An Intergenerational Family Community-Based Participatory Research Prevention Program: Hemish of Walatowa Family Circle Program

Introduction

The Pueblo of Jemez, known traditionally as Walatowa, is a sovereign nation, 55 miles northwest of Albuquerque, where the University of New Mexico (UNM) is located. Walatowa is one of 19 New Mexico federally recognized tribes, with about 3,400 tribal members; about 58% live within tribal lands (jemezpueblo.org). Residents of Walatowa, known as the Hemish people, maintain a high degree of traditional practices Towa language; tribal estimates place language fluency at 80–85% (PoJ govt.). Towa is strictly an oral language, yet the preservation of and cultural knowledge, and are the only people to speak the Towa and the Hemish ways of life remain a tribal priority in all facets of life, not only for the sake of cultural preservation but also because the health and educational attainment of tribal members are believed to be affected by concerns of loss of language and culture. Like many other American Indian (AI) tribes, the Walatowa community faces challenges including alcohol and substance abuse threatening Hemish families and the tribe collectively, and putting children and youth at risk. The Walatowa community also has cultural and traditional strengths, which can be recognized as protective factors for prevention programs, including how elders pass on traditional wisdom within families (Duran and Duran, 1995; Belone et al, 2011; Goodkind et al, 2010; Mmari, Blum and Teufel-Shone, 2010).

This article reports on a partnership between the University of New Mexico and the Pueblo of Jemez to co-develop and implement an intergenerational prevention program (with children, parents and elders) based on cultural strengths and wisdom to promote family and child well-being. We report on our participatory research process, as well as the child health outcomes and lessons learned in our academictribal partnership that may be useful for other tribes.

History of Partnership

Since 1999, the Pueblo of Jemez and the UNM Center for Participatory Research (UNM-CPR) have partnered through a Community Based Participatory Research (CBPR) approach, involving community/cultural capacities, and culturally-centered interventions to improve health. In our first grant, the “Community Voices” research study, (CDC grant, 448 CCU 610818-04SIP24PR01, Protective Factors in Tribes), we utilized a CBPR approach to conduct key informant interviews and focus groups on community capacities and community member interpretations of their socio-cultural strengths; and identified the interconnectedness between the built, sociocultural, and natural environments with the value of maintaining cultural integrity (Wallerstein et al, 2003). The study identified multiple protective factors, such as the role of cultural practices and preservation, and participation in community and program events; as well as risk factors, such as the growing gap between elders and youth in terms of cultural transmission and language. This gap has interrupted cultural knowledge transfer, fostered family communication breakdown as parents struggle to raise their children, and contributed to alcohol and substance abuse.

Study participants also shared ideas about how best to intervene and strengthen shared community values, participation in and knowledge of cultural practices, and increase Towa language utilization. Recommendations led to the Pueblo of Jemez and UNM-CPR co-writing a second research grant to reduce identified child risk factors utilizing Hemish community and cultural strengths. This study, funded in 2005 by the Native American Research Centers for Health (NARCH III), aimed to co-create an inter-generational family program, incorporating a CBPR approach, and targeting 3rd through 5th grade children. The UNM team identified previous work from a tribal-academic partnership between the University of Nebraska and the Anishinabe people, a project known as Bii-Zin-Da-De-Dah in the Anishinabe language or Listening to Each Other in English. As a psycho/cultural/educational intervention to reduce alcohol and other drug abuse, Bii-Zin-Da-De-Dah showed that culturally-embedded prevention messages were retained and were more effective (Whitbeck, Hoyt, McMorris, et al., 2001; Whitbeck, Hoyt, Stubben, et al., 2001). We requested and received approval to adapt this intervention within the cultural values and ways of life of Jemez, which resulted in the creation of the Hemish of Walatowa Family Circle Project (FCP), developed specifically for Jemez children, families (parents, siblings), and elders.

