Epilepsy is still a condition plagued by myths and misunderstandings with families of children with epilepsy often left feeling isolated and unable to cope, according to a University of Queensland study.
School of Psychology PhD student Deirdre McLaughlin interviewed 210 families and carers of children with epilepsy, identifying access to information about their child's condition, social support networks and respite care as some of the most pressing needs.
The average age of children with epilepsy in families interviewed was 11 but the children concerned ranged in age from birth to 32.
Ms McLaughlin said epilepsy could be an inherited, genetic condition or brought on by injury or lack of oxygen at birth (hypoxia). In around half of all cases, the cause was unknown.
"Epilepsy affects around two percent of the population and there is a high incidence of the condition being associated with other disabilities such as autism, cerebral palsy and intellectual disability," Ms McLaughlin said.
"Many parents and carers as well as siblings of the child with epilepsy find it extremely difficult to cope and feel cut off from their local communities. Some of the families attending my focus groups reported it was the first time they had ever been in contact with other parents and carers in their situation."
The report, entitled Living in the shadows, was funded by Disability Services Queensland, and prepared for Epilepsy Queensland.
Among its key recommendations were: the establishment of regional offices to provide information for families in areas outside major centres, respite services and support networks for families; increased government funding for Epilepsy Queensland to allow greater information dissemination to GPs, nurses, psychologists, social workers and teachers; and funds for a wider education campaign to help remove some of the fear and stigma associated with epilepsy especially seizures.
"Most people are shocked and scared when confronted by someone experiencing an epileptic seizure. These seizures involve a loss of consciousness and the involuntary tensing and releasing of muscles," Ms McLaughlin said.
She said the main steps to take in the event of a person experiencing a seizure were:
o stay with the person, don't walk away or panic
o remove items from the vicinity which could cause injury to the person such as sharp objects
o lay the person on his or her right side in the recovery position
o don't try to pull the person's tongue out or insert a spoon to keep the tongue down. This is more likely to cause the person to break teeth as they clench his or her jaw
o don't restrain the person
o only ring an ambulance if the seizure lasts for more than five minutes
For more information, contact Deirdre McLaughlin (telephone 07 3365 6831 on Tuesdays and Fridays, 07 5463 0028 all other time or email deidre@psy.uq.edu.au) or Shirley Glaister at UQ Communications (telephone 07 3365 2339 or email s.glaister@mailbox.uq.edu.au).
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