Lending a voice to the expressions of children with cerebral palsy in an Indian context: ICF-CY based content-analysis of environmental factors influencing participation at home, school, and community settings

Introduction: To understand how to put the ICF-CY framework into practice within the Indian context, the study is a first-person account of how children with cerebral palsy voice their participation while performing self-care, leisure, and domestic/classroom/community activities at home, school and community settings. Patients and Methods: Using maximum variation sampling, N = 14 participants between the ages of 11- 22 years with ability to communicate, (male = 9 & female = 5; urban = 8 & rural = 6; public school = 5, private school = 5, special schools = 2, school dropouts = 2) from AADI (Action for Ability Development and Inclusion), New Delhi were interviewed. Data collection & analysis: After transcribing the audio-taped interviews, coding was a structured, and objective process using the ICF-CY’s environmental factors (use of general products and technology, and support from family members) from chapter four of ICF-CY manual [see 3, pg 189-224]. Findings & conclusion: The ICF-CY based content-analysis of children’s narration yielded three themes where children identified maternal support as the most significant environmental factor. They identified the facilitators and barriers and required a combination of environmental factors making their experiences of participation context-specific. Adopting ICF-CY framework in India is most needed.