Michelle Calvarese, California State University, Fresno, mcalvare@csufresno.edu

Sherry Bame, Texas A & M University, sbame@tamu.edu

Bakama BakamaNume, Prairie View A & M University, bbbakamanume@pvamu.edu

Abstract

This study examined the case of Uganda’s The AIDS Support Organization (TASO) services and changes in their clients’ sexual behavior. This study used statistical analyses to investigate the relationship between socio-demographic characteristics of the general population and of TASO clients and correlate patterns of sexual behavior with use of TASO centers.  The first step of the analysis described the frequencies and proportions of the following variables within the TASO data set: Sex, Age, and Employment.  It was then determined by use of a ratio equation Z-test if the proportion of each category of the TASO data set differed from the proportion in the same category of the national AIDS data and the national census of the general population. Analysis for examining TASO client changes in safe-sex behavior, utilized data collected between May and August of 1997.  Analysis of socio-demographic characteristics found that high-risk groups among the TASO population appeared to be females in their late twenties and employed.  Analysis of case studies revealed that during the course of long term TASO care, 25 percent of patients changed their behavior from unprotected sex to abstinence.  The findings of this study supported the importance of TASO’s approach to care as a means of increasing safe-sex behaviors among HIV/AIDS patients.

Introduction

Sub-Saharan Africa has the highest AIDS prevalence rates in the world. The overall rate for the region has been steadily increasing over the past two decades and 60 percent of the global HIV population calls Sub-Saharan Africa home (WHO 1997; UNAIDS 2005).  Nevertheless, AIDS prevalence rates have dropped in a few East African nations (See Table 1).  Uganda’s rates dropped approximately 13 percent between 1993 and 2003 (STD/AIDS Control Program 1997; UNAIDS 2005).  This study examined the case of Uganda’s The AIDS Support Organization (TASO) services and changes in their clients’ sexual behavior. This study utilized unique primary data regarding AIDS patients’ behaviors and demographic characteristics in Uganda.  Although TASO’s model would not solve the underlying causes of this epidemic, it may offer an approach to support AIDS patients in coping with their remaining life and reducing risk for their loved ones.

Uganda’s Success Story

Many studies linked Uganda’s AIDS rates to changes in behavior (Genius 2005; Green 2006; Kaleeba 1997; Mbulaiteye et al. 2002, 2004; Pool 2006; Stoneburner 2002; Whitworth 2002).  However a recent study concluded that reductions in several communities of the Rakai district of Uganda are not necessarily linked to changes in sexual behavior.  There was no clear correlation between the AIDS rate and abstinence or number of sexual partners.  Some results showed that non-marital partners have actually increased, although condom use also increased (Wawer et al. 2005).  This recent study suggested that the reduction of AIDS is not linked to behavior at all, but rather to an increase in mortality; it also suggests that there may be a possible increase in rates in the coming years.

Studies that link behavior change to declining rates suggest that government and community support are extremely important.  Uganda’s government has had a long commitment to AIDS awareness and education.  It has been suggested that TASO has played a key role in ensuring education and supportive networks for those inflicted with AIDS (Kalibala 1989; Parkhurst 2002; Mugerwa et al. 1996).  As Mugerwa et al. (1996) stated, “Societal openness, a multisectoral approach by the government and innovative programmes, including large-scale HIV testing and counselling and the pioneering work of TASO, distinguish the Ugandan response to the epidemic” (Coutinho 2003; Mugerwa et al. 1996).
 

Table 1: HIV prevalence percentages over time (defined here as the percentage of men and women between the ages of 15 and 49 who are HIV positive). Source: Halloran, N. http:// www.AidsinAfrica.net.

USAIDS summarized the following key elements for having the most effect: (USAIDS 2002)

1.       High level community support with a multi-sectoral response.

2.       Decentralized planning and implementation for behavior change communication reaching both general population and key target groups.

3.       Increased number of interventions addressing both women and youth, along with their stigma and discrimination (this includes TASO).

4.       Religious leaders and faith based organizations being active on the front lines of the response to the epidemic.

5.       Uganda developing Africa’s first voluntary counseling and testing services.

6.       Condom social marketing has played a key but not a major role.

7.       Sexually transmitted infections control and prevention programs have recently increased emphasis.

8.       The most important determinant of the reduction of HIV incidence in Uganda appears to be a decrease in multiple sexual partnerships and networks.

