To Hear Diverse Voices: Self-Identified Participation Goals and Environmental Supports and Barriers of Children with Disabilities

World Health Organization and United Nations Convention on the Rights of the Child (CRC) advocate children’s rights of ‘participation’ in society, emphasizing environmental supports to promote children’s self-expression and participation in all decisions involved them. Participation is defined as involvement in life situations, and has been recognized as ultimate goals for rehabilitation and education of children with disabilities. Research indicated that school-age children with disabilities experience greater participation restrictions and fewer environmental supports than their peers without disabilities. Related research focused on parental report and children’s voices were rarely heard. Taiwan launched the Implementation Act of the Convention on the Rights of the Child (2014) to legalize the implementation of CRC. There is a need for strategies and tools for implementation. Our research has increased knowledge of participation and environmental needs of children with disabilities in transition to school age. However, the measures we developed are mostly based on parental report; child-report measures are quite limited. Picture My Participation (PMP) is a child self-report instrument for school-age children and adolescents with disabilities. The PMP uses pictures that enable children to identify participation frequencies, participation goals, and environmental supports/barriers to home, school, and community activities. It was developed by Australian and Swedish researchers in collaboration with United Nations Children's Fund. Our team joined the international collaboration project on developing and validating the PMP in different languages and cultures. We were the first to establish Traditional Chinese version for Taiwan context. Given the advances and popularity of mobile technologies, we have developed the PMP into App software to provide a fun and user-friendly interface to promote communication and active engagement in the assessment process. The PMP App version is in need for further validation and application in children with various types of disabilities. The purposes of this study are to: establish reliability and validity using the PMP (App), and characterize child-identified participation goals and identify environmental supports and barriers in children with and without disabilities. We propose a two-year research project. We will recruit an estimated sample of 150 children with disabilities 6-12 years of age and their caregivers (n=300) and 150 age-matched children without disabilities and their caregivers (n=300). Data will be collected by examination and interviews using the PMP (App) and other measures for validation. Children will be guided to tell the most important activities they desire changes, and to analyze facilitators, barriers and possible solutions. The PMP is the only child self-report instrument that evaluates participation and environmental factors at the same time. Developing it into App fits the public habits of using mobile devices, and also leads a novel trend of technology development. In practice, guiding children with disabilities to set intervention goals and analyze solutions will lead to a brand new self-determined service model. Health professionals, as well as children and family, will be empowered to provide services responsive to the child’s and family needs. Findings of this study will guide our next step to examine the efficacy of participation-based intervention on promoting child’s participation and self-determination.

Project ID:PC10901-1764
External Project ID:MOST108-2314-B182-041-MY2