989). In 1986, in the same place, in response to women's demands for access to skills and information that would increase their effectiveness in addressing local issues, a series of workshops was organized. Their primary purpose was not to collect information for research but to support women staff, particularly in dealing with issues related to women's health, sexual relations and violence against women. The staff were all local, having personal experience of the day-today problems of survival, and of the disadvantages faced by women, such as illiteracy.
Workshop Processes (Society for Social Uplift for Rural Action and Central Social Welfare Board, 1987) The workshops were held over a number of days and aimed to create an atmosphere of trust and openness between women. Initially, sessions were run by women facilitators, but in time, the agenda was determined by the participants. Group sessions used the personal experiences of women, local beliefs and ideologies as the starting point for exploration and analysis of women's roles in society. The Workshop functioned on a number of different levels-intellectual, emotional and physical-and the combination of these was vital to their success, as were the opportunities offered for self-expression.
Several processes emerged which were helpful in increasing the confidence of women to explore sensitive issues: (A) STORYTELLING
All women shared experiences of personal events, such as menstruation, childbirth and marriage, some of which had been painful and distressing events. The session diminished the fear and isolation women felt in regard to such issues as menstrual taboos and infertility, and allowed them to address previously taboo topics such as domestic violence and rape. (B) ROLE PLAY
Role play was built on women's personal stories, but more broadly explored how a particular issue for one woman, for example first menstruation, also affected women around her. This led to the discussion of traditions and practices that had often not been touched upon in the first narrative. The plays were videotaped and formed the basis for further group discussions about women's role in society.
(c) PICTURES For practical explanation of women's anatomy and physiological processes, simple line drawings and pictures were used (Hoskin, I 982). This type of presentation was, at times, both confusing and deeply embarrassing. Women were, as in other studies (MacCormack and Draper, 1989), also asked to draw pictures of their own anatomy, which provided a clearer understanding of concepts women held about their bodies, and led to discussions about relationships between men and women. (D) DANCING AND BODY WORK
Traditional songs, dancing and mime were not only a means of relaxation, but a source of material for analysis, especially those associated with marriage ceremonies, which were sometimes satirically re-worked by women. (E) MYTHS AND HISTORY
Myths and stories of the past were used to explain complex or deeply-held beliefs about women's roles and sexuality. Women identified with many of the ancient stories from Indian texts, and from images portrayed in temple architecture and sculpture (G. Thadani, pers. comm.).
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(F) SELF-EXAMINATION
This was arrived at only after the foregoing preparation gave courage to surmount the taboos preventing it. It led to discussion about women's relations with the medical profession and dealing with gynaecological problems (Nissim, 1986). The methodology described in this case study was successful because the women involved had known each other for many years and regular workshops were conducted over a three to four year period. These women became skilled and knowledgeable in relation to their own health, and were confident to work amongst women in their villages, and organize one-off workshops themselves. As a means of preparing women for leadership in health matters, the methodology is potentially very useful. As a result of the activity of women staff, women in many surrounding villages attended health services for treatment of gynaecological complaints which they had previously been too embarrassed to do. They began · campaigns to improve the quality of health services, arguing for a reduction in emphasis on family planning and a more comprehensive and sensitive approach to women's health problems. Alternatively, as a rapid appraisal technique, the methodologies may be useful to explore women's understanding of gynaecological health, but the data collected will be more superficial than in longer workshops (Welbourne, 1991). This approach could generate information on shortcomings in health service provision, and as such, form part of research into women's gynaecological health. It would also be a means of providing more factual information
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to women. Once women are better informed, the coexistence of highly motivated women leaders can create conditions under which they organize to change opinion about women's health problemscertainly at local level-and with the appropriate support, at higher levels.
CONCLUSIONS In conclusion, collecting and feeding back information to health planners and communities must go hand-in-hand with efforts to create conditions in which interventions to improve women's health can succeed. Simply providing improved services for women is essential, but not enough. Similarly, the objectivity required to collect valid data should not prevent researchers from responding to the needs of the women with whom they have worked. This should involve feeding back information and helping women seek a solution (Berer, 1991). The predominant motive for 'action-research', as it is sometimes termed, is to inform and benefit the women who have been studied. This is the only way in which women will be able to form a community of aware women. Finally what is also required is community support of women-which is much more than is implied by 'community participation', since it means changing existing norms and values as they relate to women.
