Antiretroviral therapy is increasingly available in African communities. We set out to gain patient perceptions on factors which facilitate and challenge access and adherence to such therapy. We carried out two semi-structured interviews 12 months apart with 40 HIV positive people drawn from three economically deprived townships in the Copperbelt, Zambia. We also conducted a focus group of 12 of these interviewees. Availability of medication in health facilities did not automatically ensure access to those in need. A prerequisite for commencing on treatment was a positive documented HIV test result, but too few HIV testing centres, fear of family and community rejection, and male domination in sexual and social decision-making prevented a number from coming forward to be tested. Once within the system of care further barriers such as rumours of bad side-effects, inconsistent information, high costs of drugs (at the time of the first interviews), ongoing costs of additional medical tests, overcrowded systems and overworked staff all hindered access to receiving treatment. When taken, therapy brought side effects, the most common being increased appetite and hunger. Yet, despite these barriers and challenges many of those on treatment reported good adherence. Immediate factors such as seeing ill people becoming well; being supported by a friend or family member; and having a watch or clock to keep to a regular regime were important. The increase in the number of people who were expected to die, but were now looking well also shifted community attitudes. HIV/AIDS is beginning to move from a hidden terminal disease, to a chronic condition which is treatable. largest town in Zambia. After three decades of decline, copper and gold mining is seeing resurgence but unemployment is high and poverty widespread. Subsistence farming, a necessity to supplement income or as its main source, has declined as increasing numbers of workers have become too ill to manage even the modest labour involved.
MethodsWe recruited a broad range of people attending the Isubilo Community Resource Programme, which provides care and support in a community setting for those infected with HIV/AIDS in three crowded townships in Ndola. A qualitative longitudinal approach was chosen to best capture in-depth perspectives of the participants over time and in a flexible and sensitive manner (Mays & Pope, 1996).In March 2005, a local support worker (MM) who was herself HIV +ve, conducted semi-structured interviews with 40 HIV+ve patients who volunteered to participate after information on the study was disseminated. Participants were recruited to gain a representative sample of those attending the clinics. The majority of those invited for interview took part: those who declined gave as reasons, sickness and fatigue. We developed and piloted an interview guide focussing on the illness experience, being tested, antiretroviral treatment access, and adherence. Following written consent, interviews were conducted in the local language, Bemba, and re...
