The INTUIT research project investigates digital tools to support HIV self-management. The research is led by Newcastle University, in partnership with five other UK universities. Terrence Higgins Trust is a core partner and employs a peer researcher who works in the research team. In this blog post, team members share their insights about conducting the research to date and how artistic approaches can be used in research and to support communications with stakeholders.
The INTUIT research team are exploring how people living with HIV use digital tools to help manage their health and wellbeing, and how these tools could be better designed. A particularly interesting part of our project has involved using methods from the creative arts to conduct our studies. We have learned that artistic methods can be an exciting way for a range of organisations to engage people in research.
It’s important that research findings are shared in relatable and accessible ways – particularly for those who are impacted by the conclusions. One of our studies involved running focus groups with 17 adults living with HIV, about self-care and managing HIV.
The focus groups involved asking participants to reflect on their life experiences and how they express themselves to others by doing creative activities like making badges and brooches. This was found to be enjoyable and supported discussion.
Again, using art in research, we created poems about the experiences that the study participants shared with us. This spring, we held stakeholder meetings to share our findings from this study with a diverse audience. We found presenting the poems at these meetings to be helpful for communicating participants’ voiced experiences.
What is the INTUIT research programme?
INTUIT (Interaction Design for Trusted Sharing of Personal Health Data to Live Well with HIV) is a digital health research programme. The project explores how people with HIV use digital tools, and how those tools support them to manage their HIV and general wellbeing. We also explore what barriers are presented by digital tools, and how they can be better designed to support people.
INTUIT began before the pandemic and it has been interesting to hear how discussions and use of digital and online tools have evolved as we’ve had fewer face-to-face interactions. We’re interested to understand how digital tools can support communication, and how people with HIV capture their own health information and may wish to share this online with others (including others with HIV and healthcare professionals).
People with HIV are involved in INTUIT in a range of ways. Alongside the peer researcher, community representatives sit on our strategic advisory board to help define the research agenda and aims, as well as making sense of the outcomes. Also, people living with HIV have stayed involved as research participants over a number of studies so that research understanding can be built over time.
Since the project began in November 2018, the team has been conducting studies on a range of areas: self-care and self-management of HIV; ethical considerations for using online tools; trust, identity, security and privacy concerns (for sharing and storing health information); relationships between service users and healthcare professionals (and how these shape communication). We have used a wide range of methods such as interviews, surveys, co-creation workshops (focus groups involving hands-on creative activities), diary studies, and the testing of design prototypes in people’s everyday lives.
Using creative skills and approaches in research
As mentioned, one of our first studies involved running focus groups, led by three researchers who are the authors of this post (Bakita Kasadha, Caroline Claisse and Abigail Durrant), supported by Terrence Higgins Trust and Newcastle University, and by Blue Sky Trust, an HIV organisation based in Newcastle upon Tyne). The focus groups aimed to understand how people define self-care and HIV self-management. We three researchers also hold expertise in the creative arts and we were interested to put these skills to use with our research skills. Find out what the workshops involved and who participated.
Focus groups are not only a great way for researchers to learn from participants, but can also provide a space for participants to learn from each other. In fact, one of our participants learned about ‘U=U’ (‘Undetectable = Untransmittable’) for the first time during one of our focus groups. Out of the 17 people taking part, 12 said they would like to have more conversations with their HIV healthcare team about relationships (including U=U and the Can't Pass it On campaign). The creative activities supported group conversations well.
After hearing participants’ experiences, we collectively analysed the recorded data using qualitative research methods. Findings were summarised into three themes: meanings of self-care; understanding care provision; and on communication and sharing. We then drew on our artistic skills. We conducted ‘visual poetic inquiry’, which involved co-creating ‘visual poems’ (that is, poems with visual designs and animations), to respond to and communicate findings from the focus groups. Read more information about this process.
We refer to these as ‘collective poems’, each based on a theme. One of these poems is presented here:
We can describe our process of doing this work. Bakita Kasadha (also a performance poet) composed each collective poem in response to a research theme, representing shared experiences of participants that were voiced in the focus groups.
Bakita also used a different method to compose ‘individual poems’. These reflected what an individual participant had expressed in the focus group, using the exact words said by that person. This is known as 'found poetry'. One of the individual poems, To persevere, is presented here:
Individual poems were shared with a number of the research participants who inspired their creation. Sharing creative outcomes and hearing how they were received was important for helping us shape the visual design of the poem for presentation, and also how it could be ‘performed’. Caroline Claisse (also a visual artist) created graphic design work to illustrate each of the poems, guided by participants’ responses. Bakita then recorded her readings of poems, and Abigail Durrant (also a visual artist) created animations, working with Caroline’s graphic designs and Bakita’s recorded performances.
These animations were shared at our recent project stakeholder meetings. Sharing the poems in this way has enabled us to communicate the everyday commonly experienced emotions of living with HIV. We have found the ‘performative’ format of visual poems to be valuable for ‘staying close to’ what our participants expressed about their feelings and experiences – by retaining a representation of emotion, along with the actual words voiced, in the communication of the research insights.
What have we learned so far?
This spring we held two stakeholder meetings to share our early findings and to get input on current research priorities to help us shape the remainder of our work on INTUIT. Attendees included people living with HIV and the people working with them, plus other important stakeholders.
The stakeholder meetings have provided an important space for dialogue. The INTUIT team are in the final year of the project and we still have studies to conduct and data to analyse. Responses from the stakeholders at these meetings highlighted for INTUIT researchers the importance to:
- Understand the digital divide and how it might impact people with HIV.
- Be clear with what we mean by ‘digital divide’. For some it may mean access to technology, for others it may mean trust in online systems.
- Understand that being safe and secure online will mean different things to different people.
- Be clear about our intentions as researchers and make sure that we respond to users’ needs as they arise.
- Think about how digital tools might complement, rather than replace, face-to-face service delivery and communications.
- Consider the experience of our participants and those with lived experiences throughout the entire research process.
- Explore the unintended consequences of using digital tools, for people living with HIV and for other people (including healthcare professionals).
What’s next for INTUIT?
The INTUIT project runs until April 2022. The stakeholder meetings have been incredibly helpful for focusing our direction as we analyse more of the research data and conduct our remaining studies.
If you would like to learn more about the research, or sign-up to take part in studies, please contact the Principal Investigator of INTUIT, Abigail Durrant.
The research is funded by EPSRC and involves a collaboration between Terrence Higgins Trust, a number of organisations, and six universities: Newcastle University; Northumbria University; University College London; University of Edinburgh; City, University of London; and University of Bristol. Please visit our project website for more information and follow our project news on Twitter at @INTUIT_project.
Bakita Kasadha is a qualitative researcher, writer and poet who worked as a peer researcher on INTUIT based with Terrence Higgins Trust and now works at the University of Oxford. Dr Caroline Claisse is INTUIT Research Fellow working at Newcastle University. Professor Abigail Durrant is INTUIT Principal Investigator at Newcastle University.