**Meet the editor**

Dr. Kasenga is a graduate of Tumaini University, Kilimanjaro Christian Medical College, Moshi, Tanzania and Umeå University, Sweden. He obtained a Master's degree in Public Health and PhD in Public Health and Epidemiology. He has a background in Clinical Medicine and has taken courses at higher diploma levels in public health from University of Transkei, Republic of

South Africa, and African Medical and Research Foundation (AMREF) in Nairobi, Kenya. Dr. Kasenga worked in different places in and outside Malawi, and has held various positions, such as Licensed Medical Officer, HIV/AIDS Programme Officer, HIV/AIDS resource person in the International Department of Diakonhjemet College, Oslo, Norway. He also managed an Integrated HIV/AIDS Prevention programme for over 5 years. He is currently working as a Director for the Health Ministries Department of Malawi Union of the Seventh Day Adventist Church. Dr. Kasenga has published over 5 articles on HIV/AIDS issues focusing on Prevention of Mother to Child Transmission of HIV (PMTCT), including a book chapter on HIV testing counseling (currently in press). Dr. Kasenga is married to Grace and blessed with three children, a son and two daughters: Happy, Lettice and Sungani.

Contents

**Preface IX** 

Chapter 1 **HIV Surveillance 3** 

Chapter 3 **Social Determinants** 

Chapter 5 **Antenatal Screening** 

**Part 1 Prevention of HIV/AIDS in General 1** 

Chapter 2 **Is It Possible to Implement AIDS'** 

**Part 2 Prevention of Mother to Child** 

Dominique Berger

Ali Mirzazadeh and Saharnaz Nedjat

**Prevention in Primary School? 13** 

**of HIV Health Care: A Tale of Two Cities** 33

Zitha Mokomane and Mokhantšo Makoae

**Transmission of HIV (PMTCT) 75** 

Ali A. Al-Jabri, Abdullah A. Balkhair,

Chapter 6 **Effectiveness of the Regular Implementation** 

and the ESTHER-Brescia Study Group

Simard Sébastien and Gilbert Caroline

Mohammed S. Al-Balosh and Sidgi S. Hasson

**of the Mother to Child Transmission Plus** 

Chapter 4 **The Role of the Private Sector in HIV and AIDS Interventions in Developing Countries: The Case of Lesotho 59** 

**and HIV-Pregnancy: Strategies for Treatment 77** 

**(MTCT-Plus) Program in Burkina Faso, West Africa 87**  Fabio Buelli, Virginio Pietra, Richard Fabian Schumacher, Jacques Simpore, Salvatore Pignatelli, Francesco Castelli

Chapter 7 **Exosomes Decrease** *In Vitro* **Infectivity of HIV-1 Preparations:** 

Subra Caroline, Burelout Chantal, Proulx Sophie,

**Implication for CD4+T Lymphocyte Depletion** *In Vivo* **99** 

Rupali Kotwal Doshi, Carlos del Rio and Vincent C. Marconi

## Contents

### **Preface XI**


	- **Part 2 Prevention of Mother to Child Transmission of HIV (PMTCT) 75**

X Contents


## Preface

This volume, dealing with various aspects of HIV/AIDS, is the outgrowth of a continuing need for controlling and reducing this pandemic. Scientific approaches have been used as basis for compiling this book. It should be understood that HIV/AIDS is a public health problem that goes beyond trans-cultural perspectives, which require multi-sectoral action the world has never seen.

HIV/AIDS is associated with an individual's choices in lifestyle, gender issues and socio-economic status, but sometimes occurs with no choice at all, especially for children born from women carrying HIV. Thanks to modern technology and scientific advances aimed at limiting the transmission of HIV from an infected mother to her baby, there has been noticeable success in the field.

In some cases, certain chapters have covered materials beyond the comprehension or requirements of an ordinary reader. This is an opportunity that provides great sources of knowledge for those who seek to know and do more. Although antiretroviral treatment has been advocated in this book, the authors wish to draw the reader's attention to the world of prevention and control as the main stay for dealing with this problem. Using empirical and multifaceted efforts, prevention and control measures can be implemented and yield expected outcomes.

*Like any other book on the subject in question, this book is not a substitute or exhausting the subject of HIV and AIDS.* However, it aims at complementing what is already in circulation and adds value to the clarification of certain concepts to create more room for reasoning and being part of the problem solving for this global pandemic. It is further expected to complement a wide range of studies done on this subject and provides a platform for more up-to-date information on this subject.

This book could be of great value should the readers translate its contents into practice and contribute to the quality of life of those living with HIV/AIDS, as well as prevent the masses from contracting HIV infection.

> **Fyson H. Kasenga, MPH, PhD**  Director, Health Ministries Malawi Union of Seventh Day Adventist Church, Blantyre, Malawi

**Part 1** 

**Prevention of HIV/AIDS in General** 

**Part 1** 

**Prevention of HIV/AIDS in General** 

**1** 

*Iran* 

**HIV Surveillance** 

*WHO Representative Office, Tehran,* 

*Tehran University of Medical Science,* 

Ali Mirzazadeh1,2 and Saharnaz Nedjat3 *1Regional Knowledge Hub for HIV/AIDS Surveillance, Kerman University of Medical Sciences, Kerman, 2HIV/AIDS & Communicable Disease Unit,* 

*3School of Public Health, Knowledge Utilization Research Center,* 

Epidemiological surveillance is defined as the ongoing systematic collection, recording, analysis, interpretation and dissemination of data reflecting the current health status of a community or population. It is essential to planning, implementation and evaluation of public health practice and is closely integrated with the timely dissemination of these data to those who need to know. The definition emphasizes the use of data for public health

The objectives of HIV surveillance include the provision of timely and reliable information for: advocacy for resources for prevention and care, mobilization of political commitment

So, HIV surveillance is trying to provide qualified evidences for decision makers to better response to HIV epidemic. In order to reach the above objectives, different elements of HIV surveillance has been developed and implemented in different settings. In this chapter we review these elements. Before addressing the different elements of HIV surveillance, we

HIV infection results in a chronic condition which is started from *primary HIV infection* with unspecified signs/symptoms (such as fever, muscle aches and swollen glands). Then most affected persons have mild or no symptoms for several years. Gradually, as their immune

action, not simply the collection of information as an end in itself.

 effective targeting of prevention, care and support programmes monitoring and evaluation of the aggregate impact of programmes

 identifying information gaps and guiding research to fill those gaps making health policies to maximize the effectiveness of the above.

should have a view of HIV infection and its natural phases of infection.

**2. The natural history of HIV disease and disease stages** 

appropriate resource allocation between affected populations and areas

**1. Introduction** 

developing new programmes

 tracking the leading edge of the epidemic projecting future care and prevention needs

informing the public

## **HIV Surveillance**

Ali Mirzazadeh1,2 and Saharnaz Nedjat3

*1Regional Knowledge Hub for HIV/AIDS Surveillance, Kerman University of Medical Sciences, Kerman, 2HIV/AIDS & Communicable Disease Unit, WHO Representative Office, Tehran, 3School of Public Health, Knowledge Utilization Research Center, Tehran University of Medical Science, Iran* 

## **1. Introduction**

Epidemiological surveillance is defined as the ongoing systematic collection, recording, analysis, interpretation and dissemination of data reflecting the current health status of a community or population. It is essential to planning, implementation and evaluation of public health practice and is closely integrated with the timely dissemination of these data to those who need to know. The definition emphasizes the use of data for public health action, not simply the collection of information as an end in itself.

The objectives of HIV surveillance include the provision of timely and reliable information for:


So, HIV surveillance is trying to provide qualified evidences for decision makers to better response to HIV epidemic. In order to reach the above objectives, different elements of HIV surveillance has been developed and implemented in different settings. In this chapter we review these elements. Before addressing the different elements of HIV surveillance, we should have a view of HIV infection and its natural phases of infection.

## **2. The natural history of HIV disease and disease stages**

HIV infection results in a chronic condition which is started from *primary HIV infection* with unspecified signs/symptoms (such as fever, muscle aches and swollen glands). Then most affected persons have mild or no symptoms for several years. Gradually, as their immune

HIV Surveillance 5

We elaborate different components of HIV surveillance by the course of HIV infection in Figure 2. Surveillance for HIV infection could be done at four key points: Before, at, after the




also included as the advance component of this phase - Surveillance components of dead AIDS cases (Mortality):

This part includes vital registry of all cases died due to AIDS.

It includes Behavioural and STI surveillance activities. Surveys for estimating the prevalence of risky behaviours and inadequate knowledge on ways to prevent HIV transmission are measures among the general population or high-risk subpopulation (i.e FSWs, IDUs and MSM depend on the context). Sexual Transmitted Infections (STIs) surveillance is also helping the country to track the high-risk populations who are susceptible to get the HIV infection through sexual routes. STIs treatment and care will

It's addressing the surveillance activities which could provide an estimated of HIV incidence. HIV incidence is very hard to be estimated and new methods are proposed and implemented. However, many countries did not apply these methods as they are expensive and also laboratories do not have the capacities to do these new tests. As a strategic alternative, it's recommended to include early infant diagnosis surveillance for

These include a verity of surveillance activities such as HIV case reporting, Advanced HIV case reporting, prevalence studies among the general population or high-risk groups, sentinel HIV surveillance among specific groups such as pregnant women at the antenatal clinics. These activities will provide information on the direction of the HIV epidemic in the population and the burden of disease. HIV drug resistance studies

The rest of the chapter focuses on HIV case reporting surveillance. If you are interested on the other components such as Sentinel HIV Surveillance and Bio-Behavioral Surveys, more could be found in Guidelines for conducting HIV sentinel serosurveys among pregnant women and other groups (2003) and Guidelines for repeated behavioral surveys in populations at risk of HIV; Durham, North Carolina, Family Health International (2000).

As one part of the HIV surveillance system, HIV in all clinical stages (including advanced HIV cases and AIDS) is an ongoing reporting system in many countries including the lowand middle-income countries. Since 2006, World Health Organization (WHO) has recommended to replace AIDS case reporting with HIV cases and advanced HIV infection.

survey and the definition of the target population.

time of HIV infection and death:

reduce this susceptibility.

**3. HIV case reporting** 

having a proxy for incidence measures.

STI):

transmitted diseases. In some settings test for tuberculosis is also integrated. Data on behavioral and serological exams are linked and analysis jointly to provide more comprehensive information on the HIV epidemics and its determinants. These Bio-Behavioral surveys could be divided into two categories: (1) facility based surveys (2) community bases surveys. The main differences between these two methods are coming from the sampling schemes that applied for recruiting the subjects into the

system weakens, they will experiences HIV-related clinical symptoms and illnesses. Without specific treatment, the HIV infected person will experience all clinical stages ended with the end-stage disease called AIDS (**Figure 1**).

Fig. 1. Key HIV stages which could be reported in HIV case reporting surveillance

HIV transmitted from an infected person to another mainly through:


As it's obvious, there drivers of the HIV epidemics in a community are risk behaviors. To control the spread of the HIV epidemic, we need to collect information not only on the number of affected people and their previous risky behaviors, but also gather strategic information on the behaviors of the subpopulations especially who are most at risk for acquiring the HIV infection naming female sex workers, injecting drug users, men who have sex with men. Second generation surveillance for HIV/AIDS has been proposed by WHO and UNAIDS to provide such information to response to HIV/AIDS epidemic efficiently.

Second generation surveillance for HIV/AIDS is the regular, systematic collection, analysis and interpretation of information for use in tracking and describing changes in the HIV/AIDS epidemic over time. Second generation surveillance for HIV/AIDS also gathers information on risk behaviors, using them to warn of or explain changes in levels of infection. As such, second generation surveillance includes, in addition to HIV surveillance and AIDS case reporting, STI surveillance to monitor the spread of STI in populations at risk of HIV and behavioral surveillance to monitor trends in risk behaviors over time. These different components achieve greater or lesser significance depending of the surveillance needs of a country, determined by the level of the epidemic it is facing: low level, concentrated or generalized.

The core elements of HIV/AIDS Surveillance included


It's comparable as disease routine reporting system. Persons diagnosed HIV infection (clinical stages 1-4) and/or advanced HIV disease (clinical stages 3 and 4) registered and reported systematically through the health system.


system weakens, they will experiences HIV-related clinical symptoms and illnesses. Without specific treatment, the HIV infected person will experience all clinical stages ended with the

Fig. 1. Key HIV stages which could be reported in HIV case reporting surveillance

As it's obvious, there drivers of the HIV epidemics in a community are risk behaviors. To control the spread of the HIV epidemic, we need to collect information not only on the number of affected people and their previous risky behaviors, but also gather strategic information on the behaviors of the subpopulations especially who are most at risk for acquiring the HIV infection naming female sex workers, injecting drug users, men who have sex with men. Second generation surveillance for HIV/AIDS has been proposed by WHO and UNAIDS to provide such information to response to HIV/AIDS epidemic efficiently. Second generation surveillance for HIV/AIDS is the regular, systematic collection, analysis and interpretation of information for use in tracking and describing changes in the HIV/AIDS epidemic over time. Second generation surveillance for HIV/AIDS also gathers information on risk behaviors, using them to warn of or explain changes in levels of infection. As such, second generation surveillance includes, in addition to HIV surveillance and AIDS case reporting, STI surveillance to monitor the spread of STI in populations at risk of HIV and behavioral surveillance to monitor trends in risk behaviors over time. These different components achieve greater or lesser significance depending of the surveillance needs of a country, determined by

It's comparable as disease routine reporting system. Persons diagnosed HIV infection (clinical stages 1-4) and/or advanced HIV disease (clinical stages 3 and 4) registered

In some health centers, blood is collected routinely for other proposes such as routine antenatal cares for pregnant women. A portion of this blood can be used for HIV testing.

Surveys of HIV-related behavior that involve asking a sample of people about their risk behaviors, such as their sexual and drug-injecting behavior. In addition to behavioral questionnaire, blood or saliva also collected to be tested for HIV and/or other sexual

HIV transmitted from an infected person to another mainly through:

the level of the epidemic it is facing: low level, concentrated or generalized.

The core elements of HIV/AIDS Surveillance included

and reported systematically through the health system.



end-stage disease called AIDS (**Figure 1**).





transmitted diseases. In some settings test for tuberculosis is also integrated. Data on behavioral and serological exams are linked and analysis jointly to provide more comprehensive information on the HIV epidemics and its determinants. These Bio-Behavioral surveys could be divided into two categories: (1) facility based surveys (2) community bases surveys. The main differences between these two methods are coming from the sampling schemes that applied for recruiting the subjects into the survey and the definition of the target population.

We elaborate different components of HIV surveillance by the course of HIV infection in Figure 2. Surveillance for HIV infection could be done at four key points: Before, at, after the time of HIV infection and death:


It includes Behavioural and STI surveillance activities. Surveys for estimating the prevalence of risky behaviours and inadequate knowledge on ways to prevent HIV transmission are measures among the general population or high-risk subpopulation (i.e FSWs, IDUs and MSM depend on the context). Sexual Transmitted Infections (STIs) surveillance is also helping the country to track the high-risk populations who are susceptible to get the HIV infection through sexual routes. STIs treatment and care will reduce this susceptibility.


It's addressing the surveillance activities which could provide an estimated of HIV incidence. HIV incidence is very hard to be estimated and new methods are proposed and implemented. However, many countries did not apply these methods as they are expensive and also laboratories do not have the capacities to do these new tests. As a strategic alternative, it's recommended to include early infant diagnosis surveillance for having a proxy for incidence measures.

	- This part includes vital registry of all cases died due to AIDS.

The rest of the chapter focuses on HIV case reporting surveillance. If you are interested on the other components such as Sentinel HIV Surveillance and Bio-Behavioral Surveys, more could be found in Guidelines for conducting HIV sentinel serosurveys among pregnant women and other groups (2003) and Guidelines for repeated behavioral surveys in populations at risk of HIV; Durham, North Carolina, Family Health International (2000).

#### **3. HIV case reporting**

As one part of the HIV surveillance system, HIV in all clinical stages (including advanced HIV cases and AIDS) is an ongoing reporting system in many countries including the lowand middle-income countries. Since 2006, World Health Organization (WHO) has recommended to replace AIDS case reporting with HIV cases and advanced HIV infection.

HIV Surveillance 7

Cases diagnosed with advanced HIV infection (including AIDS) not previously reported should be reported according to a standard case definition. Advanced HIV infection (Table 2) is diagnosed based on clinical and/or immunological (CD4) criteria (Table 3) among people with confirmed HIV infection. AIDS case reporting for surveillance is no longer

Advanced HIV infection is diagnosed based on clinical and/or immunological (CD4) criteria

**Clinical criteria** for diagnosis of advanced HIV in adults and children with confirmed

**Immunological criteria** for diagnosing advanced HIV in adults and children five years or

**Immunological criteria** for diagnosing advanced HIV in a child younger than five years

Table 2. WHO case definition of advanced HIV (infection or disease) (including AIDS) for

None or not significant >35 >30 >25 > 500

12–35 months (%CD4+)

Mild 30–35 25–30 20–25 350−499

Severe <25 <20 <15 <200 or <15%

Advanced 25–29 20–24 15−19 200−349

1World Health Organization, WHO case definitions of HIV for surveillance and revised clinical staging

Age-related CD4 values

36 –59 months (%CD4+)

>5 years (absolute number per mm3 or %CD4+)

CD4 count less than 350 per mm3 of blood in an HIV-infected adult or child.

required if HIV infection or advanced HIV infection is reported.

Criteria for diagnosis of advanced HIV (including AIDS) for reporting

Presumptive or definitive diagnosis of any stage 3 or stage 4 condition.

among people with confirmed HIV infection:

older with confirmed HIV infection:

of age with confirmed HIV infection:

 %CD4+ <30 among those younger than 12 months; %CD4+ <25 among those aged 12–35 months; %CD4+ <20 among those aged 36–59 months.

> <11 months (%CD4+)

Table 3. WHO immunological classification for established HIV infection

and immunological classification of HIV-related disease in adults and children. 2007

HIV infection:

*and/or;* 

*and/or;* 

reporting1

HIV-associated immunodeficiency

Fig. 2. Key HIV Surveillance Component by phases of HIV infection [Advances and future directions in HIV surveillance Diaz et al. Curr Opin HIV AIDS 4:253-259]

These identified cases are reported confidentially either by names or by anonymous codes. HIV case reporting refers to the methods used to capture individual-level information about persons with HIV infection. Each person with HIV infection is reported using a single case report form which contains information pertaining only to that person. This type of reporting occurs at the level of the health facility and is forwarded to the local level as individual case reports. The local-level surveillance officers combine the data and forward them on to the national surveillance programme where they will be computerized.

WHO refers to reporting all stages of HIV as "HIV infection reporting (all clinical stages)" (Table1) and to reporting of advanced HIV (clinical stages 3 and 4 only) as "advanced HIV infection (disease) reporting." Reporting advanced HIV infection includes AIDS.


Table 1. WHO case definition for HIV infection

Fig. 2. Key HIV Surveillance Component by phases of HIV infection [Advances and future

These identified cases are reported confidentially either by names or by anonymous codes. HIV case reporting refers to the methods used to capture individual-level information about persons with HIV infection. Each person with HIV infection is reported using a single case report form which contains information pertaining only to that person. This type of reporting occurs at the level of the health facility and is forwarded to the local level as individual case reports. The local-level surveillance officers combine the data and forward

WHO refers to reporting all stages of HIV as "HIV infection reporting (all clinical stages)" (Table1) and to reporting of advanced HIV (clinical stages 3 and 4 only) as "advanced HIV

antigens or of different operating characteristics;

virological test obtained from a separate determination.

Positive HIV antibody testing (rapid or laboratory-based enzyme immunoassay). This is confirmed by a second HIV antibody test (rapid or laboratory-based enzyme immunoassay) relying on different

Positive biological test for HIV or its components (HIV-RNA or HIV-DNA or ultrasensitive HIV p24 antigen) confirmed by a second

positive virological test for HIV or its components (HIV-RNA or HIV-DNA or ultrasensitive HIV p24 antigen) confirmed by a second virological test obtained from a separate determination taken more than four weeks after birth. Positive HIV antibody testing is not

recommended for definitive or confirmatory diagnosis of HIV infection

them on to the national surveillance programme where they will be computerized.

infection (disease) reporting." Reporting advanced HIV infection includes AIDS.

HIV infection is diagnosed based on:

HIV infection is diagnosed based on:

in children until 18 months of age.

and/or;

Table 1. WHO case definition for HIV infection

Adults and children 18 months or older

Children younger than 18 months:

directions in HIV surveillance Diaz et al. Curr Opin HIV AIDS 4:253-259]

Cases diagnosed with advanced HIV infection (including AIDS) not previously reported should be reported according to a standard case definition. Advanced HIV infection (Table 2) is diagnosed based on clinical and/or immunological (CD4) criteria (Table 3) among people with confirmed HIV infection. AIDS case reporting for surveillance is no longer required if HIV infection or advanced HIV infection is reported.

Advanced HIV infection is diagnosed based on clinical and/or immunological (CD4) criteria among people with confirmed HIV infection:

Criteria for diagnosis of advanced HIV (including AIDS) for reporting

**Clinical criteria** for diagnosis of advanced HIV in adults and children with confirmed HIV infection:

Presumptive or definitive diagnosis of any stage 3 or stage 4 condition.

*and/or;* 

**Immunological criteria** for diagnosing advanced HIV in adults and children five years or older with confirmed HIV infection:

CD4 count less than 350 per mm3 of blood in an HIV-infected adult or child.

*and/or;* 

**Immunological criteria** for diagnosing advanced HIV in a child younger than five years of age with confirmed HIV infection:


Table 2. WHO case definition of advanced HIV (infection or disease) (including AIDS) for reporting1


Table 3. WHO immunological classification for established HIV infection

<sup>1</sup>World Health Organization, WHO case definitions of HIV for surveillance and revised clinical staging and immunological classification of HIV-related disease in adults and children. 2007

HIV Surveillance 9

Countries should carefully consider which elements to include in the case report form. It should include only information that is readily available to the person completing the form and that can be collected from most of the reporting facilities. It should not be a burden to

We elaborate this section by presenting an example of health system in a country which medical universities providing health for the people in all areas of the country. Here, the

**Level 1 - Health Facilities**: all urban and rural health centers, clinics, hospitals, private offices at the time of diagnosis an HIV case in all clinical stages should report the case. **Activities**: the responsible staff fill Form 1 for every one who meets the case definition

**Level 2 - District health centers**: these are district health centers which are responsible for

 **Activities**: every month, the responsible staff will compile the received data and then fill an aggregated data reporting form and submit it to the Center for Disease Control of the University. By doing sort of data analysis, feedbacks developed and send to the

Use of prophylaxis against Pneumocystis jirovecii pneumonia

 Care and treatment Use of ART

> Date of death Cause of death.

people who complete it.

flow of data is divided into four levels (**Figure 3**).

Fig. 3. Flow of data in a country designed in four levels

and report the case to level 2

providing health to district inhabitants.

health facilities working in the district.

**Level 3 – Center for Disease Control at the University:** 

**6. Flow of data** 

Vital status

Date first used ART

## **4. Events which could be reported in HIV case reporting**

HIV case reporting, if developed / implemented properly, can provide the health authorities necessary information which are needed for better understanding of the HIV epidemic and monitoring the success of the programmes. The reported cases at any stages of the disease could be used for producing the following indicators:


## **5. Elements of a case report form**

A comprehensive case report form should include:

	- Name and address of facility where the report is submitted from (reporting source)
	- Date form completed
	- Report status (new or update)
	- Patient identifier (name or code)
	- Date of birth
	- Sex
	- Current status (alive, dead, unknown)
	- Country of residence
	- Sex with male
	- Sex with female
	- Injected non-prescription drugs
	- Perinatal/MTCT
	- Blood transmission-related variables
	- Occupational exposure
	- Date of HIV diagnosis
	- Facility of diagnosis
	- Date of first clinical stage
	- Clinical stage
	- Date of first clinical stage 3 diagnosis
	- Date of first clinical stage 4 diagnosis
	- Date of first CD4 test
	- Result of first CD4 test (count and/or percentage)
	- Date of first CD4 count <350 cells/mm3
	- Date of first CD4 count <200 cells/mm3

HIV case reporting, if developed / implemented properly, can provide the health authorities necessary information which are needed for better understanding of the HIV epidemic and monitoring the success of the programmes. The reported cases at any stages of

 HIV prevalence (the number or percentage of all persons living with HIV, regardless of how long they have been infected or whether or not they are aware of their infection)

Name and address of facility where the report is submitted from (reporting source)

**4. Events which could be reported in HIV case reporting** 

the disease could be used for producing the following indicators: HIV incidence (the number or percentage of new HIV infections)

 The incidence of advanced HIV infection The prevalence of advanced HIV infection Deaths from advanced HIV infection.

A comprehensive case report form should include:

**5. Elements of a case report form** 

Administrative information

Demographic information

Date of birth

 Sex with male Sex with female

Perinatal/MTCT

Diagnosis information

Clinical stage

Immunologic status

HIV clinical stage

Occupational exposure

 Date of HIV diagnosis Facility of diagnosis

Date of first clinical stage

Date of first CD4 test

Sex

Date form completed

Country of residence

Report status (new or update)

Patient identifier (name or code)

Injected non-prescription drugs

Blood transmission-related variables

 Date of first clinical stage 3 diagnosis Date of first clinical stage 4 diagnosis

 Date of first CD4 count <350 cells/mm3 Date of first CD4 count <200 cells/mm3

Result of first CD4 test (count and/or percentage)

Current status (alive, dead, unknown)

Information on the patient's HIV-related risk behaviour

	- Use of ART
	- Date first used ART
	- Use of prophylaxis against Pneumocystis jirovecii pneumonia
	- Date of death
	- Cause of death.

Countries should carefully consider which elements to include in the case report form. It should include only information that is readily available to the person completing the form and that can be collected from most of the reporting facilities. It should not be a burden to people who complete it.

#### **6. Flow of data**

We elaborate this section by presenting an example of health system in a country which medical universities providing health for the people in all areas of the country. Here, the flow of data is divided into four levels (**Figure 3**).

Fig. 3. Flow of data in a country designed in four levels

**Level 1 - Health Facilities**: all urban and rural health centers, clinics, hospitals, private offices at the time of diagnosis an HIV case in all clinical stages should report the case.

 **Activities**: the responsible staff fill Form 1 for every one who meets the case definition and report the case to level 2

**Level 2 - District health centers**: these are district health centers which are responsible for providing health to district inhabitants.

 **Activities**: every month, the responsible staff will compile the received data and then fill an aggregated data reporting form and submit it to the Center for Disease Control of the University. By doing sort of data analysis, feedbacks developed and send to the health facilities working in the district.

**Level 3 – Center for Disease Control at the University:** 

HIV Surveillance 11


percentage of women and men aged 15–49 who received HIV testing in the previous 12

percentage of young women and men who have had sexual intercourse before the age

percentage of female and male sex workers reporting use of a condom with their most

percentage of injection drug users who reported using sterile injection equipment the

Although different indicators have been proposed by many international bodies including UNAIDS and WHO, countries should decide from which they will benefit from and is much related to the context and their level of HIV epidemics. They should define the target groups

[1] World Health Organization and UNAIDS. Second generation surveillance for HIV:

[2] World Health Organization and UNAIDS. Initiating Second Generation HIV

[3] World Health Organization and UNAIDS. Guidelines for Second Generation HIV

[4] Introduction to HIV, AIDS and STI Surveillance: HIV Clinical Staging and Case

[5] Theresa Diaza, Jesus M. Garcia-Callejab, Peter D. Ghysc and Keith Sabina, Advances and

[6] World Health Organization, WHO case definitions of HIV for surveillance and revised

compilation of basic materials. CD-ROM. Geneva, World Health Organization

Surveillance Systems: Practical Guidelines. Geneva, World Health Organization

Surveillance for HIV:The Next Decade. Geneva, World Health Organization

future directions in HIV surveillance in low- and middle-income countries, Curr

clinical staging and immunological classification of HIV-related disease in adults

percentage of most-at-risk populations reached by HIV prevention programmes


Percentage of most-at-risk populations who are HIV-infected.

of HIV surveillance and adopt the indicators accordingly.

(WHO/HIV/2002.07).2002

(WHO/HIV/2002.17). 2002

Reporting, September 2009

Opin HIV AIDS 4:253–259

and children. 2007

(WHO/CDS/EDC/2000.05). 2000

As mentioned before, here the focus is on measuring the risky behaviors which make people susceptible for acquiring the infection. So, samples of people requited in a behavioral survey and complete a questionnaire including sections for sexual behaviors, drug injection and knowledge for HIV prevention, and history of HIV testing and counseling. This data is applied for produce behavioral indicators which used to compare populations, geographic areas and programme impact over time. Examples of

**8. Core indicators according to the phases of the infection** 

these interfamily wide-use indicators are:

months and who know their results

most recent time they injected

STI):

of 15

recent client

**9. References** 

 **Activities**: every month, the responsible staff will compile the received data and then fill out an aggregated data reporting form to be sent to the Center for Disease Control of the Ministry (National Surveillance Unit). By doing sort of data analysis, feedbacks developed and send to the district health centers.

### **Level 4 –Center for District Control at the Ministry (National Surveillance Unit):**

 **Activities**: every three months, the responsible staff will compile the received data, make a comprehensive analysis on the received data, and draft the quarterly national surveillance report and distribute it to all the stakeholders to be used.

## **7. Analysis and feedbacks on cases reporting surveillance**

Most of the time, analysis of surveillance data is mainly done only by descriptive analysis to estimate the level of indicators such as the number of affected people by sex, percentage of those cases reported sexual contact as the most probable route of transmission. These estimates should be interpreted according to time to explore the trends and direction of the epidemic. As an example, here we elaborate the analysis and feedback steps of a national HIV case reporting surveillance (in line with the previous section)

**Level 2 feedbacks**: every three months, HIV surveillance report including the last status of HIV in the district and the trend analysis of the reported data should be sent to all health facilities (even if they did not reported any case of HIV during the period). Such report should have at least the following information:


**Level 3 feedbacks**: every three months, HIV surveillance report including the last status of HIV in the province and the trend analysis of the reported data should be sent to all district health centers (even if they did not reported any case of HIV during the period).

Such reports should have at least the following information:


**Level 4 feedbacks**: every three months, HIV surveillance report including the last status of HIV in the province and the trend analysis of the reported data should be sent to all district health centers (even if they did not reported any case of HIV during the period).

Such reports should have at least the following information:


If an increase of 10% has been observed in a university for a period of two sequential months, the feedback should be send to that university and the neighborhood universities at the earliest convenience. It should be done separately from the CDC three-month report.

 **Activities**: every month, the responsible staff will compile the received data and then fill out an aggregated data reporting form to be sent to the Center for Disease Control of the Ministry (National Surveillance Unit). By doing sort of data analysis, feedbacks

 **Activities**: every three months, the responsible staff will compile the received data, make a comprehensive analysis on the received data, and draft the quarterly national

Most of the time, analysis of surveillance data is mainly done only by descriptive analysis to estimate the level of indicators such as the number of affected people by sex, percentage of those cases reported sexual contact as the most probable route of transmission. These estimates should be interpreted according to time to explore the trends and direction of the epidemic. As an example, here we elaborate the analysis and feedback steps of a national

**Level 2 feedbacks**: every three months, HIV surveillance report including the last status of HIV in the district and the trend analysis of the reported data should be sent to all health facilities (even if they did not reported any case of HIV during the period). Such report

3. Total number of reported cases by age and sex groups including the main routes of

**Level 3 feedbacks**: every three months, HIV surveillance report including the last status of HIV in the province and the trend analysis of the reported data should be sent to all district

3. Total number of reported cases by age and sex groups including the main routes of

**Level 4 feedbacks**: every three months, HIV surveillance report including the last status of HIV in the province and the trend analysis of the reported data should be sent to all district

3. Total number of reported cases by age and sex groups including the main routes of

If an increase of 10% has been observed in a university for a period of two sequential months, the feedback should be send to that university and the neighborhood universities at the earliest convenience. It should be done separately from the CDC three-month

**Level 4 –Center for District Control at the Ministry (National Surveillance Unit):** 

surveillance report and distribute it to all the stakeholders to be used.

**7. Analysis and feedbacks on cases reporting surveillance** 

HIV case reporting surveillance (in line with the previous section)

2. Three months trend in compare to the previous three-month period

2. Three months trend in compare to the previous three-month period

2. Three months trend in compare to the previous three-month period

Such reports should have at least the following information:

Such reports should have at least the following information:

health centers (even if they did not reported any case of HIV during the period).

health centers (even if they did not reported any case of HIV during the period).

should have at least the following information:

1. Three months trend

transmission.

1. Three months trend

transmission.

1. Three months trend

transmission.

report.

developed and send to the district health centers.

