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Aids and maternity in India

Patrice Cohen
Suniti Solomon

Part 4. Mtct risks factors and practices in India: social sciences perspectives

13. Psycho-Sociological Perspectives of HIV/AIDS: Finding a Balance Between The Differences, Equality, Rights and Individual Needs

Florence Pittolo-Rageade

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1From a socio-psychological perspective, the HIV epidemic can be considered in terms of its pronounced relational dynamics.

2The inner feelings such as fear, anxiety leading to depression or stress, of an infected person are modulated by the type of relationship that he or she has with her family, friends, surroundings and social circle, including medical practitioners. The way one organizes the knowledge of HIV depends on these social dynamics. To understand these dynamics we need to design proper investigations and make serious systematic analyses.

  • 2 Let us consider these three concepts according to the dictionary. Paradox: an opinion contrary to t (...)

3Thoughts and behaviours related to HIV are rooted in interrelationships, but most of them can be analyzed - through social psychological perspectives - as paradoxes, contradictions or ambiguities2 towards messages and processes of prevention. Professionals dealing with HIV must therefore face the fact that prevention and care are not only a matter of acquiring and propagating information about AIDS. There are more complex processes concerning the organization of this information by people bound to their behaviour.

4I therefore propose here to identify the main problematics and questions in the current Indian context that have arisen during these round table discussions. Rather than answering these questions, I will indicate how these problematics are linked to the social, cultural and psychological dimensions and will then elaborate how social psychology could answer them were accurate studies to be carried out.

5We will consider according to socio-psychological concepts i) the social representations of HIV/AIDS and the attitudes linked to them, ii) the identity processes along with individual and collective strategies, iii) choice and risk management, from conflict to negotiation.

Different Challenges Identified in the Indo-French Round Table, April 2002

On prevention of HIV/AIDS and of MTCT

6Many of the reflections during this meeting have concluded – as is usual in public health – with the need of changing the behaviour of the people: in order not to become infected or to transmit HIV/AIDS, as in the case of MTCT. But a number of questions have been raised as to the relevant counselling to be addressed, as well as regards the biological, social, relational and emotional abilities of people to change their behaviours.

7Some common cases of paradox, contradiction or ambiguity between thoughts and behaviours towards prevention messages or campaigns can be identified.

8For instance, the policy of a large distribution of condoms has not really brought about a massive change in sexual behaviours or a significant decrease of transmission. This could be analyzed as a paradoxical situation. And, even if women have followed training in which they were shown how to use condoms, they are aware that it will not be possible for most of them to convince their husbands to use them. This contradiction could be solved if the husband becomes motivated through a real awareness of the risks of transmission or through proper counselling.

9Some prevention behaviours could be analyzed as ambiguous when their rationality is not based on the same rationality underlying prevention. For instance, the hygienic lavage (use of soap) after unsafe extramarital intercourse is done by some Indian men to prevent the AIDS transmission. This new attitude could be perceived by men as a change of behaviour in order to reduce the transmission. The ambiguity lies in the different ways of understanding hygienic recommendations. And consequences for prevention can be easily understood.

Proper HIV/AIDS Treatment and its Availability

10In India, there are actually very few centres providing ART treatment. Therefore, government medical institutions concentrate on treating opportunistic diseases. This discrepancy can introduce some ambiguities in the proposal of accurate treatment, and in the adherence to it of patients who are aware of their HIV-positive status and expect a cure for HIV.

  • 3 According to the HIV/AIDS Surveillance in India (as reported in NACO): 36,411 males are living with (...)
  • 4 Generally women use more the medical and social services, and they use and accept more treatment. I (...)

11As has been emphasized during this meeting, the majority of people living with AIDS are men3, but women seem to be more sensitive to their health4. These cross-gender inequalities have to be understood.

12For instance, we have often encountered women who say that when the husband migrates for a temporary period he soon drops his treatment (he has lost it, he is short of it, he feels better after having taken some rest at home). So the spouse can have a number of alternative attitudes: to give him her own medicine, to go and see a doctor in a new structure to get a second set of medicine for her or him, etc.

13This example shows the couple and familial dynamics of the adherence to treatment. That is why the counselling, when approaching the notion of adherence to treatment, should consider the dynamic of the entire family, the role of the partners regarding the relations to medical structures and work situations.

