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RESEARCH AND PRACTICE |
Nicolette I. Teufel-Shone is with the Mel and Enid Zuckerman College of Public Health at the University of Arizona, Tucson. Thomas Siyuja, Helen J. Watahomigie, and Sandra Irwin are with the Hualapai Health Department in Peach Springs, AZ.
Correspondence: Requests for reprints should be sent to Nicolette I. Teufel-Shone, PhD, Mel and Enid Zuckerman College of Public Health, PO Box 245158, University of Arizona, Tucson, AZ 85724 (e-mail: teufel{at}u.arizona.edu).
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ABSTRACT |
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 TOP ABSTRACT INTRODUCTIONFormative Assessment and...The Hualapai CommunityMETHODSRESULTSDISCUSSIONReferences |
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Objectives. Using a community-based participatory research approach, a tribe–university team conducted a formative assessment of local factors that influence youth wellness to guide the design of a culturally and locally relevant health promotion program.
Methods. Open-ended interviews with key informants, a school self-assessment using the Centers for Disease Control’s School Health Index, and a locally generated environmental inventory provided data that were triangulated to yield a composite of influential factors and perceived need within the community.
Results. Family involvement and personal goal setting were identified as key to youth wellness. Supportive programs were described as having consistent adult leadership, structured activities, and a positive local and regional image. Availability of illicit drugs and alcohol, poor teacher attitude, and lack of adult involvement were significant negative factors that impact youth behavior.
Conclusions. Local/native (emic) and university/nonnative (etic) perspectives and abilities can be combined to yield a culturally relevant formative assessment that is useful to public health planning. In this collaborative effort, standard means of data collection and analysis were modified in some cases to enhance and build upon the knowledge and skills of community researchers.
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INTRODUCTION |
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TOPABSTRACTINTRODUCTIONFormative Assessment and...The Hualapai CommunityMETHODSRESULTSDISCUSSIONReferences |
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Formative Assessment and Community-Based Participatory Research |
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TOPABSTRACTINTRODUCTIONFormative Assessment and...The Hualapai CommunityMETHODSRESULTSDISCUSSIONReferences |
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Understanding the local context of a health behavior requires meaningful community involvement. Yet oftentimes, community members are relegated to such tasks as setting up interview appointments and serving as translators. This level of involvement undervalues the emic perspective and skills of community members, and perpetuates a subservient relationship between the community members and the research community.
CBPR engages community members (insiders) and scientific researchers (generally, outsiders) in a collaborative process of scientific investigation, co-learning, and social action. CBPR can be a process of empowerment through which communities can improve their capacity to address problems by developing solutions that use local assets and control their own destinies.8 The CBPR approach facilitates community members to (1) become researchers who address issues important to their community, (2) develop locally relevant research questions, and (3) identify local factors that influence the context and shape targeted behaviors.
It would be a mistake to assume that formative research is not necessary if community members are involved in the planning of an intervention. Community members do not know all things about their own community. The assumption that 1 person can impart the intricacies of their sociocultural context in an objective, systematic fashion, fails to appreciate the complexity of social systems and ignores community members’ own roles and relationships within the community. Furthermore, the opinions, perspectives, and behaviors of community members who are willing to collaborate with outside researchers may be very different from their less receptive peers.
Community members are experts in using the local formal and informal information networks and in negotiating local systems of influence and power. As researchers, community members’ knowledge and skills can guide the domains of investigation and shape data collection protocols. Their guidance and input are key to developing and implementing an assessment process that will portray the true resources, attitudes, and behaviors of the community. Without community involvement, formative research runs the risk of being superficial, by documenting only behaviors and attitudes that are easily explained to outsiders and by describing only observable resources (e.g., facilities and programs) and overlooking intangible resources, (e.g., social cohesion and the power of social reciprocity). This level of documentation can miss subtle cultural and social assets that are reflected in internal systems of communication and social interaction as well as local controversies that can undermine intervention plans. If community members are not experienced researchers, outside experienced researchers can contribute their skills and knowledge to the partnership. Scientific expertise is needed to develop an objective investigative approach and a systematic plan to document local factors that influence behaviors and attitudes.
