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Participatory research

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Participatory research is an approach which seeks to reduce power differentials, and to recognise the lived experience of lay people. It has been particularly important in the field of disability research. This approach means that both researchers and participants work as core researchers. Sometimes the phrase “experts by experience” has been used to try to equalise power relations between the academic and layperson, showing that everyone has their own experience and expertise, but these are valued differently.
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Traditionally, research is done by trained academics on lay people who lack expertise. It can be disempowering, exploitative, voyeuristic, or may simply make no difference to the lives of people with disabilities. Over the years, there have been many complaints from communities about the research that has been done on them by traditional researchers. People with disabilities have experienced exclusion in many areas of life, including in research. The Disability Rights Movements motto, “Nothing about us without us,” calls for the inclusion of people with disabilities in research. The human-rights-based approach states that full participation is a human right that can and should be claimed by everyone. Participatory research focuses on generating knowledge that can be applied into action.
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Action research has been defined as a systematic collection of information that is designed to bring about social change. But it is also about self-reflective inquiry by people who are in the situation and want to improve that situation. So it is one form of participatory research. In fact, it is often called participatory action research. It has often been used in the field of community-based rehabilitation. Many funders, including many health research funders, now demand a greater level of participation by the participants in research. There are different possible levels of participation. I will start with the highest level of participation, and go down the ladder, until we reach what is not considered a participatory research method anymore.
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Control is when people do their own project, or have direct control over their project via steering group. Contribution is when you work together with people to do the project as partners. Advice is when you ask people for advice on what to do in the project. Consultation is when you show people what you plan to do, and ask them if it’s OK. And at the lower end of the ladder is information, which on its own does not make it a tool for a participatory research method. It’s when you tell people you’re going to do a research project on them. There are many ways to bring people with disabilities into the research process. Different projects have attempted different forms of participation.
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Often, people with disabilities have taken these roles alongside traditional researchers. Sometimes, they have controlled the process from start to finish. As an example, in the dementia inquiries project, local groups of people with dementia have identified their own questions for research. They may be better at knowing what matters to them than non-disabled people would, because they live with dementia at the time, and know of the problems they face. People with intellectual disabilities have also been trained to do interviews and surveys. They may sometimes be better at getting data from other people with intellectual disabilities than non-disabled people would, because they are more trusted.
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Another common form of participatory research is the production of visuals, such as photos and videos, by participants within the research process. The most common participatory visual methods are photovoice, participatory video, drawing and mapping, and digital storytelling. Photovoice, for example, allows participants to reflect on the issues they would like to communicate, and then represent them visually. Photovoice has been used in a number of studies at the International Centre for Evidence in Disability, or ICED, in Vanuatu, Nepal, to explore the water sanitation and hygiene-related barriers to menstrual hygiene management and incontinence faced by people with disabilities. In both settings, participants were given a camera and taught basic photography skills.
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They were asked to take pictures of their experience related to menstrual hygiene and incontinence. Photographs were printed, and the researchers discussed the issues depicted with participants, who then ranked the photos according to which had the greatest to the least important issue. In Vanuatu, participants were supported by ICED partner, World Vision, to present their photos and experiences to stakeholders as a photo exhibition in the capital city. Participatory Video, or PV, is another participatory visual method that has been used at ICED, which is a set of techniques to involve a group or community in shaping and creating their own film. It is a way of getting people together to explore issues and themes in their communities, as well as impact of interventions.
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A participatory video workshop was held in Cali, Colombia, by the International Centre for Evidence in Disability Where caregivers of children with congenital Zika syndrome explored the impact of a programme called Juntos. The aim of the programme is to teach caregivers important tools in the care of their children, as well as support their own well-being, through discussions and activities. In the participatory video workshop, caregivers were taught to film, asked a research question, develop a storyboard, film, and then identify how they envisioned the film to look like after editing, including what music they wanted, or a special effect. [VIDEO PLAYBACK]
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[SPANISH SPEECH] [END PLAYBACK] If you would like to watch the full video, you can find a link to the video in the See Also section below. There are also criticisms that could be made of participatory research. Sometimes the process of participation has more importance than the outcome of the research. Participants are empowered, but the findings of the research that don’t make much impact. It is important to remember research does demand technical expertise, such as sampling, questionnaire design, or data analysis. It is necessary to ensure that somebody in the research project has this expertise, even if the project or dissemination is controlled by laypeople. Participatory research does not escape the ethical problems of traditional research.
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Issues of trust, honesty, and truth are relevant in all forms of research. Participatory research can be more resource-intensive. Training, mentoring, accessible transportation, and accommodation must be fully resourced and sought.
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In summary, we discussed equalising power differentials, action research, different levels of participation and control, photovoice and participatory video, as ways of promoting involvement, and criticisms of participatory research.

In this step, you will hear from Veronika Reichenberger about the importance of participatory methods in disability research. Veronika is a Research Assistant at the International Centre for Evidence in Disability, and prior to joining LSHTM worked as a visual anthropologist.

As Veronika describes, participatory research is an approach which seeks to reduce the power differentials, and to recognise the lived experience of lay people. This approach means that both researchers and participants work as co-researchers. Again, we hear the motto “Nothing About Us, Without Us” which is essential to consider when working in disability research.

Discussion

We would love to hear your thoughts on this video, and the full participatory video produced by caregivers of children with Congenital Zika Syndrome in Cali, Colombia (check the “See Also” section). What did you think of this approach? Have you used participatory methods before? Please share your experiences!

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Global Disability: Research and Evidence

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