TASO clinics have incorporated each of these elements into their mission. But can generalizations be made from the TASO model? The purpose of this study was to: 1) investigate whether TASO users differed demographically from the general population, and if so, in what ways; and 2) correlate patterns of sexual behavior risk with use of TASO centers. By understanding these factors, further studies can explore mechanisms to replicate the success of these clinics in stemming the spread of AIDS.

TASO in Uganda

History

In October 1986, TASO began as a non-profit organization consisting of a group of people gathering in homes to discuss HIV/AIDS.  The group included people from varying disciplines and occupations (Hampton 1992).   Noerine Kaleeba, a member of the original group, officially founded TASO in 1987 after she lost her husband, Chris, to AIDS (TASO 1995).    She stated that, “The idea of TASO originated from the example of the doctors and nurses who looked after Chris in Britain—the kindness and care they showed him, despite the fact that he was a foreigner and had AIDS.  We were also impressed by what we had seen in Britain…of the ‘buddy’ system of counseling” (Hampton 1992:4).  Currently there are eleven TASO centers located throughout Uganda.  These centers were formed to help the many people stricken with HIV//AIDS in Uganda and to change community attitudes and stigmas towards the virus and those who are afflicted with it.  While minor medical assistance is available from local hospitals, psychological help has not been readily available.  TASO attempts to fill that gap.  TASO also provides minor medical support and practical assistance to people with AIDS and their families.  Many who work at the centers are HIV positive.  Staff members serve as counselors and meet with clients as needed to discuss pertinent issues and help them cope with everyday stresses.  Home visits, as well as minor medical and food assistance, is available to those most in need.  TASO also works at the community level by organizing community counseling, as well as at the national and international level by training personnel and joining international efforts to combat HIV/AIDS.  TASO is now the largest indigenous NGO proving such services in Uganda.  As of 2005, 83,000 people have been registered and 22,000 receive ongoing support (TASO 2005).

TASO Goals

The thrust and motto of TASO is “Positive Living with AIDS” and this is stressed in each counseling session.  Positive living is a subjective term; however Hampton (1992) addressed what type of themes are discussed when referring to positive living.  First and foremost, positive living involves maintaining a positive attitude towards yourself and others.  This involves not blaming others for events or circumstances in your life and not feeling guilty or ashamed about circumstances in your life.  More specifically, TASO states (TASO 2005) that the following are encouraged to live positively with HIV/AIDS:
 

• Accept their diagnosis
• Seek prompt medical care
• Practice safer sex
• Continue to earn an income
• Plan for the families and dependants
• Seek counseling
• Maintain a balanced diet
• Have adequate sleep and exercise
• Continue with normal social activities
• Avoid harmful habits such as drinking alcohol and smoking

Study Hypotheses

The purpose of this study was to compare TASO client demographic characteristics and compare these characteristics with national AIDS data and national census data.  This would indicate whether TASO client data would be representative of AIDS patients nationally compared to the general population. This study then examined the length and nature of TASO’s services on the successful change in clients’ safe-sex behavior and theorized whether this AIDS treatment model could be widely implemented.  

It was first hypothesized that the majority of TASO clients will be female, compared to the proportion of AIDS patients in the population, possibly since males are more reluctant to visit TASO centers due to social stigmas.   It has also been found in recent literature that females are more likely to be infected.  F. Monk (1997) stated that in Uganda, the highest rates of HIV and AIDS occur in women aged 20-30, with many being infected in their teens, at an earlier age than men are.  In Kirunga’s (1997) study of Uganda’s Rakai district, she found more females than males in her sample.  Lastly, Kengeya-Kayondo (1996) found that overall rates were highest in females in her study of characteristics of seroconverters in rural Uganda. 

Second, it was hypothesized that the majority of TASO clients will be within the 15-49 age group, compared to the proportion of AIDS patients in the population. Sexual transmission is the primary means of HIV/AIDS spread in Africa (Caldwell and Caldwell, 1993). The 15-49 age group contains those that are most sexually active.  In a review of socio-cultural aspects of AIDS in Uganda, F. Monk (1997) found that the age group with the highest prevalence to be the 15-45 age group.

