Tobique First Nation has initiated a joint study with the University of New Brunswick?s nursing faculty to assess the community?s prevailing attitude toward a disease that once killed large numbers of Maliseet people, but is nearly dormant in the province now. The qualitative research study of how tuberculosis affected the Maliseet will be completed the end of March.
Researchers are interviewing band members who can relate how tuberculosis affected their families as much as 50 years ago.
At that time people were removed from their communities for treatment to avoid contagion, and sometimes that meant families were broken up for good. Roxanne Sappier, executive director of Tobique?s Wellness Centre since April 1999, likened it somewhat to the residential school experience, even if the reasons for the removal were more humane.
She said on Dec. 19 that Medical Services Branch put out a call for proposals for a research study on tuberculosis, so she contacted the New Brunswick Lung Association. The association put her in touch with a university research team led by nursing teacher Grace Getty.
Although Tobique is partnered with the university, the community controls the project, which began this fall and is nearly half completed, said Sappier. People who have a trust relationship with the Elders are conducting interviews with 20 of them on reserve, each interview lasting up to three hours. Researchers are also talking to nuns who used to have the responsibility of diagnosing and treating tuberculosis. Later they will also hold focus groups so that everyone?s views and memories can be recorded and included in the study.
?We could easily do 40 interviews,? we had so much interest,? Sappier said. Confidentiality will be preserved.
The team from the First Nation includes two nurses and a doctor, as well as trainee transcriptionists and people learning how to code the transcriptions for use in further research. Coding involves analyzing the responses and putting them in categories of responses.
For example, ?was this related to being scarred, was this related to a childhood role? . . . Was this the influence of the church? Was it a failure of the health care system? This will all come out in our findings,? said Sappier.
?Most of the costs (for staff) are being spent in the community,? she added. ?We own the project . . . and our health board was asked to be advisors.? She said being affiliated with a strong research partner such as the university allowed them to gain extra skills.
On the university side, Getty is aided by nurses Penny Ericson and Kathy Wilson.
Sappier said they explained to the community the reasons they wanted to study the social and psychological effects of tuberculosis before approaching the Elders for support and to record their stories. Their response was ?very open?wonderful,? said Sappier. ?It?s painful for them too,? she said, to recall their feelings about the fear and isolation of those times. Some can recall that many communities were nearly wiped out by the disease, which formerly was often believed to be a death sentence.
The project was supposed to take a year, but Tobique was not notified there was funding available until May 18, the deadline for application was in June, and they got approval in ?September or October.?
They call the current study phase one. The First Nation will apply for funding for phase two after their final report is submitted next June, Sappier said, when they will focus on health promotion and tuberculosis testing. So far, no widespread screening has been done on the reserve.
?I think we had a couple of cases that kind of spurred the interest too. We know that it?s coming back,? she said, ?and we felt just as unprepared to deal with it.?
Decades ago treatments for tuberculosis, which is a bacterial infection of the lungs, were protracted and caused illness.
Although New Brunswick now has the lowest rate of tuberculosis in Canad, ?that does not mean there is none,? said Getty, the university?s principal investigator. Both she and Sappier mentioned the unfortunate stigma that results in some communities still being very reluctant to talk about it. The last sanitoriums in New Brunswick were closed in the 1970s.
Getty said Tobique?s wellness centre approached the university because it wants to be proactive in eradicating the disease, which is still the leading cause of infectious disease death in the world.
One concern of health professionals is that tuberculosis can easily be spread by people who have HIV or AIDS, Getty said.
?I think HIV has brought back the (tuberculosis) epidemic to some degree to lots of communities.?
It is known that the AIDS virus is increasing rapidly among some segments of the Aboriginal population, who are very mobile. The immune systems of HIV carriers are already severely compromised, meaning they are very susceptible to tuberculosis. From there it can be spread to others whose immune systems are weak, such as elderly or poor people. The aging factor alone decreases immunity and increases the chance of contracting tuberculosis by five per cent, said Getty.
?A lot of people who are tuberculin-positive (meaning they) carry the bacteria, could activate if their immune system breaks down.?
Sappier was asked how many people were carriers on the reserve. ?We don?t even know that yet,? she said.
Getty added, ?the people that work in the health centre at Tobique really saw this as an opportunity to put some resources into developing a program that would help people look after their health . . . instead of reacting to the crisis of (tuberculosis) happening, it?s trying to figure out how to prevent it and how to move forward so that resources are in place.?
Health Canada?s 1996 statistics show that nearly 24,000 status Indian people inhabit the Atlantic region and there were no known new or reactivated tuberculosis cases among them in 1996, either on-or off-reserve. The same data reveals that Saskatchewan, with more than 93,000 status Indians, had a reported incidence rate of 105 per 100,000 of its on-reserve population, the highest in the country.
?I think the impact TB had in Native communities was overlooked,? Sappier concluded. She said the things they are learning through their study are ?not just important for TB, but for gaining insight into life back then.?