Choice of methodologies for data collection and participant engagement

Key challenge Mitigation strategies
Negative assumptions about the ability of children with disabilities to understand and communicate can lead to their exclusion from evidence generation activities (this is a particular challenge for children with communication and intellectual impairments).

Verifying the participants’ level of understanding and how they express themselves best can assist with understanding individual children’s ability to participate and how methods should be adapted for them.

Inclusive evidence generation approaches tailored to the individual’s needs can support children with disabilities to participate. Such approaches may include:

  • artistic and writing activities

  • use of drawings/symbols or objects to aid the child’s understanding or expression of ideas

  • use of photography and video-making

  • sign language, natural gestures and body language

  • computer-aided approaches with access adaptations.

Sufficient time should be given to children with disabilities to allow them to participate at a pace that suits them.

Children with disabilities are under-represented in the evidence generation process.

To ensure that children with disabilities are fairly represented in evidence generation activities, researchers can:

  • use existing data sources such as censuses, analyses and surveys (remembering that numbers of children with disabilities may be underestimated)

  • engage with local organizations that represent or support people with disabilities

  • engage with children’s organizations

  • undertake community mapping (which may be most effective if led by people with disabilities or children to overcome issues of stigma)

  • engage with community-based services and institutions

  • use information and communication technology (ICT) and social media to identify children and invite them to participate.

Children with disabilities with particular characteristics can be over-enrolled in evidence generation activities (leading to research fatigue).

Recruitment strategies should be alert to the potential for over-enrolment and approach with caution the recruitment of children who have participated in multiple studies (‘the usual suspects’).

Organizations of people with disabilities and parents’ groups can provide knowledge to help avoid the over-enrolment of specific individual children with disabilities in research, sometimes to the exclusion of others.

Restrictive or inflexible methodologies can be exclusionary and affect how a child with disabilities is portrayed. Researchers must adopt inclusive evidence generation processes and a flexible approach that uses a range of methods and accepts diverse responses and contributions. Child-friendly and child-led approaches can reduce the risk of methodological bias. Different types and styles of participation should be accepted and supported.