Consent
Key challenge | Mitigation strategies |
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Children must assent to participate, and usually their parents or guard- ians must also consent to the child’s participation. A perceived lack of ability to understand/communicate assent can lead to exclusion. Rigid definitions of competence can result in exclusion. |
Information-giving, consent and assent processes must be disability-inclusive and accessible. Enough time must be allowed for children to make an in- formed decision about whether or not to join in before the actual data collec- tion activities begin. Trust must be built between the researcher and the participants and their families and this may take time if the researcher is an unfamiliar person. Researchers must recognize that most children with disabilities have the capacity to make informed decisions if relevant information is made available and accessible to them. Consent, assent and dissent can be articulated verbally or non-verbally. Behaviour, facial expressions and body language can be ways to signal preferences. Researchers must decide whether a participant is having trouble articulating a refusal (which may be problematic for children with physical or communication impairments and very young children in particular). Children’s capacity and willingness to join in evidence generation activities will depend on how these are presented and whether the children feel the activities are at the right level for them. Tasks that are too easy are patroniz- ing, while those that are too difficult are demotivating and excluding. Re- searchers should be observant and sensitive to children’s responses to activities. Adopting the social model of disability in evidence generation activities allows researchers to understand barriers to inclusion as existing outside of children with disabilities, rather than being intrinsic to the individual. |
Using age as the sole threshold factor to determine whether consent can be independently given is problematic. | Researchers must establish in advance the age at which an individual can independently consent/assent to participate (which varies by national context) but should be mindful that age may not be an appropriate determinant of ability to consent/assent. Judgements made in relation to capacity are more likely to be helpful. |
Third party gatekeepers’ decisions can lead to children with disabilities being excluded from evidence generation activities. Gatekeepers may underestimate or misconstrue the child’s abilities, leading to her/his exclusion. |
Where parental consent is required, children should also be asked for assent. If needed, supported decision-making should be used, as opposed to substi- tuted decision-making (i.e., the child is supported to make a decision with the help of someone she/he knows well). If a proxy is used to represent a child and generate data on the child’s behalf, this should be documented during data collection and considered during analysis. If an adult is needed to give consent on behalf of a child, the researcher must decide whether or not the adult is deemed to be protecting the child’s best interests appropriately. If needed, a communication partner/interpreter – ideally chosen by the child – should be able to accurately interpret the child’s communication. Researchers may need to work to increase awareness among third parties of the individual’s right to choose whether or not to participate, and their role in supporting the child. |
A number of factors should be considered in relation to ensuring the privacy of a child with a disabili- ty during data collection. | When considering the privacy of a child with a disability during data collec- tion, a researcher should consider the:
The right to privacy should be discussed with the parents and the child, using appropriate language. |
Some aspects of consent and assent may change during the evidence generation process, and children may change their minds about participation as different activities and expectations arise. | Consent, assent and dissent processes should be treated as an ongoing conversation with both children with disabilities and their families/caregivers. Accessible information must be provided to children, in formats suited to different impairments. This information should include information in relation to the right to not participate, to withdraw from the evidence generation activity at any time or to skip questions. |