“They make money off of us”: a phenomenological analysis of consumer perceptions of corruption in Kenya’s HIV response system

BACKGROUND Problems with misallocation and redirection of critical resources and benefits intended for PLHIV are not uncommon in Kenya. This study explores corruption in Kenya's HIV response system and the implications for health outcomes from the perspective of people living with HIV (PLHIV). Although they might not be directly responsible for health care fund management, PLHIV and their advocacy efforts have been central to the development of HIV system response and they have a vested interest in ensuring proper governance. METHODS This phenomenological study was conducted in 2012 in Kiambu County in Kenya. The study was designed to capture the experiences of a select group of individuals living with HIV and AIDS and subsequent effects on intergenerational wealth transmission. Four focus groups were conducted with self-convened HIV/AIDS peer support groups. Findings related to corruption emerged unexpectedly, albeit consistently, across all four focus groups. To validate core themes within the data, including corruption, two coders independently reviewed and coded the data. RESULTS Participants described incidences of resource misallocation, theft, and denial of services across three thematic levels namely at the interpersonal, provider, and institutional levels. Participants described the negative influence of corruption on their health and financial well-being, and propose: (1) strengthening legal protections for assets belonging to PLHIV, (2) direct representation of PLHIV within service agencies, (3) and addressing information asymmetries to inject transparency into the response system. CONCLUSION Our findings add to the growing literature that identifies advocacy among individuals and families impacted by HIV and AIDS to be a useful tool in drawing attention to harmful practices in the HIV response infrastructure; consistent with this movement, communities in Kenya demand greater control over programmatic interventions both at the national and local levels.