Experiences of early antiretroviral therapy (art) initiation among people living with HIV in Livingstone district in Zambia
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Being healthy (‘feeling fine’) and health deterioration (‘getting sick’) were key health concerns among PLHIV prior to ART initiation. PLHIV often referred living with HIV as ‘being sick’ and experiencing poor health when already infected with HIV as ‘very sick’ and this perception about sickness and wellness partly determined the need and value placed on accessing HIV services. Motivations for starting treatment included needing to maintain or regain health, encouragement from HCWs, relatives and friends and believing in the effectiveness of ART to improve health. Prevention of HIV transmission to others was not cited to influence uptake. The majority of PLHIV reported stringent adherence to ART; even a half-hour delay in taking treatment was sometimes defined by participants as ‘non-adherence’. Initial reminders for taking ART (setting alarm, placing pills where visible) fell away as daily medication became routine. However, daily uptake of treatment had its own psychosocial and economic consequences which PLHIV had to navigate. With few exceptions, when taking the first line regimen, most PLHIV experienced both temporal (hallucinations, vomiting) and long-term (dizziness and irregular heartbeat) side-effects attributed to ART, which although not considered life threatening, could undermine ART adherence. HIV status disclosure was both limited and selective (mainly to spouses, close relatives, friends and co-workers) and deemed as promoting adherence to treatment and access to HIV services. HIV/AIDS stigma persisted even among relatively healthy PLHIV due to links with ‘promiscuity’, hampering disclosure and access to HIV services. Competing demands on participants’ time, especially livelihood activities, also disrupted accessing services. Good relationships between HCWs and PLHIV promoted access to services.