Proper Counselling

14On the one hand, to be HIV-positive can be a great handicap for a person in his or her regular daily life when opportunistic diseases appear, such as skin disorders or tuberculosis. On the other hand, AIDS leads to severe diseases and death.

15What are the solutions? To try to save people from dying by finding cures through research? To also invest in helping those who are suffering? To help them find a balance and learn to live with their new life situation and respect their humanity?

16These questions are very important in the context of prevention and of the adherence to treatment. Due to the severity of this disease, we would expect that the development and acceptance of now well-needed professional counselling should be a priority in progressing towards proper care for those living with HIV. However, in some cases counselling is not considered as a priority and in others its conception depends on the relational schemes used in the medical world (mostly asymmetric relationships like doctor to patient).

17These situations are not conducive to taking into account the particular needs of counselling. Proper training has not been required of many counsellors, nor have then been asked to give proper feedback from their work. So it seems they can neither offer good support to the patient, nor prove to the medical field that counselling is necessary. The medical history of a patient requires confidentiality. However, there are social complications in India that make keeping this confidentiality difficult.

18Indian women are most often accompanied by someone and the waiting rooms are often very crowded. This situation can lead to a number of paradoxes. For instance, a PLWHA may need to involve his or her partner and sometimes other family members (for example, the parents) in decision-making and psychological support. But the partner is less likely to take part in counselling if confidentiality is not assured.

  • 5 In this paper, as illustration we will give some examples of a preliminary research we did in 2002  (...)

19In the group discussions we have conducted5, we have witnessed how difficult is for the men to participate in the debate when (or even if) asked by the spouse. In a patriarchal society, it is difficult to expose the men publicly. We have noticed two major consequences of this exposure: one is that the men felt pressured and started to lead the discussion so that the women could not continue to express themselves or contradict them; a second is that the spouse was blamed later at home and could not mention her wish to use condoms.

20To work out these ambiguities and paradoxes would help to reduce stigmatization and exclusion. Thus, some participants in the seminar have talked about the need for shared confidentiality.

21This concept can become reality when time and space are settled purposefully within a frame of social support.

22But let us elucidate the meaning of shared confidentiality.

  1. This notion has to be developed by the patient; the counsellor is there to help her/him to express the needs in terms of sharing and to evaluate the means to make it happen.
  2. The patient decides who will be the protagonists among the family and other health/social practitioners.
  3. The situation will not lead more to frustration than to success.

23After sharing, the partner is expected to develop motivation and responsibility. The woman also expects the partner in this sharing to be present at the next steps of making decisions, working at them and sharing the responsibilities of the results of these decisions. This dynamic involves reliable social support during the entire maternity.

Maternity and HIV/AIDS Infection

24In the case of MTCT, maternity – the function to give life – is bound to the risk of giving death. So the symbolic and material aspects of life and death are acting in the problematics of the prevention of MTCT. Giving life and breast-feeding lend Indian women their traditional social status. To be infected carries the risk of transmitting death to the infant and also represents the risk of stigmatization, rejection and sometimes social death, before physical death.

25So these processes must also be understood in terms of psychological feelings and social dynamics. The breast-feeding practices must also be understood, along with the reasons for the different choices and the social representations regarding the duration of breast-feeding, for the most recent hypotheses in epidemiology postulate that the risk of infection for the baby depends mainly on this (and on exclusive versus mixed feeding) (Coustoudis, A. et al. 1999).

26Research on HIV, such as that on mother-to-child transmission, has recently advanced very rapidly and the need to understand the social and psychological aspects of this disease is becoming more and more urgent for us all.

27Let us give an illustration from our research. The first woman we interviewed was around twenty, she had a boy of three months (already suffering from skin disease and weak digestion). She had been kidnapped at a young age and put into prostitution, from which she eventually escaped. She and her son were staying in a home for terminal patients after having been thrown out of other places. This social reality was weakening her ability to make a proper choice of feeding for the baby and to adhere to it. She mainly bottle-fed him, to reduce the risk of infection she said, but she could not resist breast-feeding him when he started to cry. During the second interview, she shared with us the fact that she could not help being violent with the baby when seeing him like that. Later the sisters at the home told us she had escaped and abandoned the boy with them.

