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Assessing the impact of disability in people’s lives
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In this step, we’re going to talk about how we assess the impact of disability in people’s lives.
In this course, we’ve already described that there are many potential negative impacts of disability in people’s lives. By impact, I mean, people with disabilities may be more vulnerable to poverty, experience higher levels of violence, and have greater health care needs on average. We will often focus on a few of these outcomes when we conduct research, depending on the purpose of a particular study. There are three main reasons why we may want to measure the impact of disability through research studies. The first is to generate evidence that can be used to advocate for the importance of the focus on disability and disability inclusion.
Second, if we know what the impact of disability is on people’s lives, then this will help us to design appropriate interventions. Third, when we use particular study designs like trials, when we collect this information on impacts, we can then work out whether interventions are effective in improving outcomes for people with disabilities. Earlier in the course, we described the differences between qualitative and quantitative measures. We can measure the impact of disability either qualitatively or quantitatively. As with all research on disability, it is important that people with disabilities participate in– or, ideally, lead– the collection of this data. I am now going to describe some of the types of impacts that can be measured.
The first are on health status and rehabilitation needs of people with disabilities. Collecting this type of information can help us to understand what kinds of health and rehabilitation services different people need. This evidence helps us to advocate for and plan health and rehabilitation services. We are also often interested in the impact of disability on poverty. There are lots of different ways to measure poverty. And we can then compare levels of poverty between people with and without disabilities. For instance, this graph shows the results of a study that we did in Vietnam and Nepal. We found that in Nepal, people with disabilities were about two times as likely to live below the poverty line as people without disabilities.
In Vietnam, there were three times more likely to live below the poverty line. Although we can’t be sure from this information whether the poverty or the other way around. Or that there was a third factor that caused both. It does show that there’s a strong link between poverty and disability. And this implies that disabled people may benefit from social protection. Disability may also have great impacts on education. This graph summarises the evidence across 30 countries, and shows consistently that girls with disabilities were about five to 10 times less likely to be enrolled in schools as girls without disabilities. School enrollment, though, is just one aspect of education that’s important.
We may also want to investigate the impact of disability on educational achievements and things like satisfaction with education. Are children with disabilities and their parents happy with their experience at school? Again, this information helps us to advocate for the inclusion of children with disabilities in schools, and also to plan for what kinds of supports may be needed. A lot of the information described so far in terms of educational impacts is collected quantitatively. Qualitative measures are also really important, as they allow us to understand in more detail the barriers that children experienced to enrolling in school, as well as their experiences in school.
For instance, here is a quote from the mother of a child with physical and intellectual impairments in Malawi. She says, “His classmates tease him that he is disabled. They also beat him and steal his food. In the past, he used to run away from school. He would sometimes say he will stop school. But I encourage him.” This quote highlights some of the challenges that the child faces.
We can also collect both qualitative and quantitative data to get a fuller picture of the impacts of disability. For instance, the quantitative data presented here shows that in the study, 1 in 4 children with disabilities experienced violence. So they were three to four times more likely to experience violence compared to non-disabled children. The quote from the qualitative study describes how the violence occurred for this person. It says, “Well, she beats me. She beats me with an eakle broom. She had hit me with a real broom on my wrist and it was swollen. So will hurt, won’t it? So I told the doctor I fell and injured my hand.”
This quote allows us to understand a bit more of the context in which the violence was perpetrated and how it led for the child to lie about her experiences. A lot of the impacts I’ve described so far were measured through observational studies. Looking at the impacts of disability on other outcomes evidence is useful for advocacy and also for planning interventions. We may also want to measure whether interventions change outcomes for people with disabilities. For instance, the Good School Toolkit is an intervention that aims to reduce violence perpetrated against students. A randomised controlled trial was undertaken in Uganda to consider whether the intervention was to reduce violence, including for children with disabilities.
A group of young people with disabilities were randomised to either receive the intervention or not. At follow-up, it was found that 59% of children with disabilities in the intervention arm reported that they had experienced violence compared to 84% in the control arm. This data shows, therefore, that the intervention helped to reduce violence perpetrated against children with disabilities, although the level of violence, sadly, still remains very common, even in the intervention. In summary, are diverse impacts of disability in people’s lives. And interventions targeted at people with disabilities can affect these impacts in different ways. Impacts can be measured qualitatively or quantitatively using different study designs.
Measuring the impact of disability in people’s lives can help us to advocate and plan for services for people with disabilities, and also to assess whether or not they are effective.
In this step, lead educator Professor Hannah Kuper will discuss how we assess the impact of disability in people’s lives. Throughout this course, we have heard that there are many potential negative impacts of disability on people’s lives. For instance, people with disabilities may be more vulnerable to poverty, experience higher levels of violence, and have greater healthcare needs.
Professor Kuper describes three main reasons why we may want to measure the impact of disability through research studies:
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To generate evidence that can be used to advocate for the importance of a focus on disability, and disability-inclusion
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To design appropriate interventions based on the evidence on impact
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To work out whether interventions are effective at improving outcomes for people with disabilities
As always, we would love to hear your thoughts about this step. The next two steps will build on this step by considering measurement of lived experience of disability – through both qualitative and quantitative methods.
This article is from the online course:
Global Disability: Research and Evidence
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