The involvement of children with communication disabilities in research: A scoping review

Abstract

Background: Article 12 of the United Nations Convention on the Rights of the Child (UNCRC) highlights that children have the right to communicate their thoughts on matters concerning them (UNCRC, 1989). However, children with communication disabilities are often still marginalised and excluded from research (Stafford, 2017; Young & Clerke, 2024). Children with communication disabilities may be at further risk of exclusion due to limitations in their communication, which may restrict their abilities to express their views in research (Nilsson, 2013). Hence, there is a paucity of research on how children with communication disabilities are involved in research.

Aim: To describe how children with communication disabilities are involved in the research process as well as the roles assigned to them in research using The Involvement Matrix as the framework (Smits et al., 2020).

Methods: The scoping review was guided by a methodological framework (Arksey and O’Malley, 2005) and a multidimensional search strategy to ensure a rigorous and unbiased search. Screening was conducted against the eligibility criteria at title and abstract level and full text level by two independent reviewers. A total of 31 articles met the inclusion criteria. Data of the included studies were extracted according to study and participant characteristics, data collection methods and adaptations, and the stages and roles of involvement as per The Involvement Matrix (Smits et al., 2020).

Results: The review resulted in the inclusion of 31 studies. The included studies demonstrated a paucity of papers that include children with communication disabilities in research. Of the included studies, children with communication disabilities were mostly included in the execution stage of the research and least included in the implementation stage. Furthermore, in terms of involvement, the most common role for children with communication disabilities was that of co-thinker and the least involvement in a role was that of decision-maker.

Conclusions: Although the number of studies in this area is growing, there is a need for children with communication disabilities to be more involved in research, especially in more than one stage of the research process. In addition, children with communication disabilities should be trusted with the role of decision-maker during research. Hence, it is strongly encouraged that further studies involving children with communication disabilities in research are pursued.

References

Arksey, H., & O’Malley, L. (2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology: Theory and Practice, 8(1), 19– 32. https://doi.org/10.1080/136455703200011961

Nilsson, S., Björkman, B., Almqvist, A. L., Almqvist, L., Björk-Willén, P., Donohue, D., … Hvit, S. (2013). Children’s voices – Differentiating a child perspective from a child’s perspective. Developmental Neurorehabilitation, 18(3), 162–168. https://doi.org/10.3109/17518423.2013.801529

Smits, D. W., Van Meeteren, K., Klem, M., Alsem, M., & Ketelaar, M. (2020). Designing a tool to support patient and public involvement in research projects: the Involvement Matrix. Research involvement and engagement, 6, 1-7. https://doi//10.1186/s40900- 020-00188-4

Stafford, L. (2017). ‘What about my voice’: emancipating the voices of children with disabilities through participant-centred methods. Children’s Geographies, 15(5), 600–613. https://doi.org/10.1080/14733285.2017.1295134

United Nations General Assembly. Convention on the rights of the child, United Nations, Treaty Series. 1989.  Retrieved from: https://www.refworld.org/docid/3ae6b38f0.html

Young, K., & Clerke, T. (2024). Inclusion of Students with Disability in Qualitative Education Research – A Scoping Review. International Journal of Qualitative Methods, 23. https://doi.org/10.1177/16094069241244869