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Can digital resources for HIV provide appropriate emotional support?

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Recent research from i-sense members at UCL seeks to understand whether currently available digital health technologies and online information related to HIV offers adequate emotional support.

“Home testing kits are now commonplace, including pregnancy tests and glucose monitoring, however HIV self-tests were only licensed in the UK in 2014,” says Dr Jo Gibbs, Senior Clinical Research Associate & Honorary Consultant at the Institute of Global Health, UCL.  

“Although self-testing  and online resources can empower people to make decisions about their health care, little has been done to understand the emotional impact of receiving a HIV diagnosis outside of traditional healthcare settings,” adds Dr Aneesha Singh, Lecturer of Human Computer Interaction at the UCL Interaction Centre.

The study, which included more than 200 participants over three stages, aimed to understand how and why people access information related to HIV, and their experiences of using these resources.

Why is understanding emotional impact important in the digital age?

In the case of HIV, there are significant emotional factors to consider, including stigma, which can prevent some people affected by HIV from testing, seeking further information, or moving on to treatment and care to manage their symptoms.

Self-testing and access to online information can help breakdown these barriers; however the emotional impact of receiving a status remotely is more difficult to manage and therefore communication needs to consider support throughout the self-testing pathway.

What to consider when developing online communication related to HIV:

“Our findings suggested that current resources are not designed to address the emotional needs of people seeking information on HIV testing, treatment or care, and may reinforce stigma or neglect,” says Prof Ann Blandford from the UCL Interaction Centre. 

Study results found four key recommendations for designing online or remote resources that empower people to make informed decisions:

  1. Aligning with people’s mental models and reasons for accessing the resources: consider the pathway end-users will take when accessing your resource. Ensure information is relevant, well signposted, easy to use, and immediate or urgent actions are highlighted.
  2. Acknowledging and supporting the emotional needs of people: testing is very individual and implications of a positive result will depend on someone’s interpersonal, societal and cultural contexts. It is important to encourage people to seek support throughout, acknowledge the emotional aspects of a HIV diagnosis, and keep communication persuasive.
  3. Personalising to different levels of knowledge and experience of HIV and testing for HIV: how often are people testing? Are they regular testers who have prior knowledge, or are they first-time testers who may be testing after a one-off risky event and need more information (e.g. about PEP (post-exposure prophylaxis), PrEP (pre-exposure prophylaxis), testing for other STIs, window periods for testing, and time to result)?
  4. Ensuring messages are supportive and do not reinforce stigma: communication should be reassuring, engaging and supportive. Ensure messages promote self-testing as a matter of user choice (empowering the user), encourage users to have support around them when testing, and that they know that the healthcare system provides comfortable, secure, and knowledgeable services. It is important to also have a clear call to action, prompting people to get tested.

Participants also felt that they favoured information from trusted resources, such as the NHS, information that was up-to-date, and that they would prefer to use an NHS app (or similar) rather than a separate app for their HIV testing, treatment and care.

“Although digital healthcare technologies are advancing quickly, it is evident that the human element that provides emotional support needs further consideration to ensure these technologies are fit-for-purpose.” adds Dr Aneesha Singh.

This findings of this study will be used to inform the development of an online clinical care pathway for people who are testing for HIV using HIV self-tests or HIV self-sampling kits. The aim of the pathways is to link users to treatment and care, while offering support through the next steps.

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