By Te Aorewa Rolleston of RNZ
A Māori paediatrician is committing to research to help understand the impacts of epilepsy on children and the disproportionate factors which burden Māori and tamariki Māori.
Dr Ngaire Keenan (Ngāti Te Whiti, Te Ātiawa ki Taranaki), through an Otago University health research council funded project, is focused on understanding the reasons behind the increasing rates of epilepsy experienced by Māori children.
"What we're trying to ask is, is this disproportion or higher burden also related to the way the health system is treating Māori or tamariki Māori".
She said it is one thing to look at the epilepsy itself, but it was also about how epilepsy was impacting these children and their whānau and whether they are they getting the appropriate care from the health system.
Four thousand children are affected by epilepsy in Aotearoa and almost a third will experience uncontrolled seizures and have poor outcomes.
But Keenan suggested that this may have been an underestimate and the rate was a lot higher but there was still data needed to confirm this.
When investigating epilepsy in Māori and tamariki Māori, research shows that Māori face significant harm and are more likely to be admitted to hospital and emergency department visits.
"What we do know is that Māori have higher burden of epilepsy so they're more likely to be in hospital with their seizures, more likely to have severe longer seizures and the mortality rates in Māori with epilepsy are higher," Keenan said.
She said, despite epilepsy being the most common serious neurological disorder in children, it has been poorly researched, and this is even less for paediatric epilepsy or epilepsy in Māori.
She hopes the two-year funded research project, by an HRC Clinical Research Training Fellowship, will bring further understanding of the causes of epilepsy in Māori children and to help discover solutions for preventing children from developing epilepsy.
"I have seen and treated many tamariki over the years with epilepsy and I know how important this is not just for the child or the individual, but it is also very important for the whole whānau."
Keenan also highlighted that, given Māori already faced dire health outcomes, there are also long-term impacts caused by epilepsy which are threatening.
"Studies have shown that people with epilepsy are less likely to get a job, they can't drive, they are less likely to get married. It is associated with a lot of social discrimination.
"We don't know what causes epilepsy in Māori children, but some will be related to preventable conditions, such as meningitis, traumatic brain injury or birth trauma. If meningitis is contributing to higher numbers of children developing epilepsy, for example, then we may need to develop better immunisation programmes."
Keenan's research will see if tamariki Māori are being referred to specialists at the same rate as non-Māori and are getting access to the right types of medical care.
"It is really important to identify the cultural safety aspect of the health profession and make sure Māori children with epilepsy are getting high-quality care according to best practice."
She hopes her research could lead to the development of more culturally appropriate health care for Māori children with epilepsy.
"We're really aiming for an improvement in the overall epilepsy care in Aotearoa.
"This study will be the first step to improving health inequities in tamariki Māori with epilepsy and what we're hoping is that this study will allow us to identify these inequities ... by understanding this we can then work with Māori to develop pathways that aim to improve these health equities."