Abstract
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.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Ghanizadeh A, Alishahi MJ, Ashkani H. Helping families for caring children with autistic spectrum disorders. Arch Iran Med. 2009;12:478–82.
Deater-Deckard K, Scarr S. Parenting stress among dual earner mothers and fathers: are there gender differences. J Fam Psychol. 1996;10:45–59.
Weiss MJ. Hardiness and social support as predictors of stress in mothers of typical children, children with autism, and children with mental retardation. Autism. 2002;6:115–30.
Krauss MW, Wells N, Gulley S, Anderson B. Navigating systems of care: results from a national survey of families of children with special health care needs. Child Serv: Soc Policy Res Pract. 2001;4:165–87.
Davis NO, Carter AS. Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics. J Autism Dev Disord. 2008;38:1278–91.
Pai S, Kapur RL. The burden on the family of a psychiatric patient: development of an interview schedule. Br J Psychiatry. 1981;138:332–5.
Parham LD, Ecker C, Miller-Kuhaneck H, Henry DA, Glennon TJ. Sensory Processing Measure (SPM): Manual. Los Angeles: Weatern Psychological Services; 2007.
Lukens CT, Linscheid TR. Development and validation of an inventory to assess mealtime behavior problems in children with autism. J Autism Dev Disord. 2008;38:342–52.
Schopler E, Reichler RJ, Renner BR. Childhood Autism Rating Scale. Los Angeles: Western Psychological Services; 1988.
Kamat V. Measuring Intelligence of Indian Children. Bombay: Oxford University Press; 1967.
Gessel A. The first five years of life: the preschool years. New York: Harper and Brothers publishers; 1940.
Doll EA. A genetic scale of social maturity. Am J Orthopsychiatry. 1935;5:180–8.
Crasta JE, Benjamin TE, Suresh APC, Alwinesh MTJ, Kanniappan G, Padankatti SM, et al. Feeding problems among children with Autism in a clinical population in India. Indian J Pediatr. 2014. doi: 10.1007/s12098-014-1630-1.
Benjamin TE, Crasta JE, Suresh AP, Alwinesh MJT, Kanniappan G, Padankatti SM, et al. Sensory Profile Caregiver Questionnaire: a measure for sensory impairment among children with developmental disabilities in India. Indian J Pediatr. 2014. doi:10.1007/s12098-014-1603-4.
Datta SS, Russell PSS, Gopalakrishna SC. Burden among the caregivers of children with intellectual disability associations and risk factors. J Intellect Disabil. 2002;6:337–50.
Divan G, Vajaratkar V, Desai MU, Strik-Lievers L, Patel V. Challenges, coping strategies, and unmet needs of families with a child with autism spectrum disorder in Goa. India Autism Res. 2012;5:190–200.
Rai D, Lewis G, Lundberg M, Araya R, Svensson A, Dalman C, et al. Parental socioeconomic status and risk of offspring autism spectrum disorders in a Swedish population-based study. J Am Acad Child Adolesc Psychiatry. 2012;51:467–76.
Milgram NA, Atzil M. Parenting stress in raising autistic children. J Autism Dev Disord. 1988;18:415–24.
Acknowledgements
The authors gratefully thank Ms. Mary Pauline Paul and Mr.George Devadoss for the secretarial help provided during this study.
Conflict of Interest
None.
Source of Funding
This study is supported by an intramural grant from Christian Medical College, Vellore.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Suresh, A.P.C., Benjamin, T.E., Crasta, J.E. et al. 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. Indian J Pediatr 81 (Suppl 2), 179–182 (2014). https://doi.org/10.1007/s12098-014-1626-x
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s12098-014-1626-x