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The Hualapai Community |
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In 2001, the prevalence of diagnosed type 2 diabetes mellitus was > 40% in people older than 21 years.11 Diabetes risk factors, such as obesity and low levels of physical activity, are prevalent: more than 85% of the population has a body mass index greater than 25.11 Perhaps more alarming, the age of diabetes onset is decreasing and 8–10 adolescents have been diagnosed with the condition.11
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METHODS |
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The team developed the formative assessment research questions: "What has our community been doing to support youth wellness?" and "What factors influence youth wellness in our community?" The team recognized the absence of adequate written documentation about past events and practices and the fact that the type of inquiry would shape how reflections of past events were shared. As a result, they selected data collection methods that provided formal and informal, public and private forums for expressing thoughts. Open-ended, semistructured interviews provided a formal and private way to collect oral histories. A formal and public forum for collecting data was supplied by the School Health Index (SHI),12 a structured, school-based self-assessment instrument, which was completed by both tribal and nontribal members who were school employees. An inventory of local facilities and practices that promote healthy and unhealthy behaviors in youth was created informally in a public meeting. Through these methods, a variety of people familiar with the community were able to contribute to the formative database.
Interviews
Open-ended, semistructured interviews allowed people to use their own words to share their experience, attitudes, and perceptions.1 Inclusion criteria were tribal enrollment and at least 18 years as a resident in the community. Three sets of interview questions were designed by the CBPR team: "Youth Programs," "Stayed in School," and "Dropped Out of School." Youth Programs questions asked about the purposes, resources, challenges, and community involvement associated with various programs. The school-related interviews expanded on community researchers’ knowledge that attainment of a high-school degree or equivalent was reflective of wellness. Academic success required youth to avoid or overcome numerous social and behavioral obstacles (e.g., substance abuse, peer pressure, and disenchantment with the nonnative education system). Respondents were asked the set of questions that applied to their graduation status. The school-related interview questions required respondents to reflect on factors that supported or detracted from their academic achievement, accomplishments after leaving or completing school, and career goals.
The three community researchers relied on their collective knowledge of community members’ involvement in local activities, and used a sampling design to identify potential "information-rich" interviewees.13 The school-related interviews required that researchers identify community members who had graduated and members who had quit high school. Before the construction of a local high school in 2000, community members had attended more than 5 different off-reservation high schools. It could have been a formidable task to collect lists of graduates and "drop-outs" from those schools; however, the community researchers’ familiarity with their peers and neighbors precluded the task. As they stated, "We don’t have to [contact schools], we all know each others."
Interviews were conducted by a pair of community researchers, 1 man and 1 woman. One person served as the interviewer and the other person took notes. The role interviewers assumed was determined by their relationship to the interviewee. Researchers did not interview their own relatives, former co-workers or other close acquaintances. Excluding relatives would have significantly reduced the pool of potential interviewees in this small community and biased the sample. The 25–45 minute interviews were not tape recorded to assure anonymity in the small community where voice recognition is high. Immediately after each interview, the interviewers reviewed the notes and added any information recalled by either of the researchers that had not been recorded. The extensive handwritten notes were typed by the note taker within 1 week of the interview.
An independent-consensus method of analysis was developed by applying the theoretical framework provided by Patton.13 The two interviewers and the university researcher independently analyzed the interview notes for content and pattern. Content analysis involved extraction of actual phrases used by respondents that were reflective of core concepts expressed in the interviews. Patterns were determined first independently by each investigator by reading through the content phrases and identifying recurring words, concepts, or ideas. The three members of the analysis team then shared their patterns. When patterns differed, the team members discussed their rationale and through consensus agreed upon a single set of patterns. Themes that had more of a categorical or topical form were built from a collective review of the patterns.
School Health Index
The faculty, teacher aides, and administrators of the local elementary school completed the SHI as a consensus group.14 The 2002 edition of the SHI is an eight-module, self-assessment tool used by schools to evaluate their environment and policies related to the promotion of physical activity and healthy food choices.12 The assessment engages school personnel in a discussion of school health policies, practices, and programs, and provides a structure to develop an action plan for change.
Two community investigators, assisted by the university investigator, facilitated four 1-hour work sessions with a group of volunteer school personnel to complete the SHI. This approach had been approved by the school board and principal.
Inventory of Environmental Factors
An inventory of environmental factors was compiled to produce a broad picture of the context of youth wellness. Drawing on their collective knowledge, the CBPR team drafted a list of local institutions and behaviors that promote healthy and unhealthy behaviors. The list was presented to the Community Wellness Team, a nonpartisan, grassroots coalition of 22 regular members who represent all sectors of the community (e.g., tribal council members, tribal employees, school employees, and concerned parents). The Community Wellness Team serves as an advisory board to several local health promotion programs. By consensus, the group modified the list by adding and refining factors to accurately portray the community.14
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RESULTS |
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). The research team contacted 49 community members to achieve this sample. The 98% response rate highlights the community researchers’ ability to rely on established trusted relationships to successfully recruit fellow community members. The mean age of the "Dropped Out of School" interviewees was lower than that of the other participants. Many older community members who did not complete high school but eventually attained a high-school equivalency diploma were not identified to participate in this interview set.
