This publication documents the experience of the world's largest international HIV/AIDS prevention project, which was implemented by FHI and its partners in 45 countries. It describes lessons learned during AIDSCAP, with examples and project profiles, in 10 technical and programmatic areas: behavior change communication, improving prevention and treatment of sexually transmitted diseases, prevention marketing, policy development, behavioral research, evaluation, gender and HIV/AIDS, management, AIDS care and support, and cross-border interventions.

Table of Contents

Making Prevention Work

1. Behavior Change Communication: From Individual to Societal Change

2. Improving STD Prevention and Treatment

3. Prevention Marketing: Condoms and Beyond

4. Policy Development and HIV/AIDS Prevention: Creating a Supportive Environment for Behavior Change

5. Behavioral Research: Using Results to Design Behavior Change Interventions

6. Evaluating HIV/AIDS Prevention Programs: Developing New Tools for Meaningful Measurement

7. Women, Men and HIV/AIDS: Building Gender-Sensitive Programs

8. Managing HIV/AIDS Programs and Building Capacity to Sustain Prevention Efforts

9. Prevention and Care: Mutually Reinforcing Approaches (See Below)

10. Crossing Borders: Reaching Mobile Populations at Risk

Partners and Acronyms

9. Prevention and Care: Mutually Reinforcing Approaches

With no cure or vaccine available, the global strategy against HIV/AIDS has focused on prevention. However, as the number of people becoming infected continues to rise at an alarming rate and millions of HIV-positive people fall ill, there is an increasing need for care and support services for people living with HIV/AIDS.

In this second decade of the pandemic, there is also a growing recognition of the contribution care can make to prevention efforts. People living with HIV/AIDS are valuable partners in prevention, giving the epidemic a human face and bringing the weight of their experience to prevention messages. And with no vaccine on the horizon, sustained behavior change over time remains the only way those infected can prevent HIV infection in others. However, if people living with HIV/AIDS feel abandoned by care services, they are less likely to acknowledge their status or to be motivated to protect others.

Communities throughout the world are searching for affordable models of prevention and care that meet their needs. Providers are expanding services from the traditional hospital crisis intervention model to develop community-based strategies for improving the quality of life for people living with HIV/AIDS and supporting their families and loved ones.

Exploring Models of Care and Prevention

In AIDSCAP's work with communities affected by the epidemic, we found that it can be difficult to separate prevention from care, and that doing so may reduce the potential effectiveness of a prevention program. Although AIDSCAP's mandate was primarily to build local capacity for prevention, the project was able to conduct short-term pilot interventions of community-based HIV/AIDS care and support in a few countries.

A small grants program for AIDS care and management enabled AIDSCAP to respond quickly to support innovative, community-based initiatives for the care and management of people with HIV/AIDS. In Haiti, for example, AIDSCAP's care and management grants helped several hospitals to change the focus of care from the hospital to community-based prevention and home-based management of people living with HIV/AIDS. Through these projects, community members became directly involved in training, home care, developing educational materials, and prevention education.

AIDSCAP successfully integrated care and prevention into community-based structures and services in a number of countries. In Kenya , MAP International won over a skeptical clergy to the cause of HIV/AIDS prevention and support, creating a powerful grassroots campaign based in the churches and the communities they serve. Surveys conducted in 1996 showed that the churches in the MAP areas were more likely to provide home care for people living with HIV/AIDS, develop peer counseling programs, and counsel couples on risk reduction. In Jamaica, the Community Outreach Program expanded the support services provided by both governmental and NGO organizations by sensitizing health service providers to the needs of people living with HIV/AIDS and developing a referral resource manual. And in Tanzania, strengthening NGOs and other community-based groups to provide both prevention and care forms the cornerstone of the country program, resulting in integrated community-based services.

