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

Multi-site Multi-Country HIV Positive Prevention Research in West

Africa

SAHARA

Africa’s Global Diversity Africa’s Global Diversity

Local diversity: HIV/AIDS Situation in SenegalLocal 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

CULT

SOCIO-ECONOMIC

STATUS

GENDERGOVERNMENT

&POLICIES

SPIRITUALITY

URE

CONTEXTUAL FRAMEWORK FOR RESEARCHCONTEXTUAL FRAMEWORK FOR RESEARCH

PLW

POLICY MAKERS

RESEARCHERS COMMUNITIES

NGOS & INTERNATIONAL

PARTNERS

AIDS

OBJECTIVESOBJECTIVES

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 & POPULATIONSSITES & 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)

METHODESMETHODES 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 riskVulnerability: 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”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 Vulnerability and social construction of pregnancy, delivery and breastfeedingpregnancy, 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 factorsEnvironmental / 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: Stigma, Rejection and Vulnerability: “Losing the fighting spirit”“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 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.

Levels of social relations analysis with regard to sharing Levels of social relations analysis with regard to sharing serologic statusserologic status

  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

PARTICIPATORY APPROACH FOR INTERVENTIONPARTICIPATORY 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 Exploring ways to use community networks in charge of excluded and marginalized peoplecharge of excluded and marginalized people

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

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

CONSTRAINS: Paying the Price of CONSTRAINS: Paying the Price of dealing with complexitydealing 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