We would like to thank the Children’s HIV Association (CHIVA) and its Youth Committee (CYC) for inviting us to spend the day with them. We were asked to use the creative methods previously developed for participant engagement in INTUIT to prompt the CYC members to discuss the self-management of HIV in relation to wellbeing, and how young people self-report on this to healthcare professionals (HCPs). This session was run ahead of the CHIVA Annual Conference, and aimed to invite reflection by the CYC members on what young people may find important to talk about with HCPs to support their wellbeing in daily life, grounded in their own lived experiences. It further aimed to start a conversation about developing youth focused Patient Reported Outcome Measures (PROMs) that consider what it is like to be young and grow up with HIV.
Who we involved:
Ten young people living with HIV took part in a hands-on creative workshop. There was a broad diversity across geographical location (city and rural), ethnicity and the age of the young people involved ranged from 15 to 21 years old. We gained ethical approval from Northumbria University in partnership with Terrence Higgins Trust and CHIVA, to ensure the young people’s safety and well being were of core consideration in the work.
The workshop featured creative activities that enabled participants to reflect upon and communicate their experiences and express themselves through making things like badges, brooches and visual mind maps. Overall, feedback from participants was positive and highlighted the value of creative and design-based methods to scaffold the sharing of personal experiences, as well as the importance of an interactive and reflective space.
It was wonderful being able to involve young people (particularly under 18 year olds) living with HIV in this INTUIT work. Collaborating with the CYC members to support them in thinking about youth focused PROMs, which they will explore with delegates at the CHIVA Conference in March, was valuable for exchanging knowledge and ideas that have informed our on-going INTUIT programme.
Our engagement with CHIVA gave us the opportunity to include the perspective of young people on self-care and managing HIV whilst growing up. To be able to run that session has allowed us to gain understandings of participants’ experiences whilst they are progressing through adolescence. This provides a different and additional perspective to those articulated by adults born with HIV (involved in previously INTUIT studies) who were reflecting back on their adolescence.
Our session with the CYC has been complemented with a longer-term engagement with the young people in key research questions for INTUIT. Five of the CYC members have taken home paper diaries originally designed for use in the INTUIT design research. They have agreed to keep and make entries in these diaries to reflect on their daily experience of capturing and sharing personal information for the purpose of self-care and wellbeing. This diary-keeping forms a follow-on study because INTUIT focuses on adult populations. In part, the research with CYC forms an early impact study from INTUIT, exploring how the creative methods we have used with adults may be used with young people. And in part, the engagement aims to help capture and evidence the views and experiences of the young people about personal health data sharing for living well with HIV, and to support their voices in discussing PROMS-related topics at the forthcoming CHIVA conference.
Written by Bakita, Abi & Caro