## **8. Core indicators according to the phases of the infection**


As mentioned before, here the focus is on measuring the risky behaviors which make people susceptible for acquiring the infection. So, samples of people requited in a behavioral survey and complete a questionnaire including sections for sexual behaviors, drug injection and knowledge for HIV prevention, and history of HIV testing and counseling. This data is applied for produce behavioral indicators which used to compare populations, geographic areas and programme impact over time. Examples of these interfamily wide-use indicators are:


Although different indicators have been proposed by many international bodies including UNAIDS and WHO, countries should decide from which they will benefit from and is much related to the context and their level of HIV epidemics. They should define the target groups of HIV surveillance and adopt the indicators accordingly.

### **9. References**


[7] Guidelines for conducting HIV sentinel serosurveys among pregnant women and other groups. Geneva, UNAIDS and WHO, 2003

**2** 

*France* 

Dominique Berger

**Is It Possible to Implement AIDS'** 

*PAEDI, EA 4281, Claude Bernard University - Lyon 1 - IUFM* 

In France, health education is included in the primary school science curriculum. A part of this curriculum is called "human body and health education" (MEN, 2002). A quantitative study of teachers' practices showed that teachers focus mainly on nutrition, hygiene, and dental health (Jourdan, & al., 2002). In the curriculum, the topic "Reproduction of living beings and sexuality education" concerns children aged 9-11 (Key Stage 2). Teachers often acknowledge that teaching about sexuality education and prevention of sexually transmitted diseases is difficult, because they do not feel comfortable with the subject matter. In a previous study (Jourdan et al., 2002), it had been shown that sexuality and AIDS were tackled by only 8 teachers out of 286 that were involved in the study. However, the curriculum guidelines of the French ministry of education (MEN, 2003) and the World Health Organisation (WHO) texts insist on the necessity for implementing early sexuality education and HIV/AIDS prevention programs, particularly in primary schools (WHO, 1999, 2004a). In this context, developing exchanges of experiences and partnership between teachers and health educators (school health services and health education NGOs) seems to

The nature of health education in schools also implies taking ethical considerations into account. The aim is not to promote a new secular morality defining "good" (healthy) and "bad" (risky) behaviours, but to prepare the children for responsible citizenship. Hence teachers in health education should not attempt to impose norms of acceptable behaviours, but should taking into account children's peculiarities, expectations, needs, and also their representations. Children's representations are thought to provide coherent models to represent learner reasoning when faced with a problematic situation (Jodelet, 1991; Farr, 1997). The construction of these representations is rather complex as this phenomenon depends on the values and beliefs shared by a social group, and which give rise within a social groupto a common outlook manifested during social interactions. As these representations are linked to an individual's emotional responses as well as the cultural and social group(s) the individual belongs to, they constitute a decisive element in his/her relationships with the world, and are resistant to change. Representations therefore seem very essential (Fischer, 2001), are closely linked to behaviour (Abric, 1997), and cannot be

Any programme attempting to change representations should not only take into consideration the relevant knowledge, but also the social and cultural aspects of the

**1. Introduction** 

be quite relevant.

changes as readily as knowledge.

**Prevention in Primary School?** 

[8] HIV surveillance in the Middle East and North Africa: a handbook for surveillance planners and implementers / World Health Organization. Regional Office for the Eastern Mediterranean, Joint United Nations Programme on HIV/AIDS, 2010

## **Is It Possible to Implement AIDS' Prevention in Primary School?**

Dominique Berger *PAEDI, EA 4281, Claude Bernard University - Lyon 1 - IUFM France* 

## **1. Introduction**

12 Understanding HIV/AIDS Management and Care – Pandemic Approaches in the 21st Century

[7] Guidelines for conducting HIV sentinel serosurveys among pregnant women and other

[8] HIV surveillance in the Middle East and North Africa: a handbook for surveillance

planners and implementers / World Health Organization. Regional Office for the Eastern Mediterranean, Joint United Nations Programme on HIV/AIDS, 2010

groups. Geneva, UNAIDS and WHO, 2003

In France, health education is included in the primary school science curriculum. A part of this curriculum is called "human body and health education" (MEN, 2002). A quantitative study of teachers' practices showed that teachers focus mainly on nutrition, hygiene, and dental health (Jourdan, & al., 2002). In the curriculum, the topic "Reproduction of living beings and sexuality education" concerns children aged 9-11 (Key Stage 2). Teachers often acknowledge that teaching about sexuality education and prevention of sexually transmitted diseases is difficult, because they do not feel comfortable with the subject matter. In a previous study (Jourdan et al., 2002), it had been shown that sexuality and AIDS were tackled by only 8 teachers out of 286 that were involved in the study. However, the curriculum guidelines of the French ministry of education (MEN, 2003) and the World Health Organisation (WHO) texts insist on the necessity for implementing early sexuality education and HIV/AIDS prevention programs, particularly in primary schools (WHO, 1999, 2004a). In this context, developing exchanges of experiences and partnership between teachers and health educators (school health services and health education NGOs) seems to be quite relevant.

The nature of health education in schools also implies taking ethical considerations into account. The aim is not to promote a new secular morality defining "good" (healthy) and "bad" (risky) behaviours, but to prepare the children for responsible citizenship. Hence teachers in health education should not attempt to impose norms of acceptable behaviours, but should taking into account children's peculiarities, expectations, needs, and also their representations. Children's representations are thought to provide coherent models to represent learner reasoning when faced with a problematic situation (Jodelet, 1991; Farr, 1997). The construction of these representations is rather complex as this phenomenon depends on the values and beliefs shared by a social group, and which give rise within a social groupto a common outlook manifested during social interactions. As these representations are linked to an individual's emotional responses as well as the cultural and social group(s) the individual belongs to, they constitute a decisive element in his/her relationships with the world, and are resistant to change. Representations therefore seem very essential (Fischer, 2001), are closely linked to behaviour (Abric, 1997), and cannot be changes as readily as knowledge.

Any programme attempting to change representations should not only take into consideration the relevant knowledge, but also the social and cultural aspects of the

Is It Possible to Implement AIDS' Prevention in Primary School? 15

what they learned at school, but also on all the other aspects of their lives (Downie,

The research programme was developed by the Auvergne I.U.F.M. (Teachers' Training Institute), the I.N.R.P. (National Institute for Pedagogical Research) and the School of Medicine at the University of St Etienne, in partnership with the local School Health

by a pilot committee, which defined its ethical framework on the basis of the texts published by the French Society of Public Health. This pilot committee included representatives of parents' associations, Regional Health Authorities (DDASS), the School of Medicine, the Training Institute, primary teachers, the heads of the schools concerned, and the technical advisers of school health services. The implementation of the project in each school involved its approval by the school council, a meeting with the parents, the training of those

Services. The research design was regularly approved and evaluated

Figure 1 presents the collaborative research design founded on six principles:

3. Inclusion of all the classes at each school level investigated.

1. Insure complementarily between regular teacher's activities and interventions of health

2. Thoroughly preparing the context of the project by involving the families, teachers, and school health services in the comprehensive approach. These partners actively participated in the design of the study (questionnaire, interventions in the classrooms,

Tannahill, & Tannahill, 1996).

involved, and the action in the classroom.

Fig. 1. Research's design

relationship with the population).

educators.

children's daily environment. (Doise & Mugny, 1997). The interest of taking into account pupils' representations in an HIV/AIDS education programme for children under twelve has been already justified (Fassler, Mc Queen, Ducan & Copeland (1989; Ferron, Feard, Bon, Spyckerelle, & Deschamps,1989; Thomas, 1991; Sly. Eberstein, Quadano, & Kistner, 1992; Schaalma, Kok, & Peters, 1993; Shonfeld et al., 1993; Kelly, 1995; WHO, 1999, 2004a, 2004b). This chapter presents a collaborative research project attempting to identify and study the initial representations of 9 and 10 year-old pupils relating to aids and to examine the impact of an early educational programme on regular teacher's activities and interventions of health educators.

Some of the initial results of the study have been already reported in a French journal for teachers (Berger, Collet, Laquet-Riffaud, & Jourdan, 2003).

## **2. Methodology**

Most evaluations of health education programs are usually quasi-experimental designs, but to study health education other designs seem more appropriate (Victoria, Habicht, & Bryce 2004). In our context, using a controlled randomized study design as a method for assessing the effects of the implementation of a programme would be excessively difficult. The impact of the intervention on the children's social environment means that attempting to use a control group would be delusive, and that attaining true randomisation would be virtually impossible (Tones & Tilford, 2001). This situation results from the complex nature of causal chains in public health interventions.

In spite of their limits, several authors have concluded in favour of collaborative research designs aiming at determining exactly what content and what tools would be most suitable for health education (Darroch, & Silverman, 1989; Heymans, 1993). Associating all agents in the design and implementing the programme based on collaborative research design makes it possible to make the interactions between researcher and agents more visible and transparent (Martinand, 2003; Merini, 2005). These would be otherwise masked and confounding factors.

The data for the present study concern the two sides of the collaborative research. On one hand, an account of the general course of the study is provided and, on the other hand, the results from two questionnaires (pre- and post-questionnaire) that were used to collect information on pupils' representations are compared and analyzed.

#### **2.1 Programme**

The model on which this study is based relates to the "allosteric learning model" described by Giordan (1995). This socio-constructivist model assumes that learners build knowledge from their own lives, and learn through their mental representations that depend on their social and biological experiences, and their dispositions.

Learning is a highly active mental process that operates in an integrative mode through the conflict between what a learner has in his/her mind and what (s)he can identify and understand from his/her environment. When a learner develops a new model, all his/her mental models must be reorganized based on an interaction between the pre-existing representations and new information from environmental sources (Giordan, 2000). Health education requires the teacher to take the pupils' representations into account and to help them construct new and more relevant ones. Moreover, each child's environment must be taken into account in the programme as children's representations are not only based on

children's daily environment. (Doise & Mugny, 1997). The interest of taking into account pupils' representations in an HIV/AIDS education programme for children under twelve has been already justified (Fassler, Mc Queen, Ducan & Copeland (1989; Ferron, Feard, Bon, Spyckerelle, & Deschamps,1989; Thomas, 1991; Sly. Eberstein, Quadano, & Kistner, 1992; Schaalma, Kok, & Peters, 1993; Shonfeld et al., 1993; Kelly, 1995; WHO, 1999, 2004a, 2004b). This chapter presents a collaborative research project attempting to identify and study the initial representations of 9 and 10 year-old pupils relating to aids and to examine the impact of an early educational programme on regular teacher's activities and interventions of

Some of the initial results of the study have been already reported in a French journal for

Most evaluations of health education programs are usually quasi-experimental designs, but to study health education other designs seem more appropriate (Victoria, Habicht, & Bryce 2004). In our context, using a controlled randomized study design as a method for assessing the effects of the implementation of a programme would be excessively difficult. The impact of the intervention on the children's social environment means that attempting to use a control group would be delusive, and that attaining true randomisation would be virtually impossible (Tones & Tilford, 2001). This situation results from the complex nature of causal

In spite of their limits, several authors have concluded in favour of collaborative research designs aiming at determining exactly what content and what tools would be most suitable for health education (Darroch, & Silverman, 1989; Heymans, 1993). Associating all agents in the design and implementing the programme based on collaborative research design makes it possible to make the interactions between researcher and agents more visible and transparent (Martinand, 2003; Merini, 2005). These would be otherwise masked and

The data for the present study concern the two sides of the collaborative research. On one hand, an account of the general course of the study is provided and, on the other hand, the results from two questionnaires (pre- and post-questionnaire) that were used to collect

The model on which this study is based relates to the "allosteric learning model" described by Giordan (1995). This socio-constructivist model assumes that learners build knowledge from their own lives, and learn through their mental representations that depend on their

Learning is a highly active mental process that operates in an integrative mode through the conflict between what a learner has in his/her mind and what (s)he can identify and understand from his/her environment. When a learner develops a new model, all his/her mental models must be reorganized based on an interaction between the pre-existing representations and new information from environmental sources (Giordan, 2000). Health education requires the teacher to take the pupils' representations into account and to help them construct new and more relevant ones. Moreover, each child's environment must be taken into account in the programme as children's representations are not only based on

information on pupils' representations are compared and analyzed.

social and biological experiences, and their dispositions.

teachers (Berger, Collet, Laquet-Riffaud, & Jourdan, 2003).

health educators.

**2. Methodology** 

confounding factors.

**2.1 Programme** 

chains in public health interventions.

what they learned at school, but also on all the other aspects of their lives (Downie, Tannahill, & Tannahill, 1996).

The research programme was developed by the Auvergne I.U.F.M. (Teachers' Training Institute), the I.N.R.P. (National Institute for Pedagogical Research) and the School of Medicine at the University of St Etienne, in partnership with the local School Health Services. The research design was regularly approved and evaluated

by a pilot committee, which defined its ethical framework on the basis of the texts published by the French Society of Public Health. This pilot committee included representatives of parents' associations, Regional Health Authorities (DDASS), the School of Medicine, the Training Institute, primary teachers, the heads of the schools concerned, and the technical advisers of school health services. The implementation of the project in each school involved its approval by the school council, a meeting with the parents, the training of those involved, and the action in the classroom.

## Fig. 1. Research's design

Figure 1 presents the collaborative research design founded on six principles:


Is It Possible to Implement AIDS' Prevention in Primary School? 17

privileged. Population C (30%) was quite privileged, and D (25%) was highly privileged. This classification brought out variations in the number of children per family. For Population A, there was an average of more than 4 children, for B and C, there was an average of 1.7, and for D, an average 1.5 of children per family. The children from Population A were the only ones to have parents with a significant age difference. The father was on average 10 years older than the mother, whereas, in the other sub-categories, the father was on average no more than 3.5 years older than the mother. However, the

The children classified in A were generally older than those in the other sub-populations and faced more difficulties at school. Sixty percent of them repeated a year at least once

Due to the age of the pupils, it was not possible to use either the same questionnaire for adolescents and adults, or a multiple choice questionnaire to determine, as it was done with adolescents, the way the children represented modes of infection. Indeed, unfamiliar words, coming from adult or adolescent vocabulary about sexuality, inhibited communication with young children (WHO, 1999). However, we designed a new questionnaire based on preexisting ones, but in which the vocabulary had been modified based on the results obtained in the pilot study. Thus, in spite of the fact that it made the questions harder to analyse, we used many open questions, sometimes along with closed questions. Using only closed questions would not have enabled us to grasp the complexity of the representations of AIDS

The validation of the questionnaire (understanding of the questions, coherence between writing questionnaire, and interview) was carried out at the end of the pilot study with a sample of children, who first filled in the questionnaire and then were interviewed. The

 An evaluation of the representations of the possibilities of living with an affected person. An evaluation of social and individual representations of solidarity towards affected people. The same questionnaire was applied for both the pre-test and the main test

For the analysis of our pilot investigation, we started by devising a thesaurus. Each answer was put in a lexical category and coded. This made it possible to take subtle differences into account. The total number of words was 255, and the number of items we added to the first version of the thesaurus after our first processing was low (< 10%). These precautions were taken in order to standardize the data acquired from the questionnaires and reduce any

We initially attempted to measure the impact of early preventive action on children's representations. The protocol was composed of two interventions in the course of the school

average age of the mothers in the four sub-populations was the same (35 years).

(16% for the other groups).

**2.3 Questionnaire** 

in young children.

Knowledge about AIDS

distortion in interpretation.

**2.4 Teaching approach** 

Modes of infection and protection.

questionnaire had 22 questions covering 7 aspects: Initial representations of the HIV pandemic. An assessment of communication about AIDS.

following intervention (series 1 and 2).

Determining how close the subject feels the epidemic to be.


The programme was developed on the basis of previous studies, (see Kirby, 2002 and UNAIDS, 1997). It was first piloted in a school during the school year preceding the study. The team that worked at each site was composed of six people (three per single-sex half group). Two persons from the research team, two representatives of school health services (a nurse and a doctor), and two observers who were to evaluate the teaching project and the way it was implemented.

Evaluation of the process was carried out using the following indicators:


## **2.2 Population**

The study was performed in the south east of France (the regions of the Loire and Haute Loire) in 1998-2000. It concerned pupils in "Cours moyen première année" (CM1) et "Cours moyen deuxième année" (CM2), which correspond to Key Stage 2. The sample was composed of 10 schools and 18 classes. Due to the small size of the sample, its characteristics do not correspond to those of the reference population, that is, it was not a representative sample. Nevertheless, schools corresponding to the main types of school in the country were selected (small size / large size; rural / urban; privileged / under-privileged). The research team asked teachers if they were willing to cooperate in the study. All the teachers that were questioned volunteered to have their class take part in the project. The overall results of the investigation concern 353 children. Among the participating children, 54% were girls and 46% were boys, while 31% and 69% of them came from CM1 and CM2, respectively. The total sample can be divided into 4 sub-groups depending on the social environment of the school. This classification was established using the criteria of the National Institute of Statistics and Economic Studies (INSEE 2003), that is to say, on the basis of the head of the family's profession. Population A (14%) was severely under-privileged (coming from schools classified as "educational priority zones"). Population B (31%) was relatively underprivileged. Population C (30%) was quite privileged, and D (25%) was highly privileged. This classification brought out variations in the number of children per family. For Population A, there was an average of more than 4 children, for B and C, there was an average of 1.7, and for D, an average 1.5 of children per family. The children from Population A were the only ones to have parents with a significant age difference. The father was on average 10 years older than the mother, whereas, in the other sub-categories, the father was on average no more than 3.5 years older than the mother. However, the average age of the mothers in the four sub-populations was the same (35 years).

The children classified in A were generally older than those in the other sub-populations and faced more difficulties at school. Sixty percent of them repeated a year at least once (16% for the other groups).

## **2.3 Questionnaire**

16 Understanding HIV/AIDS Management and Care – Pandemic Approaches in the 21st Century

The programme was developed on the basis of previous studies, (see Kirby, 2002 and UNAIDS, 1997). It was first piloted in a school during the school year preceding the study. The team that worked at each site was composed of six people (three per single-sex half group). Two persons from the research team, two representatives of school health services (a nurse and a doctor), and two observers who were to evaluate the teaching project and the

 For the pilot committee, the number of meetings that were held was compared with the scheduling and the number of participants in each category (parents, teachers, doctors, and nurses). There were three interviews with all the members of the pilot committee, one before the project, one between the two sessions, and one after the results of the

 For the school health services, an individual and anonymous questionnaire was used. It dealt with the form of the action, its pedagogical value, and the analysis of the elements benefiting health education in schools. Fourteen school nurses and 14 school doctors

 For the school staff, the same type of individual and anonymous questionnaire was used. All the teachers and heads of schools involved in the programme (28) were

 The participation of the parents was measured for every meeting, and analysed in relation to the age group of the pupils and to the socio-economic status of the schools.

The study was performed in the south east of France (the regions of the Loire and Haute Loire) in 1998-2000. It concerned pupils in "Cours moyen première année" (CM1) et "Cours moyen deuxième année" (CM2), which correspond to Key Stage 2. The sample was composed of 10 schools and 18 classes. Due to the small size of the sample, its characteristics do not correspond to those of the reference population, that is, it was not a representative sample. Nevertheless, schools corresponding to the main types of school in the country were selected (small size / large size; rural / urban; privileged / under-privileged). The research team asked teachers if they were willing to cooperate in the study. All the teachers that were questioned volunteered to have their class take part in the project. The overall results of the investigation concern 353 children. Among the participating children, 54% were girls and 46% were boys, while 31% and 69% of them came from CM1 and CM2, respectively. The total sample can be divided into 4 sub-groups depending on the social environment of the school. This classification was established using the criteria of the National Institute of Statistics and Economic Studies (INSEE 2003), that is to say, on the basis of the head of the family's profession. Population A (14%) was severely under-privileged (coming from schools classified as "educational priority zones"). Population B (31%) was relatively under-

Twenty interviews were carried out with parents from 4 categories of schools. Each session was evaluated by an outside observer, using a grid including items relating to the way the session went, the interactions between adults and children, the

involvement of the children, and the amount of time they spoke.

5. Separating children into groups according to gender (separating girls from boys). 6. Using a participatory activity design with games and tools that favour high rates of

4. Working with groups of children of adapted size (no more than 15).

Evaluation of the process was carried out using the following indicators:

participation.

way it was implemented.

were interviewed.

interviewed.

**2.2 Population** 

project had been made available.

Due to the age of the pupils, it was not possible to use either the same questionnaire for adolescents and adults, or a multiple choice questionnaire to determine, as it was done with adolescents, the way the children represented modes of infection. Indeed, unfamiliar words, coming from adult or adolescent vocabulary about sexuality, inhibited communication with young children (WHO, 1999). However, we designed a new questionnaire based on preexisting ones, but in which the vocabulary had been modified based on the results obtained in the pilot study. Thus, in spite of the fact that it made the questions harder to analyse, we used many open questions, sometimes along with closed questions. Using only closed questions would not have enabled us to grasp the complexity of the representations of AIDS in young children.

The validation of the questionnaire (understanding of the questions, coherence between writing questionnaire, and interview) was carried out at the end of the pilot study with a sample of children, who first filled in the questionnaire and then were interviewed. The questionnaire had 22 questions covering 7 aspects:


For the analysis of our pilot investigation, we started by devising a thesaurus. Each answer was put in a lexical category and coded. This made it possible to take subtle differences into account. The total number of words was 255, and the number of items we added to the first version of the thesaurus after our first processing was low (< 10%). These precautions were taken in order to standardize the data acquired from the questionnaires and reduce any distortion in interpretation.

#### **2.4 Teaching approach**

We initially attempted to measure the impact of early preventive action on children's representations. The protocol was composed of two interventions in the course of the school

Is It Possible to Implement AIDS' Prevention in Primary School? 19

exchanges and make sure that everyone participated. This process was repeated for each

Our ethical approach was to use only the vocabulary from the presentation or that was used by the children, excluding any words or expressions coming from adolescent or adult vocabulary, particularly in the field related to the management of sexuality. This was essential as we found that use of unfamiliar sexuality related terms coming from adult or adolescent vocabulary inhibited communication and thwarted our objectives. However, by using in our answers exactly the same expressions and words that the children used to formulate their questions, which were sometimes very direct questions about sexual practices, we could show the children that any subject can be tackled with them. The educator's role was mainly to get the discussion going, to modify, or to substantiate the representations by clarifying points, and, if necessary, to offer extra help in completing

**The card game in the first session:** The card game was devised for this experiment and for this particular group. It was based on an approach developed for adolescents (Ricard, 2000) and on the results of the pilot study. It included situations in daily life concerning both close relationships with affected people and more distant situations, so as to enable the children to express their certainties and doubts, and the rumours they had heard. The rules were simple. Each child was given some cards. He read out what was written on the card, showed it to the group, and put it down on one of three cards which indicated no risk, I do not know, or high risk. The child explained his choice and then asked the group to say what they thought. This approach enabled us to involve all the children, even the shyest, and

**Role playing game in the second session:** The aim of this activity was to get the pupils to talk about HIV/AIDS while adopting a point of view different from their own. They had to take the role of parents, teachers, and children in concrete situations. This game is intended to put the children in a situation where they could express and become aware of their own representations of the pandemic, the risk of infection, and the ways of protecting

**Final written work:** The children dictated to the educator an account of what they had done, or of the ideas and things which they felt to be important, and which they, therefore, wanted to share with their families and class teacher. The advantage this strategy had over an individual account was that it did not put the children in a difficult school situation by

The questionnaires were processed by the statistics department at the St Etienne School of Medicine, according to the thesaurus drawn up during the pre-test, using Epi info 5.01 and SPSS. The level of estimated statistical significance applied for the tests was *p.* < 0.05. When the size of samples was small, the adjusted Khi2 (Yates method) was used and, if the size of one of the samples was beneath 5, we kept the results given by Fisher's test. The analysis was only univariate. The questions asked by the children were analysed using the method of

themselves. This projected identification had a powerful emotional component.

asking them to write. It also made it possible to summarize what was essential.

question that had been asked by the children prior to the break.

fragmentary or sketchy knowledge.

gave them an opportunity to express themselves.

**2.8 Teaching tools** 

**3. Results** 

**3.1 Statistical analysis** 

year, one at the beginning and one at the end, at least six months later. Between the two interventions, the regular teachers worked on health education with the pupils ("normal" biology course including sexuality education). The two sessions were designed with the same pedagogical structure, which had two requirements, that is, to collect useful evidence from the questionnaires, and to put the children in a position where they were actors in their own learning process. The two sessions were structured as follows: A short presentation of the team and the framework, a question-writing time, a presentation about HIV/AIDS, work in small single-sex groups on the answers to the questions asked without the teachers, a game (a card-game for the first, and role-playing for the second), and, finally, the collective writing of a text for the teacher and the families.

#### **2.5 Presenting the questionnaire**

The questionnaire was intended to characterize children's initial representations and it was anonymous. After the pre-test, it appeared to be necessary, in order to attain this goal, to break away from the school environment and the behaviour it induces, especially in relation to writing. So, in the instructions for the procedure, we stressed that neither spelling nor the quality of the writing were important. What we were interested in was what the children thought, and in having them express their ideas in their own words. The intent was not to make things hard for the children by asking them to write, but simply to obtain their answers so we could analyse them and associate them with representations. We also explained that we would not give any further explanations about the meaning of the questions, as, we were afraid that in doing so, we could influence the answers. In order for all the children to be able to fill in the questionnaire as best as they could, we chose a collective approach. Each question was read out aloud and timed. Thus, we were able to include all the questionnaires in the analysis process, even those from children with serious literacy problems.

#### **2.6 Information provided**

This presentation was intended to provide precise and complex scientific information, and to give unity to sketchy and fragmentary representations, re-situating them in a context, and bringing out the link between the illness, the people, forms of behaviour, and oneself.

#### **2.7 The children's questions**

After children had filled in the questionnaire, they were invited to ask any questions they wanted to freely and anonymously, so that the educators could answer them in the second part of the session. Another form had been prepared for this and annexed to the questionnaire. Our aim here was to make the children put their questions in written form before the informational presentation, as well as to give us a representative body of questions, and to define these precisely before providing answers.

While the children were at break, their questions were written out again, with no modification whatsoever. After break, the children were put in single-sex groups in separate rooms without their regular teachers so as to make it easier for the children to express themselves more freely on private issues pertaining to genitalia and sexuality. The presence of fellow pupils of the opposite sex and of the regular teacher that pupils will continue to study with could discourage the children from discussing these issues openly. The health educator then read out a question and asked the group to respond, only taking part to give clarification, to substantiate an answer, to get the children talking again, or to regulate the exchanges and make sure that everyone participated. This process was repeated for each question that had been asked by the children prior to the break.

Our ethical approach was to use only the vocabulary from the presentation or that was used by the children, excluding any words or expressions coming from adolescent or adult vocabulary, particularly in the field related to the management of sexuality. This was essential as we found that use of unfamiliar sexuality related terms coming from adult or adolescent vocabulary inhibited communication and thwarted our objectives. However, by using in our answers exactly the same expressions and words that the children used to formulate their questions, which were sometimes very direct questions about sexual practices, we could show the children that any subject can be tackled with them. The educator's role was mainly to get the discussion going, to modify, or to substantiate the representations by clarifying points, and, if necessary, to offer extra help in completing fragmentary or sketchy knowledge.

#### **2.8 Teaching tools**

18 Understanding HIV/AIDS Management and Care – Pandemic Approaches in the 21st Century

year, one at the beginning and one at the end, at least six months later. Between the two interventions, the regular teachers worked on health education with the pupils ("normal" biology course including sexuality education). The two sessions were designed with the same pedagogical structure, which had two requirements, that is, to collect useful evidence from the questionnaires, and to put the children in a position where they were actors in their own learning process. The two sessions were structured as follows: A short presentation of the team and the framework, a question-writing time, a presentation about HIV/AIDS, work in small single-sex groups on the answers to the questions asked without the teachers, a game (a card-game for the first, and role-playing for the second), and, finally, the collective

The questionnaire was intended to characterize children's initial representations and it was anonymous. After the pre-test, it appeared to be necessary, in order to attain this goal, to break away from the school environment and the behaviour it induces, especially in relation to writing. So, in the instructions for the procedure, we stressed that neither spelling nor the quality of the writing were important. What we were interested in was what the children thought, and in having them express their ideas in their own words. The intent was not to make things hard for the children by asking them to write, but simply to obtain their answers so we could analyse them and associate them with representations. We also explained that we would not give any further explanations about the meaning of the questions, as, we were afraid that in doing so, we could influence the answers. In order for all the children to be able to fill in the questionnaire as best as they could, we chose a collective approach. Each question was read out aloud and timed. Thus, we were able to include all the questionnaires in the

This presentation was intended to provide precise and complex scientific information, and to give unity to sketchy and fragmentary representations, re-situating them in a context, and bringing out the link between the illness, the people, forms of behaviour, and oneself.

After children had filled in the questionnaire, they were invited to ask any questions they wanted to freely and anonymously, so that the educators could answer them in the second part of the session. Another form had been prepared for this and annexed to the questionnaire. Our aim here was to make the children put their questions in written form before the informational presentation, as well as to give us a representative body of

While the children were at break, their questions were written out again, with no modification whatsoever. After break, the children were put in single-sex groups in separate rooms without their regular teachers so as to make it easier for the children to express themselves more freely on private issues pertaining to genitalia and sexuality. The presence of fellow pupils of the opposite sex and of the regular teacher that pupils will continue to study with could discourage the children from discussing these issues openly. The health educator then read out a question and asked the group to respond, only taking part to give clarification, to substantiate an answer, to get the children talking again, or to regulate the

analysis process, even those from children with serious literacy problems.

questions, and to define these precisely before providing answers.

writing of a text for the teacher and the families.

**2.5 Presenting the questionnaire** 

**2.6 Information provided** 

**2.7 The children's questions** 

**The card game in the first session:** The card game was devised for this experiment and for this particular group. It was based on an approach developed for adolescents (Ricard, 2000) and on the results of the pilot study. It included situations in daily life concerning both close relationships with affected people and more distant situations, so as to enable the children to express their certainties and doubts, and the rumours they had heard. The rules were simple. Each child was given some cards. He read out what was written on the card, showed it to the group, and put it down on one of three cards which indicated no risk, I do not know, or high risk. The child explained his choice and then asked the group to say what they thought. This approach enabled us to involve all the children, even the shyest, and gave them an opportunity to express themselves.

**Role playing game in the second session:** The aim of this activity was to get the pupils to talk about HIV/AIDS while adopting a point of view different from their own. They had to take the role of parents, teachers, and children in concrete situations. This game is intended to put the children in a situation where they could express and become aware of their own representations of the pandemic, the risk of infection, and the ways of protecting themselves. This projected identification had a powerful emotional component.

**Final written work:** The children dictated to the educator an account of what they had done, or of the ideas and things which they felt to be important, and which they, therefore, wanted to share with their families and class teacher. The advantage this strategy had over an individual account was that it did not put the children in a difficult school situation by asking them to write. It also made it possible to summarize what was essential.

#### **3. Results**

#### **3.1 Statistical analysis**

The questionnaires were processed by the statistics department at the St Etienne School of Medicine, according to the thesaurus drawn up during the pre-test, using Epi info 5.01 and SPSS. The level of estimated statistical significance applied for the tests was *p.* < 0.05. When the size of samples was small, the adjusted Khi2 (Yates method) was used and, if the size of one of the samples was beneath 5, we kept the results given by Fisher's test. The analysis was only univariate. The questions asked by the children were analysed using the method of

Is It Possible to Implement AIDS' Prevention in Primary School? 21

parents from the most underprivileged schools involved, and the number of parents present was always very low. However, there was a high attendance rate for parents from more privileged schools. As a result of these meetings, it was obvious that very few parents were against early AIDS prevention, and there was not any obvious and definite opposition. The observations made by parents mainly concerned their desire that family religious and

We were able to study 350 forms. The variables which we used were gender (190 girls and 160 boys), the class at school (114 CM1 and 236 CM2), and the social class (highly privileged 88, quite privileged 103, quite underprivileged 109, and seriously underprivileged 50). Only the first ten questions asked by each child were taken into account and analysed. During the first session, the children asked a total of 1267 questions, and during the secon 759. Thus, there was a drop of 40% (*p.*<10- 3). The average number of questions asked in the first series was 3.62 per child, and for the second 2.16. In the first session, 95.7% of the children asked at least one question, and 73.7% in the second. The number of questions asked per pupil goes down significantly faster in the second series than in the first (*p*.<10-3). Between the two sessions, there was a significant increase (*p* <10- 3) of the number of children not asking any

The analysis of the questions showed that the changes varied according to the item concerned. There was little or no change for the questions about the disease, "love and sexuality," anxiety, the fight against AIDS, and living with the virus. There was a significant decrease in the number of questions concerning the modes of infection (*p*.<10-3) and protection behaviours (*p*.=0.025). The questions on protection, anxiety, attempts to understand, and even the questions on modes of infection, go down much more for the boys than for the girls. The children coming from severely underprivileged families still asked a

lot of questions (*p.*=0.03), as did those from a highly privileged background (*p* =0.04).

difference was observed between second and first session, the data are in bold print.

other parts of the questionnaire are not shown in this article).

