Participation patterns of children with cerebral palsy: A caregiver's perspective

脑瘫儿童的参与模式:照护者的视角

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Abstract

BACKGROUND: Participation in activities of daily living (ADL), education, leisure and play in children living with cerebral palsy (CP) may be affected by various factors, as outlined in the International Classification of Functioning, Disability and Health Framework (ICF). The aim of this study was to describe the participation patterns of a group of these children. OBJECTIVES: This study aimed to describe participation patterns in ADL, education, leisure and play activities of children living with CP in Modimolle. METHOD: An exploratory-descriptive qualitative (EDQ) study design was used. A researcher-constructed bio-demographic data sheet and a semi-structured interview schedule were used to collect data from the primary caregivers of children (5-17 years) living with CP in Modimolle. Interviews were transcribed verbatim, translated from Sepedi to English and analysed using the content analysis approach and NVivo software. RESULTS: The findings of this study indicated that children living with CP in Modimolle require set-up and assistance to participate in various ADL such as self-care, family and community activities. They also participate in formal and informal educational programmes as well as active and passive leisure and play activities. However, at the moment, they have limited opportunities to participate because of resource constraints and inaccessible infrastructure. CONCLUSION: Although children with CP in Modimolle perform some ADL, and participate in educational, leisure and play activities, they are not fully integrated into their community. Legislative support and policy implementation are required to improve participation and integration of children living with CP. Further studies on community-specific integrative strategies to enhance participation among children living with disabilities are recommended. CONTRIBUTION: This paper provides valuable information on the participation patterns of children with CP living in a rural area of South Africa. The findings can assist with development and implementation of community-specific, integrative health and social care strategies to enhance participation among children living with disabilities.

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