28This case shows very clearly that no recommendation can be followed if the person is not regularly supported psychologically, if the woman cannot find a place to express her frustrations and work them out in order to continue to live socially. Who is now caring emotionally for the little boy? Where is the mother now? We were told that she had gone back to prostitution with the desire to avenge their (mother’s and child’s) infection.

Individual and Collective Aspects

29The development of thought on prevention and public health has been rooted in individual responsibility and its perception of group and social perspectives can lead to ambiguous strategies, such as with high-risk groups (Cohen, 2002).

30High-risk groups often become stigmatized and the prevention strategies either suffer from or perpetuate this stigmatization. This ambiguity can be seen in the gap, which often exists, between the social realities and the law. Legislation is rarely in synchronization with the social needs, and it seems it is not always sympathetic with the high-risk groups.

31Let us just evoke the CSW or the homosexual (still both considered as outlaws in India), or again the self-help groups of positive people, which are increasing tremendously in number and membership but are also lacking proper government support and legislation. The widows of positive husbands are rejected from the community and cannot have access to their right of property succession. Similarly, the infected persons are also stigmatized at work and their rights are not respected. A HIV-positive mother will try to hide her status as long as possible, but soon exhausted by work, diseases and breast-feeding, she will have to quit her job without being able to adjust with new or more flexible working hours.

32It becomes urgent that the failures in the political and religious systems to control AIDS in India are understood from sociological and socio-psychological perspectives. We have to answer these questions: Which group is now considered as a high-risk group? For what reasons - and with what consequences - such as being the target of prevention programmes, but also of stigmatization and exclusion?

33Regarding MTCT, do we have to consider women as a high-risk group in the sense that they are the key persons of the transmission/prevention of HIV within the family? Or can we go beyond this definition in order to reach more directly the particular, individual needs?

34We have to see in detail how to go from collective to individual needs and vice versa if we want to understand the world in terms of the HIV epidemic and act properly against it.

Psycho-sociological Concepts to Study MTCT and to Help Prevention:

An Understanding of our World

35One of the main areas in social psychology is to develop an understanding of the way people represent their world and especially how they explain events to themselves by detecting causal relations between elements, such as the cause existing between smoking and cancer or the causal relationship involved in making a medical diagnosis (symptom to treatment).

36Different studies in social psychology (such as those cited in Hilton 2001) affirm that to observe causal attributions, especially the deficit in reasoning and judgement and the paradoxes this implies in decision-making, would help the medical field to optimize its capacity. It is now recognized that social representation influences judgement and decision-making, and agreement with normative decisions in some contexts is one of the fields developed (Echebarra 1998). People fill in the gaps in information through diverse processes connected to their involvement with the social factors of the context. Moreover, it seems correct to study the “errors, distortions and reinterpretations” (ibid: 202) so as to understand causal processes. Distortion of the social reality (Pittolo 1996) takes place when the person cannot take into account his or her feelings related to a situation (for any personal or contextual reason) and when, consequently the person readjusts the social representations to be congruous with his or her own behaviour. The author explains how individuals can readjust their social representations with positive symbolic resources (often increasing self-esteem) taken from the past so that they feel more congruous with their present decision. Stereotypes can be an expression of these distortions in the way that consensus influences people’s judgements and the search for consonance.

37We have seen general practitioners in Indian rural areas giving strict recommendations on breast-feeding based on previous interventions in maternity/gynaecology (which were a success), but could not adapt their discourse to the reality of the HIV-positive mother. This reference to their previous positive experience helped to compensate for their actual lack of information and experience in the field of HIV/AIDS.

38Proper support and training of the medical staff is required in order to reduce stereotypes and economic cognitive process of diagnoses in order to approach every mother as an individual and particular case.

Cognitive Dissonance

  • 6 “Cognitive” comes from the French and Latin root “connaissance” (knowledge).

39The term cognitive6 dissonance is used in social psychology (Festinger 1957a and b). We all experience in our work that AIDS is a field of knowledge, and that social representation is the central problem in the prevention and care system.

40Dissonance involves two parts of a piece of information that appear different and contradictory; however, in this case it also implies a psychological dynamics. A feeling of discomfort will motivate the person to reduce this dissonance. In order to achieve this, different attitudes toward the information may be adopted: to avoid or ignore the information, or to add inappropriate information to the topic. To some extent, it might turn out that the more a situation is new and uncomfortable, the greater the resistance will be to change and development.