The analysis of the first questionnaire gives an overview of the initial representations of the pupils. The results are shown in Table 1.The comparison between pre- and postquestionnaires guided us to identify where a modification of representations was observed. The analysis was performed taking into account five points: (a) knowledge about AIDS, (b) communication about AIDS, (c) knowledge about the disease, (d) knowledge about modes of infection and protection, and (e) relationships with affected people (the analysis of the

The pupils were required to complete the questionnaire before session 1 and before session 2. The results are shown in Table 1. For the closed questions, the results are expressed as percentages of the total number of questionnaires taken into account in the analysis. For openended questions, the responses have been grouped into different items and are expressed as percentages of the total number of questionnaires including an answer to the concerned question (data are given in Table 1 only if the items are cited in more than 5 % of the cases in session 1 or 2). For multiple choice questions, the total percentage could exceed 100, because children were allowed to give more than one answer. When a significant impact of gender, age, or social status on the responses was observed, it is indicated. When a significant

philosophical beliefs be respected.

**3.4 Analysis of the questionnaires** 

**3.3 Analysis of the questions asked by the children** 

questions, rising from 19 in the first series to 96 in the second.

the "analysis of content" (Bardin, 1993). We therefore put the answers together according to their semantic structure, and observed combined frequency indicators ( co-occurrence analysis), which enabled us to establish links between the data (Microsoft Access).

The data described here focus on a comparative study of the results of the two questionnaires. However, the programme was also assessed by the pilot committee, the school medical staff, the teachers and the parents.

#### **3.2 Evaluation of the process**

**The pilot committee**: The committee supervised the research activities all the way throughout the entire project. They met before the sessions to validate the protocol and also defined an ethical framework based on respecting people, and respecting the convictions of the children and their families. After the first session, the results of the first set of data were presented, as well as a report written by observers from outside the team about the way the ethical framework had been respected, and how the sessions had gone and been managed. Once the whole protocol had been applied, the different results and analyses were presented and discussed. All members of the committee attended regularly, including parents' associations. In the interviews at the end of the project, the committee members declared that their opinions had been taken into account.

**Medical staff**: The evaluation of the schools' medical staff (school doctors and nurses) was carried out through an anonymous individual questionnaire. The entire data set obtained by this questionnaire cannot be analysed here. The results show that the medical staff found the organization relevant. After the experiment, they admitted that they felt more comfortable about tackling the issues of AIDS and sexuality in a comprehensive approach to health education for young pupils. They expressed their need for training, to update their knowledge about HIV, to learn how to teach health education, and to develop their theoretical and pedagogical background. Teachers: For the teachers, an anonymous individual questionnaire was also used. Teachers said they were in favour of this kind of intervention in schools, insisting on how advantageous it was to build up partnerships with competent professionals who have been trained for such actions with children, not with a view of making up for insufficiencies or to replace the class teacher, but to working with the teacher on a common project that is part of their syllabus. Before the intervention, most teachers found it hard or even impossible to talk about such matters with their pupils, although they were well aware of the need for it. The reasons they put forward for this were: (a) They did not have enough knowledge about the disease, the way it is caught, and what protection can be used. (They considered that the only information they had was from the media, and deemed this to be inadequate for giving precise information to children). (b) They were afraid of how the parents might react as they considered this topic to a delicate or sensitive subject. (c) They found it hard to tackle questions about sexuality with children. (d) They were worried that they might be asked questions that they could not answer. Moreover, they all stated that they had changed the way they considered having HIV positive children in their school, and felt better prepared to tackle the issue with parents and colleagues.

**The parents:** Parental attendance at meetings organized in each school before the interventions varied enormously in relation to the social category involved. Families from the most under-privileged social categories attended less than the others. The aims of the meetings were to present the collaborative research project, answer any questions, and give an account of the results. Right from the start, we noted that it was not really possible to get

the "analysis of content" (Bardin, 1993). We therefore put the answers together according to their semantic structure, and observed combined frequency indicators ( co-occurrence

The data described here focus on a comparative study of the results of the two questionnaires. However, the programme was also assessed by the pilot committee, the

**The pilot committee**: The committee supervised the research activities all the way throughout the entire project. They met before the sessions to validate the protocol and also defined an ethical framework based on respecting people, and respecting the convictions of the children and their families. After the first session, the results of the first set of data were presented, as well as a report written by observers from outside the team about the way the ethical framework had been respected, and how the sessions had gone and been managed. Once the whole protocol had been applied, the different results and analyses were presented and discussed. All members of the committee attended regularly, including parents' associations. In the interviews at the end of the project, the committee members declared

**Medical staff**: The evaluation of the schools' medical staff (school doctors and nurses) was carried out through an anonymous individual questionnaire. The entire data set obtained by this questionnaire cannot be analysed here. The results show that the medical staff found the organization relevant. After the experiment, they admitted that they felt more comfortable about tackling the issues of AIDS and sexuality in a comprehensive approach to health education for young pupils. They expressed their need for training, to update their knowledge about HIV, to learn how to teach health education, and to develop their theoretical and pedagogical background. Teachers: For the teachers, an anonymous individual questionnaire was also used. Teachers said they were in favour of this kind of intervention in schools, insisting on how advantageous it was to build up partnerships with competent professionals who have been trained for such actions with children, not with a view of making up for insufficiencies or to replace the class teacher, but to working with the teacher on a common project that is part of their syllabus. Before the intervention, most teachers found it hard or even impossible to talk about such matters with their pupils, although they were well aware of the need for it. The reasons they put forward for this were: (a) They did not have enough knowledge about the disease, the way it is caught, and what protection can be used. (They considered that the only information they had was from the media, and deemed this to be inadequate for giving precise information to children). (b) They were afraid of how the parents might react as they considered this topic to a delicate or sensitive subject. (c) They found it hard to tackle questions about sexuality with children. (d) They were worried that they might be asked questions that they could not answer. Moreover, they all stated that they had changed the way they considered having HIV positive children in

their school, and felt better prepared to tackle the issue with parents and colleagues.

**The parents:** Parental attendance at meetings organized in each school before the interventions varied enormously in relation to the social category involved. Families from the most under-privileged social categories attended less than the others. The aims of the meetings were to present the collaborative research project, answer any questions, and give an account of the results. Right from the start, we noted that it was not really possible to get

analysis), which enabled us to establish links between the data (Microsoft Access).

school medical staff, the teachers and the parents.

that their opinions had been taken into account.

**3.2 Evaluation of the process** 

parents from the most underprivileged schools involved, and the number of parents present was always very low. However, there was a high attendance rate for parents from more privileged schools. As a result of these meetings, it was obvious that very few parents were against early AIDS prevention, and there was not any obvious and definite opposition. The observations made by parents mainly concerned their desire that family religious and philosophical beliefs be respected.

#### **3.3 Analysis of the questions asked by the children**

We were able to study 350 forms. The variables which we used were gender (190 girls and 160 boys), the class at school (114 CM1 and 236 CM2), and the social class (highly privileged 88, quite privileged 103, quite underprivileged 109, and seriously underprivileged 50). Only the first ten questions asked by each child were taken into account and analysed. During the first session, the children asked a total of 1267 questions, and during the secon 759. Thus, there was a drop of 40% (*p.*<10- 3). The average number of questions asked in the first series was 3.62 per child, and for the second 2.16. In the first session, 95.7% of the children asked at least one question, and 73.7% in the second. The number of questions asked per pupil goes down significantly faster in the second series than in the first (*p*.<10-3). Between the two sessions, there was a significant increase (*p* <10- 3) of the number of children not asking any questions, rising from 19 in the first series to 96 in the second.

The analysis of the questions showed that the changes varied according to the item concerned. There was little or no change for the questions about the disease, "love and sexuality," anxiety, the fight against AIDS, and living with the virus. There was a significant decrease in the number of questions concerning the modes of infection (*p*.<10-3) and protection behaviours (*p*.=0.025). The questions on protection, anxiety, attempts to understand, and even the questions on modes of infection, go down much more for the boys than for the girls. The children coming from severely underprivileged families still asked a lot of questions (*p.*=0.03), as did those from a highly privileged background (*p* =0.04).

#### **3.4 Analysis of the questionnaires**

The pupils were required to complete the questionnaire before session 1 and before session 2. The results are shown in Table 1. For the closed questions, the results are expressed as percentages of the total number of questionnaires taken into account in the analysis. For openended questions, the responses have been grouped into different items and are expressed as percentages of the total number of questionnaires including an answer to the concerned question (data are given in Table 1 only if the items are cited in more than 5 % of the cases in session 1 or 2). For multiple choice questions, the total percentage could exceed 100, because children were allowed to give more than one answer. When a significant impact of gender, age, or social status on the responses was observed, it is indicated. When a significant difference was observed between second and first session, the data are in bold print.

The analysis of the first questionnaire gives an overview of the initial representations of the pupils. The results are shown in Table 1.The comparison between pre- and postquestionnaires guided us to identify where a modification of representations was observed. The analysis was performed taking into account five points: (a) knowledge about AIDS, (b) communication about AIDS, (c) knowledge about the disease, (d) knowledge about modes of infection and protection, and (e) relationships with affected people (the analysis of the other parts of the questionnaire are not shown in this article).

Is It Possible to Implement AIDS' Prevention in Primary School? 23

underprivileged, privileged and highly privileged groups for communication inside the family. Results are expressed as percentages of the total number of questionnaires including

Pupils also exchanged on the topic of AIDS with adults, with friends and at school. Fifty-one percent of the children had talked about AIDS with adults before the intervention. At the end, 76 % of them have talked about the subject with adults, either before the first session or between the two sessions. The intervention did not bring on a significant increase in discussion of AIDS within the family in the severely underprivileged group (*p*.=0.3 49%), unlike in the other groups, where there was a significant increase of 74%, 79% and 85%, for groups B, C and D with *p*=0.01, *p.*=0.01, and *p*=.001, respectively, indicating that

Before the intervention, more than half of the children associated AIDS with a fatal illness. On a scale ranging from 0 to 10, the children rated the dangerousness of AIDS at more than 8. Population A alone stands out by assessing its gravity at less than 8 (*p.*=0.007). The illness

Infectious illnesses are not often quoted, and only 5% of the children mention Hepatitis B. After the intervention, we found that references to infectious diseases dropped considerably, and associations with childhood illnesses disappeared. Two-thirds of the children stated that they knew what a virus is, and were able to give a relevant explanation, with a definition based on one of three 'concepts,': a microbe, an illness, or a vector of an illness.

Before the intervention, 88% of the children associated AIDS with a transmissible disease and 97% after the intervention. The change was slight but significant. In the pre-test, 74% of the children correctly answered the question "What gives you AIDS ?" and in the post-test 89%. For the children, AIDS is transmitted by vectors: secretions (sperm), sex, drugs, and the HIV virus; and by behaviour: sexuality, drug addiction, and medical practices related to the handling of blood, such as, transfusion and giving blood. Drug addiction was scarcely mentioned, and references to syringes or exchanging syringes were very uncommon. Similarly, references to materno-foetal transmission, and to incorrect vectors, such as, saliva, mosquitoes, daily actions, morality, or God, were almost non-existent. The lexical field used was fairly limited, but it was wider in the second session. The question was put in such a way as to give the children the possibility of replying by designating supposedly high-risk

The pupils did not consider that people identified as 'deviant' were responsible for beginning the infection. As far as modes of infection are concerned, after the intervention there was a modification concerning the answers about vectors of infection, and those about behaviour. Representations definitely became clearer. Before the sessions, more than half the children explained that contamination came from vectors: sex (1/2) and drugs (3/4), but after the session, they referred to "dangerous" behaviour (90% sexuality and 50% also

Preventive action modified representations concerning modes of infection (*p*.=0.001). However, this reversal was less obvious for the very underprivileged social categories

groups (homosexuals, prostitutes, drug-addicts, dirty people, and others).

communication between the pupils was also enhanced. (clarify the meaning)

an answer to the question.

**3.7 Knowledge about the disease** 

**3.8 Modes of infection and protection** 

mentioned drug addiction).

(*p*.=0.03).

which is symbolically associated with AIDS is cancer.

However, only one-third knew what HIV positive means.

## **3.5 Knowledge about AIDS**

The analysis of the first questionnaire (pre-test) indicated that more than 92% of the children had information about AIDS, while, six months later, this percentage increased to 98% for the second questionnaire. The main source of information was television (88%) followed by the family (25%). However, these results (Question 2) were inconsistent with the results from another question (Question 4), where more than 65% of the children stated that they had talked about AIDS with their families. The only source of information which changed significantly between the two questionnaires was the school (*p*.<10-3). Children mainly associated AIDS with words suggesting, Illness, Death, and Sexuality. They also mentioned, to a lesser extent, condoms, blood as a vector for infection, taking drugs, and finally prevention, and solidarity. The intervention did not trigger any substantial change in initial associations with Illness/Death/Sex, but it nevertheless allowed most children, who had not ever discussed the subject, to be involved in discussions about AIDS. Three-quarters of those who did not mention anything initially, did contribute after the intervention. Thus, the highly privileged group D referred initially to sex and sexuality more than the severely underprivileged group (*p.*<10-3). But, this difference was much smaller at the end of the session (*p*.=0.05).

## **3.6 Communication about AIDS**

Figure 2 shows the differential influence of socioeconomic status on the impact of communication about AIDS with adults (Have you ever talked about AIDS with adults?) and in the family (Have you talked about AIDS in your family?). While an increase incommunication with adults was observed for all 4 groups, it was limited to the

## **Influence of socioeconomic status on the impact of the intervention on communication about AIDS**

*(\* p. < 0.05 \*\* p.< 0.01, \*\*\* p. < 0.001).* 

Fig. 2. Influence of Socioeconomic Status on the Impact of the Intervention on Communication about AIDS.

underprivileged, privileged and highly privileged groups for communication inside the family. Results are expressed as percentages of the total number of questionnaires including an answer to the question.

Pupils also exchanged on the topic of AIDS with adults, with friends and at school. Fifty-one percent of the children had talked about AIDS with adults before the intervention. At the end, 76 % of them have talked about the subject with adults, either before the first session or between the two sessions. The intervention did not bring on a significant increase in discussion of AIDS within the family in the severely underprivileged group (*p*.=0.3 49%), unlike in the other groups, where there was a significant increase of 74%, 79% and 85%, for groups B, C and D with *p*=0.01, *p.*=0.01, and *p*=.001, respectively, indicating that communication between the pupils was also enhanced. (clarify the meaning)

## **3.7 Knowledge about the disease**

22 Understanding HIV/AIDS Management and Care – Pandemic Approaches in the 21st Century

The analysis of the first questionnaire (pre-test) indicated that more than 92% of the children had information about AIDS, while, six months later, this percentage increased to 98% for the second questionnaire. The main source of information was television (88%) followed by the family (25%). However, these results (Question 2) were inconsistent with the results from another question (Question 4), where more than 65% of the children stated that they had talked about AIDS with their families. The only source of information which changed significantly between the two questionnaires was the school (*p*.<10-3). Children mainly associated AIDS with words suggesting, Illness, Death, and Sexuality. They also mentioned, to a lesser extent, condoms, blood as a vector for infection, taking drugs, and finally prevention, and solidarity. The intervention did not trigger any substantial change in initial associations with Illness/Death/Sex, but it nevertheless allowed most children, who had not ever discussed the subject, to be involved in discussions about AIDS. Three-quarters of those who did not mention anything initially, did contribute after the intervention. Thus, the highly privileged group D referred initially to sex and sexuality more than the severely underprivileged group (*p.*<10-3). But, this difference was much smaller at the end of the

Figure 2 shows the differential influence of socioeconomic status on the impact of communication about AIDS with adults (Have you ever talked about AIDS with adults?) and in the family (Have you talked about AIDS in your family?). While an increase incommunication with adults was observed for all 4 groups, it was limited to the

**Influence of socioeconomic status on the impact of the intervention on communication about AIDS** 

**in the family**

\*\*

\*\*

\*\* \*\*\*

Fig. 2. Influence of Socioeconomic Status on the Impact of the Intervention on

privileged

severely underprivileged

NS

**Socioeconomic status**

underprivileged privileged highly

privileged

Before After

privileged highly

**3.5 Knowledge about AIDS** 

session (*p*.=0.05).

**3.6 Communication about AIDS** 

**with adults (including teachers)**

*(\* p. < 0.05 \*\* p.< 0.01, \*\*\* p. < 0.001).* 

underprivileged

\*\* \*\*\* \*\*

severely underprivileged

**Percentage of children having** 

**talked about AIDS** 

Communication about AIDS.

Before the intervention, more than half of the children associated AIDS with a fatal illness. On a scale ranging from 0 to 10, the children rated the dangerousness of AIDS at more than 8. Population A alone stands out by assessing its gravity at less than 8 (*p.*=0.007). The illness which is symbolically associated with AIDS is cancer.

Infectious illnesses are not often quoted, and only 5% of the children mention Hepatitis B. After the intervention, we found that references to infectious diseases dropped considerably, and associations with childhood illnesses disappeared. Two-thirds of the children stated that they knew what a virus is, and were able to give a relevant explanation, with a definition based on one of three 'concepts,': a microbe, an illness, or a vector of an illness. However, only one-third knew what HIV positive means.

#### **3.8 Modes of infection and protection**

Before the intervention, 88% of the children associated AIDS with a transmissible disease and 97% after the intervention. The change was slight but significant. In the pre-test, 74% of the children correctly answered the question "What gives you AIDS ?" and in the post-test 89%. For the children, AIDS is transmitted by vectors: secretions (sperm), sex, drugs, and the HIV virus; and by behaviour: sexuality, drug addiction, and medical practices related to the handling of blood, such as, transfusion and giving blood. Drug addiction was scarcely mentioned, and references to syringes or exchanging syringes were very uncommon. Similarly, references to materno-foetal transmission, and to incorrect vectors, such as, saliva, mosquitoes, daily actions, morality, or God, were almost non-existent. The lexical field used was fairly limited, but it was wider in the second session. The question was put in such a way as to give the children the possibility of replying by designating supposedly high-risk groups (homosexuals, prostitutes, drug-addicts, dirty people, and others).

The pupils did not consider that people identified as 'deviant' were responsible for beginning the infection. As far as modes of infection are concerned, after the intervention there was a modification concerning the answers about vectors of infection, and those about behaviour. Representations definitely became clearer. Before the sessions, more than half the children explained that contamination came from vectors: sex (1/2) and drugs (3/4), but after the session, they referred to "dangerous" behaviour (90% sexuality and 50% also mentioned drug addiction).

Preventive action modified representations concerning modes of infection (*p*.=0.001). However, this reversal was less obvious for the very underprivileged social categories (*p*.=0.03).

Is It Possible to Implement AIDS' Prevention in Primary School? 25

fatal illness as serious as, or more serious than cancer, transmitted by 'sex,' and 'caught' especially by adolescents and adults. They thought the illness could be avoided by putting on a condom (68 %), and detected by 'tests' or going to 'see a doctor' (80%). The content of their scientific statements was still at times completely or partially incomprehensible, as they could not fit them into a more general conceptual framework of knowledge, which would allow overall understanding (Kirb, Short, Collins, Rugg, Kolbe, Howard, 1994; Kirby, 1995; UNAIDS 1997). It can be noted that the highly privileged group D refered to sex and sexuality more than the severely underprivileged group A. It was also evident that the severely underprivileged children generally used a much more limited lexical field than the others. This observation was evident in the questionnaire as well as in the analysis of the transcripts of work in sub-groups. This lexical limitation seemed to have interfered with establishing complex representations, and these pupils were not able to avoid reductive

At the end of the session, more children answered most of the open questions, and did so using more words. The lexical field concerning biomedical knowledge was of higher qualityRegarding modes of infection, we found the focus on vectors of infection decreased whereas attention tobehaviour increased. Before the sessions, more than half the children explained that contamination came from vectors, such as sex or drugs, but, after the session, they mainly referred to dangerous behaviour (sexuality, drug-addiction). Regarding protection, the study showed the interventions had had considerable impact. At the end of the sessions, only 8 children answered that you cannot avoid catching AIDS. There was a 150 % increase in the number of children stating that "the condom protects you from HIV

These data have to be interpreted with precaution, because it is well known that there is no direct link between knowledge and behaviours (e.g., UNAIDS, 1997). In addition to the influence of socioeconomic status on children's representations, we observed an influence of age and gender. The representations of the 10- year-olds were more relevant than those of the 9- year-olds, who are still quite childish,. Researchers working on representations in children of different ages have made similar observations (BMA, 1997; UNAIDS 1997; Brown 1990). However, most authors found little difference between girls and boys (du Guerny &Sjoberg, 1993; Guthrie, Wallace, Doerr, Janz, Schottenfeld, Selig, 1996; Prah

The study also investigated communication about AIDS. People with whom pupils speak about AIDS were mainly their families and peers. Nevertheless, in the second questionnaire, only 1 % to 4 % of them stated that they had never heard their friends talking about AIDS. In a study performed with primary school children (11-yearsold), Anochie and Ikpeme (2003) found that friends were not an important source of information for pupils (4 %). It is not easy to interpret this statement, as, in question 3, 44% of the same children stated that they have talked about AIDS with other children. Perhaps this contrast indicates that other pupils are not considered to be a worthy source of information, bu comparison to other sources, which they see as more knowledgeable. It is highly likely that the children hear more about AIDS through the media than from their friends, which caused them to underestimate the importance of the information they got from their peers. Moreover, the children appear to have discounted this information as not being serious and, therefore, not worth mentioning, in comparison with information given by experts on the TV, 'which tells the truth.' This interpretation also proved to be valid with the analysis of the work done in the sub-groups

infection" and three times more children spoke about protective behaviour.

over-simplification.

Rugger, 2004; UNAIDS, 2004).

of the study.

In order to know whether an individual may have been infected, more than half the children suggested active solutions, such as, having a test, or going to see a doctor. Fifteen percent suggested passive solutions, waiting for the symptoms to appear, or waiting till you feel ill. The girls suggested fewer active solutions than the boys (*p*.=0.013), and the severely underprivileged children fewer than the highly privileged (*p.*=0.049). After the intervention, reference to detection increased considerably (*p* =0.002), and there was less mention of adopting a passive stance or waiting for symptoms to appear (*p* =0.016).

Prior to the intervention, 68 % of the children suggested the condom as a way to be protected, and this percentage increased to 91% afterwards. The intervention mainly gave rise to a considerable increase in references to condoms, protection, and avoidance. There were no statistically significant difference related to age, sex, or social status in this increase.

#### **3.9 Relationship with affected people**

One out of two children had heard of someone who had or had had AIDS, both before and after the intervention. Only one in ten had heard of it through a channel other than television. Before the intervention, 64% of the children thought it was dangerous to live with an HIV positive person. Twenty-nine percent continued to think so, even after the intervention, but there was a significant change in the way infected people are seen and in the perception of the absence of risk of infection in everyday life.

#### **4. Discussion**

The aim of our study was to identify the initial representations of pupils on AIDS/HIV and to analyse the impact of an educational programme based on regular teacher's activities and interventions of health educators on these representations, on communication about AIDS/HIV, and on the way in which infected people are seen. The main novel features of our study were its target (young pupils aged 9 and 10), the close partnership between teachers and health educators, the involvement of parents, and the fact that it was based on a learner-centred model (the allosteric model as described by Giordan, 1995). First, we are going to discuss the relevance of such a research design and, secondly, we will analyse the pupils' initial representations on AIDS/HIV and the impact of the program. Finally, the issue of communication about AIDS in the family and with peers will be addressed.

The main characteristic of collaborative research is the close involvement of the target population in the development and management of the program, or, in other words, the proximity between researchers and actors (Martinand, 2003; Merini, 2005). It also aims at an improvement of practices here and now. Our study shows the interest of such a design in AIDS/HIV prevention. Indeed, the actors (teachers, parents, doctors, nurses etc.) were highly involved in the programme throughout the two years it took place. The intervention was conducted in a coherent manner in relateion to the educational environment of the pupils. In addition, the design lead us to take into account the ethical issues linked to preventive intervention (respect for people, cultures, family upbringing etc.) Nevertheless, we must also underline the limits of such a design. It was time consuming and the involvement of the severely under-privileged group was lower than that of the other groups.

As described in previous studies (e.g., Anochie & Ikpeme, 2003), the analysis of the initial questionnaires indicated that 9- and 10-year-old children did have representations of the HIV pandemic, the people affected, and the modes of infection and protection, but they had incomplete information on the subject. More than half of the pupils associated AIDS with a

In order to know whether an individual may have been infected, more than half the children suggested active solutions, such as, having a test, or going to see a doctor. Fifteen percent suggested passive solutions, waiting for the symptoms to appear, or waiting till you feel ill. The girls suggested fewer active solutions than the boys (*p*.=0.013), and the severely underprivileged children fewer than the highly privileged (*p.*=0.049). After the intervention, reference to detection increased considerably (*p* =0.002), and there was less mention of

Prior to the intervention, 68 % of the children suggested the condom as a way to be protected, and this percentage increased to 91% afterwards. The intervention mainly gave rise to a considerable increase in references to condoms, protection, and avoidance. There were no statistically significant difference related to age, sex, or social status in this increase.

One out of two children had heard of someone who had or had had AIDS, both before and after the intervention. Only one in ten had heard of it through a channel other than television. Before the intervention, 64% of the children thought it was dangerous to live with an HIV positive person. Twenty-nine percent continued to think so, even after the intervention, but there was a significant change in the way infected people are seen and in

The aim of our study was to identify the initial representations of pupils on AIDS/HIV and to analyse the impact of an educational programme based on regular teacher's activities and interventions of health educators on these representations, on communication about AIDS/HIV, and on the way in which infected people are seen. The main novel features of our study were its target (young pupils aged 9 and 10), the close partnership between teachers and health educators, the involvement of parents, and the fact that it was based on a learner-centred model (the allosteric model as described by Giordan, 1995). First, we are going to discuss the relevance of such a research design and, secondly, we will analyse the pupils' initial representations on AIDS/HIV and the impact of the program. Finally, the

issue of communication about AIDS in the family and with peers will be addressed.

severely under-privileged group was lower than that of the other groups.

The main characteristic of collaborative research is the close involvement of the target population in the development and management of the program, or, in other words, the proximity between researchers and actors (Martinand, 2003; Merini, 2005). It also aims at an improvement of practices here and now. Our study shows the interest of such a design in AIDS/HIV prevention. Indeed, the actors (teachers, parents, doctors, nurses etc.) were highly involved in the programme throughout the two years it took place. The intervention was conducted in a coherent manner in relateion to the educational environment of the pupils. In addition, the design lead us to take into account the ethical issues linked to preventive intervention (respect for people, cultures, family upbringing etc.) Nevertheless, we must also underline the limits of such a design. It was time consuming and the involvement of the

As described in previous studies (e.g., Anochie & Ikpeme, 2003), the analysis of the initial questionnaires indicated that 9- and 10-year-old children did have representations of the HIV pandemic, the people affected, and the modes of infection and protection, but they had incomplete information on the subject. More than half of the pupils associated AIDS with a

adopting a passive stance or waiting for symptoms to appear (*p* =0.016).

the perception of the absence of risk of infection in everyday life.

**3.9 Relationship with affected people** 

**4. Discussion** 

fatal illness as serious as, or more serious than cancer, transmitted by 'sex,' and 'caught' especially by adolescents and adults. They thought the illness could be avoided by putting on a condom (68 %), and detected by 'tests' or going to 'see a doctor' (80%). The content of their scientific statements was still at times completely or partially incomprehensible, as they could not fit them into a more general conceptual framework of knowledge, which would allow overall understanding (Kirb, Short, Collins, Rugg, Kolbe, Howard, 1994; Kirby, 1995; UNAIDS 1997). It can be noted that the highly privileged group D refered to sex and sexuality more than the severely underprivileged group A. It was also evident that the severely underprivileged children generally used a much more limited lexical field than the others. This observation was evident in the questionnaire as well as in the analysis of the transcripts of work in sub-groups. This lexical limitation seemed to have interfered with establishing complex representations, and these pupils were not able to avoid reductive over-simplification.

At the end of the session, more children answered most of the open questions, and did so using more words. The lexical field concerning biomedical knowledge was of higher qualityRegarding modes of infection, we found the focus on vectors of infection decreased whereas attention tobehaviour increased. Before the sessions, more than half the children explained that contamination came from vectors, such as sex or drugs, but, after the session, they mainly referred to dangerous behaviour (sexuality, drug-addiction). Regarding protection, the study showed the interventions had had considerable impact. At the end of the sessions, only 8 children answered that you cannot avoid catching AIDS. There was a 150 % increase in the number of children stating that "the condom protects you from HIV infection" and three times more children spoke about protective behaviour.

These data have to be interpreted with precaution, because it is well known that there is no direct link between knowledge and behaviours (e.g., UNAIDS, 1997). In addition to the influence of socioeconomic status on children's representations, we observed an influence of age and gender. The representations of the 10- year-olds were more relevant than those of the 9- year-olds, who are still quite childish,. Researchers working on representations in children of different ages have made similar observations (BMA, 1997; UNAIDS 1997; Brown 1990). However, most authors found little difference between girls and boys (du Guerny &Sjoberg, 1993; Guthrie, Wallace, Doerr, Janz, Schottenfeld, Selig, 1996; Prah Rugger, 2004; UNAIDS, 2004).

The study also investigated communication about AIDS. People with whom pupils speak about AIDS were mainly their families and peers. Nevertheless, in the second questionnaire, only 1 % to 4 % of them stated that they had never heard their friends talking about AIDS. In a study performed with primary school children (11-yearsold), Anochie and Ikpeme (2003) found that friends were not an important source of information for pupils (4 %). It is not easy to interpret this statement, as, in question 3, 44% of the same children stated that they have talked about AIDS with other children. Perhaps this contrast indicates that other pupils are not considered to be a worthy source of information, bu comparison to other sources, which they see as more knowledgeable. It is highly likely that the children hear more about AIDS through the media than from their friends, which caused them to underestimate the importance of the information they got from their peers. Moreover, the children appear to have discounted this information as not being serious and, therefore, not worth mentioning, in comparison with information given by experts on the TV, 'which tells the truth.' This interpretation also proved to be valid with the analysis of the work done in the sub-groups of the study.

Is It Possible to Implement AIDS' Prevention in Primary School? 27

underlie science etc.) By providing an HIV/AIDS education programme, it is only possible to promote a comprehensive health approach (St Leger & Nutbeam, 1999), if the whole educational environment is involved, if the intervention is really learner-centred, if the programme is sufficiently open and does not aim at enforcing some form of behaviour, and if the ethical framework is clearly defined. Such an approach, to be effective, must take into account the complexity of health, and the factors which influence it, but also actual science education theory and practice. This last point is decisive as one of the most important difficulties in implementing relevant programs is, in addition to taking into account cultural and social diversity, the involvement of teachers and school staff (Ayo-Yusuf, 2001; Han &

SESSION 1 SESSION 2

90 % **School 38 %** <sup>+</sup> Family 33 % Doctor 2 % **Friends 4 % +** (the increase is only significant in the older group CM2)

46 % **Death : 26 % +** Sexuality : 11 % Protection behaviour

7 %

**++**

17% **Uncles, aunts, cousins 15 % +**

Media (TV radio)

Disease ou illness ? :

**Yes : 75 % No : 25 %** 

Parents 65 % Brothers and sisters

Responses Impact of gender, age or

influence

and A \*

**Yes : 76 % No : 24 %** <sup>+</sup> The impact of the

Yes : 98 % No : 2 % No gender, age or social influence

social status

Pupils in group D give more words about sex than C, B

No age or gender influence

interventions is not significant for the group A 49% but it is for the other's B 74 %\*,C79%\* and D 85%\*. No gender or age influence

No gender, age or social

Pupils in group A had spoken less about AIDS with their parents, uncles, aunts and cousins than

influence

The number of non responders is higher in the group of young pupils : CM1 (7 vs 2 %) \* The parents are less often cited by pupils in group A (8 %) than pupils in groups C (16 %)\* and D (14 %) \* No gender, age or social

Responses Impact of gender, age or

Yes : 92 % No : 8 % No gender, age or social influence

social status

The number of non responders is higher in the group of young pupils: CM1 / CM2 (19 vs 5 %) \* The parents are less often cited by pupils in group A than pupils in groups

Concerning the item « sexuality », boys outnumbered girls (12 vs

Pupils in group D give more words about sex than C, B and A \* No age influence

Pupils in group A (29 %) had spoken less about AIDS with adults than groups B50% C51 % and

Pupils in group A had spoken less about AIDS with theirs parents than

C\* and D \* No gender influence

7 %)\*

D\* 63 % No gender or age influence

group D \*

Yes 44 % No : 56 % No gender, age or social influence

Weiss, 2005).

