Ensuring research involving children with disabilities is inclusive, empowering and safe – what are the critical issues?
Stephen Thompson, Mary Wickenden and Mariah Cannon recently explored the main ethical challenges, and corresponding mitigation strategies, for involving children with disabilities in evidence generation. We discuss with them what important approaches researchers can take to ensure the ethical involvement of children with disability.
How did you approach the project?
We worked in partnership with UNICEF Office of Research – Innocenti, to undertake a review of research and best-practice in relation to involving children with disabilities in evidence generation. Our approach was guided by:
- 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; and
- 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 review involved a desk-based search for literature which provided an analysis of the critical issues in the ethical involvement of children with disabilities from a methodological or strategic position. A systematic approach was taken, where keywords were used to search a number of databases and websites. In addition to the initial literature search, a number of experts were contacted to provide any additional evidence and resources. Evidence focusing on low- and middle-income countries was prioritized. In total, 57 papers were identified as relevant and were included in the review.
Why is there still relatively little research seeking the views of children with disabilities?
There is a tendency for children with disabilities to be deliberately or inadvertently excluded from research, including studies involving a wide range of children, more broadly.
We found that their involvement in research raises various issues and dilemmas over and above those considered for children in general. Central to such concerns are negative assumptions about the capacity of many children with disabilities to participate, and the value of their inclusion throughout the evidence generation process is not well understood. Shifting such pre-conceptions has been slow, as is recognising that child participation may vary greatly. Processes of information giving, consent and/or assent, and methodologies for data collection are often insufficiently adapted to be wholly disability inclusive.
While the challenges and mitigation strategies we uncovered in our review were numerous and varied, a number of principles stood out as essential for anyone who wants to ethically involve children with disabilities in research. These are focused around safeguarding, inclusivity and empowerment.
How do you safeguard children with disabilities whilst still ensuring they can participate in research?
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 poor treatment. It is important to be vigilant in our research practice in order to keep children safe, while at the same time provide opportunities for them to participate. Given that safeguarding should always be prioritised, it is the responsibility of adults to adapt research methods and processes to ensure safe, creative ways to support their involvement. The tendency towards overprotection of children with disabilities otherwise results in exclusion from activities that other children are invited to engage in and contribute to.
How do you ensure inclusivity in research?
Barriers to inclusion exist in society not in the child. We have to take great care not to impose roles and identities on children with disabilities based on assumptions that we (consciously or subconsciously) hold. Children with disabilities should be encouraged to express their views freely and as researchers this means asking children what support they need, rather than assuming we already know. This helps to verify the participants’ level of understanding/preferred communication format and adapt research approaches accordingly. If we hold the view that all research participants are experts in their own lives, we need to adopt methodologies suited to exploring these lived realities, for example using visual methods such as signing, pictures and symbols to aid understanding. We also need to reflect more critically on the ethical dimensions of representing participants’ views in an authentic, fair and accurate way that reflects their perspectives.
How can we ensure power imbalances are adequately addressed in research involving children with disabilities?
Children with disabilities who participate in research activities have a right to feel empowered through their involvement and be able to join in in ways that work for them. For researchers, this means we also need to keep challenging our understandings of what constitutes ethical research practice. Co-researching with children and young people, for example, offers one way of addressing power imbalances and disrupting conventional discourses about decision-making in research, as well as potentially improving inclusivity and safeguarding. For example, participants can be involved in validating data, co-constructing narratives, designing reports and participating in presentations provided that technological or other appropriate support is available where desired or necessary.
Who else needs to be involved to ensure children with disabilities are safe, included and empowered in research?
The findings of the review suggest that researchers working with children with disabilities liaise closely with relevant disability support organisations (sometimes known as Organizations of People with Disabilities – OPDs). Consulting closely with these services can considerably strengthen researcher knowledge and practice as they are likely to understand the contextual and cultural environment and have their own experience to draw on. Organisations 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 terms of research communication and uptake, organisations of people with disabilities can advise on planning and implementation, including where to share evidence, with whom and in what formats to make it accessible and inclusive. Such collaborative research partnerships potentially also significantly strengthen and empower these organisations, which can ultimately be beneficial for the children with disabilities and their communities.
Parents or other primary care-givers are critically important, too, of course. Working in close partnership with parents, can provide knowledge to help avoid either under-representation of children with disabilities in research, or over-representation of specific individual children, which sometimes leads to the exclusion of others.
How else can we ensure children with disabilities are heard in research?
Based on our evidence review, we urgently need more research involving children with disabilities. Including them ensures policy and practice are informed by the perspectives and concerns of children with disabilities themselves. When we have this, we are able to support a wider agenda for the greater inclusion in society of children with disabilities. However, it is important that we think more critically about the ethical dimensions of such research, including the methodological implications, in advancing such inclusion. Focusing on ensuring that the voices of children with disabilities are included in research is imperative in the realisation of children’s right to participate and be heard.
Dr Stephen Thompson is a Research Fellow in the Participation Inclusion, and Social Change Research Cluster at the Institute of Development Studies. His research mainly focuses on disability and inclusion. He is interested in participatory methodologies and sustainable development.
Dr Mary Wickenden is a disability researcher, with a particular interest in inclusive and participatory research and in hearing the voices of adults and children with disabilities and their families, especially those living in the global south or in disadvantaged contexts.
Mariah Cannon is a Research Officer with a Masters in International Development. Her current work focuses on children’s and youth participation in promoting children’s rights and is interested in sustainable, community-led, environmentally conscious development.