Collaborative research and perceptions of disability

Last week, Disability Rights UK launched Special or Unique– a report that explores young people’s attitudes towards disability and young disabled people’s experiences of school. We are proud to have supported Disability Rights UK in developing a participatory research approach for this project, as well as designing research tools and supporting with analysis. In this blog, I draw on our work with Disability Rights UK to identify three reasons why collaboration is important when working with young disabled people to conduct research.

1. Collaborating with young people produces better questions and tools

Once we had developed our research questions and an overall approach to the research, we worked with a steering group made up of five young people to sense check our ideas and develop tools that young people could engage with.

The steering group told us what they did and did not like about our initial research plans. They also shared new ideas about how the project could be conducted ethically and effectively. For instance, the steering group explained that they found this ‘research journey map’ easier to engage with than the information sheets and consent forms we standardly use when conducting research with young people.

Research Journey Map

The young people we worked with found the images easy to engage with and liked the way the different research stages were depicted as a journey. We therefore used the map as a resource for explaining the research process to young people who took part in our focus groups – and we’ve gone on to develop and refine the journey map further, and now use it in a range of our research projects with young people.

The steering group also shaped our research questions. They felt that young people should be given an opportunity to discuss school peers because, in their experience, friendships and peer-groups were a key part of young disabled people’s life in school. We duly added questions on these topics to our focus group question banks, and found that many young people spoke with passion about their friendships or their experiences of isolation and bullying – important themes we might not otherwise have uncovered.

2. Collaboration helps to empower young people

Young disabled people should not feel like passive subjects in research studies. In our project, we wanted to empower young people to tell own their stories, explore their attitudes and share real-life experiences of disability, in a way that suited them. We therefore designed tools that helped young people to lead their own discussions and avoided focus groups being overly dependent on direction-setting from researchers. For instance, before discussions began, we asked young people to draw pictures of themselves and the things they felt they were good at, as well as the things that they found more challenging.

Self-portrait by young person.

The activity acted as a planning task as well as a discussion prompt. Young people had time to think about how they perceived themselves before focus groups began and could also draw on their pictures to explain their ideas, navigate various discussion topics and help to set the agenda during the discussion.

3. Collaborative approaches help us to reflect upon, and dismantle, labels

A collaborative approach requires researchers to avoid labelling or categorising the young people they are working with. When young people feel that researchers perceive them in a certain way, it can affect how they respond to questions during interviews or focus groups. It can also have a negative impact on the way young people see themselves or the people around them, beyond the life of the research.

Instead, collaboration involves researchers giving young people the tools, and the freedom, to describe personal perceptions – with or without labels of their choosing. This element of collaborative research strengthens the validity of research findings because we can be more certain that we’re describing young people’s social worlds the way they see them. It’s also more ethically robust, because the balance of power and voice shifts in young people’s favour.

In our project, we therefore avoided naming young people’s disabilities or applying labels to the young people themselves. For example, we encouraged young disabled people to think about words that they would use to describe themselves rather than explicitly asking them how disability formed part of their identity.

Here at LKMco, we are passionate about taking a collaborative approach to our research projects. If you would like to find out more about collaboration in research (e.g. participatory research) or want to tell us about some innovative approaches you are using, please get in touch!