**6. Annex** 

Have you already heard of AIDS ?

What does AIDS make you think of ? Write three words

Have you ever talked about AIDS with adults ?

with other children ?

if yes, with whom ?

**Communication about AIDS** 

**General representation of HIV/AIDS** 

If yes, where ? Media (TV radio) 88 % Family 25 % Doctor 7 % School 7 % Friends 1 %

> Disease ou illness ? : 42 % Death : 34 % Sexuality 9 % Protection behaviour 4 %

Yes : 51 % No : 49 %

Parents 65 % Brothers and sisters 14% Uncles, aunts,

About 62% of the children have talked about AIDS in their families before the intervention, whatever their age, sex, or social origin. In the second series, 76 % of them have talked about the subject with their families, either before the first session or between the two. But our intervention did not bring any significant increase in communication within the family in the severely underprivileged group. These data show how hard it is to get a family to talk about AIDS, particularly for the severely underprivileged, and raises the question of family communication in the field of health education. It is likely that the intervention triggered discussion in families where there was a readiness for this. Our analysis shows that more than 90% of the families of the underprivileged group were of foreign origin (North African and Turkish). Talking about sexuality, especially with boys, in a cultural framework that was profoundly steeped in tradition, meant adopting a new Western-style cultural position. Thus it was difficult to talk about such a private subject in the family. Their priority was apparently to not deny their origins, and to preserve their identity, so as not to be swallowed up by integration, which was experienced as culturally destructive. As a result, no standard model of intervention could be put forward because the cultural dimension was a significant variable in actions and their impact (Rosenthal, 1990; Tones & Tilford, 2001; WHO 1997, 2004a, 2004b). The whole community must really be involved when the intervention occurs in a multicultural environment.

The analysis of the interviews indicated that communication about AIDS in families and between friends was related to an external stimulus, generally the media (but sometimes school). Television news and special programmes made families react. Families who tackled the issue without any direct link with the media were only few and far between. When they did, it was more frequently to warn children about the risks of sex and drugs than to incorporate this into a more general discussion about exclusion, life, its risks and the management of these risk, or about sexuality and pleasure.

The cross analysis of the questions showed that when the question of the integrating an HIV positive person in different situations was raised, the attitude of children from families where AIDS was discussed was no different from that of children from backgrounds where it was not. So, it would seem that the family message did not focus on the integration of infected persons. Nor was it a message of exclusion. It was likely that the parents' message did not concern infected people. The reality of the infected person remained largely virtual. Information mainly came from the mass media and television, and contact with sufferers in their daily lives was rare.

## **5. Conclusion**

This study shows an evolution in the representations of pupils about HIV/AIDS. The intervention led them to build new representations that take more objective facts into account. These results are interesting but have to be discussed, as it is well known that there is no one to one link between knowledge and behaviour. The mere provision of knowledge is not enough if the aim is a relevant scientific education, but the educational process here includes helping children "to clarify their values in relation with themselves, health, healthinfluencing behaviours" (Downie et al., 1996). In addition, such an intervention makes it possible to talk much more about a much broader spectrum of themes related to health. In working on HIV/AIDS prevention and sexuality education, numerous other aspects of science education are tackled, and mainly the status of science in relation to everyday life (nature of science and scientific knowledge, application of science concepts, values that underlie science etc.) By providing an HIV/AIDS education programme, it is only possible to promote a comprehensive health approach (St Leger & Nutbeam, 1999), if the whole educational environment is involved, if the intervention is really learner-centred, if the programme is sufficiently open and does not aim at enforcing some form of behaviour, and if the ethical framework is clearly defined. Such an approach, to be effective, must take into account the complexity of health, and the factors which influence it, but also actual science education theory and practice. This last point is decisive as one of the most important difficulties in implementing relevant programs is, in addition to taking into account cultural and social diversity, the involvement of teachers and school staff (Ayo-Yusuf, 2001; Han & Weiss, 2005).

## **6. Annex**

26 Understanding HIV/AIDS Management and Care – Pandemic Approaches in the 21st Century

About 62% of the children have talked about AIDS in their families before the intervention, whatever their age, sex, or social origin. In the second series, 76 % of them have talked about the subject with their families, either before the first session or between the two. But our intervention did not bring any significant increase in communication within the family in the severely underprivileged group. These data show how hard it is to get a family to talk about AIDS, particularly for the severely underprivileged, and raises the question of family communication in the field of health education. It is likely that the intervention triggered discussion in families where there was a readiness for this. Our analysis shows that more than 90% of the families of the underprivileged group were of foreign origin (North African and Turkish). Talking about sexuality, especially with boys, in a cultural framework that was profoundly steeped in tradition, meant adopting a new Western-style cultural position. Thus it was difficult to talk about such a private subject in the family. Their priority was apparently to not deny their origins, and to preserve their identity, so as not to be swallowed up by integration, which was experienced as culturally destructive. As a result, no standard model of intervention could be put forward because the cultural dimension was a significant variable in actions and their impact (Rosenthal, 1990; Tones & Tilford, 2001; WHO 1997, 2004a, 2004b). The whole community must really be involved when the

The analysis of the interviews indicated that communication about AIDS in families and between friends was related to an external stimulus, generally the media (but sometimes school). Television news and special programmes made families react. Families who tackled the issue without any direct link with the media were only few and far between. When they did, it was more frequently to warn children about the risks of sex and drugs than to incorporate this into a more general discussion about exclusion, life, its risks and the

The cross analysis of the questions showed that when the question of the integrating an HIV positive person in different situations was raised, the attitude of children from families where AIDS was discussed was no different from that of children from backgrounds where it was not. So, it would seem that the family message did not focus on the integration of infected persons. Nor was it a message of exclusion. It was likely that the parents' message did not concern infected people. The reality of the infected person remained largely virtual. Information mainly came from the mass media and television, and contact with sufferers in

This study shows an evolution in the representations of pupils about HIV/AIDS. The intervention led them to build new representations that take more objective facts into account. These results are interesting but have to be discussed, as it is well known that there is no one to one link between knowledge and behaviour. The mere provision of knowledge is not enough if the aim is a relevant scientific education, but the educational process here includes helping children "to clarify their values in relation with themselves, health, healthinfluencing behaviours" (Downie et al., 1996). In addition, such an intervention makes it possible to talk much more about a much broader spectrum of themes related to health. In working on HIV/AIDS prevention and sexuality education, numerous other aspects of science education are tackled, and mainly the status of science in relation to everyday life (nature of science and scientific knowledge, application of science concepts, values that

intervention occurs in a multicultural environment.

management of these risk, or about sexuality and pleasure.

their daily lives was rare.

**5. Conclusion** 


Is It Possible to Implement AIDS' Prevention in Primary School? 29

**Behaviour (sexual intercourse, using drugs...) 59%+** Condition (illness, poverty...) 3% **God, evil, sin, fate** 

**Number of words used : 1.37 + Using condom : 91 %** 

**Teenagers : 32 % + Throughout life :** 

Childhood : 16 % **Adult : 2% +**  (Never : 0%)

Media : 87% Family : 6%

**Yes : 98% No: 2% +** No gender, age or social influence

influence.

influence

Yes 46% No 54% No gender, age or social influence

**Yes 71% No 29% +** No gender, age or social influence

**No 86% Yes 14% +** No gender, age or social influence

influence

No gender, age or social

No gender, age or social

No gender, age or social

**0%** 

**+**

Avoidance behaviour : 6 % Protection behaviour : 3 %

**40% +**

with older pupils (CM2) 90% than younger (CM1)

No gender difference

No gender, age or social

No gender, age or social

No social, age or gender

Table 1. Analysis of the responses to the questionnaire. The pupils had to fill it in before session 1 and before session 2. The results are shown as follows. Closed questions: results are expressed as percentages of the total number of questionnaires taken into account in the analysis. Open questions: the responses are put together in different items; results are expressed as percentages of the total number of questionnaires including a response to the concerned question (data are given in the table only if the items are cited in more than 5 % of the cases in session 1 or 2). For multiple choice questions, the total percentage could exceed 100 because children were allowed to give more than one answer. When a significant impact of gender, age or social status on the responses is observed, it is indicated in the table. When a significant difference was observed between second and first session, the data are in bold print. CM1: young group (age 9), CM2 old group (age 10), A : severely under-privileged B : relatively under-privileged C : quite privileged, and D : highly privileged. Statistical significance : Impact of sex, age or social status on responses in session 1 or session 2 : \* p <

76%

Yes : 90% No: 10% No gender, age or social influence

influence

influence

Yes 47% No : 56 % No gender, age or social influence

incidence

Yes 36% No 64 % No gender, age or social influence

No : 59% Yes 41% No gender, age or social influence

0.05. difference between session 2 and session 1 : + p < 0.05.

Behaviour (sexual intercourse, using drugs...) 28% Condition (illness, poverty...) 6% God, evil, sin, fate

Number of words used : 1.05 Using condom :

Teenagers : 45 % Throughout life :

Childhood : 15 % Adult : 9 % (Never : 1%)

Family: 11%

5%

68% Avoidance behaviour : 11 % Protection behaviour : 5 %

24%

Is AIDS an illness we can avoid?

How can you protect yourself? 3 words

At what age can you get Aids ?

**Life with affected people**  Have you heard of anyone with AIDS?

If yes, where? Media 81%

Can you live with someone with AIDS without any risk for yourself?

Is there a risk for me if a classmate is HIV positive?


**Friends 65 % +** groups B, C and D \*

A\*.

**Yes 76 % No 24 % +** There is an influence of

E\*

Yes 67% No 33% No gender, age or social influence

**Yes 65 % No 35 % +** No gender, age or social influence

Disease 44% Microbe 36 % Vector 20 %

Someone who is sick (AIDS) 49% **Someone who has the HIV virus but is not sick 51 % + Someone with serious disease having no link with** 

**Active solutions 93% Passive solutions 7%** 

**no children said there is no way to know if you are HIV** 

**97 % of the pupils consider AIDS as a transmissive disease** 

**Number of words per pupil = 1.72 + Things (sperm, secretions, drugs)** 

**Aids 0%** 

**positive** 

**+** 

**+**

**36 % +**

The increase in family communication is better in the higher social group. There is no change in group

No gender or age influence

social status on the impact of the training session : the increase in communication is limited to groups C, D and

No gender or age influence

Large number of nonresponders (47% of children asking yes to the previous question) No gender, age or

Large number of nonresponders (40% of children asking yes to the previous question) There are more responses concerning the virus in the older group (CM2) 36% than in the younger one (CM1) 15% \* No social or gender difference

Girls suggested fewer active solutions than boys \* Group A suggest fewer active solutions than the others group\*

No gender, age or social

No gender, age or social

influence

influence

social influence

No gender or age influence

Yes 62 % No 38 % No gender, age or social influence

Yes 65% No 35% No social, age or gender incidence

microbe.\*

Yes 35 % No 65 % Girls says yes more often

Large number of nonresponders (32% of children asking yes to the previous question) There is a gender difference, girls link "virus" with illness and boys with

No social or age incidence

then boys (41% vs 28%)\* No social or age incidence

Difference with group A (72%) who suggest fewer active solutions than B 81%, C 78%, D 87%\* No gender or age influence

No gender, age or social

Pupils in group D give more words about sex 66% , than C 55%, B 55%

There are more responses

influence

and A 28%\*

Large number of nonresponders (63% of children asking yes to the previous question) Pupils in group A had spoken more about serious diseases without link with AIDS (A 33%, B 3%, C19%, D 9%)\*

cousins 10 % Friends 45 %

Disease 54% Microbe 31 % Vector 14%

Someone who is sick (AIDS) 52% Someone who has the HIV virus but is not sick 33 %, Someone with serious disease having no link with Aids 13%

Active solutions 80% Passive solutions 20% 7 children said there is no way to know if you are HIV positive

**Assessment of modes of infection and protection** 

88% of the pupils consider AIDS as a transmissive disease

Number of words per pupil = 1.28 Things (sperm, secretions, drugs)

58 %

Have you talked about AIDS in your family ?

Do you known what "Virus" means?

Can you explain what Virus means ?

Do you known what "HIV positive" means ?

Can you explain what means HIV positive means ?

How can we know if we are HIV positive ?

Is AIDS a transmissive illness?

If yes ? What gives you AIDS?

**Knowledge about HIV/AIDS** 


Table 1. Analysis of the responses to the questionnaire. The pupils had to fill it in before session 1 and before session 2. The results are shown as follows. Closed questions: results are expressed as percentages of the total number of questionnaires taken into account in the analysis. Open questions: the responses are put together in different items; results are expressed as percentages of the total number of questionnaires including a response to the concerned question (data are given in the table only if the items are cited in more than 5 % of the cases in session 1 or 2). For multiple choice questions, the total percentage could exceed 100 because children were allowed to give more than one answer. When a significant impact of gender, age or social status on the responses is observed, it is indicated in the table. When a significant difference was observed between second and first session, the data are in bold print. CM1: young group (age 9), CM2 old group (age 10), A : severely under-privileged B : relatively under-privileged C : quite privileged, and D : highly privileged. Statistical significance : Impact of sex, age or social status on responses in session 1 or session 2 : \* p < 0.05. difference between session 2 and session 1 : + p < 0.05.

Is It Possible to Implement AIDS' Prevention in Primary School? 31

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knowledge & beliefs about A.I.D.S.: observations from a pretest, *A.I.D.S. education* 

Boddy, D. (ed). *The Evidence of Health Promotion Effectiveness: Shaping Public Health in* 

enfants de CM2 d'Argenteuil. *Thesis for the C.E.S. de psychiatrie. U.E.R. de médecine* 

représentations des enseignants du primaire. *Santé Publique*, 14, 403-423 Kelly J. (1995). Advances in HIV/AIDS education and prevention. *Family Relations*. *44*, 345-

socioprofessionnelles; Liste des catégories socioprofessionnelles agrégées 2003. *La* 

Geneix, C. & Glanddier, P. Y. (2002). Education à la santé à l'école: pratiques et

to reduce sexual risk behaviors: A review of effectiveness. *Public Health Reports, 109*,

*face au SIDA de la recherche à l'action* A.N.R.S. Editor. Paris. 94-100.

health programs. *J Abnorm Child Psychol.* (33)6. 665-79.

*documentation Française.* Paris.

52.

339-60.

*Formation* (40).

Jodelet D. (1991). *Les représentations sociales*. Paris: PUF Editor.

and childbearing. *J. Sex. Res, 39(1)*, 51-7.

les collèges et les lycées BO n°27 du 17 février 2003

*UIMM Mai 2005* ADASE, Paris.

*Journal of Social Issues,25*, 220-39.

survey, *Pediatrics*. (92)3, 389-395.

*a New Europe*. European Union, Brussels.

*Broussais / Hôtel-Dieu*. Université Paris VI.

*& prevention. 4(3)*, 227-239.

*Research, 8*, 255-69.

## **7. Acknowledgments**

Author thank Rémi Collet, Didier Jourdan and Crane Rogers for there contribution to the research.

## **8. References**

Abric, J-C. (1997). *Pratiques sociales et représentations* (2nd edition). PUF. Paris.


Author thank Rémi Collet, Didier Jourdan and Crane Rogers for there contribution to the

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Berger D., Collet R., Laquet-Riffaud A., & JOURDAN D. (2003). Quelles représentations les

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Darroch J., & Silverman J. (1989). What public school teachers teach about preventing pregnancy, A.I.D.S. and S.T.D. *Family Planning Perspective, (21)2*, 65- 73. Des Jarlais D., Lyles C., Crepas N., & TREND group (2004). Improving the reporting quality

Doise W., & Mugny J.P. (1984). *Le développement social de l'intelligence*. Oxford: Pergamon

Downie R. S., Tannahill C., & Tannahill A. (2004). *Health promotion: Models and values* (2nd

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Ferron C., Feard S., Bon N., Spyckerelle Y., & Deschamps J-P. (1989). L'enfant et le SIDA, connaissance et représentation, *revue française de pédiatrie* (XXV), 195-209. Fischer G.N. (2001). *Les concepts fondamentaux de la psychologie sociale.* Paris: Dunod Editor. Giordan A. (1995). New models for the learning process: Beyond constructivism. *Prospects* 

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Development of an intervention for prevention of HIV/AIDS and other sexually transmitted diseases in adolescent females. *Public Health Nursing* (13), 318-30.

enfants ont-ils du SIDA ? Contribution d'une recherche-action en éducation pour la

of nonrandomized evaluations of behavioural and public health interventions: The

HIV/AIDS epidemic: Some possible considerations for policies and programmes.

Abric, J-C. (1997). *Pratiques sociales et représentations* (2nd edition). PUF. Paris.

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attitudes by grade level. *Journal of School Health. (60)6*, 270-275.

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*AIDS, 7,* 1027-34. 238 *Representatives of HIV/AIDS in Children*

*J. Am. Acad. Child adolesc. Psychiatry*. (29)3, 459-462.

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*sex education.* London: British Medical Association.

Bardin L. (1993). *L'analyse de contenus*, PUF, Paris.

edition). Oxford: Oxford Press.

**7. Acknowledgments** 

Press.

Editor Paris.

(XXV) 1.

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research.

**8. References** 


**3** 

*United States* 

**Social Determinants of HIV Health Care:** 

Rupali Kotwal Doshi, Carlos del Rio and Vincent C. Marconi *Emory University School of Medicine and Rollins School of Public Health* 

Despite unprecedented scale up and advances in the treatment of HIV/AIDS in the last fifteen years, the great majority of individuals around the world who need antiretroviral therapy (ART) are not receiving it. Furthermore, it has now become apparent that even in locations where there is access to treatment, segments of the population do not engage in care because of multiple barriers that prevent them from accessing care, thus losing the potential benefits of ART. A social ecological framework can be applied to understand the multiple layers of factors at the individual, interpersonal and structural levels, that affect HIV clinical outcomes and consequently transmission (Stokols 1996). The institutional barriers include those imposed by the very institutions developed to care for people with HIV. Beyond institutional barriers, factors related to poverty and economics, politics, and the sociocultural and psychological context of the individual all contribute to the challenges

Acknowledging the difficulties that HIV-infected individuals confront, the World Health Organization (WHO) has put forth the goal of universal access to HIV/AIDS prevention, treatment, and care (WHO 2010). In addition to improving the individual's personal health, access and treatment with subsequent virologic suppression on a population level may help decrease transmission of HIV (Das et al. 2010). Until a cure for HIV is found, individuals infected with HIV face a lifetime of requiring health care access and antiretroviral drug therapy to control the virus, in addition to the comorbidities associated with chronic HIV

For those able to enter and remain in care, additional obstacles can prevent them from maintaining high levels of adherence to the available therapies. In this chapter, we will explore how the sociocultural context of a particular region can influence health care outcomes for individuals living with HIV. First, we exemplify two epidemics and two health care systems separated geographically and culturally from one another, Atlanta, Georgia, United States, and Durban, KwaZulu-Natal, South Africa, in order to illustrate how these factors can impede a successful response to ART. Following this description, we describe efforts that have been undertaken to address some of these barriers to improve engagement in health care within and beyond these settings. We also review creative approaches that can be used to maximize adherence to treatment. Finally, a course for the ultimate way forward is chartered, detailing steps necessary to address these barriers in a variety of settings

**1. Introduction** 

infection.

around the world.

faced by people seeking treatment.

**A Tale of Two Cities** 


## **Social Determinants of HIV Health Care: A Tale of Two Cities**

Rupali Kotwal Doshi, Carlos del Rio and Vincent C. Marconi *Emory University School of Medicine and Rollins School of Public Health United States* 

## **1. Introduction**

32 Understanding HIV/AIDS Management and Care – Pandemic Approaches in the 21st Century

Tones K. & Tilford S. (2001). *Health Promotion effectiveness, efficiency and equity* (third edition).

UNAIDS (1997). Influence de l'éducation en matière de VIH et de santé sexuelle sur le

UNAIDS (2004). AIDS and girls education. Geneva VICTORIA C. G., HABICHT J. P., &

WHO. (1999), Preventing HIV/AIDS/STI and related discrimination an important

WHO. (2004a). Guide to Monitoring and Evaluating National HIV/AIDS Prevention

WHO. (2004b). Participatory Learning Activities from the EI/WHO Training and Resources

BRYCE J. (2004). Evidence-based public health moving beyond randomized trials.

responsability of health promoting schools. *WHO information series on school health*.

Programmes for Young People - Addendum to the UNAIDS "*National AIDS* 

comportement sexuel des jeunes: un bilan actualisé. Geneva.

*Programmes: A Guide to Monitoring and Evaluation*". Geneva.

Manual on School Health and HIV and AIDS Prevention. Geneva.

Cheltanham: Nelson Thornes Editor.

*Am. J. Public Health.* (94) 400-405.

WHO. (1997). *Promoting health trough school.* Geneva

WHO Editor Geneva.

Despite unprecedented scale up and advances in the treatment of HIV/AIDS in the last fifteen years, the great majority of individuals around the world who need antiretroviral therapy (ART) are not receiving it. Furthermore, it has now become apparent that even in locations where there is access to treatment, segments of the population do not engage in care because of multiple barriers that prevent them from accessing care, thus losing the potential benefits of ART. A social ecological framework can be applied to understand the multiple layers of factors at the individual, interpersonal and structural levels, that affect HIV clinical outcomes and consequently transmission (Stokols 1996). The institutional barriers include those imposed by the very institutions developed to care for people with HIV. Beyond institutional barriers, factors related to poverty and economics, politics, and the sociocultural and psychological context of the individual all contribute to the challenges faced by people seeking treatment.

Acknowledging the difficulties that HIV-infected individuals confront, the World Health Organization (WHO) has put forth the goal of universal access to HIV/AIDS prevention, treatment, and care (WHO 2010). In addition to improving the individual's personal health, access and treatment with subsequent virologic suppression on a population level may help decrease transmission of HIV (Das et al. 2010). Until a cure for HIV is found, individuals infected with HIV face a lifetime of requiring health care access and antiretroviral drug therapy to control the virus, in addition to the comorbidities associated with chronic HIV infection.

For those able to enter and remain in care, additional obstacles can prevent them from maintaining high levels of adherence to the available therapies. In this chapter, we will explore how the sociocultural context of a particular region can influence health care outcomes for individuals living with HIV. First, we exemplify two epidemics and two health care systems separated geographically and culturally from one another, Atlanta, Georgia, United States, and Durban, KwaZulu-Natal, South Africa, in order to illustrate how these factors can impede a successful response to ART. Following this description, we describe efforts that have been undertaken to address some of these barriers to improve engagement in health care within and beyond these settings. We also review creative approaches that can be used to maximize adherence to treatment. Finally, a course for the ultimate way forward is chartered, detailing steps necessary to address these barriers in a variety of settings around the world.

Social Determinants of HIV Health Care: A Tale of Two Cities 35

reported prevalence rate of AIDS, and a substantial proportion of HIV cases in this region is diagnosed in Atlanta. The same factors that contribute to high rates of infection and advanced disease in this region also lead to poor entry and retention in care. These factors include poverty (9th most poor state in US), inadequate education (8th worst high school graduation rate in the US), substance abuse, poor access to health care, food insufficiency (Kalichman et al. 2010), and child sex trade (Longerbeam 2010). In Atlanta, crack cocaine use and homelessness impact transmission of HIV, but there is also significant transmission

It is important to point out that while 78% of HIV (non-AIDS) cases and 75% of AIDS cases diagnosed in 2008 in Georgia were among Blacks, they make up only 30% of the state population (Mangla and Gant 2008). Among cases of HIV/AIDS diagnosed in Georgia in 2008, about half (53%) occurred between the ages of 30 and 49, one quarter (28%) between ages 20 and 29, and 14% among people 50 years of age of older (Mangla

The Atlanta eligible metropolitan area (EMA) is a 20-county region designated by the US Department of Health and Human Services (DHHS) Health Resources and Services Administration (HRSA) to receive federal funding through the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. As of the end of 2009, a total of 26,546 persons were living with HIV/AIDS in the 20-county Atlanta EMA; of these, 15,548 were AIDS cases and 10,998 are HIV-infected but do not yet have AIDS (eHARS Reporting System 2010). The racial distribution is 68% among blacks and 24% among whites (eHARS Reporting System 2010). The majority of cases are among men, and the main risk factor for transmission is MSM (46%), followed by heterosexual contact (8.4%), injection drug use (7.3%) (eHARS

Within the city of Atlanta, HIV is largely concentrated in one large cluster located in downtown and southwest Atlanta that consists of 157 census tracts and covers about 180 square miles. The cluster contains 60% of prevalent HIV/AIDS cases in the Atlanta MSA, and the HIV prevalence within the cluster is 1.34% compared to 0.32% outside the cluster (Hixson et al. 2011). Thus, as a whole, the city of Atlanta has a "generalized epidemic" with

Durban (eThekwini), located on the eastern coast of the Republic of South Africa, is the largest city in the province of KwaZulu-Natal (KZN). A well-known tourist destination for South Africans and international travelers, Durban is the third largest city in the Republic and one of the busiest seaports in the southern hemisphere. Durban has a population of nearly 3,500,000 including nearby townships. A very culturally diverse community, Durban's population is 68% black African, 20% Asian (one of the largest Indian populations outside of India and largest Asian community on the African continent), 9% white, and 3% coloured. Manufacturing, tourism, finance and transport are the major industrial sectors in the city. A recent principal host city for the 2010 Fédération Internationale de Football Association World Cup, eThekwini boasts the highest credit rating in Africa for a

among heterosexuals and men who have sex with men (MSM).

and Gant 2008).

Reporting System 2010).

**3.1 The city of gold** 

municipality in September 2004.

an HIV prevalence of >1% (see Figure 1).

**3. Durban, KwaZulu-Natal, South Africa** 

### **2. Atlanta, Georgia, USA**

#### **2.1 The city too busy to hate**

Atlanta is located in the northwest corner of the state of Georgia, which is in the southeastern region of the US. Atlanta was incorporated in 1847 and began as a railroad hub, connecting multiple cities across the US. During the American Civil War (1861-1865), the city was set on fire, destroying a large percentage of its infrastructure. In the years following the Civil War, the city was rebuilt gradually, with the intention to create a modern city that was less reliant on agriculture than previously. For example, the Georgia Institute of Technology, a prominent science and engineering university, was founded in 1885 in order to advance these goals (*The New Georgia Encyclopedia*). In addition, two historically black colleges, Spellman College (for women) and Morehouse College (for men) were established soon after the Civil War.

As the population of Atlanta expanded significantly in the wake of the Civil War, tensions between blacks and whites grew, and Jim Crow laws supporting segregation of the races in housing, school, and socialization began to take effect. In 1906, on the backdrop of Georgia's gubernatorial race which highlighted racial segregation and after newspapers reported 4 incidents of alleged sexual abuse of white women by black men, Atlanta's first documented race riot occurred. The death toll for the event was approximately 25 to 40 African-Americans and 2 whites. After 3 days of fighting, city officials, prominent clergy, and newspapers proposed an end to the violence. White and black community and business leaders came together to support racial reconciliation, in order to protect Atlanta's image as a "thriving New South City." As a result of these efforts, Atlanta did not feature as a major city for civil rights infringement during the riots in the 1960s throughout the south. Furthermore, Atlanta has a strong historical connection with the Civil Rights movement of the mid-twentieth century, because Martin Luther King, Jr., preached at the Ebenezer Baptist Church, located in downtown Atlanta, and the city was seen as a major organizing center for students and other civil rights leaders (*The New Georgia Encyclopedia*).

Atlanta currently has a population of approximately 500,000 within the city limits, and 5 million in the entire metropolitan statistical area (MSA), which includes 31 counties. The racial makeup of the city is approximately 50% African-American, 43% Caucasian, 13% Asian, and 5% Hispanic. In comparison, as of 2009 the state of Georgia's population was estimated to be 9.8 million, consisting of 65% white and 30% black (*United States Census*).

Atlanta's population has grown considerably after the opening of Hartsfield-Jackson International Airport in 1980 (which is one of the busiest in the US) (Yee 2007) and the hosting of the Summer Olympics in 1996. Twenty percent of the population lives below the poverty level. Major industries in Atlanta include professional and administrative services, waste management, education, arts, and food services (*United States Census*). Savannah, located on the Atlantic Ocean, is the second largest port eastern seaboard of the US and serves as a major hub for international shipping. Much of this traffic moves through Atlanta as it passes on to other cities throughout the country. Atlanta has a confluence of racial and ethnic diversity, industry, high-quality colleges and universities, and trade that give it a uniquely metropolitan feel in this region.

#### **2.2 HIV Epidemic in Atlanta and the southeastern U.S.**

According to surveillance statistics for HIV/AIDS, the southeast has been among the most significantly affected regions in the US since 2005. Georgia ranked 8th in the nation for its

Atlanta is located in the northwest corner of the state of Georgia, which is in the southeastern region of the US. Atlanta was incorporated in 1847 and began as a railroad hub, connecting multiple cities across the US. During the American Civil War (1861-1865), the city was set on fire, destroying a large percentage of its infrastructure. In the years following the Civil War, the city was rebuilt gradually, with the intention to create a modern city that was less reliant on agriculture than previously. For example, the Georgia Institute of Technology, a prominent science and engineering university, was founded in 1885 in order to advance these goals (*The New Georgia Encyclopedia*). In addition, two historically black colleges, Spellman College (for women) and Morehouse College (for men) were

As the population of Atlanta expanded significantly in the wake of the Civil War, tensions between blacks and whites grew, and Jim Crow laws supporting segregation of the races in housing, school, and socialization began to take effect. In 1906, on the backdrop of Georgia's gubernatorial race which highlighted racial segregation and after newspapers reported 4 incidents of alleged sexual abuse of white women by black men, Atlanta's first documented race riot occurred. The death toll for the event was approximately 25 to 40 African-Americans and 2 whites. After 3 days of fighting, city officials, prominent clergy, and newspapers proposed an end to the violence. White and black community and business leaders came together to support racial reconciliation, in order to protect Atlanta's image as a "thriving New South City." As a result of these efforts, Atlanta did not feature as a major city for civil rights infringement during the riots in the 1960s throughout the south. Furthermore, Atlanta has a strong historical connection with the Civil Rights movement of the mid-twentieth century, because Martin Luther King, Jr., preached at the Ebenezer Baptist Church, located in downtown Atlanta, and the city was seen as a major organizing

center for students and other civil rights leaders (*The New Georgia Encyclopedia*).

Atlanta currently has a population of approximately 500,000 within the city limits, and 5 million in the entire metropolitan statistical area (MSA), which includes 31 counties. The racial makeup of the city is approximately 50% African-American, 43% Caucasian, 13% Asian, and 5% Hispanic. In comparison, as of 2009 the state of Georgia's population was estimated to be 9.8 million, consisting of 65% white and 30% black (*United States Census*). Atlanta's population has grown considerably after the opening of Hartsfield-Jackson International Airport in 1980 (which is one of the busiest in the US) (Yee 2007) and the hosting of the Summer Olympics in 1996. Twenty percent of the population lives below the poverty level. Major industries in Atlanta include professional and administrative services, waste management, education, arts, and food services (*United States Census*). Savannah, located on the Atlantic Ocean, is the second largest port eastern seaboard of the US and serves as a major hub for international shipping. Much of this traffic moves through Atlanta as it passes on to other cities throughout the country. Atlanta has a confluence of racial and ethnic diversity, industry, high-quality colleges and universities, and trade that give it a

According to surveillance statistics for HIV/AIDS, the southeast has been among the most significantly affected regions in the US since 2005. Georgia ranked 8th in the nation for its

**2. Atlanta, Georgia, USA 2.1 The city too busy to hate** 

established soon after the Civil War.

uniquely metropolitan feel in this region.

**2.2 HIV Epidemic in Atlanta and the southeastern U.S.** 

reported prevalence rate of AIDS, and a substantial proportion of HIV cases in this region is diagnosed in Atlanta. The same factors that contribute to high rates of infection and advanced disease in this region also lead to poor entry and retention in care. These factors include poverty (9th most poor state in US), inadequate education (8th worst high school graduation rate in the US), substance abuse, poor access to health care, food insufficiency (Kalichman et al. 2010), and child sex trade (Longerbeam 2010). In Atlanta, crack cocaine use and homelessness impact transmission of HIV, but there is also significant transmission among heterosexuals and men who have sex with men (MSM).

It is important to point out that while 78% of HIV (non-AIDS) cases and 75% of AIDS cases diagnosed in 2008 in Georgia were among Blacks, they make up only 30% of the state population (Mangla and Gant 2008). Among cases of HIV/AIDS diagnosed in Georgia in 2008, about half (53%) occurred between the ages of 30 and 49, one quarter (28%) between ages 20 and 29, and 14% among people 50 years of age of older (Mangla and Gant 2008).