Community-Based Participatory Research Approach

This over 10-year partnership between the Pueblo of Jemez and UNM-CPR is grounded in the principles of CBPR, including community ownership, capacity-building, and long-term commitment (Israel et al, 2005); and in the core values of service, respect, and responsibility, while striving towards an equitable and trusting relationship among partners. In the last decade and a half, CBPR has been increasingly recognized as an important research strategy to reduce health disparities (Minkler and Wallerstein, 2008). Within tribes, participatory research is based in tribal sovereignty and being accountable to tribal demands for controlling research within their borders and with their members (Baldwin et al, 2009; Burhansstipanov et al, 2005; Christopher et al, 2008a; Fisher and Ball, 2005; Harala, 2005; LaVeaux and Christopher, 2009; Teufel-Shone et al, 2006; Thomas et al, 2009a; Wallerstein and Duran, 2010). “CBPR is not simply a community outreach strategy but represents a systematic effort to incorporate community participation and decision making, local theories of etiology and change, and community practices into the research effort” (Wallersten and Duran, 2006, p. 313). Community ownership was enhanced in Jemez when community members identified their own research interests from the Community Voices Project, and then requested UNM-CPR to collaborate in developing the intergenerational grant application.

Process of Developing the Intervention

The Family Circle Project was a four-year intervention study to co-develop and pilot the curriculum, working with a newly-reconstituted Jemez Advisory Council (AC), expanded from the Community Voices project. All members of the Advisory Council were from the Pueblo of Jemez, representing service providers, educators, parents, elders, and youth. Membership fluctuated, ranging in size and makeup over the course of the project years, and a core group has remained connected from 2005 to the present, despite funding ending in 2009. Presently, the core Advisory Council members are also identified as the Family Circle Project Tribal Research Team (TRT).

Early in the first year, UNM re-confirmed all tribal approvals and received UNM Institutional Review Board approval, (HRRC#06113, April 20, 2006). The Advisory Council and UNM-CPR team then spent the first year, in an elaborate initial review process to identify what elements of the Bii-Zin-Da-De-Dah curriculum were evidence-based, to maintain, and what to integrate of cultural knowledge based in Jemez values, way of life, language, and history. In the second year, Advisory Council members, who received human research and protections trainings, conducted four focus groups with service providers, parents, elders, and youth, the Towa language, gaining almost entirely in h skills towards becoming a Tribal Research Team. Focus group participants were asked to discuss strengths and challenges in their community, and what curriculum components they thought were important to include, especially, those which emphasized culture and prevention. Focus groups audio-recording transcriptions were meticulously translated from Towa to English and approved before outsider researcher exposure. After Advisory Council review, novel components were integrated, including traditional tribal greetings and introductions, traditional anger management concepts, traditional stories, and New Mexico Health Education Standards (HealthEd@ped.state.nm.us/standards). Additionally, we added a family community action project (CAP) that reflected the purpose of families giving back service to their community, even as they strengthened their own communication and child health. In the third and fourth year, two Hemish of Walatowa Family Circle Program pilots were conducted in Jemez. The curriculum, study sample, data collection, and analysis are presented below.

Hemish of Walatowa Family Circle Project Curriculum

In year three, the final 14-session (212 pages) Hemish of Walatowa Family Circle Project curriculum was produced for piloting with 3rd, 4th, and 5th grade children and their families, with artwork developed by a tribal elder and member of the Advisory Council (see Table 1. Curriculum). Other materials developed included 1) a videotaped introduction of tribal leaders talking about Jemez values and history produced by youth; 2) artwork of oral stories as told by Jemez elders; and 3) a facilitator’s manual outlining each session. A pre/post test was also co-developed, one specifically for the parent/caregiver and the other for the child participant. Evaluation process instruments for the facilitators were also co-developed.

Table 1.