41Some of these psychological attitudes may have the function of reducing the dissonant quality of a piece of information. During our interviews we heard expressions such as:

421. “(Before I became positive) AIDS was not so widespread, I didn’t know anyone who was infected” (However this person had engaged in a sexual encounter perceived as risky).

The fact of having had risky sexual intercourse is dissonant with the knowledge of the routes of transmission the person did have. To reduce the dissonance between the knowledge and the act - since the sexual intercourse is done and cannot be changed-, the person changes, reduces his/her perception of the danger. This dynamics can help to face the painfulness arising of the consciousness of the risk taken, but at the same time, can also block any process of change of behaviour (such as use of condom).

432. Some of these psychological attitudes may have the function of increasing the consonant quality of an information A person shared with us:

“I recently participated in an AIDS prevention programme”. (Again, this person had recently engaged in a risky sexual encounter but did not use a condom).
This time the danger of the risk taken is reduced by a previous positive attitude, but again it might not help the organization of new behaviour.

44In such situations of a person involved in dissonant attitudes, it would be necessary to propose support through discussion in order to help the (cognitive) process to develop into positive attitudes.

45To continue the investigation, one can ask the following question: How can an information be either dissonant or consonant? The answer is either because of previous behaviour and/or previous engagements/ commitments. This is why the question of feeling psychologically uncomfortable is related directly to one’s behaviour and more particularly to the change in behaviour - this being the main objective of AIDS counselling and prevention. Unfortunately, we often face the process of resistance to change. This includes the feeling of non-continuity in one’s biography, and this is especially damaging in the life of a person who has just discovered that he or she or one of the family members is HIV-positive.

46The field of social psychology proposes to analyze the structure and dynamics of this link between the social representations (the first author to use this concept was the sociologist E. Durkheim, 1912) and the behaviour, in other words between the symbolic and instrumental aspects of an individual’s well-being.

Social Representations7

  • 7 On social representation theories, see also authors such as: Jodelet, D, Palmonari, A., Herzlich, C (...)

47So how can we try and understand the cognitive and social aspects of HIV?

48One of the most prevalent concepts in social psychology – social representation - is relevant and has been used a great deal in social sciences research on HIV/AIDS (Da Silva 1999, Echabarra and Paez 1989, Pittolo 1992, Taverne 1999).

49A social representation (SR) is the product and the process of a mental activity by which an individual or a group rebuilds the reality with which he is confronted and to which he gives a specific signification. We can also say that it is a form of practical knowledge which links a subject to an object; that is, a person to a shared social element of our society. It is a way or means of building knowledge which we can describe by using two branches and terminologies: either a “naïve” knowledge (Moscovici 1982) giving us the capability to cope with an element of daily life or a “scientific” (ibid.) or professional knowledge which refers to a field of expertise. This knowledge is then connected to one’s behaviour – either by being influenced by it, or by influencing it.

50In the case of AIDS, a person gathers information through his community relations ( “naïve” knowledge) and in certain medical and social institutions ( “scientific” knowledge). The process of organizing both of them and the consequent behaviour related to the object AIDS can be understood in terms of SR. But we should not forget that the idea of knowledge is ambiguous because it does not take into account the notion of a misconception which can be a part of social representations.

51Then, what do we mean by a misconception?

52In the medical field cognitive bias can be applied to medicine which, on the one hand, must make judgements and expert opinions and, on the other, must rely on its memory (Hilton 2001). This fact can induce judgemental bias and diagnostic errors, but an approach with heuristic accessibility to judgement could predict this bias.

53For example, different doctors can make different diagnoses of the same patient. Thus, according to the author, the symptoms presented as being crucial in their diagnosis vary and/or often correlate weakly with their decision on treatment. (ibid: 68).

54In our research, we have heard patients say that they have seen several doctors within a short period until they found the one who proposed the right diagnosis, which actually was HIV. We have seen positive mothers desperate from hearing different recommendations regarding the feeding of the baby and who finally could not make a durable choice, but could only adapt to the situation of the day.

