Your questions answered

Welcome to the question time session on the MOOC on Disability Evidence. My name’s Tom Shakespeare. I’m at the London School of Hygiene and Tropical Medicine, and I’m one of the educators on this wonderful MOOC. And we’re here to answer your questions. Let me introduce my colleague. I’m Hannah Kuper, and I work together with Tom. And we’re really excited to answer all your questions today. We’re going to stop talking about the Beano which has been entertaining us this afternoon, and we’re going to try and answer your questions. And the first one is about recommendations for resources to support doing qualitative and/or participatory research with disabled children, especially those who have no speech, or adults.

And first of all to say this is exactly the sort of thing we want to see you doing, lots of methodological innovation and commitment to participation from disabled people. So that is really good. Generally speaking, we referred people to our dear colleague and friend, Doctor Mary Wickenden, who’s at the Institute of Development Studies in Sussex, as the guru of participatory methods with children. But there are various methodologies you can use. You could use pictures and have people discuss pictures. You can do research with people researching with each other– disabled people researching with each other. This is a very good way of bridging the gap. Although your group are under 18 and disabled, I don’t see why they can’t give views.

There’s a really good example of good research with children done by the Nuffield Council on Bioethics. They did research on clinical research with children, and they had a research ethics group with young people. And really, very young people were involved in responding. So have a look at that. There’s loads of resources on the Nuffield Council on Bioethics website. But good luck with it. Can I just add this? Mary Wickenden, as Tom mentioned, has just produced some documents on how to ethically involve children with disabilities in research. And we’ve provided the link along with the Zoom, so have a look at the bottom. So over– no. The next question is mine. Does anybody have any creative or unusual suggestions for dissemination?

This colleague is doing two public events, the main community methods, but would like to hear other creative suggestions. Well, I don’t want to speak for her, but Hannah has been working a lot with the Zika-affected community in Brazil, and I understand from her that they used WhatsApp, these groups of people on WhatsApp, as a way to spread their messages. And they also did a wonderful thing. They had a good photographer take photographs of their children. And then they blew them up to poster size, and they displayed them in their local shopping mall. And the mums of the children with Zika went along to talk about their experiences to anybody who wanted to stop.

And those sorts of events– when I was in Geneva, along by the lake there, there was these huge images of whoever was the campaign of the month. It might have been refugees or disabled folk or whatever else it might be. But using visual images is a good way of dissemination, particularly if you can have people with them and talking about them, or have some text on them. I think that you shouldn’t forget creative arts– theatre, singing. There’s all sorts of ways that you can hold people’s attention, entertain them, but also get across the points of your findings. You don’t just have to do a report, a leaflet. You can also do a skit, a performance, a song.

And so, please use your imagination. You can distill your messages maybe into four or five main points. People won’t probably pick up much more than that. And they can always log on and read more or scan the QR code. So find a way so that they can get the full report, but give them snippets, snappets, gobbets, chunks of it, so that they can easily digest it. Good luck with that. Over to you, Hannah. I’ve got a couple of questions about designing research. So usually by research design, we either mean a qualitative study or a cohort study or case control or survey. And that, once you’ve decided the design, you need to go through a process.

So first, you need to work out what your research question is, and you can also think about a hypothesis. So my research question might be, I want to see whether poverty and disability are related. But my hypothesis is that disabled people– people with disabilities– on average will be poorer than other people in the community without disabilities. I then have to work out what kinds of tools and methods will be used for collecting data, collect the data, analyse it appropriately, and then disseminate. And very importantly, throughout all of those steps, we all need to work in partnership with people with disabilities to make sure that everything we’re doing is appropriate, accessible, and acceptable to people.

Collect the right data in the right kinds of ways. Hannah, can I stop you just there? Is it fair to say that, if you don’t really know much about the area, you’re probably going to have a general research question because you’re exploratory? And if you know you have this intervention which you want to test, then you might be more likely to have a hypothesis, i.e. that it works that it makes a difference. Absolutely. And so I think it’s very difficult. There’s not a one size fits all for research or for research design. It depends on what your question is, what you’re setting, what resources you have, how much money you have available, and where you are in the evidence process.

There’s also a question about statistical methods for analysis, and it could easily be about qualitative methods for analysis. And the question is, how do you do it, or what method should you use? And this is a very technical, complicated area, whether you’re talking about analysing either qualitative data or quantitative data. And again, it’s not easy to give a simple answer, but to say, here is a very good opportunity to connect with researchers with experts, or to do a more detailed course to learn how to do it yourself. But I’m afraid I can’t give you a very, very short answer on that. What if you’re using the Washington Group Short Set of questions?

