BURDEN OF CARE OF A CHILD
WITH AUTISM IN COMPARISON
TO A DIABETIC CHILD
Professor Doctor Ismail Youssef
Head of Neuropsychiatry Department
Suez Canal University
- Bringing up a mentally
Deficit child…. Is difficult
- While bringing up an autistic
Child….. is heart breaking
(Rapin, 2000)
• Autism is a cruel disorder, not only as a result of
the disability it causes, but also because it is an
illness that challenges the emotional bond
between child and parent.
• The family must watch an apparently healthy child
slip away, and succumb to a brain disorder that
isolates the child -- socially, cognitively,
emotionally, and linguistically – denying other
family members even the opportunity to console
and comfort.
• It is a disorder that completely changes the
rhythms of family life, putting enormous strain on
parents.
(Rennert et al., 2001)
Why type 1 diabetes?
• Diabetes has been recognized since antiquity (Patlak,
2002).
• Type I diabetes is a common, multifactorial and
genetically heterogeneous autoimmune disease
affecting about 0.3% of the world's population and
accounting for about 10% of all diabetes (Harjutsalo,
2007).
• Each year 13,000 new cases of type 1 diabetes are
diagnosed in children and teenagers, making it one
of the most common chronic childhood illnesses
(Harjutsalo, 2007).
Chronic illness such as childhood
diabetes places the child and family at
greater emotional difficulties and stress.
Diabetes is considered to be one of the
most psychologically demanding of the
chronic medical illnesses, and parents of
children with diabetes must deal with
many pressures.
(Llorente et al., 2006)
Patients and methods
• Site of the study:
- Study was held in Suez Canal University
Hospital at Ismailia.
- Participants were recruited from attendants
of the psychiatry and pediatric out-patient
clinics.
Description of the sample
The study included 3 groups (56 families):
• Patient groups:
1- Autism group: Participants composed of 18 children along
with their parents (18 mother and 18 father).
2- Diabetes group: composed also of 18 children along with
their parents (18 mother and 18 father).
● Control group: composed of 20 children and their
parents (20 father and 20 mother).
Tools
■ Parenting Stress Index (PSI); (Abidin, 1987):
It is 120-item scale that assesses three main domains
of stress; Child domain, Parent domain and
life stresses domain.
■ Childhood Autism Rating Scale (CARS):
It is a15 item scale, to identify severity of the disease.
Results
Comparison between the three
studied groups
600
Total Child and Parent stresses
400
(PSI)
200
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• There was no statistically significant difference between
autism and diabetes groups regarding mood subscale of
the child domain and relation with spouse subscale of
parent domain (p-value > 0.05).
• Statistically significant difference was estimated when
comparing between the autism group and control group
regarding all subscales of the PSI (p-value < 0.05),
• There was statistically significant difference between
diabetes group and control group regarding distractibility
subscale of the child domain, attachment and parent health
subscales of the parent domain (p-value > 0.05).
Conclusion
• Parents of both autistic and diabetic children are
placed under great stress; mothers being affected
more than fathers, this endangers them of being
easily subjected to depression, social isolation,
disrupted relation with spouse, and even health
deterioration.
• The severity of autism and gender of the child has
no apparent contribution to level of stress
experienced by the parents.
Recommendations
• Early detection and intervention for autistic
children is considered crucial for alleviating
parental stresses experienced.
• Concerns over short and long term complications
of diabetes and the immense burden of future
caring for autistic children are important issues.
• Still, up to this current time, no meticulus recent
documented studies addressing the prevalence of
autism in our country are done. Some studies
addressed the problem of diabetes but further
updated studies are important.
