Caregiver burden among caregivers of children with autism spectrum disorder

Abstract

Background: Autism spectrum disorder (ASD) is a neurodevelopmental disorder with deficits in social communication and interaction, restricted and repetitive patterns of behaviour, interests and activities. Autism spectrum disorder is associated with multiple comorbidities. As a result, caregivers of children with ASD experience increased levels of burden and poor quality of life. However, there is a paucity of information on the burden. Aim: The study aimed to describe the sociodemographic profiles and determine the extent of the burden experienced by caregivers of children and adolescents with ASD. Setting: The Child, Adolescent and Family Unit (CAFU) outpatient services at Charlotte Maxeke Johannesburg Academic Hospital (CMJAH). Methods: A quantitative, descriptive, cross-sectional study was done. Two self-administered questionnaires were used: a sociodemographic questionnaire and the 12-item Zarit Burden Interview questionnaire. Results: The questionnaires were completed by 77 caregivers, of which the majority were female (n = 56 or 72.3%), mothers to children with ASD (n = 49 or 64.3%) and identified as Christian (p 0.001). Most had completed secondary school or had a tertiary education (p = 0.003) and were employed (p 0.001). Among the caregivers, 41.6% experienced mild to moderate burden, 33.8% experienced high burden and only 24.9% reported no to mild burden. Conclusion: Caregivers of children and adolescents with a diagnosis of ASD are mostly mothers and experience mild to moderate levels of caregiver burden, suggesting the need for improved screening and psychosocial support programmes. Contribution: This study highlights the burden experienced by primary caregivers of children with ASD and is one of the few comprehensive studies on this issue within the context of South Africa.

Keywords

• autism spectrum disorders
• caregiver burden
• children
• zarit burden interview
• south africa