55Without going into too much detail, we can observe that to cope with a new situation (e.g. infection), the person may interpret the new situation by going through a process of familiarization (Moscovici 1982): putting something strange into an old frame of reference, e.g. psychoanalysis was first associated with confession, or AIDS with cancer. In some cases, the organization of the knowledge about a new object may cost a lot of energy and emotion. In this case, we may observe a simplification of the reality into a stereotype, misconception or stigmatization, which may often be contradictory or ambiguous. Moscovici (ibid.) says that people tend to anchor a new situation in their current social context, and do this in different ways.

56Nascimento-Schultze et al. (1995: 188), detail how the paradigms we currently use in occidental medicine are based on two different dynamics, which can cause the feeling of crisis this field is experiencing: One relates to the old paradigms of Descartes: (briefly) Mind and body are separate, and to be dominated, illness is seen as an entity, while mind is seen as a secondary and independent factor. In new paradigms from different sources where mind is another primary factor and connected to the body, health is when the body is in harmony with the environment, illness is a process, and multidisciplinarity is proposed. Thus the paradigms – or schemes for understanding aspects of reality- are connected to social and cultural factors which influence both our routine and strategies of identity.

Questions of Identity8

  • 8 On Identity theories, see also authors such as: Festinger,L., Tajfel, H., Turner, J.C., Newcomb, J. (...)

57Along with this cognitive aspect of social representation, the relational and communicational dimensions should be emphasized (Forgas 1998). They take place in individual relationships as well as in in-group and out-group dynamics. For Doise (1978), they participate in making differentiations between individuals or groups. This is a categorization process in which people produce evaluative judgements of their environment and build their social identity. Within this context, SRs can generate opinions, attitudes and also “prescriptions” (given acceptable ways of behaviour in a particular society).

58This process of building a social identity is synchronous with the building of personal identity, and that is why the modulation of emotions is part of it. In this identity dynamics, one may have to maintain, modify or defend his/her identity. In each case, the person compares her/himself with others and consequently builds SRs of the different aspects of her/his environment. Consequently, SRs are connected to identity processes and this common dynamics tends to promote consistency and self-esteem.

59We have seen previously - see cognitive dissonance - that the persons in examples 1 and 2 rationalize their risky behaviour, which also includes a process of categorization. The “I don’t know anyone who is infected” also means “I am not part of the risky group”. Most of the mothers we have encountered never thought their husbands would be part of the category of the “infected person”, therefore they did not think they could be infected, or that they would have to protect themselves, and finally that the children would suffer from it. There is a long psychological and cognitive way from the identity of a possible positive mother to the acquisition of the knowledge of the three routes of MTCT (during pregnancy, delivery and breast-feeding).

60Therefore, we understand just how complex the different strategies of a person can be to maintain her or his – physical and social - life. In order to study these strategies, we are accustomed in the fields of the human sciences to use the notion of biography, i.e. the historical process made up of key events which a person uses to maintain the continuity of his life and identity.

61The individual, along her/his history or biography, enters diverse scenarios in which the relation between the social structures, dynamics (such as rules) and her/his orientations and choices are combined or tend to combine. One of the most effective objectives in social psychology could be to evaluate the quality of the relations ( “tension”, Reynaud 1989) between the rule established in the institutions working on AIDS and the individual strategies of the actors.

62Let say that the choice of feeding a baby and the adherence to it would differ, even in the same medical institution or home, between a mother who had gone through and been rejected from many institutions, and a mother who had a single medical reference. Then, from a collective perspective, we can see that groups of people can share common objectives and differentiate themselves from other groups. For instance, we can see in a waiting room of a hospital that people share the same objectives of being cured or supported, which makes them part of the same group (and accept some of its rules and regulation processes). But at the same time, processes of differentiation occur between healthy looking persons/handicapped, mothers with/without child, rural/urban, etc. They might share SRs or part of SRs (i.e. of public health), or they might not, and then be in conflict.

63Studies on the figurative nucleus (shared part) of the representations of health or illness paradigms (ibid.) can help to understand the different representations of the groups. For instance, to understand the medical versus social workers’ representations and therefore the zone of probable conflict or negotiation.

64We have often seen mothers who were exhausted and who, after a big effort, would reach the hospital with their children to ask for food or food supplementation, considered by them to be a basic need. But they often find a medical officer who could not respond to this demand and would give medicine known by the patient to have side effects in the case of a small amount of food.

