1The contributions included in this book present various perspectives of the social sciences. All have stressed the fact that risk behaviours or perceptions or representations of HIV/AIDS and its transmission have to be understood according to real social, cultural, economic, psychological or political dynamics.

2This concluding paper will first underscore the central issues that have been highlighted by the authors and by the participants in the discussions. Subsequently, the main perspectives of the social sciences will be examined through an analysis of proposals made by the authors and according to a comprehensive conceptual framework.

Some Nodal Points of MTCT and its Prevention in India

3The government policy as expressed in the second phase of the NACO programme, which does not encompass the prospect of providing ARV drug treatment to HIV-positive people, seems to be a nodal point of any discussion of HIV/AIDS prevention in India. This political aspect, raised and discussed in the paper by Frédéric Bourdier, is now internationally criticized not only on the basis of ethical considerations, but mainly in respect of prevention efficacy1. And in India, many voices from PLWHIV or NGOs denounce this policy.

4Fortunately the national policy is now changing according to declarations made during World AIDS Day on 1^st December 2003. “The Union Health Minister, Sushma Swaraj, said here today that antiretroviral drugs would be made available free to HIV/AIDS patients in Tamil Nadu, Andhra Pradesh, Karnataka, Maharashtra, Manipur and Nagaland from April 1”2. These new developments should bring considerable change to the HIV/AIDS epidemic management in India.

5In terms of the prevention of mother-to-child transmission of HIV/AIDS, the government policy has shown a significant improvement, having launched in 2002 a new policy of prevention based on the creation of voluntary counselling and testing centres (VCTC) to be disseminated in all the General Hospitals in India and in other medical institutions. This plan, on the basis of the positive results in India of the eleven “centres of excellence”3, will include new training for counsellors and new possibilities for HIV-positive women to be tested and to receive appropriate ART drug treatments to prevent transmission to the child. It is too early to make an assessment of this policy, but details of this new action have been presented in this book (Part 2) by Dr. P. Kuganantham - the UNICEF organizer of this programme in Tamil Nadu.

6This policy based on the success of prevention through drug therapy represents a very important improvement in the national policy. But curative treatment of infected mothers or infected children with ARV drugs was not on the agenda till the end of 2003. The new government policy - publicized through the declaration of Union Health Minister Sushma Swaraj on the 1^st December 2003 –proposes to supply free drug therapy from the 1^st April 2004, initially to three categories of patients: “children of parents living with HIV, women having the infection and men, who suffer from full-blown AIDS.” This new policy is to be made possible through government hospitals and antenatal clinics, and is supposed to be extended to other parts of the country4.

7The logic of the national policy is therefore currently changing by integrating prevention and curative treatment. But these successes and improvements will be confronted with the social, cultural and economic situations of the Indian women and their accessibility to the medical context. A large number of women from rural areas are still not delivering systematically in medical settings and will not be targeted by this new prevention policy. In addition, access to counselling, and then understanding and properly applying its recommendations, as well as the social management of the infection around the infected people and compliance to treatment are still big problems to be faced.

8Counselling in India remains a core issue under debate. In many comments and discussions included in this volume5 , the analysis of counselling in South India shows two trends: in some skilled medical institutions (for instance the IOG, Chennai, YRG CARE, Chennai), counselling seems to be done with all the desired quality, but in a majority of medical institutions counselling is still not adequate. Shyamala Nataraj (SIAAP) has detailed some of the problems faced by counselling in South India: definition and selection of people involved in the counselling, training, followed recommendations, types of counselling, etc. Patterns of collective life existing in the Indian society and in all the medical settings have also convinced the participants of the difficulties in providing full confidentiality and individual counselling. Thus, counselling of couples, families or of the community are proposed as alternatives to individual counselling, taking into consideration the collective pattern of the life of Indian women as well as the risks of stigmatization or social rejection. While SIAAP was identified in 2003 as a skilled institution for training the counselling teams for the new policy of VCTC, questions remain as regards the training in PMTCT of all who are involved in the health system.

9Furthermore, the different concepts linked to the prevention of MTCT – (announcement of the HIV/AIDS diagnosis, informed consent, counselling, drug therapy, adoption of adequate breast-feeding behaviour, etc.) require that the PLWHA be well-informed and take the proper decision for prevention. This adaptive practice taking into account the HIV-positive mother has to confront the prevalent custom in the Indian health system of providing normative counselling or even of issuing injunctions without explanations. In India, as in many other countries such as in West Africa (A. Desclaux 2002), prevention messages often take the form of exhortations. These practices have not been identified as successful in the developing countries (E. White 1999: 189). Shyamala Nataraj in her paper underscores the difficulties involved in conforming exactly to international recommendations because the top-down international policy does not correspond to local situations.

Perspectives in the Social Sciences:

10What, then, is the role of the social sciences?

11Two main lines have been followed by social scientists studying the HIV/AIDS epidemic worldwide: to provide analysis, understanding of the social behaviours and contexts to be used for public health, or to consider the HIV/AIDS epidemic as a subject of social science research which takes into account its consequences in the social settings6. These two perspectives are not antagonist and have often been used simultaneously.

12Gupta in his paper has described the different generations of social and behavioural research in India “in which behavioural prevention interventions could aim at bringing about change in risk behaviour by enforcing social norms for safer sexual behaviour and the conformity to them by individuals and groups, and sustaining the changed behaviour, besides reinforcing the cognitive, motivational and self-efficacy skills”.