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Family was a dominant theme in the two interview sets that considered school outcome. Individuals who stayed in school identified supportive behaviors, words, and expectations of family members—especially mothers—as important motivators. Mothers were most frequently recognized as "making sure I got up and made the bus" or as not allowing an absence when "I pretended I was sick." Mothers, fathers, aunts, uncles, children, husbands, wives, and even "the community" were described as providing encouragement throughout high school and for some, college. Community support was identified as financial support from the tribe’s scholarship fund or as inquiries of progress from unrelated community members (e.g., "How’s your schooling going?"). The value of family and community support was coupled with the importance of personal strength and a sense of responsibility to the community. More than half of the respondents who stayed in school discussed their desire to gain skills to help the tribe become self-sufficient or to enhance cultural or educational opportunities for youth. Sample responses include, "I want to get my ESL [English as a Second Language] certificate," and "I want to own a business to help youth[s]."
Respondents who dropped out of school discussed becoming a new parent before the completion of high school and meeting the request of a spouse or partner to drop out. Women most frequently expressed the latter sentiment; their partners had wanted them to quit school to take care of a new baby. For some, unheeded family advice and support was a secondary theme in these interviews. Respondents acknowledged that "all my relatives," "parents and family," and "the community" "encouraged me to stay in school."
Non–family themes, such as school environment and problems with drugs and alcohol, also emerged. When recalling experiences in off-reservation public schools and boarding schools, respondents described teachers as "having a bad attitude" and as "prejudice." A secondary theme was school structure. Respondents described school as "like a jail" and as having "stupid rules." In contrast, some respondents who stayed in school actually credited the rules and teachers as factors that contributed to their success: school "taught me rules and structure"; "the dedication of the teachers motivated me." Half of the respondents reported that "drugs and alcohol" had contributed to their decision to discontinue school or to the school’s decision to expel them.
School Health Index
Thirty-five or 72% of all elementary-school personnel participated in the four SHI work sessions. Because of the size of the community, this group included parents and grandparents who were also school employees. The group answered the 10–12 questions within each of the eight modules by consensus, which yielded a score for each topic area. Three areas, Physical Education (PE), other Physical Activity (PA) Programs, and Family and Community Involvement were scored at a level deemed unacceptable by the group.
Low scores in PE and PA programs were attributed to the lack of a PE teacher and little time and formal training for teachers and aides to offer regular PE classes. The group proposed hiring a certified PE teacher to implement activities that would meet state standards for physical education. This solution was countered by the principal who spoke of the shortage of certified PE teachers in the state. The group offered few solutions to the poor family and community involvement. Teachers reported frequent attempts to draw family and community members into the school through scheduled open house events and parent–teacher conferences. Several reasons for poor school involvement were discussed: parents’ own unfavorable experience with the school when they were students, and parents’ apprehension about interacting with school personnel who may highlight their child’s poor achievement or disruptive behavior. Yet, periodic parent and community interest was evident by high attendance at the school Christmas pageant and graduation.
Community Inventory
Table 2 lists social and physical environmental factors that promote healthy and unhealthy behaviors in local youth. The community gym is open to all community members in the afternoons and evenings; lights have been installed recently around the ball fields and playgrounds; and a series of summer camps are coordinated by various tribal programs. Other healthy resources include the annual events that unite the community in celebration of their native identity and survival, despite historical and contemporary challenges. Intermittent school and community sports teams, particularly basketball, are popular; however, poor school attendance and grades prevent some youth from maintaining their position on school teams.
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Application
The formative assessment guided the design of the Hualapai Youth Wellness Program (HYWP), a school-based and family-outreach intervention program. Table 3 illustrates the core formative research outcomes and the corresponding elements of HYWP design. Program staff comprises three community members who plan and implement intervention activities. They provide positive adult role models and adult leadership, features identified as key to supporting youth wellness. Program staff receive training in SPARK15 (Sports, Play, Action, and Recreation for Kids), a structured national curriculum that meets state standards, and Physical Best,16 to fill the local void created by a statewide teacher shortage. The HYWP can meet the school’s request for measurable outcomes with select components of Fitnessgram,17 a youth-oriented fitness assessment. Intervention strategies build upon the importance of family involvement and community support by implementing family events and by reporting program outcomes locally, regionally, and nationally. The HYWP uses community resources (e.g., the gym, sports fields, and camp facility), and addresses the low availability of healthy foods by featuring games and healthy meals when it coordinates school breaks and family events.