Application of the psycho-sociological approach to the medical field

From Conflict to Negotiations

65How, then, can we go from SR to conflict or negotiation and how important is this for us? First, it would seem important to again consider HIV in the dimension of human relationships and social interaction, whether the person is willing/able to learn and adapt her/his behaviour, or not, and whether she/he builds defences against the new identity which she/he has chosen or not (Pittolo 1996, Abdellaoui and Pittolo 2000).

66Social psychology, especially through thinking about social representation, shows that:

  • Some contexts may lead to normative perceptions in which negotiation can be more difficult. Sanchez, et al. (1996) explain the “hypnotising tendency” of the subject to conform to the in-group norm, while personal attitudes would be affected by normative conflict between common allocations of a person and an alternative norm proposed9.

67Some mothers will make the choice of feeding the baby according to what is said in the community, even if they feel that the recommendation of a person outside the community (doctor, a woman met at a hospital) would be better for the child’s health.

  • In the maintenance of consistent identity the relational stakes can lead to conflict, especially when the relations are mainly asymmetrical, e.g. patient to doctor or a new spouse to mother-in-law. Abdelloui and Pittolo (2000) show that the ability to judge is connected to the construction of identity through different modes of comparison and social perceptions and their consequences on the re-establishment or adjustment of a positive identity. In this study, this idea is based on asymmetric relations between nurses and doctors. The existence of a symbiotic mechanism through which processes of categorization are connected to individuation must lead us to ask questions about the genesis of the building of a social identity. This should also increase our knowledge on identity and processes of judgement and decision-making (ibid.).

68Many doctors complain about the fact that the women tend to agree to anything they say, consequently they would not express their difficulties in following the recommendations when at home. Therefore, a proper evaluation of the feasibility of the 6 to 4 months of exclusive breast-feeding is still a major problem.

  • To negotiate, whether this leads to conflict or not, is a dynamics in which a person tries to understand a situation, to understand its cause and the possible solutions to it.

69In learning to negotiate the feasibility of a recommendation through psycho-sociological support, the chance of feasibility would increase, as well as the integrated knowledge about HIV/AIDS of the person and her surroundings.

Risk-seeking Behaviour, Implementation of a Biography

70Many other reasons could be found, but let us say that the ambiguities (different possible meanings) or contradictions (opposite meanings) reach consciousness through negotiation.

71Regarding risk behaviour and the resulting decisions, ambiguities are doubled when the person cannot negotiate his or her choice and build it with the surrounding community. She/he may be alone in facing disagreeable psychological processes such as “risk-aversion” (Hilton 2001: 71). In that case, the person will navigate between the loss or the search for gain. Thus, a mother is torn between avoiding the contamination of her offspring through breast-feeding and increasing the baby’s immune resistance by breastfeeding.

72Without having a scientific notion of immunity, the mothers often express their desire to see their children in better health, which means not getting each and every disease passing by. This process of talking about health and not disease is important in the sense of connecting to the symbol of life. It seems important, in order to help the women to manage their infection (and often the family situation), to create an environment in which they can consider sickness within the context of life, i.e. within a biographical process. Most of the mothers encountered have faced more social ruptures than possibilities to ensure socially anchored self-esteem. Many of them told us they would not continue to fight for their life in such conditions if they would not have children.

73In the case of HIV-positive mothers, to negotiate means managing risk: for themselves, the child they are breast-feeding and their whole family. In this process of decision-making, we inevitably encounter dynamics where the mother tries to build her new identity between identification with older peers (such as other women in the community) and trying to find her own way without being over-influenced by others. She is the one who will take the consequences. Especially in poor economic contexts, the social risk, such as exclusion from the family or the work place, has just as important consequences as the health risk.

74To construct a deep understanding of their situation we need to assess their biographies, or at least to place their choices and life events in a context of personal history. And, I would personally say to then connect it to the collective history of AIDS and the way the HIV-positive person perceives its evolution, and the myths they build with their community, integrating AIDS into a common consciousness (see the publications of the author).