The Atlanta eligible metropolitan area (EMA) is a 20-county region designated by the US Department of Health and Human Services (DHHS) Health Resources and Services Administration (HRSA) to receive federal funding through the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. As of the end of 2009, a total of 26,546 persons were living with HIV/AIDS in the 20-county Atlanta EMA; of these, 15,548 were AIDS cases and 10,998 are HIV-infected but do not yet have AIDS (eHARS Reporting System 2010). The racial distribution is 68% among blacks and 24% among whites (eHARS Reporting System 2010). The majority of cases are among men, and the main risk factor for transmission is MSM (46%), followed by heterosexual contact (8.4%), injection drug use (7.3%) (eHARS Reporting System 2010).

Within the city of Atlanta, HIV is largely concentrated in one large cluster located in downtown and southwest Atlanta that consists of 157 census tracts and covers about 180 square miles. The cluster contains 60% of prevalent HIV/AIDS cases in the Atlanta MSA, and the HIV prevalence within the cluster is 1.34% compared to 0.32% outside the cluster (Hixson et al. 2011). Thus, as a whole, the city of Atlanta has a "generalized epidemic" with an HIV prevalence of >1% (see Figure 1).

## **3. Durban, KwaZulu-Natal, South Africa**

## **3.1 The city of gold**

Durban (eThekwini), located on the eastern coast of the Republic of South Africa, is the largest city in the province of KwaZulu-Natal (KZN). A well-known tourist destination for South Africans and international travelers, Durban is the third largest city in the Republic and one of the busiest seaports in the southern hemisphere. Durban has a population of nearly 3,500,000 including nearby townships. A very culturally diverse community, Durban's population is 68% black African, 20% Asian (one of the largest Indian populations outside of India and largest Asian community on the African continent), 9% white, and 3% coloured. Manufacturing, tourism, finance and transport are the major industrial sectors in the city. A recent principal host city for the 2010 Fédération Internationale de Football Association World Cup, eThekwini boasts the highest credit rating in Africa for a municipality in September 2004.

Social Determinants of HIV Health Care: A Tale of Two Cities 37

1923, the African National Congress was formed to peacefully lobby for equal rights for all races. Their efforts were largely unsuccessful, as segregation policies were consolidated under the right-wing National Party when it rose to power in 1948, which marked the official beginning of apartheid. Nelson Mandela, along with many leaders of the ANC, was arrested and imprisoned in 1964. Domestic and international pressure finally resulted in the demise of apartheid in 1990, and the first free elections were held in South Africa in 1994,

Students and staff from the University of Natal, founded in 1910 in Durban, actively protested apartheid policies. In 1950, the first medical school for black students in South Africa was established nearby, later named the Nelson Mandela School of Medicine. The University of Durban-Westville was created in the 1960s with the express intent of providing higher education for students of Indian origin. After the fall of apartheid, these universities merged to form the University of KwaZulu-Natal in 2004, which remains one of the premier academic institutions in South Africa. UKZN sponsors several prominent

Sub-Saharan Africa carries a disproportionate burden of HIV infections when compared to other regions in the world. Based on two national surveys published in 2008 and 2009, South Africa, and specifically the province of KwaZulu-Natal, are at the epicenter of the HIV epidemic with HIV prevalence estimates ranging from 15.8% among the general population over age 2 to 40% among women presenting to antenatal clinics (Health 2009; Shisana et al. 2009) (see Figure 2). With such a considerable prevalence, the odds of having a partner with

Fig. 2. HIV prevalence by district in South Africa, antenatal clinics, 2008 (Health 2009)

Durban

ushering in a new era with Mandela as president.

**3.2 HIV epidemic in Durban and KwaZulu-Natal** 

HIV/AIDS-related research programs that are ongoing today.

Fig. 1. HIV prevalence estimates for city of Atlanta and Fulton, DeKalb, Gwinnett, and Clayton counties, 2008 (Produced from Georgia Department of Public Health surveillance data)

The aboriginal population of KZN was believed to have settled in the area around 100,000 BC and was eventually overtaken by the Bantu expansion in 300 AD. Early exploration by the Portuguese began in the 15th century (Russell 1899). The Dutch and British later formed more lasting settlements on the coast. The peaceful relationship between the Kingdom of Shaka Zulu and the early British settlers was disrupted after tensions developed between colonists and native Africans (Bulpin 1977). This was followed by major conflicts known as the Anglo-Zulu (1879) and Anglo-Boer Wars (1880-1881 and 1899-1902). The colonizers suppressed and dominated the black South Africans (Shillington 2005).

During this period, a large population of indentured laborers was brought in from India to work in the sugar cane industry, along with black migrant workers from rural areas of KZN. In 1893 Mahatma Gandhi arrived in Durban to serve as a legal adviser for an Indian law firm. The widespread denial of civil liberties and political rights to Indian immigrants inspired his struggle for Indians' rights there and in India. By the end of the 19th century, industry, especially mining, used coercive tactics to maintain inexpensive black labor in the cities. Over time, this severely disrupted traditional family structures and eroded the rural agricultural economy of black South Africans, further increasing the income disparity (Coovadia et al. 2009).

Eventually, South Africa fell under British rule upon signing the peace treaty of Vereeniging in 1902. Following unification of the Boer and British colonies, several government policies were enacted to entrench white supremacy and racial segregation in South Africa. Racial classification with whites at the top resulted in social separation, political exclusion, economic marginalization, and racial injustices (Marks and Andersson 1987; WHO 1983). In

Fig. 1. HIV prevalence estimates for city of Atlanta and Fulton, DeKalb, Gwinnett, and Clayton counties, 2008 (Produced from Georgia Department of Public Health surveillance

suppressed and dominated the black South Africans (Shillington 2005).

The aboriginal population of KZN was believed to have settled in the area around 100,000 BC and was eventually overtaken by the Bantu expansion in 300 AD. Early exploration by the Portuguese began in the 15th century (Russell 1899). The Dutch and British later formed more lasting settlements on the coast. The peaceful relationship between the Kingdom of Shaka Zulu and the early British settlers was disrupted after tensions developed between colonists and native Africans (Bulpin 1977). This was followed by major conflicts known as the Anglo-Zulu (1879) and Anglo-Boer Wars (1880-1881 and 1899-1902). The colonizers

HIV Prevalence (%) > 3.0 1.3 - 3.0 0.6 - 1.3 0.3 - 0.6 0.1 - 0.3 <0.1

During this period, a large population of indentured laborers was brought in from India to work in the sugar cane industry, along with black migrant workers from rural areas of KZN. In 1893 Mahatma Gandhi arrived in Durban to serve as a legal adviser for an Indian law firm. The widespread denial of civil liberties and political rights to Indian immigrants inspired his struggle for Indians' rights there and in India. By the end of the 19th century, industry, especially mining, used coercive tactics to maintain inexpensive black labor in the cities. Over time, this severely disrupted traditional family structures and eroded the rural agricultural economy of black South Africans, further increasing the income disparity

Eventually, South Africa fell under British rule upon signing the peace treaty of Vereeniging in 1902. Following unification of the Boer and British colonies, several government policies were enacted to entrench white supremacy and racial segregation in South Africa. Racial classification with whites at the top resulted in social separation, political exclusion, economic marginalization, and racial injustices (Marks and Andersson 1987; WHO 1983). In

data)

Interstate highway 285 surrounds city of Atlanta

(Coovadia et al. 2009).

1923, the African National Congress was formed to peacefully lobby for equal rights for all races. Their efforts were largely unsuccessful, as segregation policies were consolidated under the right-wing National Party when it rose to power in 1948, which marked the official beginning of apartheid. Nelson Mandela, along with many leaders of the ANC, was arrested and imprisoned in 1964. Domestic and international pressure finally resulted in the demise of apartheid in 1990, and the first free elections were held in South Africa in 1994, ushering in a new era with Mandela as president.

Students and staff from the University of Natal, founded in 1910 in Durban, actively protested apartheid policies. In 1950, the first medical school for black students in South Africa was established nearby, later named the Nelson Mandela School of Medicine. The University of Durban-Westville was created in the 1960s with the express intent of providing higher education for students of Indian origin. After the fall of apartheid, these universities merged to form the University of KwaZulu-Natal in 2004, which remains one of the premier academic institutions in South Africa. UKZN sponsors several prominent HIV/AIDS-related research programs that are ongoing today.

#### **3.2 HIV epidemic in Durban and KwaZulu-Natal**

Sub-Saharan Africa carries a disproportionate burden of HIV infections when compared to other regions in the world. Based on two national surveys published in 2008 and 2009, South Africa, and specifically the province of KwaZulu-Natal, are at the epicenter of the HIV epidemic with HIV prevalence estimates ranging from 15.8% among the general population over age 2 to 40% among women presenting to antenatal clinics (Health 2009; Shisana et al. 2009) (see Figure 2). With such a considerable prevalence, the odds of having a partner with

Fig. 2. HIV prevalence by district in South Africa, antenatal clinics, 2008 (Health 2009)

Social Determinants of HIV Health Care: A Tale of Two Cities 39

have preferentially benefitted the rich, and this has further increased the overall income gap between the wealthy and the poor (Growth, employment and redistribution: a macroeconomic framework 1996). However, even when treatment is provided at minimal or no cost, the substantial cost and effort required to travel long distances (and take time away from childcare and subsistence living) becomes a tremendous barrier to regular clinic and

The seeds of the present weakened health care system were sown during the early days of colonization, and through the apartheid era and beyond, government policies further fragmented the health care system. (Coovadia et al. 2009). Traditional healers were marginalized, and health care training and delivery was racially segregated; these factors resulted in disparities in funding, and the doctor-patient ratio differed along racial lines (fewer black providers for more black patients). Similar human resource challenges exist for nursing, and this has been compounded by high rates of HIV infection among health care workers (Statistics 2007 2007; Shisana et al. 2004). The state overtook missionary hospitals that were crucial in the delivery of health care in rural areas and homelands. Also, the government contributes nearly 56% of the national health expenditure to public sector health care services, which treats 80-85% of the population. Conversely, the remaining 15- 20% of the population in private health care receive 44% of the national health care expenditure (McIntyre and Dorrington 1990; Goudge 1999). As the government encouraged providers to move to the private sector and removed funding to the public sector, this increased out-of-pocket expenses for poor patients, a significant barrier to care. There are also discrepancies in quality between the public and private systems (Dennison et al. 2007; Schneider et al. 2005; Palmer 1999). Altogether, these factors result in poor integration of services (especially tuberculosis diagnosis and treatment, mental health, and substance abuse counseling), overcrowding, long waiting lists, provider fatigue, and patient

Several aspects about the HIV epidemic in both of these cities make them uniquely comparable and allow the illustration of various important facets of engagement in care. Atlanta and Durban are both mid-sized cities in wealthy countries, yet both are experiencing an HIV epidemic out of proportion to the rest of their respective regions (Table 1). There are significant disparities of income and education in both cities, which provide some explanation for the high prevalence of HIV. A history of racism, substantial migrant and transient communities, cultural denialism of sexual practices, and a thriving commercial sex

**Atlanta MSA Durban & nearby townships** 

Heterosexual

trade may also contribute to the transmission of HIV in both cities.

(CDC 2009; Mangla and Gant 2008; Health 2009; Shisana et al. 2009)

Population 5.4 million 10.6 million % of population Black 50% 68%

HIV prevalence >1% 15.8% to 38.7% (KZN)

MSM Heterosexual, IDU

Table 1. Comparison of population and HIV prevalence of Atlanta and Durban as of 2008

pharmacy attendance.

dissatisfaction.

**4. Comparing Atlanta and Durban** 

Main risk factors for HIV

transmission

HIV are high, and this has overwhelmed current prevention efforts aimed at discordant couples. In addition to wealth and income disparities, various historical, cultural and political factors have directly and indirectly contributed to these substantial rates.

Until 1988, HIV in South Africa was largely restricted to the homosexual community and hemophiliacs who had received blood transfusions (Abdool Karim et al. 2009; Abdool Karim and Abdool Karim 2005). However, from that point onward, heterosexual transmission became the dominant mode of HIV transmission in South Africa. Using fear, stigma and risk profiling, the apartheid government added to pre-existing prejudices against homosexuals and blacks. After an initially slow introduction of HIV into the heterosexual community, the numbers of individuals with HIV infection grew exponentially from 1990 to 1994. HIV prevalence in pregnant women increased from 0.8% to 7.6% during this period (Ijsselmuiden et al. 1988; Gouws and Abdool Karim 2005). This contributed to a significant rise in the number of perinatal infections. By this time HIV finally became a government priority and condom distribution increased throughout the country.

In the subsequent five years, an even more rapid spread occurred throughout South Africa. In particular, certain areas of rural KZN experienced substantial increases. The main factors identified that fueled the epidemic included migrant laborers, who served as a bridge population between urban and rural community networks (Lurie, Williams, Zuma, Mkaya-Mwamburi, Garnett, Sweat, et al. 2003) and multiple, concurrent partnerships (rural wife and town wife). Also, rape and violence against women increased their susceptibility to HIV (Jochelson, Mothibeli, and Leger 1991; Lurie, Williams, Zuma, Mkaya-Mwamburi, Garnett, Sturm, et al. 2003; Hunter 2005; Wood, Maforah, and Jewkes 1998; Jewkes 2009; Dunkle et al. 2004). During this time, the Treatment Action Campaign was formed to combat the AIDS denialism that had been previously espoused by the government.

In 2003, ART was introduced into the public sector with funding from the US President's Emergency Plan for AIDS Relief (PEPFAR). It took over 5 years after PEPFAR was introduced in South Africa to see decreases in incidence rates, despite one of the largest ART rollouts in the world. Presently, life expectancy in KZN is nearly 50 years for women and 49 years for men (*Statistical Release P0302: Midyear population estimates*). In response to these overwhelming challenges, South Africa's HIV/AIDS and STI National Strategic Plan was launched in 2007 (*The HIV/AIDS Country Scorecard* 2008; HIV & AIDS and STI Strategic Plan for South Africa, 2007-2011 2007). The latest UNAIDS report has shown a sharp decline in the incidence among 18 year olds and women 15-24 years old by 2008 (UNAIDS report on the global AIDS epidemic 2010).

Bringing millions of individuals into care for chronic HIV infection has been a major challenge for South Africa. Despite a developed health care system (8.0% of GDP is spent on health care), the health care system is overwhelmed with the sheer number of individuals infected with HIV. With more than 5.6 million people infected with HIV in South Africa, it is estimated that only 36% of adults and 54% of children eligible for treatment (based upon current WHO criteria that includes CD4 T cells <350 cells/µL) are currently receiving it (Coovadia et al. 2009; UNAIDS report on the global AIDS epidemic 2010). In light of this, it has been no small feat to have over 970,000 individuals on ART.

Poverty in the black population created a general deterioration of health for black South Africans associated with high communicable diseases and violence-related injuries (Packard 1989). Today, over 50% of South Africans live in poverty, more than 40% experience food insecurity, and unemployment remains high (25%) (Rose and Charlton 2002; Ojikutu, Jack, and Ramjee 2007; *Statistical Release P0302: Midyear population estimates*). Government policies

HIV are high, and this has overwhelmed current prevention efforts aimed at discordant couples. In addition to wealth and income disparities, various historical, cultural and

Until 1988, HIV in South Africa was largely restricted to the homosexual community and hemophiliacs who had received blood transfusions (Abdool Karim et al. 2009; Abdool Karim and Abdool Karim 2005). However, from that point onward, heterosexual transmission became the dominant mode of HIV transmission in South Africa. Using fear, stigma and risk profiling, the apartheid government added to pre-existing prejudices against homosexuals and blacks. After an initially slow introduction of HIV into the heterosexual community, the numbers of individuals with HIV infection grew exponentially from 1990 to 1994. HIV prevalence in pregnant women increased from 0.8% to 7.6% during this period (Ijsselmuiden et al. 1988; Gouws and Abdool Karim 2005). This contributed to a significant rise in the number of perinatal infections. By this time HIV finally became a

In the subsequent five years, an even more rapid spread occurred throughout South Africa. In particular, certain areas of rural KZN experienced substantial increases. The main factors identified that fueled the epidemic included migrant laborers, who served as a bridge population between urban and rural community networks (Lurie, Williams, Zuma, Mkaya-Mwamburi, Garnett, Sweat, et al. 2003) and multiple, concurrent partnerships (rural wife and town wife). Also, rape and violence against women increased their susceptibility to HIV (Jochelson, Mothibeli, and Leger 1991; Lurie, Williams, Zuma, Mkaya-Mwamburi, Garnett, Sturm, et al. 2003; Hunter 2005; Wood, Maforah, and Jewkes 1998; Jewkes 2009; Dunkle et al. 2004). During this time, the Treatment Action Campaign was formed to combat the AIDS

In 2003, ART was introduced into the public sector with funding from the US President's Emergency Plan for AIDS Relief (PEPFAR). It took over 5 years after PEPFAR was introduced in South Africa to see decreases in incidence rates, despite one of the largest ART rollouts in the world. Presently, life expectancy in KZN is nearly 50 years for women and 49 years for men (*Statistical Release P0302: Midyear population estimates*). In response to these overwhelming challenges, South Africa's HIV/AIDS and STI National Strategic Plan was launched in 2007 (*The HIV/AIDS Country Scorecard* 2008; HIV & AIDS and STI Strategic Plan for South Africa, 2007-2011 2007). The latest UNAIDS report has shown a sharp decline in the incidence among 18 year olds and women 15-24 years old by 2008 (UNAIDS report on

Bringing millions of individuals into care for chronic HIV infection has been a major challenge for South Africa. Despite a developed health care system (8.0% of GDP is spent on health care), the health care system is overwhelmed with the sheer number of individuals infected with HIV. With more than 5.6 million people infected with HIV in South Africa, it is estimated that only 36% of adults and 54% of children eligible for treatment (based upon current WHO criteria that includes CD4 T cells <350 cells/µL) are currently receiving it (Coovadia et al. 2009; UNAIDS report on the global AIDS epidemic 2010). In light of this, it

Poverty in the black population created a general deterioration of health for black South Africans associated with high communicable diseases and violence-related injuries (Packard 1989). Today, over 50% of South Africans live in poverty, more than 40% experience food insecurity, and unemployment remains high (25%) (Rose and Charlton 2002; Ojikutu, Jack, and Ramjee 2007; *Statistical Release P0302: Midyear population estimates*). Government policies

political factors have directly and indirectly contributed to these substantial rates.

government priority and condom distribution increased throughout the country.

denialism that had been previously espoused by the government.

has been no small feat to have over 970,000 individuals on ART.

the global AIDS epidemic 2010).

have preferentially benefitted the rich, and this has further increased the overall income gap between the wealthy and the poor (Growth, employment and redistribution: a macroeconomic framework 1996). However, even when treatment is provided at minimal or no cost, the substantial cost and effort required to travel long distances (and take time away from childcare and subsistence living) becomes a tremendous barrier to regular clinic and pharmacy attendance.

The seeds of the present weakened health care system were sown during the early days of colonization, and through the apartheid era and beyond, government policies further fragmented the health care system. (Coovadia et al. 2009). Traditional healers were marginalized, and health care training and delivery was racially segregated; these factors resulted in disparities in funding, and the doctor-patient ratio differed along racial lines (fewer black providers for more black patients). Similar human resource challenges exist for nursing, and this has been compounded by high rates of HIV infection among health care workers (Statistics 2007 2007; Shisana et al. 2004). The state overtook missionary hospitals that were crucial in the delivery of health care in rural areas and homelands. Also, the government contributes nearly 56% of the national health expenditure to public sector health care services, which treats 80-85% of the population. Conversely, the remaining 15- 20% of the population in private health care receive 44% of the national health care expenditure (McIntyre and Dorrington 1990; Goudge 1999). As the government encouraged providers to move to the private sector and removed funding to the public sector, this increased out-of-pocket expenses for poor patients, a significant barrier to care. There are also discrepancies in quality between the public and private systems (Dennison et al. 2007; Schneider et al. 2005; Palmer 1999). Altogether, these factors result in poor integration of services (especially tuberculosis diagnosis and treatment, mental health, and substance abuse counseling), overcrowding, long waiting lists, provider fatigue, and patient dissatisfaction.

## **4. Comparing Atlanta and Durban**

Several aspects about the HIV epidemic in both of these cities make them uniquely comparable and allow the illustration of various important facets of engagement in care. Atlanta and Durban are both mid-sized cities in wealthy countries, yet both are experiencing an HIV epidemic out of proportion to the rest of their respective regions (Table 1). There are significant disparities of income and education in both cities, which provide some explanation for the high prevalence of HIV. A history of racism, substantial migrant and transient communities, cultural denialism of sexual practices, and a thriving commercial sex trade may also contribute to the transmission of HIV in both cities.


Table 1. Comparison of population and HIV prevalence of Atlanta and Durban as of 2008 (CDC 2009; Mangla and Gant 2008; Health 2009; Shisana et al. 2009)

Social Determinants of HIV Health Care: A Tale of Two Cities 41

access to medical care and antiretroviral therapy depends on the type of insurance they have, as well as their ability to navigate the system designated for them. Patients who are undocumented (without legal status in the US) rely on the safety nets that have been developed, although their obstacles are even greater than those with legal status. Atlanta is one of the cities in the US eligible for Ryan White part A funds that are directed to the most severely affected EMAs. To qualify for part A funding an EMA must have reported at least 2,000 AIDS cases in the most recent 5 years and have a population of at least 50,000. These Federal funds are then distributed to various sites in the Atlanta EMA by the Ryan White executive committee, which is made up of providers, legislators, patient representatives, and other community stakeholders. Clinical sites must apply each year to the Ryan White funding committee in order to renew their funding. The state-run AIDS Drugs Assistance Programs (ADAP) help to cover the cost of antiretroviral therapy as well as other commonly prescribed medications for HIV patients, but as of fall 2010, funding for the Georgia ADAP fell short of need and a waiting list was created (*HIV Care Program: AIDS Drug Assistance Program*). Individual pharmaceutical companies have now extended assistance for antiretroviral medications for eligible patients on the waiting list, but third-party payer assistance for medications remains one of the most significant hurdles for uninsured

The Infectious Diseases Program (IDP) at Grady Memorial Hospital treats 5,000 of the most advanced cases of HIV/AIDS in the Atlanta EMA annually, and it is one of the largest outpatient facilities for HIV-positive individuals in the US. For over twenty years, the IDP has provided integrated and comprehensive HIV health care with over 12 specialty and subspecialty services available on-site including hematology/oncology, neurology, hepatology, dental, ophthalmology, dermatology and metabolic disorders. All HIV-positive patients admitted to Grady Memorial Hospital are tracked by the Social Services department to ensure referral to the appropriate outpatient provider upon discharge and to provide support during hospitalization. Other local hospitals and providers can refer

IDP has made distinct efforts to retain patients in care. Certain populations, such as those who are substance abusers, homeless, and/or have a psychiatric illness were found to be at high risk for virologic failure and subsequent morbidity and mortality from HIV/AIDS. These patients have been targeted for participation in the Transition Center, an open-access part of IDP in which patients can arrive as a walk-in to see a medical or psychiatric provider, attend substance abuse group therapy visits, and see a nutritionist (Cohen et al. 2011). Patients who miss appointments at IDP are contacted by "Client Trackers" who reschedule appointments. Finally, a number of support groups and case management programs run by community-based organizations (*AID Atlanta*) are available for patients to discuss the issues that impact their lives and help patients participate in HIV primary care. Peer navigators, mental health counselors, nurses, and pharmacists all serve as part of the treatment team to guide patients through the health system and the process of self-care needed for HIV

Despite the substantial challenges facing patients and health care providers detailed above, there have been tremendous accomplishments in ART delivery and health outcomes. Many programs throughout the country have shown impressive rates of virologic suppression at

patients in care.

patients to IDP as well.

management.

**5.2 South Africa** 

Both cities are racially and culturally diverse, which may impede efforts to treat and prevent HIV transmission, and both have gone through changes in the laws and sociopolitical environment for black individuals through the past fifty years. Martin Luther King, Jr., recognized the connection between the struggles of African-Americans and black South Africans living under apartheid rule when he said,

*"In this period when the American Negro is giving moral leadership and inspiration to his own nation, he must find the resources to aid his suffering brothers in his ancestral homeland. Nor is this aid a one-way street. The civil rights movement in the United States has derived immense inspiration from the successful struggles of those Africans who have attained freedom in their own nations." (King 1965)* 

There are also some notable differences between the Atlanta and Durban. About two-thirds of the individuals living with HIV in Atlanta are African-American, but black South Africans comprise an overwhelming majority of individuals with HIV in Durban. HIV transmission in Atlanta occurs primarily through men having sex with men (51%), followed by heterosexual contact (22%), injection drug use, and other means. Transmission in Durban is primarily through heterosexual contact. Also in Atlanta, crack cocaine use contributes indirectly to the spread of HIV (Metsch et al. 2008), whereas in Durban, drug abuse is not a prominent risk factor. In the following three sections, we describe how various institutions, clinics and health care systems have identified ways to overcome barriers to HIV health care and methods to improve adherence to HIV treatment.

#### **5. Engaging in care: access, entry, and retention in clinical care**

Based on the social ecological framework, we have identified the three major areas impacting engagement in care are individual, interpersonal, and structural factors (Stokols 1996). Some individual factors that may limit engagement in care include personal health beliefs, substance abuse, homelessness, food insecurity, and competing life priorities. Interpersonal factors that may limit engagement in care include communication with physicians, experiences with health care staff, or the influences of social networks on health behaviors. Structural factors include institutional or systemic factors, economic, cultural and political factors. The lack of health insurance, changes in insurance status based on employment or fluctuations in income, complexity of the health system, and reduction in funding for safety net resources may all limit access, entry and retention into care.

At the political level, local and federal policy has played a pivotal role in the accessibility of HIV treatment. Even despite well-intended efforts, government policies can be complicated or ineffective at delivering or augmenting health care or fail to provide the necessary safeguards for individuals with private insurance. Although it took almost 10 years to enact, the Ryan White CARE Act finally passed in 1990 to provide a safety net of HIV/AIDS clinical care in the US (HRSA). In South Africa, HIV denialism at the highest levels of government, worked against efforts to provide care and reduce transmission, wasting valuable time which undoubtedly led to many unnecessary infections and deaths from HIV/AIDS (Chigwedere and Essex 2010).

#### **5.1 Atlanta**

In Atlanta, a patchwork of private providers, hospital clinics, and safety net providers such as Grady Memorial Hospital, the Atlanta Veterans Affairs Medical Center, and county health departments provide the clinical care for persons infected with HIV. An individual's

Both cities are racially and culturally diverse, which may impede efforts to treat and prevent HIV transmission, and both have gone through changes in the laws and sociopolitical environment for black individuals through the past fifty years. Martin Luther King, Jr., recognized the connection between the struggles of African-Americans and black South

*"In this period when the American Negro is giving moral leadership and inspiration to his own nation, he must find the resources to aid his suffering brothers in his ancestral homeland. Nor is this aid a one-way street. The civil rights movement in the United States has derived immense inspiration from the successful struggles of those Africans who have attained freedom in their own nations."* 

There are also some notable differences between the Atlanta and Durban. About two-thirds of the individuals living with HIV in Atlanta are African-American, but black South Africans comprise an overwhelming majority of individuals with HIV in Durban. HIV transmission in Atlanta occurs primarily through men having sex with men (51%), followed by heterosexual contact (22%), injection drug use, and other means. Transmission in Durban is primarily through heterosexual contact. Also in Atlanta, crack cocaine use contributes indirectly to the spread of HIV (Metsch et al. 2008), whereas in Durban, drug abuse is not a prominent risk factor. In the following three sections, we describe how various institutions, clinics and health care systems have identified ways to overcome barriers to HIV health care

Based on the social ecological framework, we have identified the three major areas impacting engagement in care are individual, interpersonal, and structural factors (Stokols 1996). Some individual factors that may limit engagement in care include personal health beliefs, substance abuse, homelessness, food insecurity, and competing life priorities. Interpersonal factors that may limit engagement in care include communication with physicians, experiences with health care staff, or the influences of social networks on health behaviors. Structural factors include institutional or systemic factors, economic, cultural and political factors. The lack of health insurance, changes in insurance status based on employment or fluctuations in income, complexity of the health system, and reduction in

At the political level, local and federal policy has played a pivotal role in the accessibility of HIV treatment. Even despite well-intended efforts, government policies can be complicated or ineffective at delivering or augmenting health care or fail to provide the necessary safeguards for individuals with private insurance. Although it took almost 10 years to enact, the Ryan White CARE Act finally passed in 1990 to provide a safety net of HIV/AIDS clinical care in the US (HRSA). In South Africa, HIV denialism at the highest levels of government, worked against efforts to provide care and reduce transmission, wasting valuable time which undoubtedly led to many unnecessary infections and deaths from

In Atlanta, a patchwork of private providers, hospital clinics, and safety net providers such as Grady Memorial Hospital, the Atlanta Veterans Affairs Medical Center, and county health departments provide the clinical care for persons infected with HIV. An individual's

Africans living under apartheid rule when he said,

and methods to improve adherence to HIV treatment.

HIV/AIDS (Chigwedere and Essex 2010).

**5.1 Atlanta** 

**5. Engaging in care: access, entry, and retention in clinical care** 

funding for safety net resources may all limit access, entry and retention into care.

*(King 1965)* 

access to medical care and antiretroviral therapy depends on the type of insurance they have, as well as their ability to navigate the system designated for them. Patients who are undocumented (without legal status in the US) rely on the safety nets that have been developed, although their obstacles are even greater than those with legal status. Atlanta is one of the cities in the US eligible for Ryan White part A funds that are directed to the most severely affected EMAs. To qualify for part A funding an EMA must have reported at least 2,000 AIDS cases in the most recent 5 years and have a population of at least 50,000. These Federal funds are then distributed to various sites in the Atlanta EMA by the Ryan White executive committee, which is made up of providers, legislators, patient representatives, and other community stakeholders. Clinical sites must apply each year to the Ryan White funding committee in order to renew their funding. The state-run AIDS Drugs Assistance Programs (ADAP) help to cover the cost of antiretroviral therapy as well as other commonly prescribed medications for HIV patients, but as of fall 2010, funding for the Georgia ADAP fell short of need and a waiting list was created (*HIV Care Program: AIDS Drug Assistance Program*). Individual pharmaceutical companies have now extended assistance for antiretroviral medications for eligible patients on the waiting list, but third-party payer assistance for medications remains one of the most significant hurdles for uninsured patients in care.

The Infectious Diseases Program (IDP) at Grady Memorial Hospital treats 5,000 of the most advanced cases of HIV/AIDS in the Atlanta EMA annually, and it is one of the largest outpatient facilities for HIV-positive individuals in the US. For over twenty years, the IDP has provided integrated and comprehensive HIV health care with over 12 specialty and subspecialty services available on-site including hematology/oncology, neurology, hepatology, dental, ophthalmology, dermatology and metabolic disorders. All HIV-positive patients admitted to Grady Memorial Hospital are tracked by the Social Services department to ensure referral to the appropriate outpatient provider upon discharge and to provide support during hospitalization. Other local hospitals and providers can refer patients to IDP as well.

IDP has made distinct efforts to retain patients in care. Certain populations, such as those who are substance abusers, homeless, and/or have a psychiatric illness were found to be at high risk for virologic failure and subsequent morbidity and mortality from HIV/AIDS. These patients have been targeted for participation in the Transition Center, an open-access part of IDP in which patients can arrive as a walk-in to see a medical or psychiatric provider, attend substance abuse group therapy visits, and see a nutritionist (Cohen et al. 2011). Patients who miss appointments at IDP are contacted by "Client Trackers" who reschedule appointments. Finally, a number of support groups and case management programs run by community-based organizations (*AID Atlanta*) are available for patients to discuss the issues that impact their lives and help patients participate in HIV primary care. Peer navigators, mental health counselors, nurses, and pharmacists all serve as part of the treatment team to guide patients through the health system and the process of self-care needed for HIV management.

