Key challenge | Mitigation strategies |
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Power imbalances between adult researchers and child participants can result in children not being adequately represented in the research. | Researchers must recognize their own positionality (the beliefs, characteristics and biases they bring – e.g., about children and disability) and how it can shape the research. To overcome issues arising from power imbalances, researchers must appreciate diversity and difference, and treat children with disabilities as experts of their own lives. Perspectives emerging from the evidence generation process should be respected even if they seem counter-intuitive or contradict other data. Methodologies should be selected that allow children to describe their experiences and express their opinions in ways that suit them. Researchers should aim to represent their views in an authentic, fair and accurate way. Children should be asked to confirm/validate the interpretation of their data at an appropriate level of complexity. Involving children with disabilities in co-constructing the overarching/ summary narrative can empower and amplify their voices and helps them to own and understand their data and situations. Older children and young people with disabilities can learn to be role models for younger children, and all can take on a variety of activities depending on their interests and skills. |
Power imbalances risk children participating without clearly assenting to the research. | Children with disabilities should be repeatedly informed during the research process that they do not have to participate in the evidence generation activity. If they do participate, using open or non-leading questions can minimize the risk that children feel unduly obliged to respond in particular ways or about difficult issues. |
Researchers may impose stereotypes on children with disabilities, resulting in them being treated in ways that are different from how other children are treated during the evidence generation process. | Assumptions about what a specific impairment/disability may entail or mean, or about what support the child may need, should be avoided. Even within categories of impairment, children may have difficulties of varying types and severity (e.g., the experience of one child who is blind will not be the same as for another child who is blind). Researchers should not make assumptions about how children may feel about their impairment. Children may or may not have formed views about this, depending on their individual age, skills and experience. Caution and sensitivity are needed in using labels such as ‘child with a disability’, as this is not necessarily an identity the child would recognize or own for her/himself. Talking about children’s strengths and what they need help with may be more useful. Researchers or facilitators with experience of working with and/or undertaking ethical evidence generation involving children with disabilities should be given preference when recruiting for evidence generation activities. If researchers or facilitators have not previously worked with children with disabilities, they should undertake extensive training before doing so (see below for details). |