Third, it was also hypothesized that TASO clients who are employed will have higher rates than those unemployed, compared to the proportions in the general population. It has been found (Kirunga 1997) that those employed often have higher rates than unemployed in East Africa. This may partly be true due to occupations that may put people at higher risk such as truck drivers or those in the military who have been reported as more likely to have causal sexual contacts.

Last, it was hypothesized that there is a direct correlation between people who attend TASO clinics more frequently and the practice of safe sex. Although this study does not test the hypothesis that TASO treatment will cause behavior changes, it does provide unique longitudinal data to examine reported safe-sex behavior over time.  Once educated through TASO, clients are increasingly aware that unsafe sex practices raises their risk of infection and sero-conversion as well as increasing risk to their partner(s) and family.  Konde-Lule, et al. (1997) have noted a sharp increase in condom use as an outcome of AIDS prevention activities in Uganda such as TASO over the last 10 years.
 

Table 2: Summary of study hypotheses.

Methodology of the Study

Study Population

The Study Area

The focus for this study was the district of Kampala.  Kampala is the capital city of Uganda. Kampala district has a population of 1.2 million which concentrates approximately 5 percent of Uganda’s 24.2 million in one area (Uganda Bureau of Statistics 2002). Kampala is located on the northern shores of Lake Victoria and is the fastest growing area in the country.  It is connected to neighboring countries by road and rail networks and is also accessible by air and water. At the time of this study, Kampala had six major hospitals: Rubaga, Nsambya, Mengo, Kololo, Mulago and the Kisekka Foundation. The Catholic Church ran Rubaga and Nsambya Hospitals and Mengo Hospital was operated by the Church of Uganda.  Seventh Day Adventists privately ran the Kisekka Foundation Hospital. Mulago Hospital was the largest government run hospital and was located on Mulago Hill. TASO Mulago was located on the grounds on Mulago Hospital.  There was limited outreach between TASO and hospital resources.  Many clients only attended the hospital to determine their sero-status.

TASO Centers

TASO centers were the focus for HIV/AIDS services to clients and communities. Each TASO center had a manager who reported to TASO headquarters through the Planning and Development Department.  The center’s Executive Committees, comprised of local opinion leaders, oversaw the affairs of the centers.  Other staff included an administrator, counselor supervisions, a medical coordinator, a day center supervisor, nurses, clinicians, counselors, trainers and support staff (filing clerks, driver, secretary, cleaners).  Table 3 indicates the number of staff, which includes full-time, part-time and volunteers.  In some cases, updated staff data were not available.  In these cases, 1993 were used and are noted.

 

Table 3: Number of staff and clients by TASO center, 2005. Source: TasoUganda.org; TASO (1995) TASO Uganda: The Inside Story, Kampala, Uganda: TASO and Geneva: WHO.

The Mulago center was formed in November 1987, soon after the TASO idea was conceived.  It is the oldest model of TASO centers. It started to function in Noerine Kaleeba’s previous office (as principal of the physiotherapy school) and later expanded into neighboring rooms in the polio clinic provided by hospital administration.  The center now exists on its own premises erected by TASO on the Mulago hospital compound.  This building was funded by ActionAid, Uganda.  Due to the increase in clientele, donor money has contributed to the construction of a new building.

Time Period and Method of Selection of Data

Client data for this study were collected from medical files over a 13-week period between May 13, 1997 and August 10, 1997 in Uganda. Maintaining confidentiality of clients, over 1000 records were reviewed. Half of the records (N=500) were determined to have complete data appropriate for analysis (See Table 4).  This was not a random selection, but rather, a case study of all complete records that were reviewed from May 1996 to May 1997 at the TASO Mulago clinic, with names and contact information excluded.[1]  Individual files contained medical information such as diagnosis and treatment management, as well as socio-economic and psychological information.  Although the number of cases for longitudinal analysis was limited, this case study offered a unique opportunity for in-depth, longitudinal examination of the types of characteristics and changes that AIDS patients experienced during their encounters with TASO.