REFERENCES BANG, R. & BANG, A. (1989). Commentary on a community-based approach to reproductive health care. International Journal ofGynaeocology and Obstetrics, (Suppl. 3), 125-129. BANG, R. A., BANG, A. T., BAITULE, M., CHOUDHARY, Y., SARMUKADDAM, s. & TALE, 0. (1989). High prevalence of gynaecological disease in rural Indian women. Lancet, i, 85-88. BERER, M. & RAY, S. (In press). Women and HIVJAIDS: an International Resource Book. London: Resources & Technologies Action Group. CAMPBELL, 0. M. R. & GRAHAM, W. J. (1991). Measuring the determinants of maternal morbidity and mortality: defining and selecting outcomes and determinants, and demonstrating associations. Publication No.4. London: Maternal and Child Epidemiology Unit. CoHEN, B.]. B. & GmoR, Y. (1980). Anaemia and menstrual loss. Obstetrics and Gynaecological Survey, 35, 597-618.
FIGA-TALAMANCA, 1., SINMATHURAY, T. A. & YusoF, K. (1986). Illegal abortion: an attempt to assess its costs to the health services and its incidence in the community. International Journal of Health Services, 16, 375-389.
GRAHAM, W. J. & CAMPBELL, 0. M. R. (1990). Measuring maternal health: defining the issues. Publication No. 1. London: Maternal and Child Epidemiology Unit.
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HosKIN, W. P. (1982). Baljanm Sachitra Pustak (Universal Childbirth Picture Book). Ahmedabad, India: Chetna. KRoEGER, A. (1985). Response errors and other problems of health interview surveys in developing countries. World Health Statistics Quarterly, 38, 15-37. KROEGER, A. (1988). Validity and consistency of interviews. In: Training Modules for Household Surveys on Health and Nutrition. WHOfHST /ESM/88.1. Geneva: World Health Organization. MAcCoRMACK, C. P. & DRAPER, A. (1989). Social and cognitive aspects of female sexuality in Jamaica. In: The Cultural Construction ofSexuality, ed. Coplan, D. pp. 143-165. London: Routledge. NISSIM, R. (1986). Natural Healing in Gynaecology: a Manual for Women. New York: Pandora. OMRAN, A. R. & STANDLEY, C. C. (1981). Family Formation Patterns and Health: Further Studies. Geneva: World Health Organization. PRICE, J. (1992). Who determines need?. A case study of a women's organisation in North India. Institute of Development Studies Bulletin, 23, 50-57. SAFE MOTHERHOOD (1990). Measuring reproductive morbidity. WHO/MCH/90.4. Geneva: World Health Organization. SAFE MOTHERHOOD (1991). Guidelines for conducting prevalence studies on reproductive morbidity. Geneva: World Health Organization. SARIN, M. (1989). Himachali women: a situational analysis. Report to UNICEF. Jagjitnagar, India: Society for Social Uplift for Rural Action. SociETY FOR SociAL UPLIFT FOR RURAL AcTION (1990). Organising hill women: a quest for change. Internal evaluation report. Jagjitnagar, India: Society for Social Uplift for Rural Action. SociETY FOR SociAL UPLIFT FOR RuRAL AcTION & CENTRAL SociAL WELFARE BoARD (1987). Organisers' training: awareness generating camps for women. Internal evaluation report. Jagjitnagar, India: Society for Social Uplift for Rural Action. WASSERHEIT, J. N., HARRIS, J. R., CHAKRABORTY, J., KAY, B. A. & MAsoN, K. J. (1989). Reproductive tract infections in a family planning population in rural Bangladesh. Studies in Family Planning, 20, 69-80. WELBOURN, A. (1991). The social and economic dimensions of poverty and ill-health. Report to Department oflnternational Community Health. Liverpool: Liverpool School of Tropical Medicine. WoRLD HEALTH ORGANIZATION (1986). Maternal mortality: helping women off the road to death. World Health Organization Chronicle, 40,175-183.
