Engaging Communities in Supporting HIV Prevention and Adherence to Antiretroviral Therapy in Zambia

This 12-page research summary, published by Horizons/Population Council, presents the findings of an operations research study to assess the outcomes of the Antiretroviral Community Education and Referral (ACER) Project in two urban areas in Zambia - Lusaka and Ndola. The ACER project was implemented by the International HIV/AIDS Alliance, based in England, and the Alliance's Zambia office in conjunction with two local Zambian partners. Despite some challenges, which are outlined in the report, the study shows many positive trends among people on antiretroviral therapy (ART) and community members in the research sites. These include increased knowledge about HIV prevention and ART, greater uptake of HIV testing, increased use of peer networks as an information source, and reduced stigma.

Launched in 2004, the two-year project built on previous formative research with urban and rural communities that examined knowledge and attitudes about prevention and treatment of HIV. The project was an attempt to put into practice a community engagement strategy to foster HIV prevention, treatment, care, and support for people living with and affected by HIV/AIDS. The project worked to increase community awareness of available HIV-related services; increase access to and use of those services; increase community understanding of the connections between HIV prevention, care, and treatment; support individuals to successfully adhere to treatment and practice preventative behaviours; and support health care workers to deliver services and help meet their own health needs. To achieve these objectives, the ACER project introduced new approaches to community engagement, new roles different community groups can play in addressing HIV, and new ways to link clinic and community activities.

Cross-sectional qualitative and quantitative data were collected at two points in time: baseline data and endline data. Quantitative data were collected via a community survey and a survey of people on ART. Qualitative data were collected via in-depth interviews and focus groups with people on ART and their treatment supporters, and intervention partners and their clients.

The study found there was a significant increase among people on ART in Lusaka who cited peer groups as a source of information (1% at baseline versus up to 47% post-intervention). Despite this, radio remained the main source of information on HIV/AIDS for all survey participants at all sites. According to the report, HIV knowledge increased over time but there was little difference between the intervention and comparison sites. However, HIV testing significantly increased in the Ndola intervention site over the study period, with 35% of survey respondents at endline reporting HIV testing versus 25% at baseline. The data also showed that women tested significantly more often than men.

The research found that partner disclosure among people on ART remained about the same in the study sites. When reviewing patterns of disclosure, spouses tended to disclose to each other first, often going together for testing. According to the report, the availability of ART has played a key role in people being more willing to go for testing.

In terms of adherence, mean four-day self-reported adherence was very high in all sites, but decreased over longer periods of recall. Those who reported missing doses did so early on in their treatment and this was often the result of side effects and lack of food. Strategies to support adherence ranged from using an alarm clock or radio; to spouses who are both on ART reminding each other; to children and other family members reminding them; and to home-based care workers reminding them. Generally, the report found that there was a sense that it is one's duty to remember.

The study found positive changes in knowledge of partner's status among people on ART in the Lusaka intervention site. Condom use at last sex and consistent condom use with regular partners increased as well. There were also significant reductions in internalised stigma among people on ART in Lusaka. Evidence suggests that women on ART experienced a greater decline in internalised stigma than men. Community stigma also decreased in both intervention and study sites, however, it still remains a problem. According to respondents, a reduction in stigma had occurred because of the availability of ART.

Based on these initial findings, a scaled-up version of this community engagement approach commenced in Uganda in 2007. Within Zambia plans are also developing for a similar extension of the approach to other urban and rural settings.