MISSION: Southwest Research and Information Center is a multi-cultural organization working to promote the health of people and communities, protect natural resources, ensure citizen participation, and secure environmental and social justice now and for future generations

The Challenges of Community Health assessment in Navajo Communities

For the last 20 years, communities in the Navajo Nation have focused on improving individual health and building healthier communities. The growing health and wellness movement in Navajo communities was prompted largely by community demands to address documented health disparities among American Indians and Alaska Natives. Capacity building and empowerment emerged as both theory and strategies to address local communities’ common questions about health. Private foundations and government agencies began providing funding to support these efforts.

A community health assessment is the principal tool used to ascertain community concerns about health and to document both community needs to improve health and community assets that could be used to initiate health programs. Community-based participatory health assessments are the foundation for two community-based research studies that I have been involved with, both as a resident of Ramah Navajo Chapter and as the Navajo Community Liaison for Southwest Research and Information Center (SRIC). The two programs — the Core Capacity Project for Ramah Navajo and the Diné Network for Environmental Health (DiNEH) Project based in Crownpoint, New Mexico — both involve the use of lengthy questionnaires to measure individual attitudes, beliefs and knowledge about health. In both projects, I helped develop, refine and conduct these surveys. From these experiences I have gained much insight into the challenges presented when conducting health assessments in largely non-English speaking communities and among people with limited levels of formal Western education. But the rewards of seeing your neighbors and members of other Native communities take part in research that is done in their own language and that will benefit them for generations to come far outweigh the difficulties that community-based research presents.

The Ramah Navajo Core Capacity Project

In the case of my home community of Ramah Navajo Chapter, a preliminary survey among key community members identified one particular concern — the increasing number of breast and cervical cancers among local people. The Core Capacity Project was created from this initial survey. The Project had two original aims: to develop the capacity of tribes to address their own health issues and to increase early detection of breast and cervical cancer. The partnering entities were the Albuquerque Area Indian Health Board (AAIHB), the University of New Mexico Master of Public Health (UNM-MPH) Program and Ramah Navajo School Board, Inc. (RNSB, Inc.). Funded by the U.S. Centers for Disease Control and Prevention (CDC) REACH 2010, the project brought together a diverse committee of service providers, educators, and community elders to represent the local public health system. UNM-MPH introduced a “Visioning Data Collection Process” in preparation for the assessment. From this process evolved a survey instrument containing 150 questions that addressed 11 topic areas ranging from demographics, health, education, language and culture to youth concerns, tribal government and law enforcement. The survey was administered in 300 randomly selected households.

The DiNEH Project

The DiNEH Project was developed at the request of the Eastern Navajo Health Board (ENHB), which in the late 1990s ENHB learned that chronic kidney disease was occurring at rates 3 to 4 times the national average in the 16 Navajo communities that make up the Crownpoint Service Unit (CSU) of the U.S. Indian Health Service. The Board also learned that environmental factors — especially exposure to uranium and other heavy metals in untested and untreated water supplies — could be playing a contributory role with diabetes and high blood pressure in causing the high rates of kidney disease in the regional population.

To address these concerns, ENHB asked public health physicians on the CSU staff and researchers with SRIC and the University of New Mexico’s Community Environmental Health Program (UNM-CEHP) to help design and implement a community-based participatory research project that would directly involve community members in conducting environmental health assessments. The DiNEH Project was funded by the National Institute for Environmental Health Sciences (NIEHS) for four years beginning in 2004. The project’s principal goal is to build environmental health capacity in 20 Eastern Navajo Agency chapters. The long-term goal is to enable Navajo communities to conduct their own research to determine if uranium and other heavy metals that may be present in unregulated water supplies (see sidebar), at abandoned mining sites, in natural rock formations or in occupational settings are associated with the high rates of kidney disease in the Eastern Agency.

