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.