A report on the needs of families caring for
children with uncontrolled epilepsy or epilepsy and another disability.
This is the first study in Australia to investigate
the needs of families who care for a child with uncontrolled seizures or
epilepsy and another disability. This project was instigated and
executed by Epilepsy Queensland Inc in response to a perceived lack of
information about the needs of these families and a concern that their
needs were not being met. The project was funded by Disability Services
The study utilized a methodology which sought
quantitative and qualitative data directly from parents and carers. This
provided some clarification of families’ perceptions of the most
useful services and resources for them, while it further identified the
level of unmet needs experienced by the families.
The results suggest that the greatest areas of unmet
need related to information about available services, information about
their child’s condition, social or family support and respite care.
Families nominated respite care as the most important service or
resource for families who care for children with uncontrolled epilepsy
or epilepsy and another disability. The most difficult things for
families to cope with in caring for their children were the nature of
epilepsy (including the unpredictability of seizures and the stigma
attached to epilepsy) and the need to give their child constant
While parental assessment of needs was generally
congruent across city and regional respondents, three areas showed
statistically significant differences – information about services,
psychological support for parents and psychological support for siblings
– where metropolitan parents reported higher levels of unmet needs
than their counterparts in regional Queensland. Overall, the results
suggested that a flexible, holistic approach by disability service
providers and other professionals to the needs of the family would be
more effective than simply targeting the needs of the child.
Following are just a few quotes from families who
participated in the study, which tell the story in a very real way.
"Although our child has physically and mentally
drained us; pushed us to our limits; caused us to unfairly expect more
from her siblings and tested our marriage, we don’t blame her. We love
her. We want her life to be better, want her epilepsy to be better
controlled, want her to understand her feelings and learn to control her
behavior and we strive every day to help her. We will try anything, see
anyone, in a bid to find her some peace and quality of life."
"Neither my family nor friends had ever had any
knowledge of other children with disabilities and had no idea of the
impact – emotionally, physically, financially, socially or spiritually
- it has on our family."
"It’s especially hard on the other kids when
Danielle’s really bad. They need someone who understands to talk to. I
wish we had more time to spend with them, but Danielle takes up most of
"It would be very helpful to know what services
are available in the community so that we can access them to ensure
Rebecca has all the available support we can provide. Organizations such
as the Department of Family Services and Disability Services Queensland
have never been utilized as I did not know I could."
You may remember reading about, and some of you would have participated in, the research project conducted by Epilepsy Queensland into the needs of families with children with uncontrolled epilepsy or epilepsy and another disability. This project was funded by Disability Services
Queensland. If you are interested in obtaining a copy of this report, please
contact Epilepsy Queensland.
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