Participatory Research in Disability in Low- and Middle-Income Countries: What have we Learnt and what Should we Do?

Disability scholarship has embraced participatory research methods to support the collection of more relevant, ethical and potentially higher quality data. However, most of the relevant literature focusses on high-income settings. Discussions on the challenges and opportunities in using these approaches in low-and middle-income countries (LMICs) is sparse. The aim of this paper is to critically reflect on the participatory approaches used in disability research in LMIC contexts by the International Centre for Evidence in Disability to learn lessons for future research. Studies were selected from ICED's portfolio to consider participation at different stages in the research cycle and to critique the extent to which this was achieved. Studies set in the Gaza Strip and Malawi demonstrated the potential for involving people with disabilities in research planning through collaborative workshops and steering groups. Studies highlighted the opportunities and practical strategies for including disabled researchers in quantitative (India) and qualitative (Nepal) research. In Colombia, the use of participatory video enriched the interview data collected concurrently. Experiences in Malawi highlighted challenges of participatory analysis and how these could be addressed. In Vanuatu, PhotoVoice was used in dissemination, which helped in conveying lived experiences behind data. Similarly, in Brazil, involving caregivers of disabled children in dissemination workshops and publications provided important insight and potential for impact. Inclusion in analysis steps is potentially more challenging. In conclusion, meaningful participation of people with disabilities throughout the research cycle is achievable in LMICs and can potentially improve research quality and lead to more relevant programmes.

Automated summary

This paper critically reflects on the participatory approaches used in disability research in low- and middle-income countries, highlighting the achievements and challenges of involving people with disabilities in research planning and data collection. Studies showed the potential for including disabled researchers in quantitative and qualitative research, as well as the enriching effect of participatory methods such as video and PhotoVoice on data collection. Ultimately, meaningful participation of people with disabilities throughout the research cycle in LMICs can potentially improve research quality and program relevance.