Adaptation and validation of the Child and Family Follow-up Survey (CFFS) tool to measure participation of children with disabilities in Uganda

Definitions and frameworks from high-income countries dominate tools used to measure impairment level, barriers and enablers to participation of children with disabilities in low-income countries. Disability scholars have argued that multiple perspectives and a different discourse are needed to study disability, participation, and inclusion in low-income countries. We examined the use, reliability, and cultural acceptability of the Child and Family Follow-up Survey's (CFFS) Child and Adolescent Scale of Participation CASP, Child and Adolescent Factors Inventory (CAFI), and the Child and Adolescent Scale of Environment (CASE) scales to measure participation of Ugandan children with disabilities and their peers. The tool testing and adaptation was conducted as part of a pilot and feasibility study of the 'Obuntu bulamu' intervention in five private and five public primary schools. Based on disability type, gender, age, and social class, 32 8-14-year-old children with disabilities were enrolled. The translated Luganda CFFS showed excellent internal consistency with CASE, CASP, and CAFI subscales showing good test re-test reliability. Our consistency and reliability results show the three tools are valid and effective to measure environmental issues, childhood social participation, impairment children with disabilities type and severity from a parental perspective in the Ugandan setting. To ensure more in-depth understanding of child participation in the cultural context, we suggest the CFFS scales are used in combination with qualitative child-inclusive methods such as drawings, participatory workshops, and Photo Voice. The study contributes to the existing literature that there need for more Afrocentric interventions and adaptions and development of culturally relevant measurement tools, which build on African cultural values and practices.