Researching With Respect
It is certainly no secret that American Indians suffer disproportionately from many serious health problems, including diabetes, cancer, AIDS and substance abuse. Nor is it news to most nursing professionals that more research into the causes of these health disparities is urgently needed in order to develop effective, culturally competent prevention and treatment programs. But despite this common knowledge, American Indian populations and their culture are familiar yet foreign to much of the nation’s nursing community.
Because Indians are severely underrepresented among the ranks of nurse scientists, many non-Indian nurses have conducted research in Indian communities–or have attempted to do so. The key factor in determining whether such research projects will be successful or fruitless is the nurse’s awareness of, and ability to overcome, the unique challenges involved in working with Indian populations. Many of these challenges relate specifically to the issue of conducting research in a manner that is culturally sensitive to Indian communities’ needs.
The first challenge researchers must meet is that of establishing trust and proving their commitment to conducting research in a culturally respectful way. Many Indian tribes are distrustful of outsiders and do not welcome researchers into their communities. Furthermore, Indian communities have been the focus of hundreds of research studies over the years but have not always had the opportunity to benefit from these projects and their findings. Because of this overuse of Indian communities, many tribes have become closed to non-Indian researchers.
Nurse researchers need to understand that it takes time to build trust. Sometimes, getting a research project started in a tribal community can take one to two years–or more–of preparation before the researcher can even begin the study. Therefore, researchers not only need to be committed to overcoming barriers of distrust but must also be willing to commit time to getting access to the Indian community.
Getting It Right
There are several culturally sensitive steps a researcher can take when preparing to conduct a study in an American Indian community. The first step is to identify what type of Indian community it is–a reservation, a non-reservation community, an Indian nation, a tribe, a band, a federally or non-federally recognized tribe or an urban community.
This knowledge is important because there are cultural and historical differences between these various types of communities, such as languages, degrees of assimilation, means of identifying tribal members, and sustained cultural practices, to name a few. There are also differences in community size, tribal governance and the tribe’s relationship with the U.S. government. Researchers must be familiar with these distinctions in order to address the community and its members knowledgeably and appropriately.
For example, an Indian reservation is a self-contained tribal entity with its own government, governing rules and land base, while a non-reservation Indian community–such as those in Oklahoma–may have a tribal government but not the land base. The terms “Indian nation” and “tribal nation” refer to the largest Indian communities, while “band” usually refers to smaller groups of people within one tribe–e.g., the Ojibwe tribe has many bands, and the governing structure for each band may vary. Therefore, members of an Indian nation may be offended if an outsider calls it a band or a tribe, and vice versa.
Researchers also need to consider the region of the U.S. in which the Indian community is located–e.g., Southwestern, Southeastern, Northwestern, Eastern, state of Oklahoma or state of Arizona. Each region has had its own impact on the history and development of the Indian communities it contains.
For example, in Oklahoma during the territorial days, the state was made up of many Indian reservations. But in the early 1900s these reservations were taken away from the tribes, and each enrolled Indian person was instead given a parcel of land. This change in the land base dramatically altered the way of life for Oklahoma Indians.
In addition to learning as much as possible about an Indian community’s history, structure and culture in advance, a researcher preparing to conduct a study in that community may also want to visit the area. Much can be learned from visiting the community’s cultural center, attending a public Indian event in the community, visiting a historical Indian site, talking to the local Indian people and becoming familiar with the local customs.
When visiting the Indian people, a researcher who is culturally sensitive will ask them how they prefer to be addressed and how they want to be identified. For example, members of the Navajo Nation may prefer being identified as “Diné” rather than “Navajo.”
It’s also important to let the Indian people reveal information about their community in their own way and in their own time. If you ask them direct questions, you might not get answers. Indian people believe in developing a oneness of spirit with another person before information can be exchanged.
Working With What You’ve Got
Another challenge a researcher may need to overcome is the limited availability of resources in an Indian community. Because many tribal communities are poor and do not have economic development, the people who live there generally lack financial resources as well as adequate housing, transportation, sanitation, clothing or food.
Furthermore, many Indian communities are located in remote and rural areas of the country where access to necessary resources and services is severely limited. In the Deep South, for example, there are many small Indian communities in rural areas where there is no public transportation and no emergency services, hospitals, clinics, or physicians nearby to care for the Indian people. These people must drive long distances to receive health care–if they even have a car.
When conducting a research study, these kinds of factors can influence the outcome of the project. For instance, the Indian people may not even be able to arrange transportation to participate in the study. You will have to bring the study to them.
