What is the effect of self-identified HIV activism in willingness to participate in HIV cure-related clinical trials? Results from the ANRS-APSEC study.

OBJECTIVES: Enrolling people living with HIV with undetectable viral load into HIV cure-related clinical trials (HCRCT) is challenging. Few data are currently available about the individual factors that influence willingness to participate in HCRCT (WPHCRCT). We hypothesised that WPHCRCT would be more frequent among people living with HIV considering themselves HIV activists. The objective of this study was to investigate the individual characteristics associated with both WPHCRCT and self-identification as an HIV activist. METHODS: The study enrolled 195 long-term ART-treated and virologically suppressed people living with HIV, followed-up in 19 French HIV services, 2016-2017. A Bayesian model averaging approach was used to assess correlates of both outcomes i.e. WPHCRCT and self-identified HIV activism. RESULTS: WPHCRCT was reported by 43% of participants and was positively associated with self-identification as an HIV activist (adjusted odds ratio [aOR] 2.90 95% confidence interval [CI] 2.17-3.63], P<0.05) and self-confidence as an HIV positive person (aOR 1.17, 95% CI 0.99-1.35, P<0.1). Self-identified HIV activists (56% of participants) were more likely to have a higher 'relationship with others' score using the post-traumatic growth inventory (aOR 1.10, 95% CI 0.99-1.20, P<0.1), to obtain information about HIV from a greater number of sources (aOR 1.35 [95% CI 1.00-1.68], P<0.1), and to feel greatly affected by mandatory daily treatment (aOR 2.15, 95% CI 1.27-3.03, P<0.1). All associations had relative importance weight>0.75, indicating strong evidence. CONCLUSIONS: WPHCRCT is strongly related to HIV activism, and also to positive psychosocial characteristics as a person living with HIV, especially regarding relationships with others. The desire to contribute to the fight against HIV for the sake of the HIV community and society should be taken into account to improve participation in upcoming HCRCT.

From solidarity to autonomy: towards a redefinition of the parameters of the notion of autonomy.

Starting from examples of concrete situations in France, I show that autonomy and solidarity can coexist only if the parameters of autonomy are redefined. I show on the one hand that in situations where autonomy is encouraged, solidarity nevertheless remains at the foundation of their practices. On the other hand, in situations largely infused with family solidarity, the individual autonomy may be put in danger. Yet, based on my ethnographic observations regarding clinical encounters and medical secrecy, I show that while solidarity may endanger individual autonomy, it does not necessarily endanger autonomy itself. The social practices observable in France reflect the reality of an autonomy that goes beyond the individual, a reality that involves a collective subject and includes solidarity. The opposition between these two values can then be resolved if the content of the notion of autonomy is understood to be dependent on its cultural context of application and on its social use.

[IS PATIENT INFORMATION AN ILLUSION?]. / L'INFORMATION DU PATIENT EST-ELLE UN LEURRE?

Although the idea is widespread today in the medical community that patients are fully informed, since this is now guaranteed by law, we should ask whether this information is always provided, and indeed truly encouraged. To answer this question, the reflection is based on data collected during two anthropological research projects, one on the information provided to people with serious diseases in the hospital environment and the other on information relating to medicines in the context of self-medication. This research reveals that the obligation to inform to which health professionals are bound is thwarted by the reality of information on the ground--which arises from cultural and social mechanisms--and that, despite declarations of faith in patient education, health information provision remains limited.

Anthropology, ethical dissonance, and the construction of the object.

In this article, I discuss certain questions relating to the ethical difficulties faced by anthropologists when dealing with two different social groups and when one group holds a position of dominance over the other. In the first example, I draw on my work on doctor-patient relationships in France; in the second, on a study on reproduction in immigrant African families from Mali and Senegal, living in polygynous households in France. I use these examples to explore questions of positionality, beneficence, and potential harm. I show the choices I made in order to construct an epistemologically ethical object.

Managing medicinal risks in self-medication.

BACKGROUND: The practice of self-medication is exemplary in raising the question of medicinal uses and risks. In contrast to the biomedical or pharmacological view of self-medication, the anthropological approach looks to understand the logics that underpin it. OBJECTIVE: Therefore, I wished to question how users choose the medicines they take and how they construct the modalities of their use. However, not only are the users conscious of the risks associated with pharmaceutical use, they even devise strategies that specifically aim to reduce these risks. Based on research carried out in France on how people use medicines in the context of self-medication, I examined the strategies they adopt in order to reduce the risks connected with such use. METHOD: This study relies on qualitative research. It combines interviews with users and anthropological observation, both conducted at the participants' homes, to reveal their uses, their decisions, their hesitations and the precautions they take regarding their medicines. RESULTS: The logics underpinning the management of risks associated with medicinal consumption are varied. Thus we find quantitative and qualitative logics, in virtue of which users choose to limit their medicines depending on the number of different medicines or on their intrinsic qualities. Their choices hinge on a logic of cumulation and a logic of identity, where, in the former, users seek to increase or reduce their medicinal consumption to augment the efficacy of a medicine or, in the latter case, they aim to reduce the risks in relation to their personal characteristics. In the same way, the perception of risk that underpins consumption practices is organised according to the notions of risk in itself and risk for oneself, where risk is either considered to be inherent to the medicine or to be linked to the incompatibility between a given substance and a person's body. Managing risk is thus done in parallel to managing efficacy, where a balance is sought between maximising the latter and minimising the former. This either leads patients to limit the consumption of medicines because of their adverse effects, or, on the contrary, to consume them precisely for these effects. Risk reduction strategies often consist of verifying, experimenting with, and personalising treatments. CONCLUSION: Although users sometimes resort to practices that do not comply with biomedical recommendations, they do so in order to attain the values and exigencies of biomedicine as regards the validation or personalisation of treatments. However irrational and peculiar these practices may appear, the mechanisms on which they are based do not necessarily break away from medical recommendations. Therefore, anthropologically speaking, we cannot oppose good and bad practices in terms of medicinal uses, since what health professionals would consider to be bad practices are thought by patients to be in keeping with good use.