To meet the growing demand for practical tools to help those working in prevention respond to the increased demand for care, AIDSCAP developed a manual on HIV/AIDS care and support projects. A concise guide to designing, implementing and evaluating such projects, the manual helps health and development organizations integrate HIV/AIDS care and support into their other activities in communities.¹ Three other AIDSCAP publications, part of the "Emma Says" comic book series, help communities, families and individuals affected by HIV/AIDS learn how they can come together to end stigma and improve care.²

Several studies, mainly from developed countries, suggest that care and support in the form of counseling and testing can play an important role in encouraging preventive behavior.^3,4 AIDSCAP counseling and testing study at centers in Kenya and Tanzania and at a third UNAIDS-supported site in Trinidad assessed the efficacy of this intervention in developing countries (Box 5.1). Another study sponsored by AIDSCAP in Tanzania was one of the first to examine whether care and support for people newly diagnosed with HIV can encourage preventive behavior change over time (Box 9.1).

Lessons Learned

• Providing care and support for HIV-positive people in a community promotes acceptance of HIV/AIDS as a community problem and reduces stigmatization of people living with the virus.

In the isolated mountain communities served by H�pital de Fermathe in Haiti, involvement in care and support helped community members understand that HIV/AIDS is not the result of a supernatural curse. Acceptance of HIV/AIDS as an illness led to less stigmatization of people with HIV/AIDS and greater willingness to speak openly about preventing its transmission. Another AIDSCAP-supported project in Haiti resulted in a dramatic shift in the attitudes of staff at the Grace Children's Hospital, who had been reluctant to care for people with HIV/AIDS. At the request of hospital staff and other caregivers, the hospital expanded a support group for people living with HIV/AIDS to include family members, other community members, and hospital staff and patients, fostering a sense of solidarity among all these groups.

• Care and prevention efforts are more likely to be sustained if they are integrated into existing community-based structures and services.

The USAID-funded Tanzania AIDS Project managed by AIDSCAP, which brought together NGOs working on HIV/AIDS in a region to strengthen prevention and care, illustrates the benefits of building on community resources. Ownership and control of these programs, implemented by a "cluster" of NGOs in each of nine regions, remain in the hands of the community institutions.

The Tanga AIDS Working Group, for example, is an association of physicians, nurses and public health workers who coordinate cluster activities in and around the Tanzanian town of Tanga. Their involvement has made care an integral part of prevention activities in the cluster and has encouraged greater public sector support for HIV/AIDS programs. Government support for cluster activities, which includes providing office space, furniture and some transport costs and paying the salaries of public health workers who devote as much as 40 percent of their time to HIV/AIDS interventions, has laid the foundation for a sustainable program.

• HIV/STD prevention programs in the workplace lead to a more tolerant and accepting attitude among workers toward HIV-positive employees, resulting in a positive effect on morale and productivity.

Studies conducted by AIDSCAP on the impact of HIV/AIDS on 17 sub-Saharan businesses found that managers of organizations with HIV/AIDS prevention programs believe their workplace activities are increasing tolerance and productivity as well as reducing employee risk behavior, health costs and other business costs. Many noted that greater acceptance of people living with HIV/AIDS reduces the potential for work stoppages, which have occurred at other companies because employees were afraid to work with HIV-positive coworkers.⁵

• There is a high demand for HIV counseling and testing services in many developing countries.

HIV counseling and testing centers established in Tanzania and Kenya as part of a study sponsored by AIDSCAP and UNAIDS had no trouble recruiting study participants. In fact, people kept coming to the centers for counseling and testing even after recruitment efforts ended. At the request of community members, this valued service was continued when the study concluded.

• Provision of care can be an entry point for discussions about behavior change and can provide opportunities for personalized prevention messages in traditional and nontraditional settings.

In Haiti, for example, religious leaders trained as community-based caregivers by H�pital de Fermathe provided counseling to people living with HIV/AIDS in their homes, taught their families how to provide basic care and nutrition, and helped them access other support services. The caregivers also used these home visits to talk to HIV-positive people and their families about prevention. In Tanzania, providing care and support has enabled TAP to involve people living with HIV/AIDS in educating their families, neighbors and friends about prevention.

• Peer educators and others working in communities to prevent HIV transmission are increasingly called upon to provide care and support to people living with HIV/AIDS and their families.

