Improving disability inclusion in qualitative health research – why and how?

Dr Anna Anderson is a Research Fellow in Qualitative Research at the University of Leeds who leads disability inclusion in research initiatives supported by the NIHR Leeds BRC. She’s also a member of the BRC Qualitative Social and Behavioural Research Network. Here she reflects on the need to improve disability inclusion in qualitative health research.

Nearly one in four people in the UK is disabled, making disability inclusion a priority for all health research areas – not just those focused on disability. Qualitative research can promote accessibility and inclusion, for example through arts-based methods. Yet barriers such as relying on verbal interviews and negative assumptions about disabled people’s capabilities often limit inclusion of disabled people in qualitative research.

Failing to include disabled people in qualitative research means vital insights may be missed – particularly regarding the relevance, accessibility and acceptability of healthcare services and treatments. This may lead to ‘evidence-based’ changes that disadvantage disabled people and so compound health inequities.

The NIHR Disability Framework highlights the importance of addressing barriers to research participation. Local community conversations have also emphasised a new path is needed to improve inclusion of disabled people and other under-served groups in health research.

Artwork developed by Thomas Tickner during a community conversation with Leeds Involving People. Reproduced without modification from Figure 5 in Anderson et al. (2024) under the Creative Commons Attribution 4.0 International License. An image description of the artwork is available in Additional File 1 of Anderson et al. (2024).

So, what could a new, more disability inclusive path involve? Meaningfully including disabled people in research as staff and public contributors is essential. Participatory approaches can further promote inclusion by actively involving people with lived experience in decision-making across the entire research cycle.

A global call to action has highlighted additional steps needed to advance disability inclusion in health research. Priorities for qualitative research include:

• Respect different disability language preferences and use terms preferred by the people being engaged. ‘Disabled people’ is used here to align with the social model. Other terms may be preferred in different contexts.
• Ask inclusive questions about disability when collecting demographic data. This is key to understand if disabled people’s views are represented. It can also facilitate purposive selection.
• Ensure research processes are accessible and inclusive. For example, offer flexible consent and participation options, accounting for the intersectional barriers many disabled people face.

All qualitative health researchers have a role to play in improving disability inclusion and ultimately helping to promote health equity with and for disabled people.