Research Article: What causes non-adherence among some individuals on long term antiretroviral therapy? Experiences of individuals with poor viral suppression in Uganda

Date Published: January 21, 2019

Publisher: BioMed Central

Author(s): Dominic Bukenya, Billy Nsubuga Mayanja, Sarah Nakamanya, Richard Muhumuza, Janet Seeley.


Antiretroviral therapy (ART) use by people living with HIV reduces HIV transmission, morbidity, mortality, and improves quality of life. Good ART adherence is required to achieve these benefits. We investigated how the environmental, social, economic and behavioural experiences of people living with HIV with poor viral suppression could explain their non-adherence to long term ART.

This qualitative cross-sectional study was conducted in Uganda between September 2015 and April 2016. Thirty individuals on ART for 5 years or more (10 on first line and 20 on second line), with poor viral suppression, were randomly selected from a cohort of people living with HIV on ART. In-depth interviews about ART; awareness, adherence counselling, obstacles to daily adherence and regimen switches were conducted. Emerging themes from the interviews transcripts and field notes were identified and thematic content analysis done. Participants’ consent, compensation, confidentiality and study ethical approvals were ensured.

We found that poor adherence to long term ART was due to: travel for work or social activities, stigma, receiving little or no continuous ART adherence education, alcohol consumption and use of alternative ‘HIV cure’ medicines. Other reasons included; ART side effects, treatment fatigue, belief that long-term ART or God can ‘cure HIV’, and food security.

Achieving optimal ART benefits requires continuous provision of ART adherence education to individuals on long term ART. This helps them overcome the challenges related to living with HIV: worries of food insecurity, alcohol misuse, economic hardship, and beliefs in HIV cures and use of unproven alternative HIV treatments. People living with HIV who travel require adherence support and larger quantities of ART refills to cover their time away.

Partial Text

Antiretroviral therapy (ART) use in HIV management has reduced morbidity and mortality among people living with HIV. ART also improves life expectancy and quality of life for people living with HIV, while the resultant viral suppression reduces the HIV transmission risk [1–5]. Good adherence, defined as following the recommendations made by the treatment provider on timing, dosage and frequency of medication taking [6], is a prerequisite to realising these ART benefits [7–12]. However, adherence remains a challenge for many people living with HIV [1, 13–15].

Of the 1095 individuals enrolled into the CoLTART cohort, 220 (20.1%) were on the second line ART, 110 (10.5%) had HIV RNA viral load of 1000 copies/ml or higher, including 36 on second line ART, as noted above. Between September 2015 and April 2016, in-depth interviews were held with 30 participants (10 on first line and 20 on second line ART); mean age 41.7 years (standard deviation 8.7), 18 (60%) females and about 80% were Christians. Almost half (47%) of the participants were either married or in a relationship, and a third were either separated or divorced. Half was educated up to primary level.

In this cross-sectional qualitative study among Ugandan adults on ART for 5 years or more but with poor viral suppression, majority of the respondents attributed their poor adherence to: working away from home, stigma and non-HIV serostatus disclosure, relaxed continuous ART adherence education/counselling and alcohol use or misuse. In addition, a few others attributed their poor adherence to availability of other HIV treatment options, treatment fatigue, experiences or fear of ART side effects, belief that God and ART can cure HIV, food insecurity and incarceration.

Although we did not aim to generalise our findings to other populations, our study provides insights relevant beyond our study population of individuals on long term ART with poor viral suppression because people living with HIV and on ART can easily move in and out of adherence/non-adherence categorisation. Also regardless of the adherence category one takes up, all people living with HIV and on ART are faced with daily demands of ensuring continued adherence. To achieve optimal benefits from ART, health workers should continue providing ART adherence education to individuals on long term ART who are vulnerable to challenges of the normalisation process like resuming work activities, stigma re-emergency and treatment fatigue among others. These challenges are bound to become more prevalent in view of the UNAIDS 2020 targets. Individuals who work far from their homes and ART clinics could have refills of larger quantities than usually dispensed or considered for temporary transfers arrangements to ART clinics near their places of work. In addition, embedding economic empowerment and managing alcohol abuse among individuals on long term ART would go a long way to ensure ART adherence. Efforts geared towards improving access to HIV diagnosis, linkage to care, ART initiation, retention and adherence call for more investment in the health sector performance monitoring.