Children with Down syndrome and their communication partners participating in research about communication

Abstract

Even though 2018 marked the 70th anniversary of the United Nation’s Universal Declaration of Human Rights (United Nations, 1948), published research examples which include the voices of children with disabilities are few. In the United Nations Convention on the Rights of the Child (United Nations, 1989), Article 12 states that the child has a right to express an opinion and Article 13 states that the child has the right to express their views. Communication is a fundamental human right, it allows for independence, contributes towards self-esteem and influences an individual’s identity. For those who rely on unconventional methods to communicate, this ‘right’ may be inaccessible due to external barriers such as attitudes or lack of awareness. Because the voices of children with intellectual disabilities have been rarely heard we need to explore ways to make their participation a reality. There is a pressing need to include children with disabilities as participants in research and practice in order to understand their micro- and meso-systems. This paper will share an example where three children with Down syndrome participated in research to share their views. How these children were included in terms of research design, purposeful and snowball sampling and data collection methods will be shared. The discussion in this paper will contribute to the research field where children with disabilities are generally excluded. Therefore, participatory research which includes the voices of children with disabilities is vital. This paper celebrates how children shared their views in research and shares the lessons learned aiming to support further research, policy and practice.