75Da Silva (1999), in talking about biographical ruptures and continuity or change of status, restoration or regulation of identity, gives these concepts for thinking about the social dynamics of choice-making. Socialization: this notion of adaptation and development in society (Dubar 1991) is all about the acquisition of a symbolic code resulting from the transaction between the person and the society. Again, it is the result of two combined processes: assimilation and accommodation. The first process consists in “incorporating” external things/people to already existing structures. Accommodation is about readjusting the structures according to exterior transformation. Therefore, changes in the environment are perpetual sources of readjustment for the individual and the social sciences propose to assess the types of readjustment that take place in an individual’s life within the social context and its history (ibid.: 13).


76The representations of HIV/AIDS are not static: they depend on the person’s experiences with it, and its dynamics question professionals in their practices and routines, those in medical as well as those in social fields. Again, to assess the individual’s biography with regard to the collective history could help us to understand AIDS in its cultural, psychological and socio-economic context. I would like to cite one example here: the increasing number of households which have to face geographical displacement for economic reasons. In this situation, the organization of the entire family is changed and the risks of unsafe sexual intercourse are multiplied. Excepted the spouses of truck drivers or the CSWs, all the women we met said that the family - most of the time the husband - has gone through a period of seasonal migration to overcome low incomes. They all meant that it was the probable first cause of infection. Personal scenarios are rooted and sometimes overridden by collective scenes.

77From such situations, deeper thinking on social fractures and the psycho-sociological processes in play may help to underline the huge ongoing work of research and action:

  • First of all, the dynamics of assimilation, in the sense of being overly influenced by “models” of HIV patients and then creating programmes of prevention and care out of them, are changing to dynamics of socialization, through participating in the individual’s needs of adapting her/his new identity to new scenarios of life.
  • Second, to build accurate tools of enquiry and evaluation. To assess the progress in the field we need accurate tools of evaluation, such as for evaluating the development of the use of contraception, or the assessment of the medical and supportive network around a mother.

78“Urgent” is a common leitmotiv and to work with this urgency, appropriate attention needs to be given to the creation and evolution of the professional local and international networks, including the rich dynamics of the People Living With AIDS groups. Attention to the links or gaps between public and private health structures and actions, as well as social representations of AIDS, must also be considered. And, finally, counselling and psychological support need to be increased.

79We are all confronted with the fact that AIDS implies social risks which must be considered to be as important as the health risks, and the management of safe behaviour in daily life is a question of awareness in addition to the numerous other factors.



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2 Let us consider these three concepts according to the dictionary. Paradox: an opinion contrary to the communal opinion or logic; contradiction: opposite propositions (if one is wrong, the other is right); ambiguity: equivocal propositions, understanding in different ways.

3 According to the HIV/AIDS Surveillance in India (as reported in NACO): 36,411 males are living with AIDS and 12,522 females (on 31 March 2003), source NACO web site:

4 Generally women use more the medical and social services, and they use and accept more treatment. In fact women should have more reasons to go to hospital: namely, for pregnancy follow-up, delivery, gynaecological treatment, child care and maybe other reasons such as talking with each other about health in the community. And women have less need to migrate to other districts for seasonal work. But further investigations are required to confirm if women go to hospitals more often than men for HIV/AIDS purposes.

5 In this paper, as illustration we will give some examples of a preliminary research we did in 2002 and 2003 in Tamil Nadu on NGOs welcoming HIV-positive people. These results belong to the first step of a programme of social sciences devoted to the development of a social-psychological analysis of MTCT and breast-feeding in South India, developed in the French Institute of Pondicherry, with a Sidaction/ Ensemble contre le sida (Paris) scholarship.

6 “Cognitive” comes from the French and Latin root “connaissance” (knowledge).

7 On social representation theories, see also authors such as: Jodelet, D, Palmonari, A., Herzlich, C, Codol, J.C, Hewstones and Jaspars.

8 On Identity theories, see also authors such as: Festinger,L., Tajfel, H., Turner, J.C., Newcomb, J.M., Miller, I.G., Sedikides, C., Lorenzi-Cioldi, F.

9 See also Billig, M. et al. (1988) Ideological dilemmas, a social psychology of everyday thinking. Sage: London.


PhD in Social psychology, French Institute of Pondicherry, . She has received scholarships from Ensemble contre le sida/Sidaction, France and from the French Ministry of Foreign Affairs.

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