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Co-creating mHealth interventions for HIV with potential end-users

Home > New and events > Co Creating Mhealth Interventions Hiv Potential End Users

Researchers from the m-Africa and i-sense projects have been working with communities in rural South Africa to understand how mobile health (mHealth) interventions can help address barriers to HIV testing and linkage to care. The formative work has just been published in the Journal of Medical Internet Research.

Currently, South Africa has the highest rate of people living with HIV at an estimated 7.9 million people in 2017. The province of KwaZulu-Natal, where this study took place, is disproportionately affected. Almost one in three people in this province are living with HIV and only half of those diagnosed link into care within one year.

“mHealth interventions have the potential to decentralise access to healthcare,” says Dr Oluwafemi Adeagbo, co-lead author and Senior Social Scientist at the Africa Health Research Institute.

“With more mobile phone subscriptions than people, South Africa has huge potential for these interventions to make a difference in healthcare delivery, particularly in resource-constrained settings.”

Potential for mHealth interventions in South Africa

Although South Africa has a progressing mHealth strategy, more needs to be done in order to understand the feasibility and acceptability of introducing these technologies into current care pathways.

“The m-Africa project aims to work with end-users to co-develop mobile phone-connected diagnostic tests that fit into the existing care pathway of low- and middle-income countries,” says Dr Maryam Shahmanesh, Associate Professor UCL Institute for Global Health and Population Health at UCL.

Understanding and aiding engagement with HIV services

The study, as part of the m-Africa project, engaged potential end-users (community members and healthcare professionals) of mHealth technologies through 54 in-depth interviews and nine focus group discussions.

“The aim was to understand barriers to HIV testing and treatment, as well as feelings about using the proposed m-Africa app to promote self-testing and linkage to care,” says Dr Adeagbo.

The first section of the study focused on barriers that might prevent someone from seeing the need to test for HIV. These barriers included:

  1. ‘Everyone will die one day’: it was understood that men are generally more afraid of knowing their HIV status than HIV itself. Acquiring HIV is seen as almost inevitable for men and the social costs of knowing your status mean people choose not to seek care. HIV-related stigma prevents people from accessing HIV services, despite the normalisation of HIV as inevitable, especially amongst men.
  2. ‘They can’t eat the sweet while it’s in paper’: particularly for young people, accessing HIV services sparks fear of being marked as having engaged in socially unacceptable behaviour (the ‘sweet’), such as unprotected sex, or use of drugs and alcohol.
  3. ‘That right turn is the problem’: for most participants, the layout of local health clinics played a role in their choice to access HIV services. The clinic structure, where HIV services are carried out in a separate part of the clinic (the right turn), affects privacy. For men, clinic hours are also a barrier as they are often working or seeking work. Participants also described fear of the negative attitudes of healthcare workers as a barrier.  
  4. ‘When you tell them to go to the clinic, they say they are scared’: participants mentioned the fear around having a ‘HIV identity’ and what people would say about them. Men in particular feared being asked questions about their sexual partners. There was also fear of the ‘unknown’ life after.

Feelings around mobile healthcare for HIV

 “Self-testing can address some of these barriers because not only does it open up opportunities for those in resource restricted settings, but also allows people to test from the privacy of their own home, in their own time,” says Dr Shahmanesh.

Using the app being developed within the m-Africa project, a photo is taken of the completed self-test, via the app, linking people to healthcare professionals to receive test results, and treatment and care, if needed.

This approach was discussed with end-users and the mobile app coupled with self-testing was seen as potentially a game changer. The proposed app was widely accepted by potential end-users for reasons related to privacy, time saving, and reduced stigma. Men and young people in particular also felt that self-testing would give them more control.

The app, however, did not completely address concerns of having a ‘HIV identity’, as well as having to attend clinic for future care. There were also concerns about digital literacy, data consumption, and affordability of smartphones for everyone in the community.  

The findings from this study will be used to continue developing a suitable app that meets end-user needs to help overcome barriers for testing and continued care. 

Related links 

  • JMIR paper - Exploring People’s Candidacy for Mobile Health–Supported HIV Testing and Care Services in Rural KwaZulu-Natal, South Africa: Qualitative Study