The other side of medicalization: self-medicalization and self-medication.

The concept of medicalization has given rise to considerable discussion in the social sciences, focusing especially on the extension of medicine's jurisdiction and its hold over our bodies through the reduction of social phenomena to individual biological pathologies. However, the process leading to medical treatment may start when individuals engage in self-medication and thus practice "self-medicalization." But, can we apply to this concept the same type of analysis as the first and see merely the individual's replication of the social control mechanisms to which he/she usually falls victim? This article aims to demonstrate that the medicalization individuals practice on themselves takes on a completely different meaning to that practiced by the medical profession. Empirical data collected in France show that self-medicalization, which may involve treating a problem medically when doctors believe it to be of a non-medical nature, can be an attempt by individuals to furnish a social explanation for their somatic problems and experiences. In this article, I examine the social and political significance of this phenomenon.

Discourse on safe drug use: symbolic logics and ethical aspects.

Drug safety is not a matter for healthcare professionals alone. Patients are also involved, at three different levels: (i) in the behaviours patients adopt to reduce the adverse effects of the drugs; (ii) in regard to what some doctors say to their patients about drug risks; and (iii) in what the pharmaceutical industry says about self-medication and risks. This article will examine these aspects on the basis of information gathered in France during anthropological studies on drug use. (i) Patients' concerns about reducing adverse effects give rise to a series of behaviours relating to drug use. Patients start with the identification of what they regard as a risk inherent in the substances or linked to the uncontrolled use of drugs, and try to neutralize the risk by modifying or modulating the prescriptions in line with various parameters. Dimensions as varied as the nature of the prescribed drugs, the quantity, the dosage and the preservation of certain functions or organs are taken into account, and patients follow their own rules of conduct in order to reduce risks. These dimensions bring into play characteristics of both the drug and the individual, and take into account the effects or the risks of drugs in their physical, psychic, behavioural and social aspects. (ii) Doctors' discourse towards patients regarding the risks and possible effects of drugs is examined, in particular the discourse of those who choose to hide the undesirable effects of drugs from their patients with the aim of not jeopardizing the patient's compliance. This situation involves comparing two logics: ethics of care versus ethics of information. (iii) Regarding the pharmaceutical industry's discourse on self-medication and risks, although on the one hand it promotes self-medication on the basis of patients' growing desire for autonomy and competency, on the other hand it discourages the use of the home medicine cabinet for reasons of safety, which questions the ability of patients to use drugs properly. This article aims to demonstrate that the various behaviours and discourses relating to the risks of drugs are embedded with symbolic, ethical and cultural logics. As a consequence, above and beyond work carried out on the question of pharmacovigilance, examining the issue of safe drug use involves studying the human - social and cultural - aspects that govern part of the behaviours and practices relating to drug safety.

Religious attitudes toward prescriptions, medicines, and doctors in France.

Although the social sciences have studied the influence of social environment on individual behaviors regarding medication, very little research has been done on the variations that exist between patients in equivalent social contexts but with diverse religious backgrounds. This article presents the results of research on the correlation between patients' religious-cultural background (Catholic, Protestant, Jewish, or Muslim) and their behaviors regarding medication. It shows that the cultural origin as well as the collective history of the groups to which patients belong impacts their attitudes toward prescriptions, medicines, their own bodies, and doctors.

Lying, secrecy and power within the doctor-patient relationship.

Based on ethnographic research from two distinct French settings, the author examines the lying of doctors, and the lying of patients. The first situation is that of medical practitioners, specialists in the treatment of alcoholism, who affirm to ex-drinkers that it is impossible to drink normally again after treatment, without falling back into dependency, whilst knowing of the existence of contradictory cases. The second situation is that in which a certain number of patients find themselves, and who lead their doctors to believe that they have been taking their medication and dissimulate their real behaviour, that of non-observance of prescription. The author argues that lying, in the context of secrecy, is the expression of and the indication of a power relationship. Moreover, the rationalisation that accompanies the lie does not stop it from producing effects in contradiction to its motivation, thus exposing the conflict between therapeutic logic and social logic: the paradoxical character of lying.