If you’re doing a survey or something, and you’re trying to disaggregate disability, how would you do data analysis there? So that’s a very good question, and it comes into the next set, which is about using Washington Group Short Set, and you’ll learn more about that in week two. But essentially, there are six questions, which ask about difficulties with walking, with seeing, with hearing, with understanding, with communicating, and with usual activities, and with remembering. And any of those questions you answer with no problem, some problem, a lot of problem, or cannot do.

And usually, the way you analyse those questions is that, if anybody says they have a lot of difficulty or cannot do in at least one of those categories, they’re classified as being at high risk of being disabled. And so what you usually do is that’s how you analyse it, and then you would divide the people in your study into those who are classified as disabled and those who are not classified as disabled. And that’s called disaggregating your data. And then you can compare different features. You can compare the average age, the average poverty, the average level of violence experienced, all sorts of things, comparing people with and without disabilities in that way.

Now, we’ll learn a lot more about the Washington Group questions next week. They’re very widely used. They are quite simple. It is just six questions. And the other issue with it is that this category of a lot of difficulty is quite a strict category, so it might miss people. One of the biggest criticisms is that mental health conditions are not captured well by that Short Set. So what you can do is you can use a slightly extended version, which includes questions on depression and anxiety, or you can use a very extended version. But that would be one of the biggest criticisms, that it’s not capturing well the mental health conditions.

But the other thing is somebody’s asked about disability related to traumatic injury or violence. Would it capture it well? And that’s the other thing that the Washington Group questions don’t do, is they just classify people as whether they are in this category or not, but not why or what it means for that person and their lives. So I don’t know if you want to add anything to that, Tom. I think one of the interesting things is that, of course, a lot of violence, trauma, injury is the reason people are disabled in the first place.

And so I think you kind of have to disaggregate, because otherwise you don’t really know whether disabled people are experiencing more violence, or whether people are made disabled by the violence. And one of the ways we tried to do that in our work on systematic reviews to establish prevalence was to ask, has this person experienced violence in the last year? And that was a much better way of understanding whether they were a disabled person who then experienced violence in the last year, or whether they were somebody who became disabled through violence. Yeah, unless you’re going to do a very much more detailed study, it’s very difficult to do in a quick way. It’s easier with children.

Of course, generally speaking, we assume the child is disabled, and then they have, sadly, suffered violence or abuse. And we don’t try to separate out causality quite like that, which is why we got to this figure of the rate– the prevalence rates– of violence and abuse being three times higher for children who are disabled than non-disabled. As I said, next week, so week two, this week now, we’re going to cover a lot of this. But also, there is a Disability Evidence Portal, which Tom leads. And within that, there is an evidence brief on how can we measure disability. And the link to that is also going to be put in the chat here.

And then the final question that we’re asked is for you, Tom. And it’s should we use the terminology disabled people or people with disabilities or persons with disabilities? OK. Well, a lot of people ask this question. And it depends where you’re from, really. If you are from Britain, then the disability movement in Britain would tend to say disabled people, by which they mean people who are disabled by society. And so the social model is very dominant in UK, and that’s the progressive terminology we use. However, if you’re in another part of the world, you might well say people or persons with disability, because you want to be people first.

And of course, this is the language in the Convention on the Rights of Persons with Disabilities. It’s the language of the UN Committee on the Rights of Persons with Disabilities. And it’s also influenced how we talk about what I would call disabled people’s organisations, DPOs, are increasingly known as OPDs, organisations of people with disabilities. I think that the principle that we should try always to follow is ask the person. Different people will have different views. For example, I know that the group that I used to call people with autism now prefer to be called autistic people.

Because for them, autism is such a huge part of their identity that they don’t want to say they just have it as an external thing. They want to be autistic people. And we know that Deaf people, with a capital D, Deaf, refers to folk who use sign language. So it’s not necessarily people who are hard of hearing. It’s people who feel that they’re part of a linguistic minority. They want you to use the Deaf capital D. We are Deaf people, a cultural subgroup. So it is complicated. I think you can learn the rules very quickly. But if in doubt, ask people. So, thank you very much. Thanks for joining the first week.

Looking forward to working with you during the second. These questions are great, so do keep them coming. Always ready. Thank you very much.