Managing the Complexity of the HIV/AIDS Challenge in Sub-Saharan Africa

Managing the Complexity of the HIV/AIDS Challenge in Sub-Saharan Africa Multi-site Multi-Country HIV Positive Prevention Research in West Africa SAHARA

Africa’s Global Diversity

Local diversity: HIV/AIDS Situation in Senegal • Low intensity • Low prevalence (0.7% - 0.9%) • Concentrated Epidemic • Regional disparities • Kolda, Tambacounda, Kaolack (2% - 2.8%) • Adults with history of migrations (27%) • Marginalized groups • Female Sex Workers (20% - 44%) • MSM (20%) • Emerging trends • Increase rate among Pregnant women • Increase rate among women (from 30%, 1992 to 58%, 2005) • Access to Treatment • Pregnant women receiving treatment for PMTCT (1,4%) • Treatment Needs satisfied (47%)

CONTEXTUAL FRAMEWORK

CONTEXTUAL FRAMEWORK FOR RESEARCH

OBJECTIVES • To analyse risk and vulnerability among PLWAIDS • To Construct an intervention model aiming at the reduction of risk and vulnerability among PLWHIV • To test the model and disseminate the results

SITES & POPULATIONS • Sites • Senegal / Burkina Faso • Dakar • Kolda • Thies – Taiba • Kaolack • Populations • CSW living with HIV/AIDS (n=100) • Pregnant women living with HIV/AIDS (n=100) • Male and Female workers (formal and informal sectors) living with HIV/AIDS (n=100) • MSM living with HIV/AIDS (n=100)

METHODES • Formative phase • Qualitative research • Unstructured / Non structured / Semi structured • Free listing (to disclosure / not to disclosure) • Case stories and Life stories • Focus group discussions • Intervention Phase • Intervention Group and Control Group • Constructing a Participatory model • Workshop with different groups of PWAIDS • Workshop with community stakeholders • Implementing the model • With PWAIDS • With community stakeholders • Evaluating the model • Qualitative interviews • Workshops • Dissemination • Local, National, International

Vulnerability: Social risk VS Medical risk • Low use of Condom • MSM/ Pregnant women/ Heterosexual Men/ • CWS with their regular partners • Loosing a partner • “Before we used to use condom, I told him that I do not want to be pregnant.. But after a while, he kept telling me he doesn’t like condom and he will find another woman… So I had no choice and now I am pregnant” • Loosing dreams and Economic support • “My boy friend ask me to marry him… I, really don’t know what to do. I did not tell him that I am HIV positive, I do not know how he would react… I will not ask him to put condom, I am afraid he will think that I am positive… I sell food on the street, I don’t make enough money, he is the one who is paying for the rent of my room…” • Loosing stability • « seytané dafa bari dolé » “I only have short term and occasionnal relationship”

“Hiding and Taking risk” • “Grand Tour” and Missing appointments “When you want to go to the clinic and get your medication, you main problem will be how to get reed of your friends who would like to keep you company; you invent all kind of stories to go alone, you make several stops before reaching the clinic, some time you arrive late for the day or worse you meet there another MSM who will tell to everybody”(MSM, 25) • Not to be seen at the Health center • Refusing Food Supplement • Hiding Pills and Prescriptions • Denial of the test results and multiplying traditional and modern health seeking behaviors (treating opportunist infections) • More sexual activities to maintain “normality”

Vulnerability and social construction of pregnancy, delivery and breastfeeding • Talk and access to PTMC: • “In our tradition, pregnancy is not talked about outside the home… It would be completely irresponsible for a woman to announce to everyone she is pregnant, especially before 5 months” • Talk to whom? • My mother is the head of the homestead. Whatever happens, my mother is told and my wife follows her recommendations for her own health and the health of the baby • Pregnancy is beyond individual and couples • Boo embe, sa jeker embe, sa goro embe, sa yaay embe • Delivery is a Personal Challenge and Support group • “Yalla nowal te bul yoonee” • Clinics are hostile • Reception • Position : “You are lying on your back, with your legs spread, people came in and out seing you in this position” • “Soow” and social construction of the milk (supplement VS replacement)