13But for the purpose of MTCT, social and epidemiological research have been implemented very late in India following the international agenda. As Alice Desclaux (2000: 5) has underscored, silence on the mother-to-child transmission of HIV prevailed until 1996 in the health policy in Africa, as well as in research in the social sciences. Since that time, this way of transmission has slowly become an international priority and a mode of involvement by the social sciences. Through this international interest, the government of India has initiated research and policies to identify the proper ways of prevention. The first was started in 2000 through the government pilot study on the efficacy of ARV therapy7.

14Based on the research done in India and the contributions made in this book, perspectives in the social sciences will be presented in the following section.

15The social sciences can contribute to public health by providing information concerning the understanding of the behaviours and representations connected with the infection routes, the risk perception and management of the vulnerable women towards this transmission and their understanding of prevention messages and counselling, compliance with the treatments and so on. But the role of social sciences which I prefer to emphasize here is the inclusion of all these aspects in the reformulation of questions raised by medical science and public health. As this approach is increasingly used in the anthropology or sociology of health, it is necessary to include the medical, as well as the social, cultural and political functioning and products of the health system in social science studies. For this reason, the approaches presented here cannot be reduced solely to behavioural approaches, even if these can provide valuable data.

Enlarging the Public Health and Medical Questions: Basis of a Conceptual Framework

16The risk factors in the transmission of HIV/AIDS from mother to child cannot be reduced only to the representations and the practices bound to transmission, because pregnancy, delivery and breast-feeding cannot be approached only in their pathological aspects. In fact, as was already begun worldwide some years ago in the case of sexual transmission, the social sciences need to widen the perspectives to encompass the real factors involved in this risk.

17Thus, the societal aspects of AIDS and the issue of maternity are based on numerous factors linked to the stages of maternity, the sexuality of women/mothers, the mother-infant relationships, people involved in the delivery, the care and the feeding of the infants. But these aspects have to be understood in a social dynamics that includes the social structure in which the mother and the infant are evolving: family, caste, religion, community, lineage, social and cultural identities, work activities, place of residence, etc. They should also to be analyzed in connection with all the health and prevention providers and institutions and their accessibility and affordability.

18Three principal social systems can be identified as societal references in understanding the social dynamics of the risk factors. The first system can be identified as the societal field where the mothers are constructing and using their behaviours according to their social and familial status: the “primary community” (family, caste, and village) as it is called in the social sciences. The second system is linked to additional socialization and new acquisitions (education, occupation, self-help groups, HIV-positive people, new places of life, etc.): the so-called “secondary community”. The third can be identified as the different societal systems intervening in the health and the advice given to the women/mothers and children: the health system in its globality, including medical pluralism and all the professionals and institutions involved in care (delivery, care of infants and women/mothers) and advising or counselling and the prevention system (including all the professionals and institutions involved in prevention or counselling). These three systems can be identified as systems constructed by social, cultural, economic or political dimensions.

19The contributions by the social sciences can therefore reinforce understanding at each system level, or where they all interact8.

20According to the most recent epidemiological data, the number of HIV-positive women is increasing in India. However, many PLWHA are not aware of their HIV-positive status. And, even if they know, because of the risk of stigmatization, many of them do not mention their infection to their family or neighbours. This situation is leading to an expansion of the epidemic. And in terms of PMTCT, this fact should extend prevention to the women who are not aware of their infection.

21For the social sciences, this has the consequence of extending the focus of study from HIV-positive fecund women to the general population of fecund women. And this has methodological implications to be included in the approaches of the social sciences. Thus, the population of infected fecund women has to be studied, as well as the population of fecund women who are unaware of their infection and the women who are not infected. The social and cultural setting of exploration has to be broadened for the following reasons:

• Some social, cultural, economic, psychological dynamics of HIV- positive mothers are linked to their known serological status and its consequences (stigmatization, rejection, gender discrimination, economic difficulties, psychological disorders, new social affiliations, etc.). But these dynamics are related to those linked to the HIV- negative or unknown HIV status of fecund women from similar cultural and social settings.
• The social norms, the cultural codes, the familial, lineage, caste, and religious necessities concern the known HIV-positive fecund women as well as those who are unaware of their positive status or those who are not infected.

22According to the above conceptual considerations and corresponding to the anthropological analysis of A. Desclaux and B. Taverne9 (2000) on HIV and breast-feeding in West Africa, some main trends of analysis of the three behaviours involving risk factors (pregnancy, delivery, breast-feeding) can be identified in India through a comprehensive approach, i.e.:

• To make an assessment of these real behaviours in the Indian society according to their social and cultural dynamics. The quantitative studies on breast-feeding have been discussed by Lingam and Mankad and the participants of the seminar (Part 4). Although they can provide useful data, gaps have been identified due to the lack of studies focused on HIV/AIDS factors linked to breast-feeding (for instance ambiguities about exclusive breastfeeding), and due to the non-comprehensive perspective of the studies. Therefore, efforts have to be made to construct adequate quantitative and qualitative studies.
• To understand how these three behaviours are considered and cared for by the health system. Belonging to the normal stages of maternity, these behaviours must also be analyzed in their pathological aspects (not especially focused on HIV/AIDS).
• To focus on the analysis of these three behaviours in the HIV/AIDS context according the different dimensions of all the involved societal systems.
• To analyze the different dimensions of the prevention of MTCT of HIV/AIDS.