The DiNEH Project, which is coordinated by and employs Navajos who live in the study area, is conducting a health survey in each chapter to determine water usage, human exposure to uranium and current health status. I am one of several Navajo-speaking interviewers who are conducting the lengthy survey. The survey was designed and pilot tested in 2004 and has been refined nine different times to reflect experience and lessons learned in the field. Participation in the survey is voluntary. The Project’s present objective is to survey 500 individuals in the 20-chapter study area. The survey will determine which unregulated water sources are most often used in each community, and this information will in turn allow the Project staff, with the advice of community members and leaders, to prioritize water sampling that will determine the safety of local water sources. The results are being provided to chapter leaders and members in each community to inform them of the potential health risks of drinking water from unregulated sources and to provide information on safe drinking water alternatives. Staff members of the partnering organizations are conducting training and making presentations for community leaders and members to enhance their knowledge of environmental health principles and how to understand and interpret water quality data. Ultimately, results of the health surveys, water-testing program, and monitoring of dust levels in air in residential areas near abandoned uranium mines will provide individual exposure data for incorporation into a biomedical study of kidney health among residents of the study area.

Challenges of Research in Navajo Communities:
Government Approvals Are Requisite First Step

There have been many challenges in this multi-year process of developing and implementing community standards. Once the assessment instruments, that is, the surveys themselves, have been finalized, they must be submitted for review and approval by the UNM Human Research Review Committee and the Navajo Nation Human Research Review Board (NNHRRB). Thereafter, the projects must submit quarterly progress reports and give periodic oral presentations at NNHRRB meetings. Any changes in the survey questions, the informed consent and confidentiality forms, and presentation of water quality and other environmental data to the participating communities must be submitted and approved by the Board. NNHRRB insists that all human research on the Navajo Nation adhere to strict requirements for the informed consent of participating individuals and for maintaining the confidentiality of participants and their responses to survey questions, while providing direct benefits to participants themselves, the local communities and the Nation as a whole.

Dealing with Language Issues

Conducting the field health surveys involves two languages, English and Navajo. The language barrier that exists with our grassroots elders who do not speak or understand the English language necessitates having skilled interpreters and making accurate translations. For consistency, the surveys are translated into written Navajo for the team to reference during interviewing. The development of the written Navajo translation is time-consuming and calls for consultation with elders and Navajo language specialists on correct word meanings unique to each community’s dialect. The Ramah Navajo community health assessment, for instance, took almost two years to translate 150 questions into written Navajo language.

The dialect of our Navajo people varies from community to community because of differences in the way the language is spoken and the great geographical distances between these communities. For example, the word for “windmill” in Eastern Navajo communities is not the same as in Ramah Navajo. Navajo language is descriptive. To say windmill, Ramah Navajo residents would say “dah na’aabaal”, meaning something is flapping like a flag on a pole, but in Eastern Navajo, one would say “ná’oobalí”, meaning something is turning like a pinwheel. Similarly, translating the word “electricity” presented a unique cultural challenge for one might say “atsin’tl’ish”, meaning “lightening,” rather than “bésh lichíí’ii bee da’diltli’ígíí”, meaning the red-orange wiring that gives light. The elders would scold us for saying “atsin’tl’ish” (lightening) because it is a sacred word used only in healing ceremonies and in protection prayers. It is not to be used in a casual manner. It is appropriate to be descriptive in translating electricity as “bésh lichíí’ii bee da’diltli’ígíí” (the red-orange wiring that gives light).

Like the DiNEH Project survey, the Ramah Navajo community assessment was pilot tested to determine the facility of administering the survey by interviewers. In the first test, the survey was given without a written Navajo translation. As a consequence, the survey took up to six hours and the time varied with each interviewer’s ability to translate the English questions into Navajo. This caused the Ramah advisory committee to reanalyze the methods of implementation. From this point on, each question was translated into written Navajo and interviewers were given training in proper language pronunciation and usage. Weekly meetings were held with interviewers to share and discuss issues involving survey administration and translation, and to help each other to address language barriers. As surveys continued, the interviewers’ individual and collective interviewing skills improved, and the surveys got better and easier to conduct for both the interviewers and the interviewees.

