EXECUTIVE SUMMARY
Supports to families
of
Children with Disabilities:
Systematic Review: State of the Evidence
Dick Sobsey & Peter Calder
J,P. Das Developmental Disabilities Centre
University of Alberta
January 2006
Complete Report and Bibliography Available from:
http://www.ualberta.ca/~jpdasddc/famsupport/final.htm
This report was produced with support from the Alberta Centre for Child, Family,
and Community Research. The opinions expressed in this report are solely those
of its authors and not necessarily of the funding agency.
Supports to families of Children with Disabilities
State of the Evidence Review
Dick Sobsey & Peter Calder
February 2006
Executive Summary
This purpose of this study was to review and evaluate the state of currently
available research relevant to support programs for children with disabilities. The
review was designed to be of assistance to researchers, policy makers, and
individuals who work with or live in families where a member is disabled.
The primary goal of this project was to identify, summarize, and evaluate existing
research on support services for families of children with disabilities. Research
was considered to be relevant if it directly described or evaluated the effects of
family support programs. Articles were included if they addressed issues that
had implications for family support programs. Studies were identified primarily
through electronic searches, existing studies and reviews, as well as being
suggested by stakeholders, over 1000 articles were reviewed.
The process resulted in an annotated bibliography of over 500 selected articles.
The annotated bibliography is available in a variety of formats through the
internet including RTF and MS-Word word-processing files, PDF files for printing
a formatted version, and EndNote, a searchable and expandable reference
library file in a bibliographic database as a resource for researchers, students,
and libraries.
Major Findings
1.
Supports to families with children who have disabilities appear have
beneficial effects on both the families and the children themselves.
Early intervention is effective with a wide variety of children with
disabilities including children with autism. A behavioral component
appears to be valuable, but there is no clear evidence of the superiority
of solely intensive behavioral interventions as opposed to more eclectic
approaches to family intervention. More intervention is typically more
effective than less intervention, but there is no clear evidence that
some fixed number of hours per week is critical to success, and some
of the early claims made for Early Intensive Behavioral Intervention on
children with autism have not been supported by subsequent research.
2.
The offering of support services to families with disabled children has
enabled more families to care for their disabled child within a family
context rather than the more expensive institutionalization or under
government supervision. Family support programs were originally
initiated as part of a broader community-based services approach and
should continue to be viewed in that context.
3.
Families differ greatly in their social and personal resources related to
successful parenting of a disabled child. Different children put varying
demands on their parents. The demands are more related to the
2
specific child’s needs rather than the child’s diagnostic category. The
demands on the parents are not always related to the severity of the
disability. Support services should take into account both the needs of
families, the needs of the children, and the informal supports available
from extended families and communities. Special focus should be put
on economically disadvantaged and single parents who are caring for
a child with a disability. The unique needs of aboriginal families and
families from a variety of other cultures needs special consideration.
4.
Some families with a disabled child appear to thrive while others
crumble. Families vary greatly in their ability to care for the child as
well care for their own needs. The manner in which a parent appraises
or perceives the situation with which they are faced determines to a
large degree the manner in which they will adapt. Children with
identical needs can be appraised as being a “burden” to some and as
being a “gift” to others. Some parents adopt a coping style of trying to
live their lives exactly as they would if they did not have a child with a
disability. Others adopt transformed lifestyle where they create a
unique pattern of adapting that best fits their situation. Each of these
styles can be successful for some families, but a rigid adherence to
pre-established patterns can lead to poor adaptation in some families.
Families need support to help them identify the best approach for
them. This support can come through the mentorship of other families
or formal counselling. More research is required to provide better
guidance for this process.
5.
Research should respond more to what parents perceive as needed
areas of inquiry rather the agenda of researchers. Most of the current
research can be characterized as being descriptive; parents appear to
be more interested in studies that relate to delivery of services. Most of
the published research deals with pre-school children with disabilities,
parents would like to see more studies being done with older children
who have disabilities. Most of the published research has a socialservice focus; parents would like to see more studies relating services
of other agencies such as schools. Parents also pointed out that
studies should be done on specific populations that are faced with
different challenges such as aboriginal parents, foster parents and
families living in rural areas.
A more detailed list of findings and recommendations is included at the end of
the report.
3