Burden of care perceived by the principal caregivers of autistic children and adolescents visiting health facilities in Lucknow City

Background: Autism is extraordinarily difficult for families to cope with for various reasons. Perceived burden and care for the child with autism, available forms of social support, and the interactions between the autistic child and other family members are areas of significant concern for families.

Objective: The objective of this study was to determine the burden of care perceived by the principal caregivers of autistic children or adolescent visiting health facilities in Lucknow city.

Methods: The cross-sectional study was conducted from October 2016 to September 2017 with a sample of 90 principal caregivers (aged <60 years) of autistic children and adolescents aged 3-19 years and diagnosed with autism, attending government and private health facilities providing treatment for autism in Lucknow, Uttar Pradesh, India. Validated tools were used to assess the burden of care and disability level of autistic children. Data were analyzed using the software SPSS version 16.

Results: The caregivers of autistic children and adolescents perceived the burden of care in different domains in varying extent with "caregiver's routine" and "taking responsibility" domains affected the most. The burden perceived was found to be affected by the permanent residence of caregiver, rural/urban dwelling, type of family, socioeconomic status, age at which diagnosis was made, knowledge about autism and the severity of autism.

Conclusions: Availability and easy accessibility of autism treatment facilities must be the most probable reason for less burden perceived in three domains, by caregivers of urban settings and those belonging to Lucknow. Furthermore, better knowledge on autism and family and friends' support led to decrease in the burden perceived by the caregivers in various domains. Thus, it was found that the burden perceived can be reduced by universal availability of evidence-based early diagnosis and treatment of autism and improving the knowledge of caregivers about autism.