Environmental / Structural factors • Access to facilities • When you have spent hours waiting for a consultation, only to be told that there will be no more consultation that day, you don’t feel like coming back next time • Structural Time • I didn’t have time: I have a co-wife who has been sick for over a year; I have to take care of the house, the children and of my mother in law • Economic Dependency • Once my husband gives me the money, I go for antenatal visits. But all depends on how long it takes for him to have the money. Because, he also have to pay for the transportation and for the prescriptions • Social control • I had to wait for my mother to come and to accompany me to the doctor

Stigma, Rejection and Vulnerability: “Losing the fighting spirit” • Self destruction • “I told myself I’d better die. I was walking in the middle of the street so as to be run over, I was even brushed by one car.” • Blues and loosing power to negotiate safer sex • “ When they get in a night club and see you, they get out. They refuse to share a taxi with you, so I stay at home and I loose income” • Implicit rejection • “When I am not at home at midday, my brother says they do not have to keep something to eat for me. When I am ill… Once, I even was hospitalised… He never asks me how I am. He does not mind. He never comes to visit me at the hospital. I am taking my pills, but some time, I just want to die” • Stigma in Health services, Body language • “The secretaries look at you queerly, they scratch their colleagues and the nurses… The only thing you want to do is to leave the place without seeing the Doctor”

Social Status Supports • The mother: • “She will never use the information to do some harm; the mother is the only person in the world ready to sacrifice herself for her child. If she could, she would be ill instead of her child.” a 25 years old MSM • But conflict with their daughter • Aunt; Social and Symbolic mother • Maternal family and Identity • Women and MSM • Jeegu ibbi, Meeru Ibbi (Hospital, Job, Cemetery) • A very close friend capable of keeping the secret: • “I felt the need to share with a very close friend. I am sure I do not risk he would stigmatise me, make me feel I am guilty or point me out with his finger. He will not tell anybody.” A 51 years old man. • A very close girlfriend capable of keeping the secret: • “One of my very close girlfriends… I really trust her. I know that if I tell her something, nobody else will know, unless I myself go to tell it.” A 33 years old pregnant woman.

With whom? Close nucleus Large nucleus Telling the status -Can protect the information -Can give support or advice -Will never use the information against the PLWHA -Are open enough so as not to stigmatise anyone -Mother -Sister or elder brother, -Close friend -Open minded person - Other PLWHA or - MSM and CSW - Husband - Wife -Physician with an understanding mind -Person working in AIDS field Refusal to share status -Are going to stigmatise -Are going to draw profit from the information to harm -Will not be able to keep the information -Draw social profit from AIDS -Father -The others in the surroundings -Step brothers and sisters -The females co-spouses - Husband - Wife -The illiterates -The secretaries and the nurses -The TV, the radio -The politicians - The neighbourhood Levels of social relations analysis with regard to sharing serologic status

PARTICIPATORY APPROACH FOR INTERVENTION • Systemic approach • Individual / Partner • Household / Extended Family • Community / Health Services • Individual level • Knowledge of HIV/AIDS • beyond modes of transmission and prevention • Capacity building for Self esteem, Communication, Negotiating safer sex and Personal Human Right Protection • Close nucleus identities • Household, family, Kinship and Close Relationship • Community based Interventions • PWAIDS social Networks (sharing experiences) • Outreach Services (Going to people in need) • Community Social Networks (taking charge of excluded and marginalized people) • Structural interventions • Health system / Human rights • Cultural intervention • Building Interfaces between Traditional and Modern responses

Exploring ways to use community networks in charge of excluded and marginalized people

Building Capacity for Communicating sensitive issues (Exploring use of coded messages)

CONSTRAINS: Paying the Price of dealing with complexity • Unexpected networks and communication channels between Intervention Groups and Control Groups • Time • Human resources • Scoop of work • Practical level • Paradigm • Deconstructing Western scientific paradigm • Towards new paradigm social science paradigm including African Cultural and historical Heritage

Managing the Complexity of the HIV/AIDS Challenge in Sub-Saharan Africa