Rapporten - SBU

Table 5.21 continued
Author
Year
Reference
Country
Renty et al
2006
[6]
Belgium
Material
Analysis method
Literature review to create
a special questionnaire for the
purpose with six main categories
supplemented with semi-structured
in-depth interviews with a stratified
sample of 15 parents
The interviews were audio taped
and transcribed verbatim. Thematic
analysis
Recruitment process from
diagnostic centre (105/180)
Advertisement (125) and special
school (14)
35% of the children had an
intellectual disability
Parents signed a consent form
Informants Results Summary Study quality
Comments
244 parents of children with ASD,
3–18 years old, male-female sex
ratio 4:1)
64% only mothers, 7% only
fathers, 25% both parents and
3% by others (grandparents)
352 Autismspektrumtillstånd – diAgnostik och insAtser,
KAPITEL 5 • sysTEmATIsK LITTErATurövErsIKT –
353
vårdens orgAnisAtion och pAtientens delAktighet
Six main categories from
the questionnaire
• General demographic
information
• Diagnosis
The parental satisfaction
with the diagnostic
process was significantly
associated with the age
of diagnosis, the amount
and quality of perceived
information
• Access to appropiate
education and support
Dissatisfaction with
long waiting lists, limited
supply of specialist
schools and services
for ASD
• Education and support
Satisfactions due to
mutual information
exchange about the
child with ASD, indivi-
dual program, professional
knowledge and
expertise, continuity
of staffing
• ASD-specific knowledge
and training
• Concerns and future
needs
pAtientens delAktighet vid Ast
Parents experienced difficulties
with the diagnostic process, with
support and education provided
by mainstream settings and with
the accessibility of autism-specific
service provisions. Conversely,
parents were satisfied with the
quality of autism-specific support
and education
Predictors for satisfaction was
parental involvement, knowledge
of available services provisions, time
between first consultation and final
diagnosis
1. Parents of children with-
out intellectual disabilities generally
experienced more difficulties
with finding appropriate support
2. Parents of older children were
often concerned about the continuity
of the support reaching
adolescent and young adulthood
3. Regardless of age, intellectual
level, support needs, parents
attach equal importance to close
cooperation with professionals,
continuity of staffing, commitment
and enthusiasm of professionals,
and ASD-specific knowledge
Moderate
Unclearness of
representativeness
of parents
No information of
ethical approval
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