Table 4: Number of cases for each phase of study

Data Analysis

The first step of the analysis was to describe the frequencies and proportions of the following variables within the TASO data set: Sex, Age, Employment.  The next step was to determine if the proportion of each category of the TASO data set differed from the proportion in the same category of the national AIDS data and the national census of the general population. To accomplish the later task, this study utilized a ratio equation Z-test.

The analysis for the last hypothesis, examining TASO client changes in safe-sex behavior, utilized a quantitative approach using data for 452 cases collected between May and August of 1997.   Correlation tests were done between number of visits and behavior.  Each client was assigned a “condom use” value, which reflected his or her sexual practices.  This information was taken from each client’s counseling session forms.  One section of the counseling form reviewed the client’s sexual behavior since their last visit by the counselor placing a check mark next to one of the following: 1) No sex; 2) Always uses a condom; 3) Sometimes uses condoms; and 4) Never uses a condom.

A chi-square test was then used to test the associations between condom use, frequency of having sex, and number of clinic visits.  Frequency of having sex was measured as:  were for “no sex,” “always,” “sometimes” and “never.”  These were plotted against number of TASO visits: “1 visit,” “2 visits,” “3 visits,” “4 visits,” and “>4 visits.” 

Limitations of the Study

As with most studies on sexual behavior, this study was aware of the possibility of respondents biasing their report of their sexual behavior towards what perspectives or behaviors TASO promotes.  A major consideration in interpreting results from this case study of TASO medical files was the lack of a) baseline data for the study population before becoming a TASO client, and b) a comparison population of HIV/AIDS patients not using TASO.  However, national HIV/AIDS data typically have biases due to underreporting, and even more so in countries with limited screening and reporting mechanisms. Thus, TASO records may be significantly more reliable than national data in determining accuracy of socio-demographic characteristics of the HIV/AIDS population, even with known limitations of the data.   Moreover, the TASO data provided unique objective information regarding attitudes and behaviors associated with sexual risk by HIV/AIDS patients and their partners and families. 

In addition, bias of those with incomplete records was not known; thus the findings cannot be generalized to all TASO clients.  Nevertheless, the substantial number of clients (N=500) with complete demographic information provided valuable case study data.

Results and Discussion

Gender Differences

It was first hypothesized that the TASO population would reflect the gender proportion in the national HIV/AIDS data and the national census data with a greater proportion of females than males.  The TASO study population had 38 percent higher percentage of females than males, a significantly greater difference than the 8 percent greater percentage of females in the national HIV/AIDS population and 2 percent greater percentage of females in the national census of the general Ugandan population.   In fact, females in the TASO population accounted for more than double the male percentage.

When testing whether TASO population gender differed significantly from the general population, both were highly significant and revealed that TASO gender proportions were significantly greater than the national census gender proportions (See Table 5).  Thus, there was a remarkably greater likelihood of finding females in the TASO population than would be expected given their ratio in the general population. Similarly, a high score was found when comparing the proportion of TASO females to their proportion found in the national AIDS data.    Again, females were significantly more likely to seek care at TASO centers than would be expected in the known HIV/AIDS population. Thus, TASO female patients may not be representative regarding their greater likelihood to seek this type of counseling and care.

Table 5: Comparison of Gender Proportions. Source: Uganda Population and Housing Census 1991; STD/AIDS Control Program, 1997, TASO Mulago.

Age Differences

Analysis of the second hypothesis tested whether a majority of TASO clients would be within the most sexually active age group, 15-49 years, similar to the HIV/AIDS population but disproportionately greater than the general census population.   Age was broken down into seventeen 5-year age categories consistent with national census data. Ninety-six percent of the TASO population was within the 15-49 age group, comparable to 97 percent of the national AIDS population. In contrast, 66 percent of the general Ugandan population fell into this high risk age range.

 Over half (55 percent) of the TASO study population was aged 25-34, with the greatest proportion (30 percent) of clients in the 25-29 group (Table 6). Only a small proportion of the TASO and AIDS populations were less than 20 years old (3 percent and 6 percent respectively) compared to 36 percent of the general population in this younger age bracket. The age group percentages of TASO and AIDS patients dropped by approximately half every five years after age 34 until 50 compared to a much more gradual decline among the general population. Only a marginal proportion of TASO or AIDS patients were 55 or older in contrast to over 10 percent of the general population in this older age group.