Factors influencing uptake of HIV testing and non-initiation of and attrition from antiretroviral therapy care in Lusaka, Zambia

The Human Immunodeficiency Virus (HIV) still remains a global public health burden with an estimated 34 million people living with HIV; 69% of these residing in sub-Saharan Africa (SSA). Although many countries have made steady progress in reducing HIV prevalence, not everyone knows his or her HIV status and not all HIV-infected individuals who need antiretroviral therapy (ART) care are receiving it. Against this background, the aim of this PhD thesis was to explore factors influencing uptake of HIV testing and non-initiation of and attrition from antiretroviral therapy care in Lusaka, Zambia. The PhD study was conducted in Lusaka’s Jack compound residential area and nearby communities. The surrounding communities were Chawama, Kuku, Misisi, Kuomboka, John Howard, Kamwala south and Lilayi. The study settings are predominantly low-income, high-density urban residential areas located about 10 km south of Lusaka city centre, the capital city of Zambia. To explore the barriers and facilitators of uptake of HIV testing, a synthesis of qualitative findings on factors influencing uptake of HIV testing in SSA was first undertaken using meta-ethnographic approach first put forward by Noblit and Hare (1988). 5,686 citations were identified out of which 56 were selected for full-text review and synthesised 42 papers from 13 countries. Malpass’ (2009) notion of first-, second-, and third-order constructs was used to identify and interpret the findings. In addition, qualitative research was undertaken in Zambia to explore why individuals who knew the HIV-positive status of their marital partners opted not to seek HIV testing, and how couple HIV testing was achieved in an antenatal clinic. To investigate reasons for non-uptake of antiretroviral treatment, in-depth interviews were conducted with people living with HIV (PLHIV) that had dropped out of treatment or opted not to initiate treatment, health care providers, traditional medicine providers, herbalists and faith healers. The fieldwork in Zambia was conducted between March 2010 and September 2011. Atlas ti was used to organise and manage the data and latent content analysis was used to analyse and interpret the data. The social ecological framework was used to guide data analysis of factors undermining patient uptake of and retention into ART care. The predominant factors enabling uptake of HIV testing are deterioration of physical health and/or death of sexual partner or child. The roll-out of various HIV testing initiatives such as ‘opt-out’ provider-initiated HIV testing and mobile HIV testing has improved uptake of HIV testing by being conveniently available and attenuating fear of HIV-related stigma and financial costs. However, ‘opt-out’ HIV testing was reportedly being coercively implemented. Other enabling factors are availability of treatment and guarantees of social network support linked to maintenance of social relationships and economic support regardless of outcome of HIV-test results. Major barriers to uptake of HIV testing comprise perceived low risk of HIV infection, perceived health workers’ inability to maintain confidentiality and fear of HIV-related stigma. While the increasingly wider availability of life-saving treatment in SSA is an incentive to test, the perceived psychological burden of living with HIV inhibits uptake of HIV testing. Other barriers are direct and indirect financial costs of accessing HIV testing, and gender inequality, which undermines women’s decision making autonomy about HIV testing. Despite differences across SSA, the findings suggest comparable factors influencing HIV testing. Factors undermining uptake of HIV treatment and retention in ART care are lack of self-efficacy, negative perceptions of medication, desire to avoid stigma and maintain social identity and relationships and fear of treatment-induced physical body changes, all modulated by feeling healthy. Social relationships generated and perpetuated these health and treatment beliefs. Long waiting times at ART clinics, concerns about long-term availability of treatment and taking strong medication amidst livelihood insecurity also dissuaded PLHIV from being on treatment. PLHIV opted for herbal remedies and faith healing as alternatives to ART, with the former being regarded as effective as ART while the latter contributed to restoring normalcy through the promise of being healed. A complex and dynamic interplay of personal, social, health system and structural-level factors coalesce to influence uptake of ART care. In conclusion, improving uptake of HIV testing requires addressing perception of low risk of HIV infection and perceived psychological burden of living with an incurable condition. Building confidence in the health system through improving delivery of health care and scaling up HIV testing strategies that attenuate social and economic costs could also contribute towards increasing uptake of HIV testing in SSA. HIV testing initiatives that target social relationships – couple and household HIV testing – also require promotion while being mindful of the fragility of these social relationships. Ensuring PLHIV uptake of ART care requires interventions at different levels, addressing in particular, people’s health and treatment beliefs, changing perceptions about effectiveness of herbal remedies and faith healing, improving ART delivery to attenuate social and economic costs and allaying concerns about future non-availability of treatment.