More research activities with children with disabilities are urgently needed, and it is important that conventional and existing ethical practices used with children are further developed to embrace disability inclusion. This will encourage the realisation of children’s right to participate and be heard, and ensure that policy and practice are informed by the perspectives and concerns of children with disabilities themselves. Importantly, this approach can support a wider agenda for the greater inclusion in society of children with disabilities.
In partnership with UNICEF Office of Research – Innocenti, we recently undertook desk-based research to explore the main ethical challenges, and corresponding mitigation strategies, in relation to involving children with disabilities in evidence generation. Our approach was guided by the following articles of international treaties:
- Article 12 of the UN Convention on the Rights of the Child, which states that children have the right to form and express views freely in all matters affecting them and that the views of the child must be given due weight in accordance with their age and maturity.
- Article 7 of the UN Convention on the Rights of Persons with Disabilities, which states that children with disabilities must enjoy human rights and freedoms on an equal basis with other children, that they have a right to express their views freely and should be provided with assistance where needed to realise that right.
The importance of safeguarding, inclusivity, empowerment and engagement
We found that involving children with disabilities in research raises various issues and dilemmas over and above those considered for children in general. There is a tendency for children with disabilities to be deliberately or accidentally excluded from evidence generation. Processes of information giving, consent and/or assent, and methodologies for data collection are often insufficiently adapted to be wholly disability inclusive. Additionally, negative assumptions about the capacity of children with disabilities to participate in generating data, and the value of their inclusion throughout the evidence generation process is not well understood and impedes their participation. It should be possible to include every child in some way, although their way of participating may vary greatly. Everyone’s contribution should be valued.
While the challenges and mitigation strategies were found to be numerous and varied, the following key principles stood out as essential for anyone who wants to ethically involve children with disabilities in research:
Safeguarding should always be prioritised
We know that children with disabilities are at much higher risk of being abused, bullied, coerced and patronised and that it may be difficult for them to report this to anyone. There can be collusion from families and teachers in this bad treatment. It is important to be vigilant in our practice in order to keep the children safe, but at the same time give them opportunities to participate. These opportunities are often denied, because of a tendency towards overprotection and exclusion of children with disabilities from activities that other children are invited to do. Striking the balance between children with disabilities being safe and having opportunities to participate is the responsibility of the adults around them.
Inclusivity must be achieved – it is the responsibility of the researcher
Barriers to inclusion exist in society not in the child. Researchers must avoid imposing roles and identities on children with disabilities based on assumptions. Children with disabilities should be encouraged to express their views freely. Researchers should ask the children what support they need rather than assuming you already know. This will allow you to verify the participants’ level of understanding/preferred communication format and adapt research approaches accordingly. All participants should be treated as experts of their own lives. You should adopt methodologies suited to exploring lived realities, for example using visual methods such as signing, pictures and symbols to aid understanding. Participant views should be represented in an authentic, fair and accurate way that reflects their perspectives which may be different from those of their parents or teachers. The findings emerging from research should be respected, even if/when they seem counter-intuitive.
Empower children with disabilities by including them as co-researchers
All children with disabilities who participate should feel empowered by research activities and be able to join in in ways that suit them. Participants can be invited to validate data and co-construct narratives and help to write reports or do presentations. This approach can reduce power imbalances as well as improving inclusivity and safeguarding.
Engage and partner with organisations of people with disabilities
Considering the key principles of safety, inclusion and empowerment provides a starting point to allow any researcher to involve children with disabilities ethically in research activities. In addition, we recommended that researchers working with children with disabilities interact with organisations of people with disabilities. They are likely to understand the contextual and cultural environment and have their own experience to draw on. They can be consulted to strengthen researcher knowledge and practice. Partnerships can also strengthen and empower these organisations, which can ultimately be beneficial for the children with disabilities and their communities. Organisations of people with disabilities can advise on appropriate protection and safeguarding protocols, as well as helping to establish inclusive and accessible referral pathways. They may be able to work with children to help ensure that their safeguarding continues after the study has ended. In partnership with parents, they can provide knowledge to help avoid either underrepresentation of children with disabilities in research, or over-enrolment of specific individual children, which sometimes leads to the exclusion of others. Also, in terms of research communication and uptake, organisations of people with disabilities can advise on planning and implementation, including advising on where to share evidence, with whom and in what formats to make it accessible and inclusive.
The findings from the research are detailed in a working paper, but also summarised in a research brief. Both papers are available in DAISY format. They provide an overview of a range of issues drawn from the literature reviewed and suggest established and potential mitigation strategies that could improve ethical practices when involving children with disabilities in research and other evidence generation activities.