23These main lines of analysis could lead social scientists to study the practices connected with the infection routes, and to enlarge the analysis to all the social science dimensions of the three societal systems involved, health care and prevention systems, and family and community systems.

24And if we lay stress on the risks of MTCT, the social sciences can analyze the vulnerability of infants to the infection in any population, and the possibilities and abilities of an informed population to apply prevention behaviours. The next sections will present some of the milestones of these two lines of analysis.

The Vulnerability Issues

25The understanding of MTCT and its prevention is based on the identification of the population vulnerable to the transmission. As has been underscored throughout this book, the vulnerability issue is fully embedded in the vulnerability of the fecund women to be infected and in the conditions for the baby to be infected by its mother.

26UNESCO and UNAIDS (2002), in a document on the Cultural Approach of HIV/AIDS prevention and treatment presents the vulnerable and risk behaviour groups (cf. Fig. 16.1).

27Women and babies belong to a vulnerable group, and the risk of infection is increasing in the risk behaviour groups (migrants, mobile professions, sex workers, segregated groups, homosexuals) or destabilized groups (broken families, the unemployed, refugees, displaced people). But infection is also possible in all the segments of the society (general society).

Fig. 14.1 - IEC Audience Identifications: Vulnerable and Risks Groups

Social and Cultural Vulnerabilities of Women to Infection

28Biologically, women are very vulnerable to HIV/AIDS infection and the risk behaviours bring to them to a higher percentage of infection than men. The vulnerability of the women to be exposed to the virus is fully bound to the spread of HIV/AIDS transmission among women in India and the vulnerability of Indian women in the domain of health. Vulnerability to the infection will be here explored from the general socio-economic conditions to specific situations.

29As was previously underscored by R.N. Gupta (Part 1), India is facing a new scenario of HIV/AIDS. The transmission has spread from the urban areas to rural ones, mainly through heterosexual behaviours (but bisexual or homosexual behaviours are less studied) and marginally by injecting behaviour. Infected people are being identified all over the country. Women are therefore fully exposed to this transmission. And in all the studies on HIV-positive women, the percentage of women who have declared to have sexual intercourse only with their husband is high. Thus, transmission is also crossing the “traditional” protection of family life as imagined by orthodox points of view (F. Bourdier, Part 1).

30The understanding these routes of transmission and of the spread of the virus is rooted in a number of social, economic and cultural factors, as R.K. Verma and T.K. Roy (2002) have noted. We will here lay stress on the main factors of the vulnerability situation of the women.

31Certain socio-economic conditions prevailing in India have been analyzed as factors in the rapid spread of the HIV/AIDS epidemic (UNDP 2003)10:

• Lack of good conditions for the application of prevention behaviours: widespread exiguous income, human poverty and illiteracy, concentration of economic activity in towns and cities (rural-to-urban migration, slums lacking basic civic amenities), an increasing rate of migrant people (within the country and abroad) in the 15-45 age group (vulnerability ages for HIV/AIDS infection)
• Risk behaviours: drug abuse is on the rise in the cities and in the north-east of the country
• Public Health problems: difficulty to offer safety for blood and blood products
• Vulnerable biological status: Sexually transmitted diseases are considered to be widespread among both men and women.

32As has been observed all over the world, and especially in South Asia and particularly in India, migration is considered as major factor in the vulnerability to the transmission of HIV/AIDS (V. Ramamurthy 2003: 41-280). The percentage of migration in India (abroad: Middle East countries, cross-border migration with the neighbouring countries, or within the country) is quite high: 92 % in the informal sector (p. 247). Migrant workers have a higher risk of HIV exposure than non-migrant workers due to numerous factors: low income, bad socio-economic conditions, living in unfamiliar territory, marginalization at their new place of work, alienation, discrimination, exploitation and harassment. Men often go to the red light area or have sex with accessible women in the surroundings. Thus, health protection is difficult in these conditions. And, returning to their village or place where they originally lived, the men have unprotected intercourse with their wives and thereby bridge the vulnerability of migrant men and their wives who remain at home.

33To these vulnerabilities to the HIV/AIDS infection should be added a comprehensive analysis by F. Bourdier (2001), who has emphasized the vulnerability of the traditional functioning of the family in Tamil Nadu. Following an anthropological and geographical approach, he has directed research in three cities in Tamil Nadu: Coimbatore, Chennai, Madurai. In conclusion, he shows that marriage rules and dowry confer some unexpected situations of vulnerability. Before marriage, the boys explore sexuality through journals, magazines or pornographic movies and have sex with prostitutes or married women or male friends or male elders. Traditional marriages are decided by the parents according to dowry, caste, and profession (etc.) and there is much dissatisfaction among couples, leading the husband to have affairs outside, while the women sometimes seek affection with other men. Moreover, the mobility of the people – workers, students, religious pilgrims – allows men or women to have prohibited relationships with other partners, or the men to visit prostitutes.