Difficulty in obtaining a large enough sample size is still another obstacle that can prove frustrating for nurses who want to conduct research studies in an Indian community. The largest tribe in the U.S. is the Navajo Nation, which has over 250,000 enrolled members, followed by the Cherokee Nation with around 222,000 enrolled members. Most tribes, however, are much smaller in size, averaging only a few hundred or thousand tribal members. As a result, American Indians are often not included in studies examining significant health problems like breast cancer and lupus, because the sample size is too small to be statistically valid.
It is not always easy to find a solution to this problem. Some experts suggest grouping several small tribes together to increase the sample size, while others argue that this method is not always culturally appropriate and that tribes do not like to be “lumped” together in this way. Another possible approach would be to explain the reason for the small sample size and adjust the statistical significance accordingly. For example, if 50% of the people in a tribe are diabetic, this is a significant finding even if there are only 250 tribal members.
Because of the negative research experiences they have had in the past, many Indian communities are now demanding more respect from outside researchers, as well as a greater sense of co-ownership in the study before, during and after it is conducted. To be culturally sensitive, nurse researchers must strive to develop a more “equal” partnership with the tribe.
Traditionally, many researchers have only wanted tribal communities to assist with recruitment of subjects and nothing else. Once the data was collected, the researchers never returned or followed up with reporting the findings back to the community. The tribes did not know the outcomes of the studies. The researcher benefited from the study while the tribe received few, if any, benefits from its members’ participation in the project.
Tribes are also raising questions about who owns the data from a research study conducted in their community and are demanding more control over how the data is handled. In some studies, the findings were not only published without any input from the tribal community but also published in a way that reflected negatively on the tribe.
To cite just one example, a researcher who conducted a study on health problems occurring in an Indian community in the Midwest did an interview with a local newspaper about her findings. She did not get an opportunity to review the reporter’s article before it was printed. When the article appeared, it contained disparaging and factually inaccurate comments about the tribe’s cultural traditions and how they allegedly contributed to the Indians’ health problems.
In addition, much of the research that has been conducted with Indian populations has tended to put too much emphasis on the “culture of poverty” in tribal communities. By focusing on the effects of poverty on Indian peoples’ way of life, many researchers have overlooked the strengths of the Indian community. As a result, a growing number of tribes are insisting that researchers focus on tribal and cultural strengths instead of on health deficits.
For instance, many studies have been conducted about the breakdown of American Indian families but very few have explored the positive aspects of Indian family life. One notable exception was a recent study on Indian parenting in which the researcher described how Indian mothers parented in such a way that the harmony (natural development) of their children’s lives was promoted through passive forbearance (the Indian pattern of care).
The Indian mothers did not parent in a way that controlled their children’s development but rather in a way that enhanced natural development through unobtrusive, respectful behaviors like listening, observing and being an example to others. In other words, the researcher chose to focus on the cultural patterns of parenting instead of on how poverty impacted the parenting.
Because of these kinds of experiences, tribes that participate in research studies want more of a say into the interpretation and dissemination of the findings. A researcher may need to include the tribe in the analysis of the data and get tribal approval for publication of the findings. This kind of tribal involvement can be written into the research proposal.
Finally, many Indian communities have become more “research-savvy” in order to better protect their interests. Many tribes now have their own Institutional Review Boards (IRBs) to which potential researchers must submit their proposals. Nurses who wish to do research in a particular Indian community need to become familiar with the appropriate procedure for obtaining the tribe’s permission to conduct the project. You may need to not only get the tribal IRB’s approval for human subjects but also get approval from either the tribal chief or tribal council.
In one research study conducted with a Southwestern tribe, the researcher had to first get approval from two tribal subcommittees and then go before the 15-member tribal council before approval for the project was given. The entire approval process required five visits with the tribe, and it took six months before the final decision was made.
Sometimes tribes will “barter” with researchers to ensure that both sides benefit equally from the partnership. For example, members of one small tribe in the Deep South successfully negotiated an arrangement in which the researcher agreed to assist them in writing an economic development grant in exchange for their participation in the study.
Playing by the (Cultural) Rules
In summary, nurse researchers must remember two important ethical principles when conducting studies in American Indian communities. The first is right to informed consent. The tribe needs to know the purpose of the research, who will benefit from the research, and how the research will be conducted with appropriate tribal input.
The second principle is do no harm. The researcher has an ethical duty to protect the tribal community by not violating cultural norms, by not publishing findings without approval from the tribe and by taking measures to protect the Indians’ culture. By following these rules of cultural sensitivity and respect, nurse scientists will greatly increase their chances of successfully overcoming the challenges of conducting much-needed research on American Indian health disparities.