Culturally Appropriate Protocols are Needed

Developing protocols to conduct surveys has been an on-going task. During pilot testing of the survey tools, how a prospective survey participant is first approached by the interviewing team was not fully determined because of the uniqueness of each community. The appropriate way to approach Navajo people is with the intent to establish good rapport and with a demonstrated sense of the Diné way of relationship. Diné self-introduction includes where you come from and the self-identification of your four clans — the clan you belong to, the clan you are born for, and your maternal and paternal clans. One is taught to address a Navajo audience in kinship terms — k’é — and the people in relationship terms. You should always acknowledge the leaders of the community, as well as your leaders. And you should emphasize that the project staff is available to assist the community leaders in addressing the community’s needs and concerns and avoid sounding like you are telling them what to do or scolding them for failing to act. These gestures almost immediately establish the rapport needed to get people to listen to you, and ultimately, to participate in the survey. Diné ways of public speaking are an important skill, and having this skill is expected by the Navajo elders.

Field Work: Conducting Surveys in Rural, Remote Areas

Conducting community assessment requires extensive travel to remote rural areas of each community. For the most part, residential areas are not in rows of houses as is typical in American suburbs. Rather, traditional Navajo housing occurs in clusters, called “camps,” that house the same extended family; blood relatives often live a short distance away. Travel on all gravel and dirt roads is a challenge, especially in rainy or snowy weather. Our survey teams have had to remember the importance of community and individual readiness for participation in the surveys. We often set up a portable shelter when conducting interviews in the field and provide bottled water and fruit juice to participants during the interviews. We must also keep the community abreast of project implementation and progress by making presentations at monthly chapter planning and regular business meetings. We also use local radio public service announcements, flyers, poster presentations at community events, and PowerPoint presentations.

DiNEH Project staffers (right) conduct a demonstration health survey with a local woman (center rear) as students from Northern Arizona University (left) observe.

Our collective experience with the DiNEH Project survey has placed into question one of our most fundamental assumptions about how we would enroll people in the study — by sitting at a frequently used well and waiting for the water haulers to arrive. As they filled their barrels or other containers, we would conduct the survey. We had reason to believe that this was a sound method of finding participants because Navajo people have been hauling and using water from unregulated water sources for many generations. Conducting surveys at the wellhead would have the added benefit of verifying at least one source of an individual or family’s environmental exposure — the water in the well from which they were hauling.

But as the DiNEH Project surveys have progressed, our practice of conducting surveys at the wellhead has declined. We simply were not able to predict accurately when people would be hauling from a particular well. In the early months of the project, we would sit at wells all day — in the early mornings, in the evenings after work, and even on weekends — and conduct not a single survey because no one would come to haul water. When we encountered people hauling from a particular well, the haulers often were the grandchildren of elderly people, and it was the elders, not the grandchildren, who were using the water for drinking, cooking or livestock. In those cases, we had to obtain the names of the end users of the water, go to their homes, and ask if they would like to participate in the study. We have since learned that we obtain more participants in the survey by conducting educational programs at the chapter houses and other centralized community locations. We then schedule appointments with individuals who volunteer to be interviewed and the interview usually takes place at their home.

Contributing to Land-Use Planning

Navajo chapters are akin to counties — they are the local unit of government on the Navajo Nation. Until the Navajo Nation enacted the Local Governance Act in the mid-1990s, the chapters had no real governmental powers; they were essentially recommending bodies to central tribal government. Today, to become certified as a local government, the chapters must adopt five fiscal and administrative management systems and a land use plan. The land use plan identifies existing natural resources, outlines plans for community infrastructure, such as housing and community facilities, advances strategies for economic development, and provides the basis for enactment of laws and policies to govern land use within the chapter boundaries. A “water plan” is an essential element of each community’s land use plan, and the DiNEH Project’s water quality assessment program has emerged as a significant contributor to each chapter’s knowledge of and planning for future water development.

