Rapporten - SBU

Table 5.21 continued
Author
Year
Reference
Country
Benderix et al
2006
[5]
Sweden
Material
Analysis method
Case study before and after
entrusting five children with
autism and moderate to pro-
found mental retardation,
to a group home
Their language was considerably
delayed or absent
Hermeneutic phenomenological
analysis of narrative interviews
was used
Informants Results Summary Study quality
Comments
10 parents with five 10–11 year
old children were interviewed
in 2000 and 2002, first time as a
couple, second time one by one
342 Autismspektrumtillstånd – diAgnostik och insAtser,
KAPITEL 5 • sysTEmATIsK LITTErATurövErsIKT –
343
vårdens orgAnisAtion och pAtientens delAktighet
Themes before
the move:
• Grief and sorrow
about not having a
healthy and typically
developing child
• Attitudes towards
other persons with
problems had changed
• The aberrant behaviour
of the child was
sometimes not possible
to regulate
• Total exhaustion
• Social isolation
• Siblings being affected
negatively.
Themes after the move:
• It was a relief for the
family when the child
moved
• Being ethically difficult
situation when entrusting
the child to others
• Satisfaction because
of the child improving
• Parents not being
satisfied with the
group home
• Sharing experiences
with other parents
• Hope for the future
pAtientens delAktighet vid Ast
The group seemed to be a relief,
despite the burden on the parents
of the ethical question: are we
doing the right thing?
Society should reflect on living
conditions for autistic children
with learning disabilities and their
families, the needs for home-based
services and the possibilities of
future sheltered housing (not
be living with their families)
Moderate
Small study that
needs more investi-
gation
No gender information
of the children
with autism
Approved by ethics
committee
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