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Abstract Introduction There is growing interest in health, developmental and survival outcomes of children who are born HIV‐free to women living with HIV (children born HIV‐free). To date, the research agenda has been largely determined by researchers, funders and policy makers, with limited involvement of parents, who are key stakeholders. Researchers at UCL Great Ormond Street Institute of Child Health in partnership with community‐based organisation 4M Network of Mentor Mothers conducted two workshops with parents in March 2022 to establish research priorities for children born HIV‐free, and key considerations for methodological approaches both to research and engagement with the affected communities. Discussion When exploring research on children born HIV‐free, we consider the following: what aspects of current research are aligned with women and parents’ priorities, what is missing and what approaches would be preferred. A holistic approach to research on children born HIV‐free should be prioritised, focussing on a breadth of outcomes and how they intersect. Secondary use of existing data sources should be maximised to facilitate this, with a view of monitoring the long‐term effects of fetal antiretroviral drug exposure alongside other key health and developmental outcomes. Involving and engaging with parents, and children where possible, must be at the heart of research design to maximise relevance and impact of findings for the affected communities. Potential barriers to engaging with individuals who were children born HIV‐free include parental disclosure and individuals not identifying as a child born HIV‐free to a mother living with HIV. Stigma‐free language must be incorporated into the vocabulary of researchers and other stakeholders, avoiding reference to exposure; we propose the term “children born HIV‐free.” Conclusions Mothers and parents living with HIV should be involved in research about their children born HIV‐free and are key in identifying research priorities so that findings may translate into an impact on their children's health and wellbeing. Meaningful involvement of women living with HIV through trusted community partners is an effective mechanism by which to elicit views on research about their children.

Objective We are analysing linked public health surveillance data on pregnancies to women living with HIV in the UK and vital registration data on all their children born HIV-free, an under-researched group. We sought to engage women living with HIV to elicit their feedback on our work and set research priorities. Approach In partnership with 4M Net, a national peer-support network for mothers living with HIV, we co-designed and held two online workshops (one workshop a week over two weeks) in March 2022. We designed the workshops to be highly interactive, using a combination of online tools and created a safe space for open discussion. All participants received a preparatory booklet in advance, comprising questions, activities, and space for reflections during the workshops. We also prompted participants to discuss their research priorities with peers and/or family members if they felt comfortable with this. Results In total, 6 participants attended the two 2-hour long workshops. All participants were from Black ethnic backgrounds, aged 30 years or older and were mothers of children or young adults born HIV-free. Overall, participants were positive about the programme of research and identified pregnancy, birth, and long-term outcomes in children (especially regarding HIV medication in pregnancy) as being of key importance. They supported the use of linked mental health, hospital, general practice (GP), health visiting and education data to explore pregnancy, health and developmental outcomes among children born HIV-free. Linkage to GP data was identified as a priority by participants, and there was particular interest in addressing knowledge gaps on the mental health of children and young adults born HIV-free. Conclusion Women living with HIV are often involved in research around pregnancy, but rarely in research about their children. By working with trusted community partners, we can engage this often marginalised group of parents who understand the value of linked data research exploring the health and wellbeing of their children born HIV-free.