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DISCUSSION |
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TOPABSTRACTINTRODUCTIONFormative Assessment and...The Hualapai CommunityMETHODSRESULTSDISCUSSIONReferences |
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No published CBPR report describes the development, implementation, analysis, and application of a systematic formative assessment within tribal communities. This step is critical to the initiation of the research process because it allows the CBPR team to integrate the community members’ knowledge of the local history and social behaviors with the scientific researchers’ skills in objective systematic data collection. Together they yield a shared picture of the sociocultural context. The process builds on the strengths of the emic and etic perspectives the investigators bring to the project. Furthermore, a formative assessment acknowledges the internal heterogeneity of native communities often perceived by outsiders as somewhat homogeneous. Community researchers are not burdened with the task of representing the range of beliefs, attitudes, and experiences within their diverse communities.
In their description of the Indian Family Wellness Project, Fisher and Ball19 note the importance of adapting evaluation measures to include culturally relevant domains. Other advocates of participatory research within American Indian communities call for the inclusion of traditional knowledge in research design but provide little description of methods.18 The Hualapai–UA formative assessment demonstrates how community members’ knowledge guided the selection of data collection methods. On the basis of these members’ argument that public and private forums were needed to document the range of opinions and experiences within the community, consensus groups and individual interviews were used. Community members’ knew that academic success was key to local perception of youth wellness, and this knowledge guided the design of the interview questions.
Perhaps the most difficult to implement recommendation of participatory research in American Indian communities is to integrate indigenous and scientific knowledge into the interpretation of research outcomes. The independent-consensus method of analysis developed by the Hualapai–UA team assured that the analytic abilities and perspectives of native and nonnative researchers contributed to the research results. The method integrates group opinion with individual interpretation.
Traditionally, public health in indigenous communities has taken an approach that involves surveillance, needs assessment, and expert-controlled service. The community is passively involved and receives services without taking responsibility for program outcomes. This approach tends to ignore sociocultural knowledge and behaviors, and creates a dependency on outside experts and agencies.20–23 The experience of the Hualapai–UA team demonstrates how community and scientific research partners can contribute their emic and etic perspectives and knowledge to the design, implementation, and application of a formative research effort.
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Acknowledgments |
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Human Participation Protection
The study was approved by the institutional review board of the University of Arizona. The Hualapai Tribal Chairperson signed an Assurance of Compliance with DHHS regulations governing the protection of human research subjects.
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Footnotes |
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Contributors
N. I. Teufel-Shone and S. Irwin developed the application for funding. All authors collaborated in the planning of the research process and in the selection and modification of the methods. T. Siyuja and H. J. Watahomigie led the data collection phase. T. Siyuja, H. J. Watahomigie, and N. I. Teufel-Shone analyzed the data. All authors interpreted the findings and reviewed drafts of the article.
Accepted for publication September 29, 2005.
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References |
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7. Macauley AN, Commanda LE, Freeman WL, et al. Participatory research maximizes community and lay involvement. BMJ. 1999;319:774–778.
8. Merzel C, D’Afflitti J. Reconsidering community-based health promotion: promise, performance, and potential. Am J Public Health. 2003;93:557–574.
9. University of Arizona, Economic Development Research Program. Arizona’s native tribes. Hualapai. Available at: http://ag.arizona.edu/edrp/tribes.html. Accessed September 6, 2005.
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11. Teufel-Shone NI. Hualapai diabetes prevention program: annual report. Special Diabetes Program for American Indians and Alaskan Natives. Washington, DC: Indian Health Service; 2001.
12. Centers for Disease Control and Prevention. School Health Index: A Self-Assessment and Planning Guide. Elementary school version. Atlanta, GA: Centers for Disease Control and Prevention; 2002.
13. Patton MQ. Qualitative Research and Evaluation Methods. 3rd ed. Thousand Oaks, CA: Sage Publications; 2002.
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17. Cooper Institute of Aerobic Research. Fitnessgram. Available at: http://www.fitnessgram.net. Accessed August 20, 2004.
18. Alaska Native Science Commission. Naalaktuaqtuni Ilitchirunilu (Listening and Learning) Alaska Native Science Commission Newsletter. 2000;1:1–4.
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23. Greenwood DJ, Levin M. Introduction to Action Research: Social Research for Social Change. Thousand Oaks, CA: Sage Publications; 1998.
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| HOME | HELP | FEEDBACK | SUBSCRIPTIONS | ARCHIVE | SEARCH | TABLE OF CONTENTS |
