Listening, learning and working with people with lived experience of domestic abuse

As we mark the international 16 Days of Activism against Gender-Based Violence, I wanted to share some learnings from a recent project I led on that asked a simple but often-overlooked question:

This work builds on a study I lead called the RIVA Study — a national research project funded by the NIHR Applied Research Collaboration’s Children’s Health and Maternity programme. RIVA looked to scope out and evaluate the implementation of Healthcare-Based Independent Domestic Violence Advisors (hIDVAs) within English NHS Trusts with maternity services. Through this work, my team and I – including our team of experts by experience – highlighted how vital it is that services are shaped with the voices of people who have experienced DVA, not just for them.

While lived experience involvement is now encouraged in many areas of health and social care practice, practical guidance on how to do this safely, ethically and effectively in the context of DVA is still limited.

So, with support from our funder, we created a set of recommendations for service providers on how to successfully engage people with DVA experiences in the design and delivery of DVA programmes.

What we did

We conducted a series of semi-structured focus groups and interviews with two key groups:

• People with lived experience of DVA who had used community and healthcare services
• Professionals working in community and healthcare services, including third sector and clinical staff

Together, with our experts by experience, we developed interview topic guides exploring:

• Barriers to involvement of people with lived experience of DVA in service design
• What good practice should look like when running involvement activities with people with lived experience

After conducting a detailed analysis of the views shared by participants in the interviews, we identified a set of key priorities for involvement work. Participants then rated the importance of each recommendation and shared any other considerations not presented.

Working with people with DVA experiences: our recommendations

Through capturing the views of both service users and staff who work in and deliver services, we were able to capture rich, grounded insight into how to do involvement work well in front-line services and what can go wrong when specific considerations are overlooked.

Here are a couple of themes that stood out:

1. Safety and trust come first: Involvement work runs well only when people feel safe and respected. This means taking time to build trust, being transparent about what the involvement work can and cannot achieve, establishing codes of conduct, and ensuring participants can step back at any time without consequence.

2. Involvement should be meaningful: Involving people with lived experience from the start of a project is critical in helping to shape questions, design services and review materials. Look to establish shared goals with lived experience members. Avoid simply creating passive involvement opportunities (for example, giving feedback on final products). Honour people’s experience and actively seek to encourage people to share their opinions and act on this feedback.

3. Support for everyone involved: Facilitators of involvement activities need training to handle emotional disclosures safely, and participants should have access to follow-up support if the process triggers distress. Clear safeguarding and debrief procedures are essential.

4. Create feedback loops: Ensure lived experience members are given feedback/updates on how their work has made a difference. This activity helps re-establish trust and sustains engagement for future projects.

We translated these findings into a set of accessible and engaging outputs for services to use widely to support their involvement activities, including the animation above. We officially launched these materials at an online public webinar event, funded by King’s College London, on 3^rd October 2025.

• Download our infographic of the key take-home messages for good involvement.
• Watch our lived experience training session on good involvement practices, developed by experts by experience.

What this means for services

Some key take-home messages I want to share with you to consider before starting involvement work are:

1. Prepare carefully: Plan ahead to encourage representation of underserved communities, to build trust and ensure safety, to co-develop terms of reference and to establish support systems.

2. Be truly collaborative: Recognise the expertise of your lived experience members, empower them to use their voices to affect change and action their recommendations.

3. Communicate clearly: Use accessible, non-technical and inclusive language and be transparent about goals.

4. Feedback and follow up: Show how lived experience input shapes real change.

These principles may sound simple, but they can make the difference between involvement activities that feels tokenistic and one-sided and activities that truly seek to create services that meet the needs of the people it exists to serve.

Reflections from the process

Conducting this study was a learning experience in itself. Through developing these recommendations, I saw where I had fallen short in my past involvement work activities and which specific areas I needed to improve on (for example, offering frequent de-briefing/check-in sessions after involvement team meetings, routine review of involvement processes and adaptation of processes in line with feedback).

Perhaps most importantly, it reminded me that putting dedicated time aside to specifically have an open dialogue on how the involvement work is experienced – including its strengths and weaknesses – can ensure that people with lived experience have a positive and truly meaningful experience of involvement, as the work flexes and adapts to current requirements of the involvement teams. It helped me be explicit with members about my blind-spots and helped facilitate transparent conversations on what was working well and what could be done better or needed also to be considered.

Looking ahead

As part of the 16 Days of Activism, we encourage everyone working in health, community and social care services to reflect on one key question:

Whether you run a service, commissioned programme, or work directly with families, there is always an opportunity to listen more deeply and involve people with lived experience more meaningfully.

By doing so, we can move closer to a future where community and healthcare systems don’t just respond to DVA — they help to prevent it, guided by the expertise of those who know its realities best.

Acknowledgements

With heartfelt thanks to all of the lived experience and community and healthcare staff who shared their experiences and insights, and to the RIVA experts by experience panel for their ongoing commitment and invaluable guidance throughout this project.

Thanks also to our funders the NIHR ARC Children’s Health and Maternity programme, for funding the RIVA programme and the animation video, and to the King’s College London Public Engagement Funding scheme for funding the public workshop event, illustration and training session created by those with lived experience.

The animation was created by Really Bright Media.