34All these conditions suggest the significant vulnerability of married women who are supposed to have sex only with their husbands, voluntarily or not. And in the context of the patriarchal system, many situations are increasing this vulnerability. F. Bourdier has listed situations of the abuse of the sister or daughter-in-law by male in-laws. Some situations in the family involve the departure of the young married woman, who is obliged most of the time to find a solution to live: to return to her family, or to try to earn money even by prostitution. The situation is the same for divorcees and widows.

35And this has consequences in the social construction of prostitution or homosexuality and their social boundaries and on the risks of transmission. What is the real definition of prostitution and CSWs? If the commercial sex workers are mainly identified in the red light areas of the cities where the brothels are located, the activity of prostitution takes many different shapes11. There is continuity from the real professionals to those women who, for a variety of socio-economic reasons, look for ways to earn additional money. This leads to a more complex situation than that inferred from the term CSWs considered as a high risk group.

36From the same point of view, while considering HIV transmission, the category of MSM (men having sex with other men) cannot be confined only to a restricted and very marginalized group in India. In fact, homosexuality is India is taboo and covert, but it is not uncommon for men to say they have sex with men, although they do not necessarily consider themselves to be homosexual (Asthan and Oostvogels 2001). These authors, through a study conducted in Chennai, offer a more extensive view of men and their role in transmission. Masculinity is confirmed by marriage and parenthood, so men do not need to be explicitly macho or heterosexual in order to assert their ‘maleness’. And displays of affection, body contact and sharing beds are socially acceptable between men. Here also the boundaries of the risk behaviours do not correspond to the social construction of a high risk group. Thus, male bisexuality could be more common than socially acknowledged. And that has consequences for the transmission of the virus to the women.

37All the above aspects indicate the numerous situations of women’s vulnerability to STDs and HIV/AIDS infection. And the traditional rules of the Indian society can no longer be put forward as “natural” protection, as was the case in the first years of the epidemic in India12 . Unprotected intercourse by men with commercial sex workers, or with other men, or unprotected intercourse with someone other than the legal partner belongs to the social and cultural functioning of Indian society.

38To these vulnerabilities of women to infection should be added those in terms of general health. The vulnerabilities exposed by K. Shanti (Part 3) are based on different levels of gender discrimination13 , the quite high maternal mortality14, mental problems of women (distress, stress and strain, feeling of helplessness), discrimination of women in the health care system, health problems of ageing women.

Social and Cultural Vulnerabilities of the Infected People

39Stigmatization and discrimination of PLWHA or their children is still very high in India. The laws often do not serve to resolve this situation, and it is not very easy to make an “out coming” (to make public the HIV-positive status).

40In education, in the work world, in the health system, in village or urban life, discrimination of PLWHA is quite common. As a consequence, very often the HIV status is not mentioned outside a confidential network (couples, parents, or some members of the community). And isolation or social exclusion most frequently prevails, leading to very difficult living situations: reduction of social capital15, reduction of choices in daily life, difficulties to follow drug therapy or to apply special behaviours for PMTCT, distress, social conflict, social marginalization.

41Therefore, the temptation not to undergo a test, or to keep the HIV status or the opportunistic diseases secret, or to go to a distant medical facility to for testing and to receive care lead the PLWHA to very difficult situations and sources of vulnerability.

Social and Cultural Vulnerabilities of the Infant to Infection

42In the case of infected fecund women (with identified and unidentified HIV-positive status), the accessibility of information and counselling about the risk factors in the transmission to the child will represent an opportunity to reduce the risk of transmission. But the counselling should offer the women and her familial or social surroundings apposite messages for her to make the adequate choices and decisions.

43Vulnerabilities will therefore be based on the difficulties in the access to proper messages and the application of the prevention behaviours. These difficulties are bound to a number of factors. First of all, the health system facilities with adequate counselling have been called into question. The new governmental Voluntary Counselling and Testing Programme (Part 2, P. Kuganantham, and Appendix 10.1) and the efforts of some NGOs such as YRG CARE (S. Solomon, Part 1) are taking steps in this direction. The role of trained counsellors is therefore very central, for vulnerability to transmission from the mother to the child can emerge in the absence of competent people to provide counsel or when the process remains inadequate. Shyamala Nataraj (Part 2) has pointed out the many cases of inadequacy in the counselling situation or in the role of the counsellors in South India. But apart from adequate counselling, difficulties can be linked with the proper understanding by these women and with their abilities and possibilities to apply the prevention behaviours. F. Pittolo-Rageade (Part 4) has noted the complexity of the counselling process and of the cognitive process of understanding and the possible applications of the messages.

44Furthermore, in terms of the vulnerabilities to the transmission from mother to child, according to the known physiology of MTCT and its prevention (S. Solomon, Part 2), conditions of transmission are creating situations of vulnerability. The maternal factors involved in the vulnerabilities (inadequate nutritional status, recent infection, STD, lack of ARV treatment) link socio-economic vulnerabities to AIDS and diseases and the health systems facilities. The obstetrical factors (pre-term delivery, inflammation of placenta membranes, use of instruments during labour and delivery) call into question the accessibility of the infected women to proper medical institutions and to adequate places for delivery offering suitable instruments during labour. The post-partum factors (breast-feeding and its duration, health status of the breasts) are fully bound to the familial, social and economic conditions to apply proper prevention behaviours. The social pressure is very high on the woman and on the husband because of the Indian values of fertility: women have to have babies and the model of breast-feeding is quite compulsory.

