Research with children with disabilities

In this step, we will discuss three aspects of conducting research with children with disabilities. Firstly, how to identify and quantify the number of children with disabilities. Secondly, we will look at social research with children and specifically on qualitative research with children. And finally, we will summarise some ethical issues and provide examples throughout. Here, we provide an overview of how do you conduct research to identify the number of children with disabilities in a particular setting. These data are needed for informing policies, service provision, and evidence-based advocacy for children with disabilities. One option is to conduct a population-based survey. This is an approach which has been previously discussed in this course.

Given the prevalence of childhood disability is much lower than all-age disability prevalence, it does mean that you would require a very large sample size. And this may come at considerable cost. So an example here on the right of the slide is a population-based survey of childhood disability in Bangladesh in 2014. A sample of nearly, what, 9,000 children was required based on an expected prevalence of child disability of 1.6%.

An alternative approach, which has been validated, is the Key Informant Method, known as KIM. This approach identifies children with disabilities in the community through trained community volunteers, known as key informants. With appropriate training and support, key informants have been shown to be able to identify children with disabilities as comprehensively as a population-based survey. This can provide estimates of prevalence and information on children with potentially unmet needs at up to 10 times lower cost than population-based surveys of the same size. The scale of your study can be big or small as resources allow, but the KIM was originally designed to be conducted at about the size of a district-level population, equivalent to approximately 200,000 people of all ages.

The first step in KIM is to train key informants to identify children with moderate or severe impairments within their local community. Key informants are local community-based volunteers who know their community well– for example, community health workers, or traditional leaders, or traditional birth attendants. It is also important to include people with disabilities as key informants, such as members of a local disabled persons’ organisation. The next step is then to invite all the children to be assessed by team of health and rehabilitation professionals. This could be organised in a camp or could be conducted more locally to their homes.

If you know the population of your district and then identify all the children of 18 years and under with a disability, then you can calculate your prevalence of childhood disability. The health professionals can also determine the need for orthopaedic intervention, rehabilitation, and assistive devices. Compared to a population-based survey, a KIM is likely to miss some children with hearing impairments, which is more difficult to identify. There are key benefits to this approach. The key informants can then be used as advocates for the rights of children with disabilities in their local communities.

In this step, we will talk about approaches to qualitative research with children. Children and young people don’t have as much power as adults. They can’t vote and they don’t have as much money. But Article 12 of the UN Convention on the Rights of the Child says children have the human right to have their opinions heard and taken seriously. Carrying out research with children does not necessarily mean adopting different methods. As in all research, particular methods are chosen because they are appropriate for the group– the social and cultural context and to answer the research question. You may want to use special methods to enable more meaningful participation of the child.

In all research, the relations and context within which communication takes place fundamentally shapes the nature and outcome of the research. You may want to consider how free a child is to give their own views and experiences to adult researchers. How free are children to be able to refuse to participate? You might need to change your approach when interviewing a child. Would you want to interview them at home or in a school setting? What might be the influence of having a parent there when you interview them? This is all about understanding that children generally have less power than adults and doing what you can to mitigate this.

So in conducting research with children with disabilities, what do you think are some of the key considerations? Take a few minutes to think about that and maybe write some notes for yourself.

Some key issues to consider. Firstly, while that may seem obvious, children and young people with disabilities want to be treated in the same way as those who do not have disabilities. Always relate to the child with respect, dignity, empathy, and equality. Find out in advance of the interview about their impairment and what additional help, if any, they might need. You may need to contact the family or the young person in advance to discuss this. If necessary, you may need to visit them in advance to help build trust and learn how the child or young person communicates.

You may also need the assistance of a caregiver or a guardian when consulting with children with certain types of impairment, such as an intellectual impairment.

If the child is deaf and knows sign language, then you plan for that by involving a sign language interpreter. If a child has an intellectual disability, you may need to simplify the interview and use visual aids to prompt a discussion. We will give you an example of this later in the session. Think about how you manage having a caregiver present. Any people, including caregivers, often underestimate the abilities of children with disabilities. So as much as possible, communicate directly with the child. Consider using creative methodology, such as music, art, flashcards, games.

Here we’ll discuss use of participatory methods. This may be useful for all children, not just for children with disabilities. There can be many advantages, and one way of trying to address the power imbalance that often exists when doing research with children. It also may be a method that a child can relate to. There are a whole range of participatory methods out there and we are going to give just a couple of examples only from our own research.

In this example, from Bangladesh, the children were able to talk about their feelings in different settings by using a feeling dice to stimulate discussion. The children threw the die and talked about their different feelings in different settings. Here is another example from Malawi, where we use pictures and emotion cards in engaging children with intellectual disabilities to discuss their feelings about going to school. Also think about how you engage young people in the dissemination of your results. Here is Anita Sigdel, who was a youth research associate, also with a visual impairment herself, who was part of a team to conduct research in Nepal with young people. And she also helped with the analysis workshop and feedback to the donor.

This is an example of how people with disabilities can be included in the research process and ensuring that the young people get feedback from the research that they have participated in. Finally, I will touch briefly on ethical issues in research with children. You will have already covered key points in the session on ethics. And all of those issues are exactly the same when you conduct research with children. But you will need to give special consideration for children. And this will depend on their age and capabilities. Some considerations include consider potential harms versus benefits, does the research actually need to be done, do children need to be involved in it and in what capacity?

You will need to obtain consent from parents or carers and assent or consent from the children themselves, depending on their age. You will need to ensure that the consent process is understood by the child. So for example, you may need to make the consent forms much simpler and easy to read. You will also need to consider privacy at different stages of the research, from data collection through to storage and dissemination of findings. For each of these issues, think about how this might be different for children in that setting that you are working in. How might it be different for a child with an intellectual disability? Are there further adaptations you’d need to make?

What about disclosure of issues, which raise concerns about safeguarding and child protection? All of these are incredibly important issues.