Leaving no one behind: Identifying approaches to improving HIV treatment outcomes among older Ugandans

Lead Research Organisation: London Sch of Hygiene and Trop Medicine
Department Name: Public Health and Policy


The number of people living with HIV in sub-Saharan Africa (SSA) is increasing, as people live longer due to increased access to treatment. Specifically the number of people living with HIV who are aged 50 years or older is predicted to increase from 3.1 million people in 2011 to 9.1 million in 2040. Facilitating older people's access to anti-retroviral therapy (ART) and enabling their ability to adhere to their treatment is key for their own health, and following a 'treatment as prevention' model it is also key to preventing the spread of HIV into the wider population.

Older adults have been largely neglected by the prevention community, because the focus has been on reproductive health, mother-to-child transmission, and younger populations where known HIV incidence is high. There is also an ageist driven myth that older adults are not sexually active. Adults remain sexually active well into old age, with the cessation of sexual activity typically resulting from physical health problems and/or the unavailability of a sexual partner which is particularly the case among older women. Studies of HIV-positive older adults in the U.S. find they too remain sexually active, but upwards of 40% do not use condoms regularly; similar results are emerging from research in Africa. Access to ART can protect their own health and reduce their infectivity.

Few studies have examined the barriers for older persons to access treatment for HIV, and to adhere to the treatment, and interventions to improve ART access and adherence have not specifically focused on older adults. This project in Uganda will contribute evidence to address a gap in knowledge on older persons' barriers to ART access and adherence in SSA.

It is not clear whether barriers and facilitators to ART access and adherence would be the same for older populations as younger populations, or if social interventions that have worked well for other populations would sufficiently address older adults' needs. Older adults' barriers to other health care services in SSA include high rates of poverty limiting money for transport and care; multi-morbidity; ageism; and little understanding among health providers of older persons' needs. Their wellbeing is further implicated by social isolation and HIV-related stigma. This project will be the first to develop a tailored multi-pronged social intervention that identifies and addresses older Africans' barriers to ART access and adherence by addressing needs at the individual, community and health system levels.

In this project, we will develop and refine a multi-pronged social intervention to improve access, adherence and wellbeing among older Ugandans. The specific aims of the project are to: (1) Use interviews with older adults, community leaders and health care workers to identify barriers and facilitators to older adults' ART access and adherence. (2a) Develop an intervention that will improve older adults' access and adherence to treatment based on community and older people's perspectives; (2b) Establish a theory of change, i.e., expected factors that will need to be evaluated for change along with the intervention to explain how the intervention works. (3) Refine the intervention by collecting potential clients', community members', and health care providers' perspectives on the intervention's potential, design and the ideal delivery method.

This work will help design a future randomized trial which will formally evaluate how effective the intervention is in improving access and adherence to treatment, as well as reducing social isolation among older people living with HIV in Uganda.

Technical Summary

This project will develop an effective intervention to address older Ugandans' ART access and adherence and their feelings of stigma and social isolation, to be evaluated in a future trial. Few studies have assessed barriers and facilitators to ART access and adherence among people living with HIV (PLWH) aged >50 years. The project, which will take place in rural Uganda, will be the first to develop a tailored social intervention that addresses older Africans' barriers to ART access and adherence.

The aims are to: (1) Identify barriers and facilitators to older adults' ART access and adherence. (2a) Develop an intervention that will improve older adults' access and adherence to treatment; (2b) Establish a theory of change (ToC); (3) Refine the intervention and prepare for a future trial.

Our previous research suggests that for older Ugandans, social isolation and trouble accessing health services are key obstacles to ART access and adherence. The interventions that we will focus on thus include individual, community and health system support. Together these will make up a multi-pronged approach to reduce barriers.

Methodology will include:
1) Key informant interviews to assess existing resources and perceptions among community leaders and health care providers about current older PLWH ART access and adherence, and health and social needs.
2) Individual interviews among older participants in ongoing cohorts to explore themes of ART access and adherence, including social support networks and engagement with the health system. For those on ART, we will collect self-reported data on ART access and adherence.
3) Adaption of existing interventions based on older PLWH's perspectives on their barriers to access and adherence. We will formulate a ToC, including the mediators and moderators of change, and developing instruments to measure these.
4) Refining the proposed intervention through small group interviews to elicit feedback and prepare a trial protocol
Description An increasing number of older persons are living with HIV and on antiretroviral treatment (ART). However, there is limited research on ART adherence in sub-Saharan Africa with persons over the age of 50. In-depth interviews were conducted in 2016-17 in rural southwest Uganda. Two local interviewers interviewed 60 persons aged 60 and above (35 men, 25 women), the majority of whom were living with HIV and had initiated ART. The interviews focused on themes related to ART access and adherence, overall wellbeing and quality of life, social support networks, and engagement with the health system. Our respondents largely had been diagnosed in the early 2000s/2010s, and initiated ART in the last 5-10 years. The majority initially claimed nearly perfect adherence to ART, , but later in the interviews a number of barriers and challenges to adherence emerged. Regular access to ART was not an issue for this population- there were rarely stock-outs, and our respondents reported being able to pick up or send someone to pick up their ART every few months. Food security is currently a major problem in this region due to drought, and it became clear that not only did this make accessing sufficient food difficult, it also decreased the likelihood of individuals' adherence, since they only took their ART when they had food to take it with. As might be expected with an older population, memory was also an issue. A number of respondents reported missing days when there was no one was there to remind them. For many men, in particular, forgetting was compounded by alcohol use. Other barriers to adherence included traveling without the drugs, disliking taking tablets, tablets having an unpleasant smell or fear of side effects, stopping taking ART because of no more symptoms or being tired of taking them. Good adherers did things like having a grandchild or drug companion who reminded them to take their medicine, setting an alarm on their phone or using the radio, packing drugs first in bag when going somewhere, or simply reminding themselves to take their drugs because ART will keep them healthy. As individuals living with HIV age, it is important to understand how adherence might change with age, and to document what coping strategies those with strong adherence exhibit in order to encourage those strategies among others.
Exploitation Route We had applied - unsuccessfully for funding to undertake a feasibility trial of the intervention suggested from the findings of this award.
We continue to plan to build on this work going forward.
Sectors Healthcare

Description We have fed out findings back to the local government officials in the area in which we worked - and there has been some discussion with the agricultural support services about not excluding older people from their extension work.
Sector Agriculture, Food and Drink
Impact Types Societal

Description University of Missouri 
Organisation University of Missouri
Country United States 
Sector Academic/University 
PI Contribution Intellectual and implementation
Collaborator Contribution intellectual
Impact on-going
Start Year 2013
Description University of Sydney 
Organisation University of Sydney
Department School of Public Health
Country Australia 
Sector Academic/University 
PI Contribution Joel Negin is a co-investigator on `Leaving No One Behind'
Collaborator Contribution Co-investigator
Impact Publications
Start Year 2011