MDs get crash course in Inuit culture as young patients arrive in Ottawa

Heather Kent

CMAJ 2000;162:1481

Two-year-old Jeanne Marie Arnatsiaq of Igloolik, Nunavut, with Danielle Rossi (right) and Alice Pesa of the Children's Hospital of Eastern Ontario Photo courtesy of CHEO

Today, Dr. Robin Walker, CHEO's chief of neonatology, and his colleagues are trying to find out why children in Canada's North seem to experience more illness than southern children and why premature babies are disproportionately sicker than similar babies born in southern Canada. "We are seeing this from the perspective of a southern, tertiary referral centre, so we are only scratching the surface of what the real health problems are," says Walker.

Although it's uncertain why premature babies from Nunavut seem sicker, the picture is clearer for another group of young children who have respiratory syncytial virus (RSV). RSV is far more common among children in Baffin Island than in southern Canada, says Walker, and this higher incidence is also found among children in Alaska. Whether the cause is a genetic predisposition or environmental factors is unclear, and CHEO researchers are setting up a national research network to study the virus in Northern children.

Another condition the Ottawa doctors are witnessing is necrotizing endocolitis, which affects both older and premature Inuit babies; in southern Canada it is seen mainly in premature babies. "This is not something, to the best of our knowledge, that has been described elsewhere. That doesn't mean that it hasn't happened elsewhere, but it could be that no one has done any research into this." The new research network will also study this condition.

Babies with necrotizing endocolitis often spend several months in hospital because of their dependence on intravenous feeding. Because the Nunavut government only pays for parents to visit once during a child's hospitalization, there are long periods of separation. Walker would like to have a facility for these parents to stay in while they visit Ottawa, which would supplement the existing Ronald McDonald House at CHEO. "We are recognizing the difficulty for patients and families when stays here are very long. Even if it's not possible for children with 'technological dependence' to return to Baffin, at least if they were able to be in some kind of nonhospital setting in [Ottawa's] Inuit community, that would be better."

To help overcome cultural differences, the hospital relies heavily on Ottawa's "very supportive" Inuit community of about 500 people, and on the Ottawa Health Services Network, which looks after travel arrangements, discharge planning and interpretation services. Inuit families often speak only 1 of the region's 2 main dialects, so interpreters are needed around the clock.

One cultural practice CHEO doctors encounter frequently is the informal adoption of babies by the Inuit. This is considered quite natural, says Walker and "it's important to learn not to react in a stereotypical, southern way."

The challenges of delivering health care to residents in the 2-million square kilometres of Nunavut has caused Walker to expand telemedicine links. Baffin Island's Iqaluit Hospital serves 27 000 people, but most Inuit live closer to nursing stations scattered throughout the territory. A satellite link, "with a circuitous route" via Yellowknife, has recently been set up to connect CHEO with the Iqaluit Hospital, where pediatric care is provided by rotating residents from CHEO; this satellite link will eventually be expanded to remote nursing stations. Eventually, Walker hopes to evaluate babies and communicate with parents at nursing stations through these telelinks. They will provide faster, more convenient and cheaper service, since medical transportation to Ottawa costs $30 000 per patient.

Walker has found the Inuit experience "incredibly instructive. We are learning a tremendous amount about the culture, environment and distance. We have also learned about how the Inuit culture handles illness and the amazing stoicism and strength of these communities in the face of sometimes terrible illness and adversity. I think that everyone who works here gains tremendous respect for the strength of the culture and the communities.

"We feel a bit like pioneers because some of the things [we are doing in the North], like telehealth, are very new, and some of the research areas we are looking at seem to be new."

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