45One of main situations of vulnerability of women and transmission to children is their nutritional status. This not only has consequences for their own status of infection and stage of defence or for their ability to provide breast-milk or alternative feeding to the baby, but also has implications for their entire family. Nutritional problems are encountered in many rural or poor areas of India. Alarming deficiencies of micronutrients such as vitamin A, iron and iodine deficiencies are documented. Anaemia, due to iron deficiency, is particularly common among women of the reproductive age group and also among young children. Severe anaemia during pregnancy is associated with an increased risk of maternal mortality causing maternal deaths every year, a high incidence of premature delivery, low birth weight, perinatal mortality and foetal wastage. Anaemia in infancy and childhood is associated with poor cognitive abilities, impaired motor development and behavioural changes. Similarly, anaemia can also lower resistance to infection and reduce work output and physical capabilities.

46All these factors emphasize the nodal conditions for transmission: poverty, under-education, under-nutrition, migration, inadequate counselling processes, lack of accessibility to proper medical institutions, but also stigmatization, isolation or rejection of PLWHA, vulnerability of the women based on their sexuality, health and their diet, and the familial and social ability of the women to make choices and take decisions for their sake and the sake of their children.

47In conclusion, the sources of vulnerability to HIV transmission from mother to child and the inadequate conditions for applying relevant prevention behaviours for MTCT can be particularly discerned in risk behaviour groups or destabilized groups. But the transmission of infection cannot be narrowed to only to these groups. Social, economic, cultural, psychological and spatial vulnerabilities, but also the lack of accessibility to adequate medical services and counselling intervene at the individual as well as at the collective level in the general society.

Studying Practices Related to the Routes of Infection:

48In a comprehensive approach, the different factors involved in the risk of transmission or in the choices of the people for prevention and care have to be understood in terms of the dynamics of life and logics of the people on whom attention is focused.

49Different aspects must be exposed as regards MTCT:

• Each of the maternity stages in the transmission of HIV/AIDS to the child (pregnancy, delivery and breast-feeding) must be understood from the position of the mother. That is, these three situations of transmission risk should be studied in relation to the context of motherhood. Furthermore, previous children and previous pregnancies, deliveries and breast-feeding have to be considered from the same perspective.
• Motherhood has to be viewed in the entire life of the woman. Therefore the stages and events of maternity have to be observed through the other significant biological stages and personal or social events or those affecting the woman’s health (including the events linked to the HIV/AIDS infection). As regards the normative behaviours of the mother and their transgression or adaptation, the reactions of the social or medical environment, the study of the biological, social, cultural, familial or psychological identities and their variables should lead to a more comprehensive understanding.
• All the behaviours of the mother concerning her health, her motherhood, her children and the practices pertaining to her and the children’s food consumption are to be seen in the social setting in which she is involved (family, community, caste, lineage, work group, new socialization, etc.).
• HIV/AIDS prevention and the care of PLWHA belong to different social systems that are bound together: the Indian central and state governments, international agencies, fund providers, the Indian health system (public and private systems of medicine, medical pluralism with traditional and popular ways of prevention and cure), NGOs. Thus, prevention is not only a scientific enterprise, but also includes political and economic decisions in the domain of public health in which a number of different systems are involved in the application (Part 1). The behaviours of the infected pregnant women or mothers as concerns the prevention of MTCT interact with the grass-roots level of application of preventive measures.

50All these aspects show the necessity to constantly question the individual and social dimensions of risk behaviours. And, in respect of public health goals – the application of prevention behaviours –, the following issues have to be understood:

• Are the risks of transmission/prevention behaviours explained adequately and well understood?
• Who are the people involved in the application of the prevention behaviours?
• How are the risks of transmission managed? With which other risks can the risk of MTCT risk be associated or with which others does it compete?
• What are the possibilities, abilities to apply prevention behaviours?

51The factors involved in the prevention of MTCT are numerous and complex. If we reduce them to psychological, social, cultural, economic and practical dimensions, as well as to dimensions linked to the health system, they could be listed as presented in Table 17.1.

52Thus, research in the social sciences can be developed in various disciplines: anthropology, economics, geography, public health, psychology, social psychology, sociology.

53Contributions could be centred on some of these factors or on all of them, as has been proposed in Part 4: See Lingam and Mankad for a critical review of breast-feeding practices in India, P. Hancart-Petitet for anthropological perspectives on HIV/AIDS transmission during delivery, or F. Pittolo-Rageade for psycho-sociological perspectives of HIV/AIDS. Through an understanding of all of these factors, measures can be taken to remove obstacles to the prevention of HIV transmission (See A. Desclaux, Part.2).

54The risk behaviours of MTCT reside in the maternity cycle and in the fecundity issue, each of which is bound to specific conditions.

The Case of Pregnancy and Delivery Practices:

55HIV transmission through delivery is quite under-studied worldwide in the social sciences, as P. Hancart-Petitet has pointed out in her text (Part 4). And, prevention in this route of transmission has been discussed very little during the seminar. But the accessibility for the pregnant women to the technical practices of delivery to reduce transmission and accessibility to prevention through ARV drug therapy (S. Solomon, Part.2) has to be assessed. Furthermore, it is necessary to understand the factors involved in women not giving birth in safe medical settings in terms of the risks of transmission: accessibility to information and to medical institutions, understanding of the messages, possibilities and abilities to follow the messages, etc.

