Comparison of burden among primary care-givers of children with autism and intellectual disability against children with intellectual disability only in a hospital population in India.

OBJECTIVE

To compare the burden among the primary caregivers (PCG) of children with autism and intellectual disability (ASD + ID) against intellectual disability (ID) only, and identify the factors that predict high caregiver burden.

METHODS

Children with either ASD + ID (N = 41) or ID (N = 56) and their PCG were recruited and assessed using the Family Burden Interview Schedule, Binet Kamat Scale of Intelligence or Gesell's Developmental Schedule and Vineland Social Maturity Scale, Childhood Autism Rating Scale, Sensory Profile and Brief Autism Mealtime Behavior Inventory after collecting the socio-demographic details. Appropriate bivariate and multivariate statistical test were used.

RESULTS

The total burden and level of burden was similar among PCG of children with ASD + ID and ID (P = 0.8). However, financial burden (P = 0.03) and burden due to the effects on the physical health of other family members (P = 0.03) was more among the ID group. The burden due to the effects on family interaction was more (P = 0.009) in the ASD + ID group. The socio-economic status (OR = 3.60; P = 0.03) and the kinship of the primary care-giver (OR = 0.37; P = 0.008) were significantly associated with high level of burden. In addition, the diagnosis, and gender of the child contributed to the prediction model for high level of burden.

CONCLUSIONS

The interventions for children with ASD + ID and ID should have modules to address burden among PCG. Disability specific burden alleviating strategies should be used among PCG who are at risk of having high burden.