#### **5.2 South Africa**

Despite the substantial challenges facing patients and health care providers detailed above, there have been tremendous accomplishments in ART delivery and health outcomes. Many programs throughout the country have shown impressive rates of virologic suppression at

Social Determinants of HIV Health Care: A Tale of Two Cities 43

Various health care systems and clinical settings have created structures to improve the ability of individuals to remain engaged in care. Some health care systems, such as those found in the US Department of Defense (DoD), US Department of Veterans Affairs (VA) and various European countries, have reduced or eliminated the out-of-pocket expenses for patients or have provided financial assistance through the involvement of integrated community-based organizations. In the absence of universal health care, some of the interventions include the use of patient navigators, such as those implemented in clinics across Haiti, comprehensive integrated care centers (the medical home), patient- and familyfocused care, optimal use of electronic medical records for tracking and process optimization, community-based specialty care, and interventions specifically targeting drug

In contrast to the US, Canada provides a universal health care system for all its residents that covers treatment of HIV. For example, in the province of British Columbia, health care and antiretroviral medications are provided free of charge. Almost as important as eliminating out-of-pocket expenses, this system has virtually eliminated the administrative barriers that accompany similar systems elsewhere when an individual moves in and out of various insurance programs. HIV-positive patients must register with the Drug Treatment Program (DTP) that is coordinated by the British Columbia Center for Excellence in HIV/AIDS. Despite the availability of free health care, investigators in Vancouver found that a significant number of HIV-positive individuals still do not use antiretroviral therapy, and that 40% of people who died from HIV-related causes never initiated ART (Joy et al. 2008). They also found that 16% of individuals waited until their CD4 cell count fell below 50 cells/µl to initiate ART (Joy et al. 2008). The findings in British Columbia demonstrate how access to care alone may not result in optimal health outcomes across all HIV-infected populations, and that multiple factors must be considered when designing interventions to improve health outcomes (Lima et al. 2010; *British Columbia Center for Excellence in* 

Most health care in the US is delivered by clinics and hospitals that are privately owned and operated (community-based, academic, corporate-owned) and a smaller percentage are government-based. Since the US is a mixed market system, the payer source is divided between self-pay (12.8%) and third party insurance (87.2%). Third party insurance includes public insurance (46.4% of the total as Medicare, Medicaid and government employee insurance) and private insurance (40.7% of the total) (CMS 2011). Some of the government employee programs such as those associated with the DoD and the VA provide universal access to care for their participants. When care is received at government facilities or other participating facilities, the individual has no (or minimal) out of pocket expenses and does not pay premiums or deductibles. Studies have shown that individuals with HIV in these programs have outcomes equivalent to those reported in clinical trials with high levels of adherence and virologic suppression, as well as low rates of hospitalization and mortality, even among individuals with other significant barriers to care (homelessness, poverty, drug

**5.3 Examples of universal health care systems** 

users or other vulnerable subpopulations.

**5.3.1 Vancouver** 

*HIV/AIDS*).

**5.3.2 Military and VA** 

six months (90-95%) and very low rates of loss to follow up (Boulle et al. 2008; Marconi et al. 2008). These outcomes have remained outstanding even after several years of treatment (Lawn et al. 2008; Rosen, Fox, and Gill 2007). For the small percentage of patients requiring second line therapy, a substantial percentage of patients were able to achieve virologic suppression thereafter (Fox et al. 2010; Murphy et al. 2010). Although encouraging, most of these reports have been from urban clinics with adequate resources to individually and programmatically monitor and manage the large volume of patients initiated on ART. Unfortunately, early data from rural sites with fewer resources have shown more discouraging outcomes (Mutevedzi et al. 2010). Suboptimal adherence to ART has been associated with virologic failure (Nachega et al. 2006; Bisson et al. 2008), drug resistance (Braithwaite et al. 2006), and death (Wood et al. 2002).

Although programmatic monitoring has been required to maintain funding support, it has simultaneously served as a mechanism to assist clinics in assessing, assuring and improving the care delivery processes and quality of the care provided. Some clinical sites have also been fitted with electronic medical records and other electronic systems to improve the workflow and immediate access to necessary data. Another effective systematic change has been the extensive use of counselors, peer navigators, HIV educators and nurses to deliver care for patients who are doing well on treatment, particularly in areas where physician resources are limited (Sanne et al. 2010; Abdool Karim et al. 2009). This approach, known as task shifting, along with down-referral (the decentralization of care to smaller clinics without physicians) has been one way to address the limited human resources relative to the demand (Long et al. 2011; Matovu et al. 2011; Sanne et al. 2010). This approach is consistent with the development of more community-based health centers to improve access, especially in rural areas. In addition to treatment monitoring of patients on a stable regimen, the role for nurse initiation and complete follow up management of patients on ART (NIM-ART) is being assessed in a randomized trial and is being discussed at a national level in order to expand treatment access (Colvin et al. 2010; Uebel et al. 2011; Fairall et al. 2011).

Another intervention being used to improve access and retention in care has been the fasttracking of patients in desperate need of starting ART (Geng et al. 2011). Similarly, ART initiation in the hospital after initial HIV diagnosis and/or a new opportunistic infection helps to reduce the barriers experienced when patients are discharged from the hospital. This is especially effective when combined with palliative care programs designed to address the multiple symptomatic complaints as well as psychosocial and spiritual needs of the patient. In a busy clinical program, these issues often get overlooked by providers and nurses which can erode trust in the health care team (Sunpath et al. 2011). In East Africa, programs with dedicated staff who use aggressive outreach (by using all available means of transportation) to search for patients within 30 days of a missed visit ultimately have lower lost-to-follow-up rates (Braitstein et al. 2011).

Since 75% of HIV-infected individuals in South Africa use remedies dispensed by traditional healers, it has become increasingly apparent that patients would ultimately benefit from bridging the gap between these disciplines (Shuster et al. 2009). Practitioners of western medicine are now working with traditional healers to assist in HIV education, counseling and testing in the community (Peltzer, Mngqundaniso, and Petros 2006; *Traditional healers in South Africa trained to encourage people to get tested for HIV* 2006). Consequently, this approach has been supported by the South African Department of Public Health (Ojikutu, Jack, and Ramjee 2007).

#### **5.3 Examples of universal health care systems**

Various health care systems and clinical settings have created structures to improve the ability of individuals to remain engaged in care. Some health care systems, such as those found in the US Department of Defense (DoD), US Department of Veterans Affairs (VA) and various European countries, have reduced or eliminated the out-of-pocket expenses for patients or have provided financial assistance through the involvement of integrated community-based organizations. In the absence of universal health care, some of the interventions include the use of patient navigators, such as those implemented in clinics across Haiti, comprehensive integrated care centers (the medical home), patient- and familyfocused care, optimal use of electronic medical records for tracking and process optimization, community-based specialty care, and interventions specifically targeting drug users or other vulnerable subpopulations.

#### **5.3.1 Vancouver**

42 Understanding HIV/AIDS Management and Care – Pandemic Approaches in the 21st Century

six months (90-95%) and very low rates of loss to follow up (Boulle et al. 2008; Marconi et al. 2008). These outcomes have remained outstanding even after several years of treatment (Lawn et al. 2008; Rosen, Fox, and Gill 2007). For the small percentage of patients requiring second line therapy, a substantial percentage of patients were able to achieve virologic suppression thereafter (Fox et al. 2010; Murphy et al. 2010). Although encouraging, most of these reports have been from urban clinics with adequate resources to individually and programmatically monitor and manage the large volume of patients initiated on ART. Unfortunately, early data from rural sites with fewer resources have shown more discouraging outcomes (Mutevedzi et al. 2010). Suboptimal adherence to ART has been associated with virologic failure (Nachega et al. 2006; Bisson et al. 2008), drug resistance

Although programmatic monitoring has been required to maintain funding support, it has simultaneously served as a mechanism to assist clinics in assessing, assuring and improving the care delivery processes and quality of the care provided. Some clinical sites have also been fitted with electronic medical records and other electronic systems to improve the workflow and immediate access to necessary data. Another effective systematic change has been the extensive use of counselors, peer navigators, HIV educators and nurses to deliver care for patients who are doing well on treatment, particularly in areas where physician resources are limited (Sanne et al. 2010; Abdool Karim et al. 2009). This approach, known as task shifting, along with down-referral (the decentralization of care to smaller clinics without physicians) has been one way to address the limited human resources relative to the demand (Long et al. 2011; Matovu et al. 2011; Sanne et al. 2010). This approach is consistent with the development of more community-based health centers to improve access, especially in rural areas. In addition to treatment monitoring of patients on a stable regimen, the role for nurse initiation and complete follow up management of patients on ART (NIM-ART) is being assessed in a randomized trial and is being discussed at a national level in order to expand treatment access (Colvin et al. 2010; Uebel et al. 2011; Fairall et al. 2011). Another intervention being used to improve access and retention in care has been the fasttracking of patients in desperate need of starting ART (Geng et al. 2011). Similarly, ART initiation in the hospital after initial HIV diagnosis and/or a new opportunistic infection helps to reduce the barriers experienced when patients are discharged from the hospital. This is especially effective when combined with palliative care programs designed to address the multiple symptomatic complaints as well as psychosocial and spiritual needs of the patient. In a busy clinical program, these issues often get overlooked by providers and nurses which can erode trust in the health care team (Sunpath et al. 2011). In East Africa, programs with dedicated staff who use aggressive outreach (by using all available means of transportation) to search for patients within 30 days of a missed visit ultimately have lower

Since 75% of HIV-infected individuals in South Africa use remedies dispensed by traditional healers, it has become increasingly apparent that patients would ultimately benefit from bridging the gap between these disciplines (Shuster et al. 2009). Practitioners of western medicine are now working with traditional healers to assist in HIV education, counseling and testing in the community (Peltzer, Mngqundaniso, and Petros 2006; *Traditional healers in South Africa trained to encourage people to get tested for HIV* 2006). Consequently, this approach has been supported by the South African Department of Public Health (Ojikutu, Jack, and

(Braithwaite et al. 2006), and death (Wood et al. 2002).

lost-to-follow-up rates (Braitstein et al. 2011).

Ramjee 2007).

In contrast to the US, Canada provides a universal health care system for all its residents that covers treatment of HIV. For example, in the province of British Columbia, health care and antiretroviral medications are provided free of charge. Almost as important as eliminating out-of-pocket expenses, this system has virtually eliminated the administrative barriers that accompany similar systems elsewhere when an individual moves in and out of various insurance programs. HIV-positive patients must register with the Drug Treatment Program (DTP) that is coordinated by the British Columbia Center for Excellence in HIV/AIDS. Despite the availability of free health care, investigators in Vancouver found that a significant number of HIV-positive individuals still do not use antiretroviral therapy, and that 40% of people who died from HIV-related causes never initiated ART (Joy et al. 2008). They also found that 16% of individuals waited until their CD4 cell count fell below 50 cells/µl to initiate ART (Joy et al. 2008). The findings in British Columbia demonstrate how access to care alone may not result in optimal health outcomes across all HIV-infected populations, and that multiple factors must be considered when designing interventions to improve health outcomes (Lima et al. 2010; *British Columbia Center for Excellence in HIV/AIDS*).

#### **5.3.2 Military and VA**

Most health care in the US is delivered by clinics and hospitals that are privately owned and operated (community-based, academic, corporate-owned) and a smaller percentage are government-based. Since the US is a mixed market system, the payer source is divided between self-pay (12.8%) and third party insurance (87.2%). Third party insurance includes public insurance (46.4% of the total as Medicare, Medicaid and government employee insurance) and private insurance (40.7% of the total) (CMS 2011). Some of the government employee programs such as those associated with the DoD and the VA provide universal access to care for their participants. When care is received at government facilities or other participating facilities, the individual has no (or minimal) out of pocket expenses and does not pay premiums or deductibles. Studies have shown that individuals with HIV in these programs have outcomes equivalent to those reported in clinical trials with high levels of adherence and virologic suppression, as well as low rates of hospitalization and mortality, even among individuals with other significant barriers to care (homelessness, poverty, drug

Social Determinants of HIV Health Care: A Tale of Two Cities 45

suppression, and prevention for positives interventions. The study will also assess the patient and provider attitudes toward the initiation of ART in early HIV disease. Outcomes in the intervention communities (Washington, DC, and the Bronx, NY) will be compared to those in the non-intervention communities (Chicago, Illinois, Houston, Texas, Miami, Florida and Philadelphia). This study began enrollment in 2011 and results are expected in

Regular access to a medical provider specialized to treat HIV may be difficult for some HIVpositive patients, and the US Institute of Medicine has recently identified critical shortages in the number of providers specialized to care for HIV-positive individuals (IOM 2011). In addition, some patients may feel that attending an infectious diseases specialty clinic carries a stigma, and they may avoid care for this reason. One way that health systems have circumvented this barrier is to place HIV specialists in community health care settings. For example, Montefiore Medical Center, Bronx, NY, has a hospital-based infectious diseases clinic, as well as several community-based primary care clinics that manage HIV-positive patients by using partnerships between primary care providers and HIV specialists. Investigators found, in a retrospective review comparing those who initiated care in the hospital-based setting versus the community-based setting, that patients initiated ART at similar rates and achieved similar levels of virologic suppression (Chu et al. 2010). The findings here suggest this may be a viable way to provide appropriate HIV specialty care for patients who may find difficulty accessing more centralized care settings, and this may

alleviate some of the provider shortages regarding HIV specialists in the US.

(Crane et al. 2006; Nachega et al. 2004; Weiser et al. 2003; Weiser et al. 2010).

become crucial components for successful HIV treatment.

After overcoming the hurdles associated with navigating the health care system and understanding the complexities of their disease, individuals with HIV must maintain perfect adherence to difficult regimens requiring multiple doses per day or suffer the consequences of HIV drug resistance and disease progression. Overcoming many psychosocial and physical discomforts related to the diagnosis and disease are paramount to ensuring a steady pace in what would be considered a marathon of necessary therapy. The most common factors associated with poor treatment adherence include untreated depression, active substance abuse, poor insight into disease and treatment, youth, higher pill burden, more frequent dosing and forgetfulness (Nachega et al. 2011). In Sub-Saharan Africa, the cost of ART, lack transportation to the health care facility for refills, and pharmacy stock-outs are additional barriers; stigma and food insecurity were the most prevalent risk factors for poor adherence

Various approaches have been undertaken to include incorporation of religious and spiritual counseling, active substance and mental health programs as well as involvement with treatment partners and support groups. Finally, ongoing education and novel techniques to allow the incorporation of pill-taking into activities of daily living have

In the US, efforts to improve adherence to antiretroviral drug regimens have focused both on individual and structural barriers to optimal adherence. Throughout the past 30 years, as

approximately 3 years.

**6. Medication adherence** 

**6.1 United States** 

**5.6 Community-based specialty care** 

use) (Marconi et al. 2010; Guest et al. 2011). Eliminating out-of-pocket expenses and streamlining health care may result in improved outcomes for HIV patients, even for traditionally marginalized populations.

#### **5.4 Overcoming the barrier of substance abuse**

HIV and substance abuse have coexisted since the beginning of the epidemic. Not only does injection drug use provide a direct pathway for HIV transmission via the use of shared blood products, but certain substances, particularly stimulants, have been associated with a high frequency of unprotected sex, providing another pathway for HIV transmission.

Various techniques have been attempted to improve rates of linkage to care among substance abusers, such as coordinated substance abuse, mental health, and medical treatment (Korthuis et al. 2011; Weiss et al. 2011; Cunningham et al. 2011). Targeted outreach programs designed to bring active drug users to engage in medical care have been implemented in many cities in the US and Canada, such as Boston, New Haven, New York, and Vancouver. These outreach programs often partner with community-based harm reduction organizations to provide the needed services in spaces that may be more comfortable for drug users (Cunningham et al. 2007; Bardsley, Turvey, and Blatherwick 1990).

For example, in New York City a partnership between Montefiore Medical Center (academic medical institution) and CitiWide Harm Reduction (community-based organization) was designed to bring HIV-positive drug users into medical care. Medical providers go to singleroom occupancy hotels accompanied by the outreach teams from CitiWide to meet potential patients, offer medical services, and educate patients. Immediate needs such as prescriptions for acute illnesses may be written for patients during the outreach, and those who are interested may be referred for primary care services on-site at either CitiWide's walk-in clinic or Montefiore's primary care clinic (Cunningham et al. 2007). Investigators found that patients were more likely to keep same-day or walk-in appointments at CitiWide's walk-in clinic compared with future appointments at Montefiore (Cunningham et al. 2007). These findings emphasize the need to provide care in various ways that facilitate access to care for substance users.

In Massachusetts, a mobile van from the Massachusetts Department of Public Health targets men who have sex with men, in order to diagnose HIV earlier and prevent and treat sexually transmitted infections. Researchers found that men using the mobile van's services reported a variety of substances used, including substance use during sex, and that polysubstance users had higher numbers of male sexual partners, anonymous male sexual partners, and male sexual partners met over the internet in the previous year, when compared with non-polysubstance users (Mimiaga et al. 2008). These findings indicate that mobile van health services are a useful way to target this high-risk group.

#### **5.5 Test, Link to Care, Plus Treat (TLC-Plus)**

In order to address many of the challenges in the test-to-treat continuum for HIV infected individuals, the NIH-funded HIV Prevention Trials Network (HPTN) has started a study called TLC-Plus (Test, Link to Care, Plus Treat) in Washington, DC, and Bronx, NY, to evaluate the feasibility of a multifaceted approach to HIV prevention. The study includes a package of interventions that include expanded HIV testing, linkage to care, initiation of ART for those clinically eligible, promotion of high adherence to maintain virologic suppression, and prevention for positives interventions. The study will also assess the patient and provider attitudes toward the initiation of ART in early HIV disease. Outcomes in the intervention communities (Washington, DC, and the Bronx, NY) will be compared to those in the non-intervention communities (Chicago, Illinois, Houston, Texas, Miami, Florida and Philadelphia). This study began enrollment in 2011 and results are expected in approximately 3 years.

## **5.6 Community-based specialty care**

44 Understanding HIV/AIDS Management and Care – Pandemic Approaches in the 21st Century

use) (Marconi et al. 2010; Guest et al. 2011). Eliminating out-of-pocket expenses and streamlining health care may result in improved outcomes for HIV patients, even for

HIV and substance abuse have coexisted since the beginning of the epidemic. Not only does injection drug use provide a direct pathway for HIV transmission via the use of shared blood products, but certain substances, particularly stimulants, have been associated with a

Various techniques have been attempted to improve rates of linkage to care among substance abusers, such as coordinated substance abuse, mental health, and medical treatment (Korthuis et al. 2011; Weiss et al. 2011; Cunningham et al. 2011). Targeted outreach programs designed to bring active drug users to engage in medical care have been implemented in many cities in the US and Canada, such as Boston, New Haven, New York, and Vancouver. These outreach programs often partner with community-based harm reduction organizations to provide the needed services in spaces that may be more comfortable for drug users (Cunningham et al.

For example, in New York City a partnership between Montefiore Medical Center (academic medical institution) and CitiWide Harm Reduction (community-based organization) was designed to bring HIV-positive drug users into medical care. Medical providers go to singleroom occupancy hotels accompanied by the outreach teams from CitiWide to meet potential patients, offer medical services, and educate patients. Immediate needs such as prescriptions for acute illnesses may be written for patients during the outreach, and those who are interested may be referred for primary care services on-site at either CitiWide's walk-in clinic or Montefiore's primary care clinic (Cunningham et al. 2007). Investigators found that patients were more likely to keep same-day or walk-in appointments at CitiWide's walk-in clinic compared with future appointments at Montefiore (Cunningham et al. 2007). These findings emphasize the need to provide care in various ways that facilitate access to care for

In Massachusetts, a mobile van from the Massachusetts Department of Public Health targets men who have sex with men, in order to diagnose HIV earlier and prevent and treat sexually transmitted infections. Researchers found that men using the mobile van's services reported a variety of substances used, including substance use during sex, and that polysubstance users had higher numbers of male sexual partners, anonymous male sexual partners, and male sexual partners met over the internet in the previous year, when compared with non-polysubstance users (Mimiaga et al. 2008). These findings indicate that

In order to address many of the challenges in the test-to-treat continuum for HIV infected individuals, the NIH-funded HIV Prevention Trials Network (HPTN) has started a study called TLC-Plus (Test, Link to Care, Plus Treat) in Washington, DC, and Bronx, NY, to evaluate the feasibility of a multifaceted approach to HIV prevention. The study includes a package of interventions that include expanded HIV testing, linkage to care, initiation of ART for those clinically eligible, promotion of high adherence to maintain virologic

mobile van health services are a useful way to target this high-risk group.

high frequency of unprotected sex, providing another pathway for HIV transmission.

traditionally marginalized populations.

**5.4 Overcoming the barrier of substance abuse** 

2007; Bardsley, Turvey, and Blatherwick 1990).

**5.5 Test, Link to Care, Plus Treat (TLC-Plus)** 

substance users.

Regular access to a medical provider specialized to treat HIV may be difficult for some HIVpositive patients, and the US Institute of Medicine has recently identified critical shortages in the number of providers specialized to care for HIV-positive individuals (IOM 2011). In addition, some patients may feel that attending an infectious diseases specialty clinic carries a stigma, and they may avoid care for this reason. One way that health systems have circumvented this barrier is to place HIV specialists in community health care settings. For example, Montefiore Medical Center, Bronx, NY, has a hospital-based infectious diseases clinic, as well as several community-based primary care clinics that manage HIV-positive patients by using partnerships between primary care providers and HIV specialists. Investigators found, in a retrospective review comparing those who initiated care in the hospital-based setting versus the community-based setting, that patients initiated ART at similar rates and achieved similar levels of virologic suppression (Chu et al. 2010). The findings here suggest this may be a viable way to provide appropriate HIV specialty care for patients who may find difficulty accessing more centralized care settings, and this may alleviate some of the provider shortages regarding HIV specialists in the US.

## **6. Medication adherence**

After overcoming the hurdles associated with navigating the health care system and understanding the complexities of their disease, individuals with HIV must maintain perfect adherence to difficult regimens requiring multiple doses per day or suffer the consequences of HIV drug resistance and disease progression. Overcoming many psychosocial and physical discomforts related to the diagnosis and disease are paramount to ensuring a steady pace in what would be considered a marathon of necessary therapy. The most common factors associated with poor treatment adherence include untreated depression, active substance abuse, poor insight into disease and treatment, youth, higher pill burden, more frequent dosing and forgetfulness (Nachega et al. 2011). In Sub-Saharan Africa, the cost of ART, lack transportation to the health care facility for refills, and pharmacy stock-outs are additional barriers; stigma and food insecurity were the most prevalent risk factors for poor adherence (Crane et al. 2006; Nachega et al. 2004; Weiser et al. 2003; Weiser et al. 2010).

Various approaches have been undertaken to include incorporation of religious and spiritual counseling, active substance and mental health programs as well as involvement with treatment partners and support groups. Finally, ongoing education and novel techniques to allow the incorporation of pill-taking into activities of daily living have become crucial components for successful HIV treatment.

#### **6.1 United States**

In the US, efforts to improve adherence to antiretroviral drug regimens have focused both on individual and structural barriers to optimal adherence. Throughout the past 30 years, as

Social Determinants of HIV Health Care: A Tale of Two Cities 47

The World Health Organization established several Early Warning Indicators in order to identify how well sites are managing ART usage and adherence. These have directly resulted in optimization of the quality of care and have assisted in the identification of vulnerable clinics (Jordan et al. 2011; Hong et al. 2010). A significant effort has been applied to ensuring high rates of adherence in various clinics throughout Africa and in particular South Africa (Mills et al. 2006). Individual adherence sessions with peer counselors and group education programs provide detailed information on HIV infection, antiretroviral medications, drug interactions, stigma, and adherence techniques (Lawn et al. 2007; Matovu et al. 2011). Many of these programs and support groups work to increase social capital and empower individuals to make health a priority (Achieng et al. 2011). Individuals who do not disclose their HIV status to intimate partners or household members may feel stigmatized and hide their pills for fear of being discovered, and disclosure of HIV status has been proven to improve adherence (Nachega et al. 2004). In Kenya, mobile phone text messages improved ART adherence over standard care (Lester et al. 2010; Pop-Eleches et al. 2011). Various methods of adherence monitoring have been evaluated to determine efficacy (Nachega et al. 2011). Pill counts (Achieng et al. 2011) and pharmacy refill monitoring (Murphy et al. 2011) have been shown to be reliable and inexpensive but not consistent across all settings. Directly observed ART has also been examined with mixed results but overall is costly and labor intensive (Nachega et al. 2010; Hart et al. 2010), as is therapeutic

In rural Haiti, a non-governmental organization, Partners in Health, has been working since 1987 to support HIV/AIDS treatment. Among the many barriers to optimal care in Haiti, i.e. poverty, food insecurity, political disruptions, a program was developed to help HIV patients take their medications. *Accompagnateurs*, or community health workers, were people chosen from the local community and trained in medication and symptom management for HIV patients. Since starting this program, patients have experienced an increase in CD4 count and reduction in viral loads, and therefore the accompagnateurs have been identified as a critical component of the clinical care provided for these patients

One important factor to HIV-positive patients achieving optimal health is the ability to leverage social capital. Social capital can be defined as the value that comes from engagement in a social network. Social capital can help HIV patients achieve good health by providing psychological and physical support (e.g. food, shelter, transportation, money for medications). Stigma can inhibit the ability to leverage social capital because it interferes in the individual's willingness to seek help from others in their social network (Bangsberg and Deeks 2010). In a qualitative study conducted in Kenya, Uganda, and Nigeria, researchers found that higher levels of social capital helped HIV-positive patients to prioritize ART

A substantial impact has occurred via the implementation of outreach programs designed to improve the social capital of various disenfranchised populations where stigma, poor health

(Koenig, Leandre, and Farmer 2004; Behforouz, Farmer, and Mukherjee 2004).

adherence and achieve improved health (Ware et al. 2009).

drug monitoring via plasma or hair sampling (van Zyl et al. 2011).

**6.2 Sub-Saharan Africa** 

**6.3 Haiti** 

**7. Improving social capital** 

newer HIV drugs are developed and become available on the market, the number of pills needed for a successful regimen has decreased. Now, many patients starting their first regimen can take a single pill (co-formulated tenofovir/emtricitabine/efavirenz, known as Atripla) once a day to achieve virologic suppression. In a meta-analysis of 11 randomized controlled trials, adherence to once-daily regimens was better than to twice-daily regimens (Parienti et al. 2009). The US DHHS Adult and Adolescent Treatment Guidelines have been modified to reflect the impact of barriers to adherence on treatment response, so that regimens with fewer pills are recommended over other regimens (DHHS 2011).

Many HIV clinics have trained staff to counsel patients on medication adherence, which includes reviewing all of the medications taken prior to initiating or changing a regimen, discussing the main side effects, identifying the best ways to take the prescribed medications, and helping patients think about ways to incorporate pill-taking into their lives with contextual and designed reminders. Reminders such as alarms or pill boxes may be coupled with adherence counseling as they have been shown to enhance adherence (Simoni et al. 2006; de Bruin et al. 2010).

For those who are not able to achieve optimal adherence despite individual counseling, some health care systems have developed directly observed therapy (DOT) programs, which are modeled on the adherence programs initially developed for tuberculosis therapy. The idea behind using DOT for HIV therapy is to reduce the risk of viral drug resistance and to achieve virologic suppression, which will provide health benefits to the patient as well as reduce the risk of HIV transmission. There are many varieties of DOT programs in practice, depending on the needs of the patient population and the services available from the health care system. One of the main differences between TB therapy and HIV therapy is that for HIV, the duration of therapy is life-long, and the number of pills or frequency of doses may not decrease over time. However, the overall benefit of DOT on virologic suppression is controversial with studies finding both a lack of benefit and an overall benefit to DOT, with respect to adherence, immunologic, and virologic outcomes (Hart et al. 2010; Myers and Tsiouris 2009; Ford et al. 2009).

One example of a patient-centered DOT program can be found in New York City. Due to the barriers to adherence faced by opioid-dependent HIV-positive patients, a DOT program for HIV therapy was developed to deliver HIV medications at methadone clinics. US federal policies require patients to obtain their methadone doses from one clinic, and at the discretion of the clinic, patients may be required to attend daily or weekly observed dosing appointments. Since the patients may visit the methadone clinic frequently (every day, or at least five to six days per week), HIV medications were coupled with the observed daily methadone dose. Investigators found that patients in the DOT program achieved higher levels of adherence and virologic suppression when assessed after 24 weeks (Berg et al. 2011).

Contingency management, which consists of financial incentives for medication adherence, has also been shown to be efficacious in enhancing participation in substance abuse treatment and for reducing drug use. The use of contingency management for HIV has been shown to be effective (Petry et al. 2010), but the beneficial effect appears to wane after incentives are removed (Rosen et al. 2007). Future studies that incorporate contingency management, patient navigators, and/or peer counseling will need to be tested before contingency management can be considered as a "best practice" for the management of HIV.

#### **6.2 Sub-Saharan Africa**

46 Understanding HIV/AIDS Management and Care – Pandemic Approaches in the 21st Century

newer HIV drugs are developed and become available on the market, the number of pills needed for a successful regimen has decreased. Now, many patients starting their first regimen can take a single pill (co-formulated tenofovir/emtricitabine/efavirenz, known as Atripla) once a day to achieve virologic suppression. In a meta-analysis of 11 randomized controlled trials, adherence to once-daily regimens was better than to twice-daily regimens (Parienti et al. 2009). The US DHHS Adult and Adolescent Treatment Guidelines have been modified to reflect the impact of barriers to adherence on treatment response, so that

Many HIV clinics have trained staff to counsel patients on medication adherence, which includes reviewing all of the medications taken prior to initiating or changing a regimen, discussing the main side effects, identifying the best ways to take the prescribed medications, and helping patients think about ways to incorporate pill-taking into their lives with contextual and designed reminders. Reminders such as alarms or pill boxes may be coupled with adherence counseling as they have been shown to enhance adherence (Simoni

For those who are not able to achieve optimal adherence despite individual counseling, some health care systems have developed directly observed therapy (DOT) programs, which are modeled on the adherence programs initially developed for tuberculosis therapy. The idea behind using DOT for HIV therapy is to reduce the risk of viral drug resistance and to achieve virologic suppression, which will provide health benefits to the patient as well as reduce the risk of HIV transmission. There are many varieties of DOT programs in practice, depending on the needs of the patient population and the services available from the health care system. One of the main differences between TB therapy and HIV therapy is that for HIV, the duration of therapy is life-long, and the number of pills or frequency of doses may not decrease over time. However, the overall benefit of DOT on virologic suppression is controversial with studies finding both a lack of benefit and an overall benefit to DOT, with respect to adherence, immunologic, and virologic outcomes (Hart et al. 2010; Myers and

One example of a patient-centered DOT program can be found in New York City. Due to the barriers to adherence faced by opioid-dependent HIV-positive patients, a DOT program for HIV therapy was developed to deliver HIV medications at methadone clinics. US federal policies require patients to obtain their methadone doses from one clinic, and at the discretion of the clinic, patients may be required to attend daily or weekly observed dosing appointments. Since the patients may visit the methadone clinic frequently (every day, or at least five to six days per week), HIV medications were coupled with the observed daily methadone dose. Investigators found that patients in the DOT program achieved higher levels of adherence and virologic suppression when assessed after 24 weeks (Berg et al.

Contingency management, which consists of financial incentives for medication adherence, has also been shown to be efficacious in enhancing participation in substance abuse treatment and for reducing drug use. The use of contingency management for HIV has been shown to be effective (Petry et al. 2010), but the beneficial effect appears to wane after incentives are removed (Rosen et al. 2007). Future studies that incorporate contingency management, patient navigators, and/or peer counseling will need to be tested before contingency management can be considered as a "best practice" for the management of

regimens with fewer pills are recommended over other regimens (DHHS 2011).

et al. 2006; de Bruin et al. 2010).

Tsiouris 2009; Ford et al. 2009).

2011).

HIV.

The World Health Organization established several Early Warning Indicators in order to identify how well sites are managing ART usage and adherence. These have directly resulted in optimization of the quality of care and have assisted in the identification of vulnerable clinics (Jordan et al. 2011; Hong et al. 2010). A significant effort has been applied to ensuring high rates of adherence in various clinics throughout Africa and in particular South Africa (Mills et al. 2006). Individual adherence sessions with peer counselors and group education programs provide detailed information on HIV infection, antiretroviral medications, drug interactions, stigma, and adherence techniques (Lawn et al. 2007; Matovu et al. 2011). Many of these programs and support groups work to increase social capital and empower individuals to make health a priority (Achieng et al. 2011). Individuals who do not disclose their HIV status to intimate partners or household members may feel stigmatized and hide their pills for fear of being discovered, and disclosure of HIV status has been proven to improve adherence (Nachega et al. 2004). In Kenya, mobile phone text messages improved ART adherence over standard care (Lester et al. 2010; Pop-Eleches et al. 2011). Various methods of adherence monitoring have been evaluated to determine efficacy (Nachega et al. 2011). Pill counts (Achieng et al. 2011) and pharmacy refill monitoring (Murphy et al. 2011) have been shown to be reliable and inexpensive but not consistent across all settings. Directly observed ART has also been examined with mixed results but overall is costly and labor intensive (Nachega et al. 2010; Hart et al. 2010), as is therapeutic drug monitoring via plasma or hair sampling (van Zyl et al. 2011).

#### **6.3 Haiti**

In rural Haiti, a non-governmental organization, Partners in Health, has been working since 1987 to support HIV/AIDS treatment. Among the many barriers to optimal care in Haiti, i.e. poverty, food insecurity, political disruptions, a program was developed to help HIV patients take their medications. *Accompagnateurs*, or community health workers, were people chosen from the local community and trained in medication and symptom management for HIV patients. Since starting this program, patients have experienced an increase in CD4 count and reduction in viral loads, and therefore the accompagnateurs have been identified as a critical component of the clinical care provided for these patients (Koenig, Leandre, and Farmer 2004; Behforouz, Farmer, and Mukherjee 2004).

