Family Burden of Intellectually Disabled Children with Challenging Behaviour

Challenging behaviours in children and adolescents with intellectual disability imposes a great challenge in the care-giving process. Family burden is high but it is not commonly focused on the management. Hence, this cross-sectional study aimed to assess challenging behaviours among the intellectually disabled children and adolescents, family burden and its associated factors among their caregivers. A convenient sample of 88 caregivers of children and adolescents attending the Child and Adolescent Psychiatry Unit, Hospital Canselor Tuanku Muhriz participated in the study. Socio-demographic factors and challenging behaviours of the children and adolescents were assessed using a socio-demographic questionnaire and Developmental Behaviour Checklist respectively. Family burden was assessed using Burden of Family Interview Schedule. A total of 52% of the children and adolescents were reported to have challenging behaviours while family burden was reported in 76% of the caregivers. Mean total score of family burden was significantly higher in children and adolescents with challenging behaviours compared to those without challenging behaviours (19.02 vs 4.93, p < 0.001). Self-absorbed behaviours (B: 0.313, 95% CI: 0.222 - 0.404), duration of contact hours (B: 0.197, 95% CI: 0.074 - 0.320) and prescription of psychotropic medications (B: 6.474, 95% CI: 1.400 – 11.548) were significant predictors of family burden in our sample. Family burden is high among caregivers of intellectually disabled children and adolescents, with significantly higher levels of burden reported in the presence of challenging behaviours. Hence, family burden should always be considered in the comprehensive assessment and management of children and adolescents with intellectual disability.