The Quality of Life of Primary Caretaker Person of Children with Autism
Dr Hrishikesh Ghatol,Dr Ashvin Darbastewar,Dr Alpana Kondekar
Dept.of Pediatrics,TNMC and BYL Nair Hospital, Mumbai
Introduction-
Autism is a pervasive
developmental disorder ,causing
impaired social interaction and
social reciprocity ,delayed and
deviant communicative
language and repetitive and
stereotyped behaviour.About 1
in 68 kids in India is diagnosed
to have autism.
The presence of a child with
autism impacts the family in
many aspects including quality
of life ,family functioning and
social support .The main aim of
the study was to compare the
quality of life(QOL) in primary
caretakers of children with
autism.
Methodology-
Caretakers of the children diagnosed
with Autism on OPD basis (by ISAA or
CARS score) were included in the study.
Caretakers were divided into 3 groups
based on the age of their child-age
between 3 to 5 yrs,6 to 10yrs,11 to
18yrs.Similarly caretakers were also
divided according to degree of autism
(mild,moderate,severe) of their child as
calculated from ISAA or CARS scoring.
Total 90 participants were included in
the study.
WHO QOL BREF questionnaire scale
was used to compare quality of
life(QOL) of primary caregivers.
Questionnaire consist of 26 questions
measuring quality of life in 4 domains
mainly Physical
health,Psychological,Social and
Environmental domains.
Conclusion-
In our study ,caretaker showed
significant impairment in QOL in all three
groups (based on age of a child).The most
affected domain was of physical health and
the better QOL was observed with social
relationship related domain.
While in mothers, most affected domain
of QOL was of physical health, in fathers
psychological domain was found to be more
affected.
QOL was more affected in caretakers of
moderate and severe autism in all four
domains than of mild autism.
While in age group of 3 to 5 yrs the most
affected QOL was of physical health, in older
age group of 11 to 18 yrs ,parents were
psychologically more affected.
References-
1. WHO quality of life assessment (WHO QOL) position
paper from WHO.Soc Sci Med 1995,41;1403-1409.
2. Talley RC ,Crews JE,Framing the public health of
caregiving .Am J Public Health 2007;97.
3. Schopler S,Reicher RJ,Renner BR.The childhood
autism rating scale(CARS) Western Psychological
Services USA 1980.