#### **7. Improving social capital**

One important factor to HIV-positive patients achieving optimal health is the ability to leverage social capital. Social capital can be defined as the value that comes from engagement in a social network. Social capital can help HIV patients achieve good health by providing psychological and physical support (e.g. food, shelter, transportation, money for medications). Stigma can inhibit the ability to leverage social capital because it interferes in the individual's willingness to seek help from others in their social network (Bangsberg and Deeks 2010). In a qualitative study conducted in Kenya, Uganda, and Nigeria, researchers found that higher levels of social capital helped HIV-positive patients to prioritize ART adherence and achieve improved health (Ware et al. 2009).

A substantial impact has occurred via the implementation of outreach programs designed to improve the social capital of various disenfranchised populations where stigma, poor health

Social Determinants of HIV Health Care: A Tale of Two Cities 49

require flexibility and new ideas to be tested and implemented. HIV has been touted as now being a chronic disease, but we must remember that it is an infectious chronic disease. If those infected with HIV have detectable virus circulating in the bloodstream and mucosal surfaces, transmission will continue to occur. Thus, until there is a cure, retaining patients in HIV care over a lifetime is a major challenge for any health care system, particularly for regions that lack universal access to care. Health systems' solutions will also need to address the individual, interpersonal, and underlying structural factors that lead to HIV transmission and the disparities in access to health care. As low- and middle-income countries scale up HIV treatment services, these health systems can serve as models for management of non-communicable diseases as well (Rabkin and El-Sadr 2011). Multiple layers of co-occurring interventions that target individual-level, interpersonal-level, and structural-level factors would address the many aspects of optimal HIV prevention and

Abdool Karim, S. S., and Q. Abdool Karim. 2005. *HIV/AIDS in South Africa*. Cape Town:

Abdool Karim, S. S., G. J. Churchyard, Q. Abdool Karim, and S. D. Lawn. 2009. HIV

Achieng, L., H. Musangi, S. Ong'uti, E. Ombegoh, L. Bryant, J. Mwiindi, N. Smith, and P.

Bangsberg, D. R., and S. G. Deeks. 2010. Spending more to save more: interventions to

Bardsley, J., J. Turvey, and J. Blatherwick. 1990. Vancouver's needle exchange program. *Can* 

Behforouz, H. L., P. E. Farmer, and J. S. Mukherjee. 2004. From directly observed therapy to

Berg, K. M., A. Litwin, X. Li, M. Heo, and J. H. Arnsten. 2011. Directly observed

Bisson, G. P., R. Gross, S. Bellamy, J. Chittams, M. Hislop, L. Regensberg, I. Frank, G.

Boulle, A., P. Bock, M. Osler, K. Cohen, L. Channing, K. Hilderbrand, E. Mothibi, V.

and early mortality in South Africa. *Bull World Health Organ* 86 (9):678-87.

accompagnateurs: enhancing AIDS treatment outcomes in Haiti and in Boston. *Clin* 

antiretroviral therapy improves adherence and viral load in drug users attending methadone maintenance clinics: a randomized controlled trial. *Drug Alcohol Depend*

Maartens, and J. B. Nachega. 2008. Pharmacy refill adherence compared with CD4 count changes for monitoring HIV-infected adults on antiretroviral therapy. *PLoS* 

Zweigenthal, N. Slingers, K. Cloete, and F. Abdullah. 2008. Antiretroviral therapy

infection and tuberculosis in South Africa: an urgent need to escalate the public

Keiser. 2011. Evaluation of methods to promote adherence at an HIV treatment center in central Kenya. Paper read at 18th Conference of Retroviruses and

therapy.

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113 (2-3):192-9.

*Med* 5 (5):e109.

health response. *Lancet* 374 (9693):921-33.

Opportunistic Infections, at Boston, MA.

*AID Atlanta*. 2011. 2011]. Available from http://www.aidatlanta.org/.

promote adherence. *Ann Intern Med* 152 (1):54-6; W-13.

literacy and lack of education stymie those already challenged by competing priorities. Different forms of outreach have been developed, specific to the needs of the marginalized population. These programs have attempted to improve engagement in care and to support those who are living with HIV. For example, programs in Boston (PACT – Prevention, Access to Care and Treatment), San Francisco (PHAST – Positive Health Access to Services and Treatment), and New York City (St. Luke's-Roosevelt Hospital Center's Center for Comprehensive Care) have designed successful outreach programs targeting the patients with the worst levels of engagement in care (Rosenberg 2011). The Community Health Care Van in New Haven provides prevention and treatment services for HIV, hepatitis, substance abuse, and mental illness from a medical van (HRSA). By focusing on the needs of the whole patient, including shelter, food, mental health, and medical comorbidities, and helping them to capitalize on available services and social capital, these programs have helped some of the most vulnerable patients successfully treat their HIV infection.

## **8. Conclusion**

If every HIV-infected individual could know their diagnosis, enter the health care system, start antiretroviral therapy when appropriate and incorporate all the evidence-based preventive health measures into his or her life, we could potentially see a world free of HIV within generations. This is the premise behind the "Test and Treat" strategy (Granich et al. 2009). While this may seem to be a lofty goal, the examples presented here from Atlanta and Durban, as well as those from many other places around the world, suggest that even if the economic resources were made available to implement the "Test and Treat" strategy, there are individual, interpersonal, and structural-level barriers that could limit the impact of such approach (Gardner et al. 2011).

In order to combat the disparities in HIV infection rates and HIV-related morbidity and mortality, creative solutions are necessary. This chapter describes the comparison between the response to the HIV epidemic between Atlanta and Durban, highlighting important similarities and differences between the two cities. Both Atlanta and Durban are located in wealthy countries, yet both have significant racial/ethnic and socioeconomic factors that have led to continued HIV transmission and disparities in HIV outcomes. In each city, individual programs have designed solutions to improve diagnosis and engagement in care. In addition, several other programs around the world have developed their own responses to the HIV epidemic, to deliver care to those who need it within their local contexts.

Focusing on marginalized subpopulations, while difficult, is important both for reducing the disparities in HIV infection and outcomes and also for reducing community-level viral load and subsequent transmission of the virus. These subpopulations of patients may require more intensive resources or specific interventions that successfully engage them in care. For example, several different types of programs in the US, such as targeted outreach in mobile vans, DOT, and variations on the specialty clinic model, have successfully engaged marginalized patients in care. In South Africa, systemic solutions (such as actively seeking out patients who miss appointments and expanding the roles of allied health professionals) and cultural solutions (such as incorporating traditional healers into medical care) are being used to improve engagement in care and ART adherence.

As HIV continues to spread, and as patients live longer, health systems must develop strategies for HIV prevention and continued engagement in care; this will undoubtedly require flexibility and new ideas to be tested and implemented. HIV has been touted as now being a chronic disease, but we must remember that it is an infectious chronic disease. If those infected with HIV have detectable virus circulating in the bloodstream and mucosal surfaces, transmission will continue to occur. Thus, until there is a cure, retaining patients in HIV care over a lifetime is a major challenge for any health care system, particularly for regions that lack universal access to care. Health systems' solutions will also need to address the individual, interpersonal, and underlying structural factors that lead to HIV transmission and the disparities in access to health care. As low- and middle-income countries scale up HIV treatment services, these health systems can serve as models for management of non-communicable diseases as well (Rabkin and El-Sadr 2011). Multiple layers of co-occurring interventions that target individual-level, interpersonal-level, and structural-level factors would address the many aspects of optimal HIV prevention and therapy.

#### **9. References**

48 Understanding HIV/AIDS Management and Care – Pandemic Approaches in the 21st Century

literacy and lack of education stymie those already challenged by competing priorities. Different forms of outreach have been developed, specific to the needs of the marginalized population. These programs have attempted to improve engagement in care and to support those who are living with HIV. For example, programs in Boston (PACT – Prevention, Access to Care and Treatment), San Francisco (PHAST – Positive Health Access to Services and Treatment), and New York City (St. Luke's-Roosevelt Hospital Center's Center for Comprehensive Care) have designed successful outreach programs targeting the patients with the worst levels of engagement in care (Rosenberg 2011). The Community Health Care Van in New Haven provides prevention and treatment services for HIV, hepatitis, substance abuse, and mental illness from a medical van (HRSA). By focusing on the needs of the whole patient, including shelter, food, mental health, and medical comorbidities, and helping them to capitalize on available services and social capital, these programs have helped some of the

If every HIV-infected individual could know their diagnosis, enter the health care system, start antiretroviral therapy when appropriate and incorporate all the evidence-based preventive health measures into his or her life, we could potentially see a world free of HIV within generations. This is the premise behind the "Test and Treat" strategy (Granich et al. 2009). While this may seem to be a lofty goal, the examples presented here from Atlanta and Durban, as well as those from many other places around the world, suggest that even if the economic resources were made available to implement the "Test and Treat" strategy, there are individual, interpersonal, and structural-level barriers that could limit the impact of such

In order to combat the disparities in HIV infection rates and HIV-related morbidity and mortality, creative solutions are necessary. This chapter describes the comparison between the response to the HIV epidemic between Atlanta and Durban, highlighting important similarities and differences between the two cities. Both Atlanta and Durban are located in wealthy countries, yet both have significant racial/ethnic and socioeconomic factors that have led to continued HIV transmission and disparities in HIV outcomes. In each city, individual programs have designed solutions to improve diagnosis and engagement in care. In addition, several other programs around the world have developed their own responses

to the HIV epidemic, to deliver care to those who need it within their local contexts.

used to improve engagement in care and ART adherence.

Focusing on marginalized subpopulations, while difficult, is important both for reducing the disparities in HIV infection and outcomes and also for reducing community-level viral load and subsequent transmission of the virus. These subpopulations of patients may require more intensive resources or specific interventions that successfully engage them in care. For example, several different types of programs in the US, such as targeted outreach in mobile vans, DOT, and variations on the specialty clinic model, have successfully engaged marginalized patients in care. In South Africa, systemic solutions (such as actively seeking out patients who miss appointments and expanding the roles of allied health professionals) and cultural solutions (such as incorporating traditional healers into medical care) are being

As HIV continues to spread, and as patients live longer, health systems must develop strategies for HIV prevention and continued engagement in care; this will undoubtedly

most vulnerable patients successfully treat their HIV infection.

**8. Conclusion** 

approach (Gardner et al. 2011).


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**4** 

*South Africa* 

**The Role of the Private Sector in HIV and AIDS** 

The HIV and AIDS pandemic enters its fourth decade of expansion having undermined every aspect of society. This is particularly the case in sub-Saharan Africa, which remains the most heavily affected region, accounting for 72% of all new infections in 2008, and for 68% of the global number of people living with HIV in 2009 (United Nations, 2010; UNAIDS, 2010). UNAIDS further reports that during 2009 alone an estimated 1.3 million adults and children died as a result of AIDS in sub-Saharan Africa and that more than 15 million have died in the region since the beginning of the epidemic in the early 1980s

The impact of the epidemic in sub-Saharan Africa is widely felt in, among others, the health, education, agriculture, mining, transport and other production sectors. Furthermore, to the extent that the vast majority of people living with HIV and AIDS are between the ages of 15 and 49 years—in the prime of their working lives (International Labour Organisation, 2006), the epidemic weakens economic activity through decreased productivity due to absenteeism resulting from sickness, caring for family and dependents; and organizing and attending funerals; low morale at work due to losing family, friends and colleagues; increased costs due to rising health insurance, sick leave, funeral costs, recruiting and training skilled workers; and reduced labour supply due to increased mortality (Phororo, 2003; Sidhu, 2008). Government income also declines as tax revenues fall and governments are pressured to

It is largely against this background that the 2001 United Nations Declaration of Commitment on identified the private sector as an essential part of the national and global responses to [HIV and AIDS]. In line with this Declaration, and as the epidemic continues to affect the working population, the private sector in Africa has over the past years scaled up its response by complementing the work of the traditional public sector and civil society actors (Sidhu, 2008). Progressive companies throughout the region are putting in place a wide range of HIV and AIDS prevention, care, and treatment programmes. These include education and awareness campaigns; training of peer educators; distribution of condoms; promotion of HIV testing; and treatment of, and protection against, other sexually transmitted infections (Rosen et al, 2007). The prevention programmes are typically designed to reduce the incidence of the epidemic in the workplace. Care and treatment

increase their spending to deal with the expanding epidemic (Avert, 2011).

**1. Introduction** 

(UNAIDS, 2008; 2010).

**Interventions in Developing Countries:** 

**The Case of Lesotho** 

Zitha Mokomane and Mokhantšo Makoae *Human Sciences Research Council of South Africa* 

Wood, K., F. Maforah, and R. Jewkes. 1998. "He forced me to love him": putting violence on adolescent sexual health agendas. *Soc Sci Med* 47 (2):233-42.

Yee, Daniel. 2007. FAA: Atlanta airport is nation's busiest. *USA Today*.

## **The Role of the Private Sector in HIV and AIDS Interventions in Developing Countries: The Case of Lesotho**

Zitha Mokomane and Mokhantšo Makoae *Human Sciences Research Council of South Africa South Africa* 

## **1. Introduction**

58 Understanding HIV/AIDS Management and Care – Pandemic Approaches in the 21st Century

Wood, K., F. Maforah, and R. Jewkes. 1998. "He forced me to love him": putting violence on

adolescent sexual health agendas. *Soc Sci Med* 47 (2):233-42. Yee, Daniel. 2007. FAA: Atlanta airport is nation's busiest. *USA Today*.

> The HIV and AIDS pandemic enters its fourth decade of expansion having undermined every aspect of society. This is particularly the case in sub-Saharan Africa, which remains the most heavily affected region, accounting for 72% of all new infections in 2008, and for 68% of the global number of people living with HIV in 2009 (United Nations, 2010; UNAIDS, 2010). UNAIDS further reports that during 2009 alone an estimated 1.3 million adults and children died as a result of AIDS in sub-Saharan Africa and that more than 15 million have died in the region since the beginning of the epidemic in the early 1980s (UNAIDS, 2008; 2010).

> The impact of the epidemic in sub-Saharan Africa is widely felt in, among others, the health, education, agriculture, mining, transport and other production sectors. Furthermore, to the extent that the vast majority of people living with HIV and AIDS are between the ages of 15 and 49 years—in the prime of their working lives (International Labour Organisation, 2006), the epidemic weakens economic activity through decreased productivity due to absenteeism resulting from sickness, caring for family and dependents; and organizing and attending funerals; low morale at work due to losing family, friends and colleagues; increased costs due to rising health insurance, sick leave, funeral costs, recruiting and training skilled workers; and reduced labour supply due to increased mortality (Phororo, 2003; Sidhu, 2008). Government income also declines as tax revenues fall and governments are pressured to increase their spending to deal with the expanding epidemic (Avert, 2011).

> It is largely against this background that the 2001 United Nations Declaration of Commitment on identified the private sector as an essential part of the national and global responses to [HIV and AIDS]. In line with this Declaration, and as the epidemic continues to affect the working population, the private sector in Africa has over the past years scaled up its response by complementing the work of the traditional public sector and civil society actors (Sidhu, 2008). Progressive companies throughout the region are putting in place a wide range of HIV and AIDS prevention, care, and treatment programmes. These include education and awareness campaigns; training of peer educators; distribution of condoms; promotion of HIV testing; and treatment of, and protection against, other sexually transmitted infections (Rosen et al, 2007). The prevention programmes are typically designed to reduce the incidence of the epidemic in the workplace. Care and treatment

The Role of the Private Sector

1998).

2004).

in HIV and AIDS Interventions in Developing Countries: The Case of Lesotho 61

global pattern, women are disproportionately affected by HIV and AIDS, accounting for 57% of the total HIV-positive cases in Lesotho in 2007 (Khobotlo et al., 2009; UNAIDS, 2009), and most infections occur among young women aged 15-24 years. According to (Khobotlo et al, 2009), in 2007 young women had an HIV prevalence of 14.3% compared to 5.6% among men of the same age. Several factors underlie this pattern. These include the migration of young women from rural to urban to seek employment, particularly in the apparel industry. This was a major livelihood strategy following mass retrenchment of male workers from South African mining industry in the 1990s. While the women's migration certainly contributed to family welfare through food security, it also increased the women's vulnerability to HIV infections, as has been established in the literature. That is, although the causation patterns behind the population mobility/HIV connection are complex, it is shown that migration can create situations that increase people's vulnerability and risks (Brummer, 2002; Santis et al, 2007). The most commonly cited post-migration characteristic is separation from a regular partner and family. This view posits that a new social environment can result in a lack of social support which, in turn, can be linked to risk-taking behaviour (Campbell, 2001). Another view is that by leaving their homes, migrants also leave their familiar environment with traditional norms and values and the anonymity of being a foreigner can increase risky sexual activities (Decosas et al, 1995; Girdker-Brown,

Lesotho also has a long history of gender inequalities couched in the laws, traditions and social norms that shape relationships between males and females in different contexts. Despite increased female educational attainment, recent legislative reviews, and the country's ratification of international and regional commitments such as the 1995 Convention on the Elimination of All Forms of Discrimination against Women (CEDAW) and the Southern Africa Development Community (SADC) Addendum on the Prevention and Eradication of Violence against Women and Children, the low status of women in society has remained almost unchanged (Makoa 1997), and gender inequalities continue to affect majority of women and to influence relationships between men and women. For example, although the Government of Lesotho enacted the Legal Capacity of Married Persons Act 9 of 2006 which provides women equality in marriage, inheritance and other spheres (Dube, 2008), the previous common-law principle of marital power which reduced women to minors and gave husbands control over women is still entrenched in various patriarchal institutions in the society. Overall, therefore, gender-related socio-cultural and economic inequalities as well as financial insecurity affect women negatively and may increase their vulnerability to HIV transmission (Ministry of Health and Social Welfare,

There is also wide empirical evidence showing that the socioeconomic determinants of HIV infection include the level of education and responsiveness to information intended to prevent the spread of HIV. De Walque (2007), for example, identifies several studies conducted in Africa showing a negative relationship between HIV prevalence and educational status. Low educational attainment can therefore be seen as one of the characteristics of the textile work force in Lesotho. It is estimated that more than one third of the 45 000 mainly Basotho women workers in the textile industry (44.0% of females) and about 35.6% employees are infected with HIV and that more than 2 000 workers in the industry are killed by AIDS annually (ALAFA, 2006; UNAIDS, 2008). To this end, the PSCAAL intervention was crucial because unlike most peer education interventions that target adolescents and youth, the target population was young female adults, most of them

programmes, on the other hand, are often meant to support employees who are infected with HIV and who have AIDS, with the objective of keeping these employees in the workforce, and delaying or avoiding the costs of AIDS (Rosen & Simon, 2003; Rosen et al, 2004; George et al, 2009)

An example of the African private sector engagement in national HIV and AIDS response is that of the Private Sector Coalition Against AIDS in Lesotho (PSCAAL) initiative that operated between 2002 and 2006 in the Southern African Kingdom. The main goal of the initiative—which was managed by CARE South Africa-Lesotho (hereafter to be referred to as 'CARE')—was to facilitate a partnership among private sector companies in the fight against HIV and AIDS in an environment characterized by a large female workforce and rural-urban migration. Largely based on evidence showing that HIV and AIDS was a serious threat to production in the textile industry (Ruscombe-King, 2008; UNAIDS, 2008), various companies in the textile sector formed part of the sites where PSCAAL activities were undertaken.

The activities included providing peer education for the workforce to raise awareness about, and increase demand for, HIV prevention services. Peer education is commonly used for promoting sexual and reproductive health, especially with regards to HIV prevention among youth by enhancing social learning and providing psychosocial support (Population Council, n.d; Swartz et al, 2010). A group of individuals recruited from among the target population is used as peer educators or agents of change in order to change social norms among peer targets (Chandan et al, 2008:12). The PSCAAL programme implementation involved: (1) training workers to conduct peer education and provide peer counselling to their colleagues in order to influence behaviour change; (2) facilitating the provision of care and support through formation of support groups to encourage workers to talk about HIV and AIDS; (3) using mobile services to encourage workers to utilise voluntary counselling and testing (VCT) services at the workplace; and (4) providing training in workplace HIV and AIDS policies to assist companies to institutionalise their response to the epidemic. Overall, PSCAAL's approach was based on the assumption that exposure of workers to the programme activities would lead to "a shift from risk behaviours contributing to HIV and AIDS towards risk-avoiding strategies in the workforce" (Hanisch, 2006).

This chapter assesses the extent to which PSCAAL's activities enhanced HIV and AIDS knowledge and behaviour changes among the female textile workers. The differences between workers who participated in the peer education programme (PEP) and those who did not participate are examined in terms of: (1) knowledge of HIV and AIDS; (2) preventive behaviour measured as uptake of HIV testing and consistent condom use; (3) attitudes towards HIV; and (4) level of self-efficacy in relation to HIV prevention. The opportunities which PSCAAL could have lost through their programming are also explored and recommendations for more effective private sector engagement in sub-Saharan Africa are given. Unlike previous studies that generally used secondary data to explore these issues, this current study obtained empirical data from workers themselves, and obtained their perspectives on the factors that increase their vulnerability to HIV and the suitability of available support and services.

## **2. Background**

Lesotho is one of the five countries with the highest HIV prevalence in the world with about 23.6% of adults infected in 2008 (National AIDS Commission, 2008). Consistent with the

programmes, on the other hand, are often meant to support employees who are infected with HIV and who have AIDS, with the objective of keeping these employees in the workforce, and delaying or avoiding the costs of AIDS (Rosen & Simon, 2003; Rosen et al,

An example of the African private sector engagement in national HIV and AIDS response is that of the Private Sector Coalition Against AIDS in Lesotho (PSCAAL) initiative that operated between 2002 and 2006 in the Southern African Kingdom. The main goal of the initiative—which was managed by CARE South Africa-Lesotho (hereafter to be referred to as 'CARE')—was to facilitate a partnership among private sector companies in the fight against HIV and AIDS in an environment characterized by a large female workforce and rural-urban migration. Largely based on evidence showing that HIV and AIDS was a serious threat to production in the textile industry (Ruscombe-King, 2008; UNAIDS, 2008), various companies in the textile sector formed part of the sites where PSCAAL activities

The activities included providing peer education for the workforce to raise awareness about, and increase demand for, HIV prevention services. Peer education is commonly used for promoting sexual and reproductive health, especially with regards to HIV prevention among youth by enhancing social learning and providing psychosocial support (Population Council, n.d; Swartz et al, 2010). A group of individuals recruited from among the target population is used as peer educators or agents of change in order to change social norms among peer targets (Chandan et al, 2008:12). The PSCAAL programme implementation involved: (1) training workers to conduct peer education and provide peer counselling to their colleagues in order to influence behaviour change; (2) facilitating the provision of care and support through formation of support groups to encourage workers to talk about HIV and AIDS; (3) using mobile services to encourage workers to utilise voluntary counselling and testing (VCT) services at the workplace; and (4) providing training in workplace HIV and AIDS policies to assist companies to institutionalise their response to the epidemic. Overall, PSCAAL's approach was based on the assumption that exposure of workers to the programme activities would lead to "a shift from risk behaviours contributing to HIV and

This chapter assesses the extent to which PSCAAL's activities enhanced HIV and AIDS knowledge and behaviour changes among the female textile workers. The differences between workers who participated in the peer education programme (PEP) and those who did not participate are examined in terms of: (1) knowledge of HIV and AIDS; (2) preventive behaviour measured as uptake of HIV testing and consistent condom use; (3) attitudes towards HIV; and (4) level of self-efficacy in relation to HIV prevention. The opportunities which PSCAAL could have lost through their programming are also explored and recommendations for more effective private sector engagement in sub-Saharan Africa are given. Unlike previous studies that generally used secondary data to explore these issues, this current study obtained empirical data from workers themselves, and obtained their perspectives on the factors that increase their vulnerability to HIV and the suitability of

Lesotho is one of the five countries with the highest HIV prevalence in the world with about 23.6% of adults infected in 2008 (National AIDS Commission, 2008). Consistent with the

AIDS towards risk-avoiding strategies in the workforce" (Hanisch, 2006).

2004; George et al, 2009)

were undertaken.

available support and services.

**2. Background** 

global pattern, women are disproportionately affected by HIV and AIDS, accounting for 57% of the total HIV-positive cases in Lesotho in 2007 (Khobotlo et al., 2009; UNAIDS, 2009), and most infections occur among young women aged 15-24 years. According to (Khobotlo et al, 2009), in 2007 young women had an HIV prevalence of 14.3% compared to 5.6% among men of the same age. Several factors underlie this pattern. These include the migration of young women from rural to urban to seek employment, particularly in the apparel industry. This was a major livelihood strategy following mass retrenchment of male workers from South African mining industry in the 1990s. While the women's migration certainly contributed to family welfare through food security, it also increased the women's vulnerability to HIV infections, as has been established in the literature. That is, although the causation patterns behind the population mobility/HIV connection are complex, it is shown that migration can create situations that increase people's vulnerability and risks (Brummer, 2002; Santis et al, 2007). The most commonly cited post-migration characteristic is separation from a regular partner and family. This view posits that a new social environment can result in a lack of social support which, in turn, can be linked to risk-taking behaviour (Campbell, 2001). Another view is that by leaving their homes, migrants also leave their familiar environment with traditional norms and values and the anonymity of being a foreigner can increase risky sexual activities (Decosas et al, 1995; Girdker-Brown, 1998).

Lesotho also has a long history of gender inequalities couched in the laws, traditions and social norms that shape relationships between males and females in different contexts. Despite increased female educational attainment, recent legislative reviews, and the country's ratification of international and regional commitments such as the 1995 Convention on the Elimination of All Forms of Discrimination against Women (CEDAW) and the Southern Africa Development Community (SADC) Addendum on the Prevention and Eradication of Violence against Women and Children, the low status of women in society has remained almost unchanged (Makoa 1997), and gender inequalities continue to affect majority of women and to influence relationships between men and women. For example, although the Government of Lesotho enacted the Legal Capacity of Married Persons Act 9 of 2006 which provides women equality in marriage, inheritance and other spheres (Dube, 2008), the previous common-law principle of marital power which reduced women to minors and gave husbands control over women is still entrenched in various patriarchal institutions in the society. Overall, therefore, gender-related socio-cultural and economic inequalities as well as financial insecurity affect women negatively and may increase their vulnerability to HIV transmission (Ministry of Health and Social Welfare, 2004).

There is also wide empirical evidence showing that the socioeconomic determinants of HIV infection include the level of education and responsiveness to information intended to prevent the spread of HIV. De Walque (2007), for example, identifies several studies conducted in Africa showing a negative relationship between HIV prevalence and educational status. Low educational attainment can therefore be seen as one of the characteristics of the textile work force in Lesotho. It is estimated that more than one third of the 45 000 mainly Basotho women workers in the textile industry (44.0% of females) and about 35.6% employees are infected with HIV and that more than 2 000 workers in the industry are killed by AIDS annually (ALAFA, 2006; UNAIDS, 2008). To this end, the PSCAAL intervention was crucial because unlike most peer education interventions that target adolescents and youth, the target population was young female adults, most of them

The Role of the Private Sector

**3.3 Data analysis** 

**4. Findings** 

infection.

**4.1 Study population** 

in HIV and AIDS Interventions in Developing Countries: The Case of Lesotho 63

Method triangulation was pursued by following up in focus groups and key informant interviews issues which workers raised in one-to-one interviews. For example, questions about HIV risk and access to treatment for people living with HIV and a range of factors which could influence access were pursued with different sources. This approach helped to

The data analysis was guided by the main goal of the study: to understand if there were differences between women who participated in PSCAAL's peer education programme (PEP) at the workplace and those who did not participate in the PEP, with particular respect to the kind of critical decisions related to the prevention of HIV infection that the different

Quantitative analysis using SPSS provided characterization of the studied population in terms of the following domains: socio economic and household characteristics, work and finances; HIV and AIDS awareness; HIV testing; access to care; stigma and discrimination; decision making in sexual relationships; gender equality beliefs and norms; gender violence; self efficacy and sense of community. Univariate analyses were used to show patterns in the data, while bivariate analyses were carried out to determine associations between the independent variable (participation in the PEP) and selected dependent variables within the specified domains. Qualitative data from the FGDs and the key-informant interviews was analysed thematically. The qualitative and quantitative results were synthesized to illustrate

Table 1 shows descriptive statistics for the study population. The key findings are that the majority (126 of the 186 women who were interviewed) had participated in the PEP, and were young, with over 70% aged below 35 years. Over half (51.6%) of the PEP participants were married, compared with 36.7% of non-participants. There was no difference between PEP participants and non-participants in terms of educational attainment: majority (61.9% and 61.7% respectively), had secondary school education and above, while about 38% of each sub-group had primary education or less. More than 70% of women in the two groups

Sound knowledge about HIV has been widely documented as an essential pre-requisite albeit, often insufficient, condition for adoption of behaviours that reduce the risk of HIV transmission (UNAIDS 2009). It was therefore expected that the impact of the PEP's component of raising HIV and AIDS awareness among the female textile workers would be reflected in a high number of PEP participations who had knowledge about the epidemic and showed the ability to apply the information obtained in ways which prevented HIV

The study results showed that, overall, knowledge about HIV and AIDS was high among all workers, with 99.2% of PEP participants stating that they had ever heard of HIV or AIDS. The corresponding figure for non-participants was 96.6 %. Although the results were not

validate the data across different sources and contexts of interviewing.

categories of women make in their sexual relationships.

core issues to the participants' vulnerability to HIV infection.

earned an average of M800 (approximately US\$80) per month.

**4.2 Knowledge about HIV and AIDS and HIV prevention services** 

in stable sexual relationships, who worked in the textile industry. The goal was to help participants develop the knowledge, attitudes, beliefs and life-skills required to engage in healthy behaviours that provide a buffer from HIV risk factors.

As part of the national response to the AIDS epidemic, the Government of Lesotho has adopted a multi-sectoral approach to address HIV and AIDS in the thematic areas of prevention; treatment, care and support; impact mitigation; and management and coordination. However, lack of a coordinated and adequately resourced response strategy for almost two decades of the epidemic led to the epidemic spreading and deepening poverty. PSCAAL was therefore implemented by CARE South Africa-Lesotho to enhance the response of the private sector to HIV and AIDS as part of CARE's strategy to address the epidemic as a developmental problem (Colvin, Lemmon & Naidoo, 2006).

## **3. Methodology**

#### **3.1 Study design**

The data used are drawn from the results of a cross-sectional knowledge, attitudes, beliefs and practices study conducted between April and June 2008 among female workers in two textile factories that had participated in the PSCAAL programme in the Lesotho capital, Maseru. The study was done as part of the CARE's *'Gender, Sex and Power'* project - a research project undertaken to understand how strategies to reduce risk and promote empowerment of women were creating durable changes in their health behaviour (CARE International, 2007).

#### **3.2 Data collection**

Data was collected using a combination of quantitative and qualitative methods, namely:


Method triangulation was pursued by following up in focus groups and key informant interviews issues which workers raised in one-to-one interviews. For example, questions about HIV risk and access to treatment for people living with HIV and a range of factors which could influence access were pursued with different sources. This approach helped to validate the data across different sources and contexts of interviewing.

## **3.3 Data analysis**

62 Understanding HIV/AIDS Management and Care – Pandemic Approaches in the 21st Century

in stable sexual relationships, who worked in the textile industry. The goal was to help participants develop the knowledge, attitudes, beliefs and life-skills required to engage in

As part of the national response to the AIDS epidemic, the Government of Lesotho has adopted a multi-sectoral approach to address HIV and AIDS in the thematic areas of prevention; treatment, care and support; impact mitigation; and management and coordination. However, lack of a coordinated and adequately resourced response strategy for almost two decades of the epidemic led to the epidemic spreading and deepening poverty. PSCAAL was therefore implemented by CARE South Africa-Lesotho to enhance the response of the private sector to HIV and AIDS as part of CARE's strategy to address the

The data used are drawn from the results of a cross-sectional knowledge, attitudes, beliefs and practices study conducted between April and June 2008 among female workers in two textile factories that had participated in the PSCAAL programme in the Lesotho capital, Maseru. The study was done as part of the CARE's *'Gender, Sex and Power'* project - a research project undertaken to understand how strategies to reduce risk and promote empowerment of women were creating durable changes in their health behaviour (CARE

Data was collected using a combination of quantitative and qualitative methods, namely: i. *Interviews*. These entailed the administering of questionnaires designed to collect information on the female workers' demographic and socio-economic characteristics, as well as their awareness of HIV and AIDS; uptake of HIV testing; decision-making in sexual relationships; gender equality beliefs; and sense of self-efficacy. Interviews were conducted in the vernacular (Sesotho), and respondents were selected using purposive sampling, based in the consent and availability of the workers during their lunch break and after work in the evenings. This sampling procedure yielded a total of 186

ii. *Focus group discussions*. A total of four focus group discussions (FGDs), two in each factory, were conducted. In each factory, one group consisted of with women who participated in the peer education programme (including peer educators) and those who did not. Each group had seven participants who were recruited with the assistance of the peer educators. The purpose of the FGDS was to enable women discuss what they considered as important practices and the factors that produce the reported

iii. *Key informant interviews*. These entailed semi-structured interviews with service providers who worked with CARE during the time of PSCAAL, human resource managers of the studied factories, personnel officers who were also HIV and AIDS focal persons at the workplace, and a health care provider in an onsite clinic at one of the factories where PSCAAL had peer education activities. These interviews were aimed at

obtaining an outsider's perspective on HIV risk in these settings.

healthy behaviours that provide a buffer from HIV risk factors.