A study of peer education in 21 AIDSCAP projects found that in many countries, people are looking to community-based prevention educators for HIV/AIDS counseling, care and support.⁶ In Zimbabwe, several AIDSCAP-sponsored projects responded to changing community needs by teaching trainers basic home care techniques to pass on to peer educators. And in Nigeria, AIDSCAP expanded its peer education training curriculum to include support for people living with HIV/AIDS.

• An educational approach is useful for introducing the concept of peer support groups for people living with HIV/AIDS.

Peer support groups can reduce fear, decrease isolation and encourage HIV-positive people to educate others about HIV/AIDS. But participating in a support group can be difficult for people in cultures where such group processes are a new idea. The NGO Jamaica AIDS Support found that it was more effective to start groups with an educational focus, inviting people to meetings to learn about how to live with HIV/AIDS. After a number of meetings, these gatherings often developed into true support groups.

Recommendations

Many questions remain about how to best provide care and support for people living with HIV/AIDS and about the relationship between care and prevention. Operations research is needed to:

• Gain a better understanding of the types of social, psychological and economic support required to mitigate the virus's impact on families. In particular, studies should examine the role of care in reducing social vulnerability to HIV in at-risk populations such as women and children.

• Identify models of care and support for people with HIV/AIDS and their partners that can influence HIV risk behavior.

• Examine the effects of integrating HIV/AIDS prevention with care at sexually transmitted disease, family planning, tuberculosis, maternal-child health and other health clinics.

• Explore the relationship between HIV and productivity. Thus far, primarily anecdotal reports suggest that if people with HIV are provided care in a humane and non-discriminatory way, they are more likely to resume a productive life. The costs of labor lost due to illness and absenteeism have been documented, but increasing attention needs to be paid to HIV and the workplace.

Future Challenges

Improving Cost Effectiveness

Determining how to make care and prevention services more cost effective by improving accessibility, affordability and acceptability represents the major challenge for the future. To cope with this challenge, health care planners must improve health care delivery and develop new models of prevention and care.

Developing New Models

Developing new models of prevention and care will require a shift in thinking from the notion of individual risk to a new understanding of social vulnerability and structural evolution. For prevention, we need to explore more multidimensional models of collective empowerment and community mobilization. For care, we need to build confidence in levels of care closer to home and to encourage the development of alternate providers and settings. At the same time, services must become more responsive to the diverse needs of people living with HIV/AIDS.

Reaching Youth

Young people under 25 now account for half of all new HIV infections, with the most rapid growth among women 15 to 24 years old. This age group also has the highest rates of other sexually transmitted diseases. To help reduce young people's vulnerability to infection, research is needed to identify the best ways to link STD/HIV prevention with care services for adolescents and youth.

Adopting Long-Term Strategies

As earlier and more accessible testing and improved treatments make it possible for people to live longer with HIV/AIDS, they need support and must engage in prevention for longer periods of time. More long-term strategies must be developed for providing care and support and for encouraging sustained behavior change.

References

1. HIV/AIDS Care and Support Projects (1997). AIDSCAP BCC Handbook Series. AIDSCAP/Family Health International, Arlington, Virginia.
2. Emma Says Comic Book Series (1997). AIDSCAP/Family Health International, Arlington, Virginia.

   Annie Learns to Help 2(1)

   Emma Counsels a Family 2(2)

   A Community Organizes 2(3).

3. Kamenga M, Ryder R, Jengi M, et al. (1991). Evidence of marked behavior change associated with low HIV-1 seroconversion in 149 married couples with discordant HIV-1 serostatus: Experience at an HIV counselling center in Zaire. AIDS 5:61-67.
4. Padian N, et al. (1993). Prevention of heterosexual transmission of human immunodeficiency virus through couple counseling. Journal of Acquired Immune Deficiency Syndromes 6:1043-1048.
5. Select Company HIV/AIDS Policies (1996). In Rau B, Roberts M, eds. Private Sector AIDS Policy: Businesses Managing HIV/AIDS, Module 6. AIDSCAP/Family Health International, Arlington, Virginia.
6. Flanagan D, Williams C, Mahler H (1996). Peer Education in Projects Supported by AIDSCAP. AIDSCAP/Family Health International, Arlington, Virginia.