Unfortunately, the vast majority of unregulated water sources in the Eastern Agency have never been tested, and for those sources that were, the water quality data can be 35 to 50 years old and of limited scientific value. Accordingly, field and laboratory tests conducted by DiNEH today generate results that cannot be compared fully with data from the past. Tribal records for old wells often either do not exist or are inaccurate, and even the identifying numbers stamped on tanks next to windmills, flowing wells and springs sometimes do not match the identifying numbers found in tribal water records. DiNEH Project staff is working with chapter officials and community members to resolve these discrepancies. To reduce confusion over the identities of certain wells, the traditional Navajo names for some water sources are being cross-referenced with their tribal ID numbers. This practice allows elderly community members to talk about the water sources they use in words they are familiar with.

Community Knowledge Empowers, Prevents

Research has a place in native communities if it draws from local knowledge and involves community members. Collaboration in research projects needs to be community driven because grass-roots people have accurate information to contribute. Traditional native ways should be incorporated in the research and the researchers need to be mindful of them. In the Navajo projects I work on, the community assessments appropriately consider traditional Navajos ways. As a result, local people have taken ownership in both of these projects.
Information obtained from the assessments will serve the communities for many years to come. The Ramah Navajo project has taken three years. Once a preliminary report is shared with the advisory committee, further input will be sought before a final version of the community profile is completed. The questionnaire will be put in the community’s archives to be retrieved and revised every five years. It will be a resource and example for other projects across the country.

Even with the challenges of having to deal with 20 chapters in the DiNEH Project and the geographic and linguistic differences within those communities, I am reminded of how I am connected through clan relationships across these vast areas of the Eastern Agency. My mother, who is 79, said, “You are in the middle of people that are closely related to you.” As a Diné, this has been a learning experience. There are clans that I had never heard of, and they have come from Arizona and great distances away. This helps me communicate with community members. The people appreciate talking about their clans.
The health issues we are addressing, like cancer, have affected my family because it is occurring in my husband. Yet this personal adversity has opened a whole world to me and I can tell people how I have dealt with it, and I am better able to speak about preventing it. And this helps me explain why the DiNEH health survey and the water testing are so important. The information from these assessments will help the communities educate their residents, plan for appropriate development, and most important, prevent new illnesses.

– Sarah Henio-Adeky

Unregulated Water: A potential health hazard to many navajo people living in remote areas An “unregulated” water source is a windmill, flowing well or developed spring that is not regularly tested or treated to ensure that the water meets federal and tribal standards for safety. For decades on the Navajo Nation, these water sources have been designated “for livestock use only.” But in the arid high desert of the Colorado Plateau where the Navajo Nation is located, Navajos living in remote areas have hauled water from unregulated sources for all purposes, including drinking water. In fact, in 2001, the Navajo Tribal Utility Authority (NTUA) estimated that about two-thirds of the homes in the Eastern Agency was not connected to a public water system system; that is, the homes did not have “running water.” Recently, the DiNEH Project staff learned that a little-known tribal program has employed individuals to haul water from unregulated water supplies to elderly people living in remote areas in the Eastern Navajo. An earlier survey conducted in the Church Rock area found that 80 percent of those interviewed said they still haul water for all purposes, including for human consumption, even when hooked up to the NTUA water system. Thus, while the number of families hauling water for purposes other than livestock use seems to be decreasing in the study area, the practice of using water from unregulated sources for human consumption widely persists. Jerry Elwood, a staff member of the DiNEH Project, inspects a storage tank at a developed spring in Coyote Canyon Chapter. Bernice Norton, a staff member of the DiNEH Project, records a latitude-longitude location for another unregulated well in Becenti Chapter.