56This subject, which is actually connected with reproductive health, could be enlarged to encompass economic, political, cultural and social perspectives, and linked to the research done in these fields.

57The risks of transmission through pregnancy and delivery are fully bound to the interactions between the pregnant women (and their familial surroundings) and the counselling for prevention and accessibility to proper medical institutions to receive suitable ARV drug therapy and be provided with relevant conditions for delivery. Moreover, in view of the stigmatization of PLWHA and the fear exhibited towards them even in the medical setting, the development of low-risk practices of delivery for HIV-positive women must take into account the representations of HIV/AIDS by medical professionals and their abilities to acquire and adapt to new practices (P. Hancart-Petitet, Part 4).

58Facilitated by the identification of the three previously mentioned societal systems, these interactions – or negotiations – have to be understood through the representation of maternity and its socialization and the contact with the proposed messages and the practices of antenatal care and delivery accessible to the women, as noted by P. Hancart-Petitet (Part 4).

59In her paper, she has provided a number of steps to construct perspectives of the anthropology of reproduction linked with this subject: socio-cultural representations of the different stages of maternity until delivery, socio-cultural representation of bodily fluids (sperm, blood, vaginal secretion), and the representation of delivery imparted by the social specialist as well as experienced women in the family (mother of the pregnant woman, mother-in-law, other experienced female in-laws) or the traditional birth attendant. Thus, the studies initiated by M. Nichter (1983, 1987) on the ethno physiology of pregnancy in South India and the cultural dimensions of semen in the Sri Lankan health culture have to be extended to the different milieus studied.

60But beyond these cultural aspects, the experience of the pregnant women has to be seen in the context of the updated situation offered to them for delivery and for antenatal care. In this area, Van Hollen (2003) has put forward a very interesting way to study the impact of modernity on the experience of lower-class women during childbirth. She points out that globalization influences childbirth practices even in this part of the society. But the model promoted by biomedicalization is not monolithic. Her book “reveals the complex and unique ways in which modernity emerges in local contexts”. The plurality of delivery settings in India must therefore be explored in order to understand the different practices and their ability, or not, to facilitate transmission. Public and private, as well as popular and traditional sectors must be examined. Training and information available to birth attendants and the medical professionals in contact with women of an age to become pregnant (obstetricians, midwives, nurses or traditional birth attendants) should be assessed.

61Furthermore, these assessments of risk transmissions must be replaced in a larger perspective. In this context, the concept of the “anthropology of birth”, first defined by Brigitte Jordan (1978/1993) who studied from cross-cultural perspectives four birthing systems (Yucatan, Holland, Sweden and the US), could be very fruitfully examined. In focusing on authoritative knowledge - the knowledge that counts, on the basis of which decisions are made and actions taken – she has initiated a way to understand the place of knowledge and the role of the women and their communities, as well as that of experts and machines. Her work looks on the birthing field as a bio-social event and she highlights the gaps between traditional or popular knowledge and knowledge bound to the technical nature and expertise of the biomedical system. This conceptual framework has inspired further world-wide ethnographical studies at first hand, such as those presented by Davis-Floyd and Sargent (1997) on sixteen societies in which they focus on the organization and the management of knowledge in the birthing system. The cross-cultural perspective shows, for instance, that the introduction of traditional birth attendants or midwives has never been successful in international or national birthing policies when the biomedical system has disregarded popular knowledge. This was the case in India when national policy wanted to introduce the traditional birth attendant (Dai) in the public health programme.

62This aspect should lead the biomedical system to a greater consideration of the cultural and social patterns of the popular birthing system, even if biomedicalization and techniques have been well integrated by the lower caste women (Van Hollen 2003). A recent publication by Rozario and Samuel (2003) explores these aspects through the role of “female healers” in birthing in South and South-east Asia. With reference to Hariti, the ancient Indian goddess of childbirth and women healers who at one time was known throughout South and South-east Asia, from India and Nepal to Bali, this collective book describes contemporary situations of her “daughters”, female midwives and healers in different South-Asian societies. Their competence and abilities are everywhere in competition with the biomedical system, although their professional skills are in some societies respected, and in others not. The role, the social and professional respectability of these “female healers”, could be introduced to the consideration of the plurality of birthing stakeholders in India in the context of the risk of transmission of HIV/AIDS. The contributions on India in Rozario and Samuel (2003) provide valuable observations and analyses17.

The Case of Breast-feeding Practices:

63The prevention of MTCT through breast-feeding practices calls into question the modalities of maternal behaviour respective of prevention messages. International as well as Indian studies have identified patterns of lower risk practices: avoidance of maternal breast-feeding, or exclusive breast-feeding for four to six months.

64The critical review of scientific literature on breast-feeding in India made by Lingam and Mankad (Part 4) shows the necessity to undertake new research employing relevant methodological tools with respect to the issue of MTCT. A number of nodal questions will therefore be discussed.

The Case of Exclusive Breast-feeding as Prevention Behaviour

65The transmission rates of different breast-feeding practices are discussed on the basis of epidemiological research. Among these practices, exclusive breast-feeding is supposed to offer more protection against transmission to the child if the duration is sufficient (six months), while mixed feeding is supposed to have a greater chance of transmission. The medical participants in this seminar are aware of the usefulness of exclusive breast-feeding for the health of the babies in general and for the reduction of HIV/AIDS transmission18 . But two main questions have emerged: the definition of exclusive breast-feeding is not a very standardized concept in the minds of the medical professionals, and there are doubts that exclusive breast-feeding is actually practised in India for a period of six months. Furthermore, the nutritional or disease constraints for the mother could result in a lack of breast-milk, which is very often observed in poor economic settings.