**3. Methodology 3.1 Study design** 

International, 2007).

**3.2 Data collection** 

respondents.

behaviours following a guided conversation.

epidemic as a developmental problem (Colvin, Lemmon & Naidoo, 2006).

The data analysis was guided by the main goal of the study: to understand if there were differences between women who participated in PSCAAL's peer education programme (PEP) at the workplace and those who did not participate in the PEP, with particular respect to the kind of critical decisions related to the prevention of HIV infection that the different categories of women make in their sexual relationships.

Quantitative analysis using SPSS provided characterization of the studied population in terms of the following domains: socio economic and household characteristics, work and finances; HIV and AIDS awareness; HIV testing; access to care; stigma and discrimination; decision making in sexual relationships; gender equality beliefs and norms; gender violence; self efficacy and sense of community. Univariate analyses were used to show patterns in the data, while bivariate analyses were carried out to determine associations between the independent variable (participation in the PEP) and selected dependent variables within the specified domains. Qualitative data from the FGDs and the key-informant interviews was analysed thematically. The qualitative and quantitative results were synthesized to illustrate core issues to the participants' vulnerability to HIV infection.

## **4. Findings**

## **4.1 Study population**

Table 1 shows descriptive statistics for the study population. The key findings are that the majority (126 of the 186 women who were interviewed) had participated in the PEP, and were young, with over 70% aged below 35 years. Over half (51.6%) of the PEP participants were married, compared with 36.7% of non-participants. There was no difference between PEP participants and non-participants in terms of educational attainment: majority (61.9% and 61.7% respectively), had secondary school education and above, while about 38% of each sub-group had primary education or less. More than 70% of women in the two groups earned an average of M800 (approximately US\$80) per month.

## **4.2 Knowledge about HIV and AIDS and HIV prevention services**

Sound knowledge about HIV has been widely documented as an essential pre-requisite albeit, often insufficient, condition for adoption of behaviours that reduce the risk of HIV transmission (UNAIDS 2009). It was therefore expected that the impact of the PEP's component of raising HIV and AIDS awareness among the female textile workers would be reflected in a high number of PEP participations who had knowledge about the epidemic and showed the ability to apply the information obtained in ways which prevented HIV infection.

The study results showed that, overall, knowledge about HIV and AIDS was high among all workers, with 99.2% of PEP participants stating that they had ever heard of HIV or AIDS. The corresponding figure for non-participants was 96.6 %. Although the results were not

The Role of the Private Sector

*husband… (Non-PEP focus group)* 

1. Information on HIV and AIDS\*\*

and services, by PEP participation

2009). Table 3 shows these results.

2. Condoms\*\* 3. VCT services\*

6. ARVs\*\*

**Total (%) (N)** 

Note: p<0.05

participation

AIDS services such as condoms and VCT services (Table 2)

4. Health monitoring services for HIV and AIDSNS 5. Medical treatment for opportunistic infectionsNS

Note: \*:p<0.000 \*\* p<0.05 NS: Not statistically significant

in HIV and AIDS Interventions in Developing Countries: The Case of Lesotho 65

Although women in focus groups for non-PEP also displayed similar knowledge about prevention of HIV infection, their discussions also indicated a strong inclination to take their social and cultural roles into consideration when they make decisions in sexual relationships. *An empowered woman is a woman who looks after the needs of her children, for example, who sees that her children are properly fed and well clothed, especially during cold winter. A woman who looks after the affairs of her family; who takes good care of her husband and children … who does not wash her linen in public, who respects her husband and humbles herself and discusses things with* 

Analysis of the quantitative data also suggested that women who had participated in the PEP were significantly more likely to know where to obtain most of the essential HIV and

**HIV/AIDS service Participants Non-Participants** 

**Total (N) 126 60** 

Table 2. Proportion of sample who know where to obtain essential HIV/AIDS information

Furthermore, PEP participants were also more likely than non-participants (97.6% and 91.7% respectively) to be of the correct view that knowing one's HIV status was imperative. While this result was not statistically significant, the advanced reasons were significant, with those who had participated in the PEP more likely to state the more important advantages of HIV testing: to protect oneself and to prevent infecting others (UNAIDS,

**Reason Participants Non-Participants**  So that I can take care of myself 55.2 40.0 To avoid being infected 8.0 10.0 To avoid infecting sexual partners 7.2 3.3 So that I can live longer 8.8 6.7 Avoid mother-to-child transmission 3.2 3.3 Other 17.6 36.7

Table 3. Percentage distribution of sample by perceived importance of HIV testing, and PEP

**100 125**  81.0 93.7 92.9 79.4 81.0 91.3 61.7 85.0 68.3 65.0 71.7 71.2

**100 60** 


Table 1. Percentage distribution of sample by selected background characteristics

statistically significant, discussions with PEP participants suggested that they tended to have more accurate information and had developed a particular consciousness about HIV and AIDS which helped them behave differently by avoiding risk behaviours and being proactive in obtaining care services and support. For example, one of the interviewed peer educators identified the differences between PEP and non-PEP participants as the varying breadth and depth of information which, for the former, included other health issues not just HIV and AIDS, risk factors such as intimate partner violence and women abuse; as well as the ability to apply the acquired knowledge about HIV transmission and prevention in their intimate relationships.

*"It has helped me a lot because I have acquired a lot of privileged information. For example, I know that condoms are not only used as a protection against HIV/AIDS and as a means of birth control, but can also be used to prevent transmission of STIs…Some [non-peer education participants] might have knowledge, but most might not… For example, if I am married to an abusive husband who does not treat me well, I know where I can go to get help" (Peer Educator, PEP participants' focus group).* 

Although women in focus groups for non-PEP also displayed similar knowledge about prevention of HIV infection, their discussions also indicated a strong inclination to take their social and cultural roles into consideration when they make decisions in sexual relationships.

*An empowered woman is a woman who looks after the needs of her children, for example, who sees that her children are properly fed and well clothed, especially during cold winter. A woman who looks after the affairs of her family; who takes good care of her husband and children … who does not wash her linen in public, who respects her husband and humbles herself and discusses things with husband… (Non-PEP focus group)* 

Analysis of the quantitative data also suggested that women who had participated in the PEP were significantly more likely to know where to obtain most of the essential HIV and AIDS services such as condoms and VCT services (Table 2)


Note: \*:p<0.000 \*\* p<0.05 NS: Not statistically significant

Table 2. Proportion of sample who know where to obtain essential HIV/AIDS information and services, by PEP participation

Furthermore, PEP participants were also more likely than non-participants (97.6% and 91.7% respectively) to be of the correct view that knowing one's HIV status was imperative. While this result was not statistically significant, the advanced reasons were significant, with those who had participated in the PEP more likely to state the more important advantages of HIV testing: to protect oneself and to prevent infecting others (UNAIDS, 2009). Table 3 shows these results.


Note: p<0.05

64 Understanding HIV/AIDS Management and Care – Pandemic Approaches in the 21st Century

**Characteristic Participants Non-Participants** 

15.1 31.0 25.4 20.6 7.9 0.8 37.3 35.7 23.8 2.4 20.6 51.6 15.1 12.7 52.8 1.6 39.0 6.5 82.4 16.8 0.8

**100 126** 

Table 1. Percentage distribution of sample by selected background characteristics

statistically significant, discussions with PEP participants suggested that they tended to have more accurate information and had developed a particular consciousness about HIV and AIDS which helped them behave differently by avoiding risk behaviours and being proactive in obtaining care services and support. For example, one of the interviewed peer educators identified the differences between PEP and non-PEP participants as the varying breadth and depth of information which, for the former, included other health issues not just HIV and AIDS, risk factors such as intimate partner violence and women abuse; as well as the ability to apply the acquired knowledge about HIV transmission and prevention in

*"It has helped me a lot because I have acquired a lot of privileged information. For example, I know that condoms are not only used as a protection against HIV/AIDS and as a means of birth control, but can also be used to prevent transmission of STIs…Some [non-peer education participants] might have knowledge, but most might not… For example, if I am married to an abusive husband who does not treat me well, I know where I can go to get help" (Peer Educator, PEP participants' focus group).* 

20.0 28.3 23.3 15.0 13.3 1.7 36.7 46.7 13.3 1.7 35.0 36.7 15.0 13.3 48.3 1.7 43.3 6.7 73.3 26.7 0.0

**100 60** 

**Age Group (years)**  18-25 26-29 30-34 35-39 40+ **Highest Education** 

**Marital Status** 

Never attended school Primary school Secondary school High school Post-high school

Divorced/Separated/Deserted

Administrator/receptionist

Never married Married

Skilled Worker

Less than M800 M800-M1200 More than M1200

their intimate relationships.

Widowed

/personnel Unskilled worker Supervisor

**Position in Factory** 

**Monthly Wage** 

**Total (%) (N)** 

> Table 3. Percentage distribution of sample by perceived importance of HIV testing, and PEP participation

The Role of the Private Sector

**Strongly agreed/agreed** 

HIV positive

tested HIV positiveNS

friend to test for HIV **Strongly disagreed/disagreed** 

friend had HIV/AIDSNS

about my HIV statusNS

of themselves\*\*

positiveNS

access unprotected sex.

**Total (%) N** 

HIV infection is a terminal illnessNS

I would tell a fellow support group member if I

I would tell a member of my family if I tested

I can talk freely to others about HIV and AIDS I can encourage my family member or close

HIV/AIDS is punishment for bad behaviourNS I would be ashamed if a family member/close

People with HIV or AIDS should feel ashamed

I would not tell anyone if I tested HIV

I would be worried to take ARVs in the presence of other people who don't know

women materially. The following statements illustrate:

Note: \*\* p<0.05 NS: Not statistically significant

to HIV and AIDS, and PEP participation

in HIV and AIDS Interventions in Developing Countries: The Case of Lesotho 67

**Indicators of attitudes to HIV and AIDS Participants Non-Participants** 

Table 5. Percentage of sample who agreed and disagreed with various indicators of attitudes

Although the PEP participants were undoubtedly more aware that practising safer sex by using condoms consistently prevented HIV transmission, evidence from the key informant interviews and focus groups, however, shows that many of these women, just like their counterparts who did not participate in the PEP, are often placed at a higher risk of HIV infection through inconsistent use of condoms. For example, a nurse clinician mentioned that there were many workers who sought treatment for sexually transmitted infections (STI) because they did not use condoms consistently and re-infections were common. Overall condoms were perceived as an important factor which could influence women's access to material support or stability in their marriage and other sexual relationships. It was also alleged that there was a tendency among some men to use material support as bait to

In the focus group discussions, the women workers were generally depicted as constantly in search of men who were prepared to assist them financially. These men—many of whom belonged to similarly vulnerable communities such as the taxi industry, uniformed services and migrant mine workers—were powerful in relationships; they cohabited with their lovers and dictated the use of a condom – usually insisting on non-use if they supported

*Women mainly see policemen, soldiers and taxi drives with the expectation that police and army men earn a lot of money…. Taxi drivers are simply favoured because they provide lift to and from work.* 

77.8 71.0 78.3 74.6

95.0

84.7 93.3

78.0 86.7

88.3

55.9

60.0

**100 60** 

91.3

92.7 93.6

82.5 86.5

89.7

69.0

71.8

**100 126** 

#### **4.3 HIV testing**

Consistent with their relatively greater recognition of the importance of testing, PEP participants were significantly more likely to have had tested for HIV and also to have used an STI treatment centre in the six months preceding the survey (Table 4).


Note: \*\* p<0.05 NS: Not statistically significant

Table 4. Proportion of sample who know at least one source of HIV/STI service and who utilized an HIV/STI service in the last six months by PEP participation

The above results were further affirmed in the key informant interviews and FGDs. For example:

*"There is increase in the uptake of HIV testing among the workforce; workers are interested in knowing their HIV status following their exposure to peer education. More people come early even before they fall ill. Also because things have changed in HIV care – rapid testing ensures they know their status immediately. They make follow-ups after testing HIV positive and they willingly seek CD4 count assessment" (VCT service provider, key informant interview)* 

*We have lists of many people who wish to test because after talking to them, they now have understanding about the infection…It is easy for us even to tell our partners that we went for HIV test because we talk about it in our families (Participant, PEP participants' focus group)* 

#### **4.4 Attitudes towards HIV**

In general there seemed to be a positive attitude towards HIV and AIDS among the workers interviewed (both PEP participants and non-participants). For example, over 70% agreed with the statement that HIV was a terminal illness (Table 5) as opposed, presumably, to being a 'death sentence'. Other indicators of positive attitudes include high proportion who stated their ability to talk to various people about HIV and AIDS, their willingness to inform family members in case of a positive test, as well as the relatively high proportions that disagreed, or strongly disagreed, with negative statements such as "HIV/AIDS is punishment for bad behaviour" and "people with HIV or AIDS should feel ashamed of themselves", among others. It is noteworthy, however, that women who participated in the PEP were generally less likely to agree with negative statements, even though the results were not statistically significant.

#### **4.5 Condom use**

Condom use is an important measure of protection against HIV. Its maximum protective effect is, however, achieved when the use is consistent rather than occasional (UNAIDS, 2009). The study results show that women who participated in the PEP were significantly more likely than those who did not participate to be the final decision-makers regarding condom use in their sexual relations. They were also more likely to be confident in obtaining condoms without feeling embarrassed; to refuse to have sex with their partners without a condom; and to suggest an HIV test to their partners and others (Table 6).

The Role of the Private Sector in HIV and AIDS Interventions in Developing Countries: The Case of Lesotho 67

66 Understanding HIV/AIDS Management and Care – Pandemic Approaches in the 21st Century

Consistent with their relatively greater recognition of the importance of testing, PEP participants were significantly more likely to have had tested for HIV and also to have used

> 9.3 0.0 11.1

**43 13 9** 

**HIV/AIDS service Participants Non-Participants Total** 

Table 4. Proportion of sample who know at least one source of HIV/STI service and who

The above results were further affirmed in the key informant interviews and FGDs. For

*"There is increase in the uptake of HIV testing among the workforce; workers are interested in knowing their HIV status following their exposure to peer education. More people come early even before they fall ill. Also because things have changed in HIV care – rapid testing ensures they know their status immediately. They make follow-ups after testing HIV positive and they willingly seek* 

*We have lists of many people who wish to test because after talking to them, they now have understanding about the infection…It is easy for us even to tell our partners that we went for HIV* 

In general there seemed to be a positive attitude towards HIV and AIDS among the workers interviewed (both PEP participants and non-participants). For example, over 70% agreed with the statement that HIV was a terminal illness (Table 5) as opposed, presumably, to being a 'death sentence'. Other indicators of positive attitudes include high proportion who stated their ability to talk to various people about HIV and AIDS, their willingness to inform family members in case of a positive test, as well as the relatively high proportions that disagreed, or strongly disagreed, with negative statements such as "HIV/AIDS is punishment for bad behaviour" and "people with HIV or AIDS should feel ashamed of themselves", among others. It is noteworthy, however, that women who participated in the PEP were generally less likely to agree with negative statements, even though the results

Condom use is an important measure of protection against HIV. Its maximum protective effect is, however, achieved when the use is consistent rather than occasional (UNAIDS, 2009). The study results show that women who participated in the PEP were significantly more likely than those who did not participate to be the final decision-makers regarding condom use in their sexual relations. They were also more likely to be confident in obtaining condoms without feeling embarrassed; to refuse to have sex with their partners without a

condom; and to suggest an HIV test to their partners and others (Table 6).

*test because we talk about it in our families (Participant, PEP participants' focus group)* 

90.7 100.0 88.9

an STI treatment centre in the six months preceding the survey (Table 4).

utilized an HIV/STI service in the last six months by PEP participation

*CD4 count assessment" (VCT service provider, key informant interview)* 

**4.3 HIV testing** 

Tested for HIV\*\* Used STI services\*\* Used TB servcesNS

**4.4 Attitudes towards HIV** 

were not statistically significant.

**4.5 Condom use** 

example:

Note: \*\* p<0.05 NS: Not statistically significant


Note: \*\* p<0.05 NS: Not statistically significant

Table 5. Percentage of sample who agreed and disagreed with various indicators of attitudes to HIV and AIDS, and PEP participation

Although the PEP participants were undoubtedly more aware that practising safer sex by using condoms consistently prevented HIV transmission, evidence from the key informant interviews and focus groups, however, shows that many of these women, just like their counterparts who did not participate in the PEP, are often placed at a higher risk of HIV infection through inconsistent use of condoms. For example, a nurse clinician mentioned that there were many workers who sought treatment for sexually transmitted infections (STI) because they did not use condoms consistently and re-infections were common. Overall condoms were perceived as an important factor which could influence women's access to material support or stability in their marriage and other sexual relationships. It was also alleged that there was a tendency among some men to use material support as bait to access unprotected sex.

In the focus group discussions, the women workers were generally depicted as constantly in search of men who were prepared to assist them financially. These men—many of whom belonged to similarly vulnerable communities such as the taxi industry, uniformed services and migrant mine workers—were powerful in relationships; they cohabited with their lovers and dictated the use of a condom – usually insisting on non-use if they supported women materially. The following statements illustrate:

*Women mainly see policemen, soldiers and taxi drives with the expectation that police and army men earn a lot of money…. Taxi drivers are simply favoured because they provide lift to and from work.* 

The Role of the Private Sector

*attitudes and views" (Peer educator)* 

Rented house/backyard

Insurance/Funeral policy

Table 7. Percentage distribution of sample by selected socioeconomic indicators

Parent's house Cohabiting Relative's house

**Main responsibility in household** 

Other

Food Clothing Rent Health care Transport School fees

**Total (%) (N)** 

**Number of children**  0 1 2 3+ **Number of dependents**  0 1 2 3 4 5 6+ **Type of accommodation**  Own house

*participants)* 

in HIV and AIDS Interventions in Developing Countries: The Case of Lesotho 69

exploitation through the need to trade or sell sex, or to engage in multiple concurrent relationships, in order to survive (Epstein, 2007). Indeed some women entered into

*"We earn very little money here, this is what makes us easy prey and exposed to HIV infection. For example, if a man tells you he will drive on Mpilo Boulevard (an expression used to describe unprotected sex), just because you are at the mercy of this person, you agree to have unsafe sex in expectation that he will not withhold his money or other favours" (FG1- non peer education* 

*"There's even a common saying that if a man visits his girlfriend, especially those who work in the factories, he should use a braai pack (frozen chicken portions) to knock on the girlfriend's door. This compromised many women's life because they could not refuse to have unprotected sex for fear that the boyfriend would leave. But our education and encouragement have changed a lot of women's* 

> 18.4 35.1 27.0 19.5 2.2 8.6 12.4 20.0 20.5 13.5 22.7 19.9 66.6 9.7 0.5 1.6 1.6 96.7 75.5 59.8 35.9 41.3 58.2 39.1

**100 186** 

relationships with the expectation that men would augment their budgets:

**Characteristic %** 


Note: \* p<0.000 \*\* p<0.050 NS: Not statistically significant n: total

Table 6. Proportion of sample by selected indicators of sexual decision-making and negotiation, by condom use in last six months

*The problem is that if these men refuse to use condoms, the women cannot refuse them sex because they have received material support from them…but the women here are also promiscuous (Focus group, peer education participants).* 

*"We don't use condoms; that is why there are a lot of unwanted pregnancies, STIs and HIV/AIDS. More often, when a man dies of AIDS, the wife also follows and the girlfriends too" (FG2 -non peer education).* 

The poor economic situation of the textile female workers as shown by low monthly wages (Table 1) and myriad responsibilities they had within the household (see Table 7) provide part of the answer to why their knowledge about HIV transmission did not produce the intended behavioural changes. A compelling body of evidence has shown that women living in poverty, or facing the threat of poverty, may be particularly vulnerable to sexual

**Rarely or Never**

> 18.9 58.3 23.1

> 24.5 38.5 41.7

> 17.9

25.0

68.4

18.8 36.4 66.7

**All or most of the time** 

> 67.6 16.7 53.8

> 56.6 30.8 58.3

> 66.1

50.0

10.5

60.9 18.2 16.7

Note: \* p<0.000 \*\* p<0.050 NS: Not statistically significant n: total

negotiation, by condom use in last six months

*group, peer education participants).* 

**Sometimes**

> 13.5 25.0 23.1

> 18.9 30.8 0.0

> 16.1

25.0

21.1

20.3 45.5 16.7

Table 6. Proportion of sample by selected indicators of sexual decision-making and

*The problem is that if these men refuse to use condoms, the women cannot refuse them sex because they have received material support from them…but the women here are also promiscuous (Focus* 

*"We don't use condoms; that is why there are a lot of unwanted pregnancies, STIs and HIV/AIDS. More often, when a man dies of AIDS, the wife also follows and the girlfriends too" (FG2 -non peer* 

The poor economic situation of the textile female workers as shown by low monthly wages (Table 1) and myriad responsibilities they had within the household (see Table 7) provide part of the answer to why their knowledge about HIV transmission did not produce the intended behavioural changes. A compelling body of evidence has shown that women living in poverty, or facing the threat of poverty, may be particularly vulnerable to sexual

**Condom use in last six months Participant Non-Participant** 

> **All or most of the time**

> > 42.9 40.0 33.3

> > 40.9 22.2 40.0

> > 41.7

28.6

20.0

52.9 12.5 0.0

**Sometimes**

> 50.0 20.0 46.7

> 45.5 44.4 40.0

> 50.0

28.6

40.0

32.4 62.5 33.3 **Rarely or Never** 

> 7.1 40.0 20.0

> 13.6 33.3 20.0

> > 8.3

42.9

40.0

14.7 25.0 67.7 *n* 

14 5 15

22 9 5

24

7

5

34 8 3

*N* 

37 12 26

53 13 12

56

4

19

64 11 18

**Indicator of decisionmaking in sexual relationships** 

**Final decision-maker on** 

It's a joint decision **Can refuse sex if not feeling wellNS** Always Sometimes Never

**Likely reaction if partner** 

Refuse to have sex with

Persuade him to use a

Surrender and agree to have sex without

**Can convince partners to** 

**refuses condom\*** 

him

condom

condom

**use condoms\***  Always Sometimes Never

*education).* 

**condom use\*\***  Participant Partner

exploitation through the need to trade or sell sex, or to engage in multiple concurrent relationships, in order to survive (Epstein, 2007). Indeed some women entered into relationships with the expectation that men would augment their budgets:

*"We earn very little money here, this is what makes us easy prey and exposed to HIV infection. For example, if a man tells you he will drive on Mpilo Boulevard (an expression used to describe unprotected sex), just because you are at the mercy of this person, you agree to have unsafe sex in expectation that he will not withhold his money or other favours" (FG1- non peer education participants)* 

*"There's even a common saying that if a man visits his girlfriend, especially those who work in the factories, he should use a braai pack (frozen chicken portions) to knock on the girlfriend's door. This compromised many women's life because they could not refuse to have unprotected sex for fear that the boyfriend would leave. But our education and encouragement have changed a lot of women's attitudes and views" (Peer educator)* 


Table 7. Percentage distribution of sample by selected socioeconomic indicators

The Role of the Private Sector

out (Nelson, 2005).

most relevant for sub-Saharan African:

in HIV and AIDS Interventions in Developing Countries: The Case of Lesotho 71

competencies and assets with other sectors; (4) make strategic philanthropic donations; (5) help build effective institutions; and (6) engage in public policy dialogue. Given the findings of this study on which this chapter is based, three of these building blocks are, perhaps, the

1. *Demonstrate good workplace programmes to other companies*. Workplace programmes in developing countries focus primarily in promoting behaviour change (Sai, 1995) through for example, creating awareness, and encouraging the workforce to undertake HIV testing and seek treatment. While these programmes are critical, they may have limited benefits in sub-Saharan Africa given the evidence that structural socio-economic and cultural factors are the key pathways of HIV transmission in the region. Therefore in addition to enhancing workers' health literacy and ability to obtain, process and understand basic health information and services needed to make appropriate health decisions (Sanders, 2007) in the context of HIV and AIDS, management in industries that employ women need to consider the broader socio-cultural factors that influence women's vulnerability. For example, to the extent that gender relations are to a large extent influenced by women's low economic status, female workers should be empowered economically by paying wages that take into account the cost of living in a country. Employers could also consider developing investment funds with the employees. There is also need to strengthen monitoring and evaluation of workplace programmes (Weston, et al, 2007) and to share the evidence of effectiveness with other companies particularly small and medium enterprises and those that are just straying

2. *Share core competencies and assets*. Unique skills and capacities such as logistics and distribution resource management, communication and marketing that can be used effectively and creatively to respond to HIV and AIDS in behaviour change campaigns, procurement and distribution of commodities and information materials, and improved management of programmes. The private sector can share these competencies through effective partnerships with civil society, community organisations and the public sector. Not only will such partnerships contribute to the private sector's economic case for tackling HIV and AIDS, but they also have a business case. Studies indicate that employees strongly appreciate when their company and senior management are involved in social causes, and indeed, many companies working in high HIV prevalence countries have improvements in productivity, morale and staff turnover

when they take an active, visible role in the AIDS response (UNAIDS, 2011).

3. *Help build effective institutions*, particularly Business Coalitions against HIV and AIDS. These Coalitions can be described as organisations of business that work together to address the issue of HIV and AIDS, and may include sectoral associations, chambers of commerce, labour unions, employer federations and other groups of companies that have committed themselves to addressing the issue of HIV and AIDS (Sidhu, 2008). National Business collation remove the need for private sector companies to act in isolation by providing a forum for cooperation and partnership, serving as a interlocutors between the private and public sector responses to HIV and AIDS (Nankobogo, 2007; Sidhu, 2008). Although Business Coalitions are a relatively new concept around the world, and still need more support to strengthen their organizations and fulfill their visions, their positive impact is already being felt in some countries (Sidhu, 2008). Therefore, given that as of January 2008, there were 25 national Business Coalitions in Africa and four were scheduled for launch in 2008/2009 (see Sidhu, 2008),

## **5. Conclusion**

The PSCAAL programme was intended to influence behaviour change among women who worked in the textile industry through an HIV and AIDS peer education and support programme which provided information and voluntary counselling and testing services. The overall pattern that emerged from this study indicates that most women who participated in the programme had relatively higher knowledge about HIV and AIDS, and seemed to be more aware of the sources of essential HIV and AIDS prevention and treatment services, as well as the importance of preventive behaviours such as HIV testing and consistent condom use. Despite these achievements, the skills the women learned in the peer education programmes do not seem to have trickled down to the traditionally entrenched gender beliefs, or to have enhanced the programme participants' self efficacy in their sexual relationships. For example, majority of women who participated in peer education programmes were, just like their counterparts who did not participate in the programme, not the main decision-makers regarding condom use; their partners were. By the same token, more than a third of all women (both participants and non-participants) stated that they would surrender if their partners refused to use a condom, and their main reason was that they feared that their partners would use violence. Qualitative evidence shows that this can be largely attributed to skewed gender relations and women's lower economic status, as well as individualized approaches that target women and disregard the socioeconomic context of heterosexual relationships through which HIV infection mostly occur. These barriers have been noted in other sub-Saharan countries that have similarly high HIV prevalence like Lesotho, and have also been noted in the Millennium Project task Force report which stated, in part, that "Prevention and care programs will fail if they ignore the underlying determinants of the epidemic: poverty; gender inequality; and social dislocation" (Nelson, 2005:20).

Against this background, it is imperative for HIV and AIDS interventions in African countries to be framed with an in-depth understanding of the multifaceted nature of the contextual factors that increase HIV vulnerability, and build women's and families' resilience to the socioeconomic factors which influenced their vulnerability to HIV transmission and the impact of AIDS. Private companies and business have a unique role to play in this regard since they interact with people living and affected by HIV and AIDS directly through employment relations, and indirectly through customers, employees' families, and community members (Nankobogo, 2007). It should be recognised, however, that the core business of many private sector organisations is not HIV and AIDS, and their range of activity often extends beyond the scope of national HIV and AIDS strategic framework. As Nelson (2005:11) cautions, "The core business of business is, and must remain, the profitable production of goods and services … (and) it is important not to create unrealistic expectations of what activities business can undertake in the fight against HIV/AIDS".

Nonetheless, the private sector can still make meaningful contributions that can help in achieving greater scale in national and community-level efforts against HIV infection and AIDS (Nelson, 2005). Drawing on the International Business leaders Forum Spheres of influence model and the Global Business Coalition's business action model, Nelson summarised the various ways in which the private sector can be involved into six 'building blocks of corporate engagement": (1) demonstrate good workplace programmes to other companies; (2) Extend internal programmes along corporate value chains; (3) share core

The PSCAAL programme was intended to influence behaviour change among women who worked in the textile industry through an HIV and AIDS peer education and support programme which provided information and voluntary counselling and testing services. The overall pattern that emerged from this study indicates that most women who participated in the programme had relatively higher knowledge about HIV and AIDS, and seemed to be more aware of the sources of essential HIV and AIDS prevention and treatment services, as well as the importance of preventive behaviours such as HIV testing and consistent condom use. Despite these achievements, the skills the women learned in the peer education programmes do not seem to have trickled down to the traditionally entrenched gender beliefs, or to have enhanced the programme participants' self efficacy in their sexual relationships. For example, majority of women who participated in peer education programmes were, just like their counterparts who did not participate in the programme, not the main decision-makers regarding condom use; their partners were. By the same token, more than a third of all women (both participants and non-participants) stated that they would surrender if their partners refused to use a condom, and their main reason was that they feared that their partners would use violence. Qualitative evidence shows that this can be largely attributed to skewed gender relations and women's lower economic status, as well as individualized approaches that target women and disregard the socioeconomic context of heterosexual relationships through which HIV infection mostly occur. These barriers have been noted in other sub-Saharan countries that have similarly high HIV prevalence like Lesotho, and have also been noted in the Millennium Project task Force report which stated, in part, that "Prevention and care programs will fail if they ignore the underlying determinants of the epidemic: poverty; gender inequality; and social

Against this background, it is imperative for HIV and AIDS interventions in African countries to be framed with an in-depth understanding of the multifaceted nature of the contextual factors that increase HIV vulnerability, and build women's and families' resilience to the socioeconomic factors which influenced their vulnerability to HIV transmission and the impact of AIDS. Private companies and business have a unique role to play in this regard since they interact with people living and affected by HIV and AIDS directly through employment relations, and indirectly through customers, employees' families, and community members (Nankobogo, 2007). It should be recognised, however, that the core business of many private sector organisations is not HIV and AIDS, and their range of activity often extends beyond the scope of national HIV and AIDS strategic framework. As Nelson (2005:11) cautions, "The core business of business is, and must remain, the profitable production of goods and services … (and) it is important not to create unrealistic expectations of what activities business can undertake in the fight against

Nonetheless, the private sector can still make meaningful contributions that can help in achieving greater scale in national and community-level efforts against HIV infection and AIDS (Nelson, 2005). Drawing on the International Business leaders Forum Spheres of influence model and the Global Business Coalition's business action model, Nelson summarised the various ways in which the private sector can be involved into six 'building blocks of corporate engagement": (1) demonstrate good workplace programmes to other companies; (2) Extend internal programmes along corporate value chains; (3) share core

**5. Conclusion** 

dislocation" (Nelson, 2005:20).

HIV/AIDS".

competencies and assets with other sectors; (4) make strategic philanthropic donations; (5) help build effective institutions; and (6) engage in public policy dialogue. Given the findings of this study on which this chapter is based, three of these building blocks are, perhaps, the most relevant for sub-Saharan African:


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## **6. Acknowledgments**

The research project on which this chapter is based was funded by the Ford Foundation and commissioned by CARE South Africa-Lesotho to the Human Sciences Research Council of South Africa, The authors wish to thank Ms Palesa Ndabe for supervising the collection and data capturing in Lesotho.

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there should be increased advocacy for African business involvement in HIV and AIDS prevention through participation in local business coalitions. Through these coalitions private sector companies can for example, be linked with AIDS service organisations that are more experienced and better equipped to provide a range of HIV and AIDS related services such as information and prevention campaigns, and mitigation and care measures –such as medical and home-based care and financial advice—for those


**Part 2** 

**Prevention of Mother to Child Transmission of HIV (PMTCT)** 

