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Understanding the lived experiences of people with disabilities (qualitative)

In week 1, you learned about qualitative research methods and mixed method research. Now, we’re going to explore the types of themes you might investigate with qualitative research. These include people with disabilities’ experiences of COVID-19, menstrual hygiene management for people with disabilities, violence against children with disabilities, access by older people with disabilities in humanitarian assistance and protection, disability and mental health among Syrian refugees, and understanding the experiences of people living with incontinence. I’m going to share some examples of the types and outcomes that we have measured through qualitative research by the International Centre for Evidence in Disability.
We are currently exploring the experiences of people with disabilities in low middle income countries during the COVID-19 pandemic in order to identify possible strategies to better promote the inclusion of people with disabilities in COVID-19 responses. Through qualitative research, the team is exploring people’s knowledge of COVID-19, as well as assessing the impacts of the pandemic on the daily lives of people with disabilities, including social life, access to social care, health care, school, and employment. In Nepal, we applied qualitative research to investigate the barriers to menstrual hygiene management for people with disabilities. This involved exploring people’s understanding of menstruation, access to and experiences of using water sanitation and hygiene facilities for managing menstruation, and menstrual products and preference.
We also explored the impacts of menstrual restrictions and disability discrimination on people’s well-being, as well as carers’ capacities to support someone else’s menstrual cycle. In Malawi and Uganda, we explored violence against children with disabilities to better understand the need for child protection mechanisms. This involved exploring social and cultural norms within the community around disability, which may contribute to increased vulnerability to violence. In two conflict-affected populations in western Tanzania and eastern Ukraine, we used qualitative research to explore what factors facilitate or limit access by older people with disabilities in humanitarian assistance and protection, and the extent to which humanitarian response are inclusive of older people with disabilities.
Among Syrian refugees with disabilities and/or mental health disorders, we explored priority needs, challenges coping mechanisms, and barriers facilitators to accessing mental health and psychosocial support and rehabilitation services in Istanbul. In Vanuatu, we explored how people with and without disabilities experience incontinence by investigating caring support required, access to health services for incontinence issues, products available used, and experiences of using these. We also investigated access to water sanitation and hygiene facilities, how personal hygiene is maintained, and levels of participation and relationships with others. So these are all really wide-ranging topics. But they have something in common. They focus on understanding human behaviours, including any reasons and motivations for these behaviours.
The topics are also very sensitive and often invisible, such as violence against children with disabilities, incontinence, and menstrual hygiene management. These topics are difficult to explore using quantitative research methods only, because a certain level of trust and rapport needs to be developed between the researcher and the participant for the participant to feel comfortable to share very private experiences. It’s more difficult to do that through a survey than having a conversation with a person, or by asking the participant to take photos to communicate the key challenges they face, or by using collage or colour or by drawing pictures. Qualitative research methods also allow us to probe into areas of interest as they emerge.
Exploring sensitive topics through qualitative researc can lead to descriptive, rich, and deep accounts of personal experiences, meaning that we can get a better understanding of these wide-ranging issues. Later in the course, you will hear about the important ethical and safeguarding issues related to qualitative research to understand how these sensitive issues can be explored responsibly. In this session, we’ve learned about the different topics that can be explored through qualitative research by using examples from the International Centre for Evidence and Disability. These ranged from investigating violence against children with disabilities in Uganda and Malawi to access by older people with disabilities in Humanitarian Assistance and Protection.
We’ve learned that qualitative research allows us to explore these sensitive topics and generate rich and detailed data with participants.

In the last step, we learnt about measuring the lived experiences of people with disabilities using quantitative indicators. In this step, Jane Wilbur will discuss how we understand the lived experience of people with disabilities using qualitative methods. Jane discusses some real examples of research projects to demonstrate the themes that can be explored in qualitative research.

Jane is a Research Fellow at the International Centre for Evidence in Disability. Before joining LSHTM, Jane was the disability inclusion officer at WaterAid.

Have you been involved in any research that aimed to understand lived experiences? Please share your experiences below, and any other comments you might have on the video.

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Global Disability: Research and Evidence

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