66Lingam and Mankad in their paper (Part. 4) underscore that exclusive breast-feeding is never well-defined in the studies they have analyzed, which makes it difficult to understand the Indian situation. They also recognize that pre-lacteal food is largely influenced by customs and traditions and that water, honey, glucose water or an herbal preparation called janmaghuttiand are very commonly used in India. Therefore, exclusive breast-feeding according to the definition given by the WHO19 (1991) seems to them very difficult to assess.

67In a very recent study in South India, R. Radhakrishnan, M. Mini Jacob, S. Parameshwari et al. (2003) assess the real practices of exclusive breast-feeding according to the WHO definition and from the perspective of HIV/AIDS prevention. They estimate that from a sample of 1,000 mothers (500 from Chennai and 500 from Namakkal20), 39 % of the mothers from Chennai (considered as an urban setting) and 24 % from Namakkal (considered as a rural setting) are practising exclusive breast-feeding with an average duration of 2.8 months and 2.6 months respectively. They conclude that exclusive breast-feeding is uncommon even in the rural areas.

68All these results question the real possibility of practising exclusive breast-feeding for six months. Furthermore, Lingam and Mankad have listed significant areas to broaden our knowledge on breast-feeding in India. They have pointed out that breast-feeding is not sufficiently considered from the perspective of gender and that this issue should lead social scientists to answer more profound questions. Among the points at issue, they lay stress on the need to understand these practices in a more comprehensive and qualitative manner which takes into account the real diversity of groups and communities. Cultural practices, customs and beliefs should be considered as they are practised or followed in the communities, in terms of their dynamics and the ways they undergo change.

69Breast-feeding practices must therefore to be seen in the context of socialization and take into account the social and economic and practical factors previously developed in this text.

Socio-cultures of Breast-feeding

70How to consider the behaviour of maternal breast-feeding in order to develop prevention policies or alternative infant feeding? How to define the social boundaries of breast-feeding patterns? How to identify the evolution of the practices?

71These questions could be solved through a sociocultural approach to breast-feeding. In their studies in West Africa A. Desclaux and B. Taverne (2000), breast-feeding is considered as a bio-cultural behaviour, i.e. as universal through the biological function of infant feeding, but influenced by cultural norms and habits. This type of research has led A. Desclaux to complete a relevant comprehensive work on breast-feeding and AIDS. The main results of this study are presented here (A. Desclaux, Part 2) in consideration of socio-cultural obstacles to the prevention of HIV transmission through breast-feeding.

72In West Africa, “socio-cultures” of breast-feeding have been identified through an ethnic segmentation of the African societies. And they have been explored according to the different ways of life (nearest to traditional patterns in the rural villages, evolving in the urban setting) and according to financial income and occupation or according to vulnerable situations of MTCT. The cultural dimensions of the breast-feeding have been explored in the context of the prevention of MTCT (See Table 17.1).

73Fruitful research in India could be undertaken by following the same pattern. But in this country, the cultural boundaries of the communities are quite different and more complex. Thus, to apply the same pattern used in A. Desclaux’s study, the identification of the relevant cultural community could be initially linked to the traditional cultural way of life through the caste system and its traditional village form or to the different living community, such as the slums in cities21.

74But they have to be understood according to all the processes of actual social change, as described by C. Jaffrelot (1997) analyzing “contemporary India”22 (i.e. from 1950 to the present), or by Y.S. Singh (2000) according to “cultural change” in India (globalization, modernization, westernization, urbanization, or sankritization). Thus, while caste and religion should be considered as core aspects of the cultural pattern, the social class with a new distribution of political, social and economic power (A. Beteille 2002, K.L. Sharma 1994) must be taken into account.

75The work entitled “People of India” by the Anthropological Survey of India could be a good preliminary input for cultural practices pertaining to maternity. This project was begun in 1985 “to generate a brief, descriptive anthropological profile of all the communities in India, studying the impact on them of change and the development process, and the linkages that bring them together” (K.S. Singh 1992, 2002). This very ambitious project has identified, located and studied 4,635 communities throughout India and volumes have been published for each state and union territory. Although these contributions take social change into account, the current real practices have to be understood according to the different processes of evolution of the society, which are not very detailed in these publications.

76These aspects can provide a socio-cultural background for the understanding of the vulnerable population regarding breast-feeding behaviours. And the investigation of the socio-culture of breast-feeding habits should not neglect the issue of the place (s) and conditions of living and the importance of migration (short-term or long-term) within the country or abroad (See vulnerability issues).

77Research could therefore be focused on the vulnerable segments of the Indian society. At the same time, the vulnerability of women to the HIV/AIDS infection and vulnerable situations for the application of the relevant behaviours for PMTCT should be taken into account: poverty, work situation, migration and mobility, lack of education, finance, sanitary facilities, etc.

Variabilities in Counselling

78This seminar has given prominence to certain difficulties encountered by medical professionals in following the most recent epidemiological data, the basis of which differs from previous studies. The promotion by international agencies of maternal breast-feeding because of its nutritional advantages has influenced public health policy and medical professionals in India. And the change in international recommendations with regard to the prevention of MTCT from avoidance of maternal breast-feeding to exclusive breastfeeding for four to six months has led to perplexity among the participants of this seminar. On which data is counselling to be based? Will a new epidemiological study follow and other recommendations be given? How to deal with the women when we feel that the recommendations are contradictory?

79Beyond this perplexity, the application of international recommendations to local professionals has to be understood. In some institutions in Chennai, exclusive breast-feeding is promoted for the prevention of MTCT, while in other institutions the avoidance of breastfeeding is promoted. The epidemiological consequences of these different approaches cannot be easily evaluated. But through this observation, we can question the cognitive process for medical professionals and counsellors in understanding and applying the recommendations. Their personal and professional experience should be deepened.

80For instance, I met a nurse in Chennai23 who gave counselling for the prevention of MTCT. She had many years of experience with HIV-positive women and was well trained in counselling. She was therefore aware of the process of counselling, but she was very much in favour of avoiding breastfeeding. To explain her counselling practices, she stressed the fact that she had seen many children who had acquired the HIV infection through their mothers and did not want new babies to become infected. She doubted that the women would be able to adhere to exclusive breast-feeding for a long period. In another medical institution in Chennai, counsellors are following the opposite direction: exclusive breast-feeding is promoted and new mothers are counselled to give priority to this choice. Here, the argumentation is based on the low percentage of transmission through breast-feeding and the slight difference between risk through exclusive breast-feeding and mixed feeding. They do prefer to promote the nutritional and protective advantages of breast-feeding.

81Counselling practices are therefore fully implicated in the choices made by HIV-positive new mothers and they have to be taken into account. Cognitive processes, social and individual representations, professional and personal experiences of counsellors have to be understood through the interactions they have with the women.

82Furthermore, concepts of counselling have to be explored. In India, the use of the English term “counselling” introduces many ambiguities to the understanding of the concept as employed internationally. Counselling as the action to give advice or guidance is a continuation of the role of medical care. And the international concept – based on an interactive process between the counsellor and the counselled person so that he/she makes a personal choice on the basis of the proposed alternatives – does not belong to the usual relationship between medical professionals and patients. Thus, many medical doctors or nurses think they are “counselling” in their practices when, in fact, they only give advice in the form of exhortations.

83The process of counselling could be a very relevant subject of study. In consideration of the very intense collective life of women in Indian society, different processes have been discussed in the seminar and are currently being explored by some organizations, such as SIAAP in Chennai. How to integrate the husband or the other key persons in the familial or social surroundings? Should the counselling be individual or collective? And what are the ethical boundaries? How many types of professionals have to provide counselling? Is it a team practice or an individual practice? Is the role of informed consent effective? What are the professional ethics as pertains to informed consent?

84On the basis of these questions, many points could be explored by the social sciences: identification and understanding of the plurality of the model of counselling and of its application; the organization of the process of counselling in medical settings or in NGOs; interactions among the medical teams and between counsellors and counselled people.

Conclusion

85It is very difficult to conclude these perspectives in the social sciences because of the numerous aspects that are to be taken into account. And other aspects could certainly be added to those that have been presented. Each discipline of the social sciences could portray this subject using the tools specific to it. The conceptual framework we have offered here could therefore be enlarged and depicted in greater detail, but I hope this presentation integrates the main questions discussed in this book and provides a basis for reflection in the social sciences and for initiating further research.

86Nevertheless, at the end of this book, two more dimensions of social science analysis should be mentioned.

87As has been previously observed in social science studies on the HIV/AIDS epidemic worldwide, MTCT and its prevention reveal the functioning of the Indian society. All the factors involved in MTCT or in its prevention are in fact embedded in the social, cultural, economic or political dynamics. These factors include: the social and cultural practices of maternity, vulnerabilities of women to health, to STDs and to the HIV/AIDS infection, gender relationships, the social position of women and of babies and children in Indian society, government policy in public health, the health system in India, the role of the different stakeholders in health, the functioning of medical pluralism, accessibility to medical facilities, the role of NGOs, the role of international agencies, etc. Thus, in the study of MTCT and its prevention, the exploration and understanding of the Indian society is stressed.

88In the same spirit, MTCT and its prevention, as previously the HIV/AIDS epidemic itself, could be considered as a social and medical reformer. Through the new government policy, accessibility to better medical care is scheduled for pregnant women. The application of the international concept of counselling is pressing the medical professionals to consider their patients differently. The new PMTCT policy in the medical institutions at the national level is also bound to an improved accessibility of all pregnant women to the medical setting as well as to improvement in the quality of care and counselling. PLWHA and, more recently, mothers living with HIV/AIDS, are more and more collectively acting to get recognition of their social and economic situations and of their social position. And the policy of prevention of MTCT after delivery could represent, as has been analyzed in Africa (Desclaux 2002), a chance for improving the relevance of the policy of promotion of breastfeeding.

89Thus, this text and, more generally, this book are only an introduction to the issues of MTCT and its prevention in India. Changes in the policy and management of the HIV/AIDS epidemic in India will entail new data. New contributions by social scientists will provide yet more data and heightened understanding. And, new pages will have to be written for the contribution of the social sciences to this subject.