Hemish of Walatowa Family Circle Project curriculum components and structure

Curriculum Sessions	Curriculum Logo (Designed by Robert Shendo)	Session Format
Welcoming Family Dinner History Way of Life Vision Community Challenges Communication and Help Seeking Recognizing Types of Anger Managing Anger Problem Solving Being Different Positive Relationships Building Social Support Making a Commitment		Conducted by trained tribal facilitators, primarily in Towa Family dinner Greetings (Clan/Indian Names) Sharing of Home Practice Ice Breaker Activity Activities: Separate adult & youth groups Planning: Community Action Projects Youth Journals Wra

Intervention Sample

Recruitment of participants was open to all third, fourth and fifth grade children attending schools within the Pueblo of Jemez community and their families, who volunteered to participate. This decision respects a community view that all Walatowa children and families are at-risk, and the opportunity to benefit on from a prevention program should not be based Ecriteria that are often a norm for outsider researchers. This approach to program exposure works for this highly connected community, and provided outsider researchers with learning about intervention research design and methods, particularly how to center the intervention within the community’s worldview. Table 2 contains a breakdown of both pilots with selected participant demographics.

Table 2.

Hemish of Walatowa Family Circle Project program participant breakdown

Family Circle Program Participants
Pilot Program 1	Pilot Program 2
Launched: December 2007	Launched: March 2009
Completed: - April 2008	Completed: June 2009
11 Families Total:	7 Families Total:
Grandparents (3 female, 2 male) Parents (11 female, 3 male) Children (8 female, 6 male)	Grandparents (2 female) Parents (6 female, 1 male) Children (4 female, 3 male)
Overall Attendance:	Overall Attendance:
Average Percent of Families per Session = 76% Average Number of Families per Session = 8	Average Percent of Families per Session = 75% Average Number of Families/Session = 6
Towa Language:	Towa Language:
57% of the children stated that Towa was the language they most often spoke at home. 93% of the children stated Towa is the language their parents often spoke at home.	28.5% of the children stated that Towa was the language they most often spoke at home. 86% of the children stated Towa is the language their parents often spoke at home.

Data Methods and Collection

Each pilot was evaluated through a mixed methods quantitative and qualitative approach, including pre- and post-test surveys completed by children and adults; journals completed by the children; a mid-program evaluation focus group with the families; and self-administered facilitator logs that were completed after each session. The post-test also included a 360-degree evaluation method, where kids and parents were asked how they had changed, how their parent or child had changed, and how the family had changed (Hazucha et al, 1993; London and Wohlers, 1991; Walker and Smither, The post-test also included a 360-degree 1999). The pre-post instrument was drawn from approximately 20 different instruments that measured coping, mental health, historical trauma, cultural and knowledge, alcohol/substance abuse, community capacity, to name a few. Measurement scales around community capacity, leadership, youth, and elders, developed with Jemez during the Community Voices research project and then tested in two tribes, were also included in the pre/post survey (Oetzel et al, 2010). The AC then advised the UNM research team about which questions/items were irrelevant, not culturally appropriate, or not beneficial to the community. Questions/statements were deleted and some new questions were added; as well, some of scales were adjusted to fit the community needs. With few exceptions, the questions were framed as ordinal Likert items with ranges of 4 to 7 responses or as binary questions with yes/no responses. After all the adaptations, the adult survey included approximately 400 questions and the child survey included around 200 questions.

The AC and facilitators conducted all of the pre/post-test data collection, (after receiving training by the UNM team on confidentiality and research ethics), which was highly important for translating the questions into Towa and for developing community capacity with regard to research. Having community members administer the surveys also created a comfortable environment for the participants. The pre-post was administered to 17 adults, 10 in the first year and 7 in the second. Twenty-one children took the pre-post, 14 in year one and 7 in year two. Each participant received a $20 gift card for completing each survey.

Analysis

All of the completed surveys were returned to the UNM research team for analysis, and we aggregated both pilots for reporting here. The surveys were scanned into TeleForm (Cardiff Software, Autonomy Corp.) and exported into Statistical Package for the Social Sciences (SPSS, IBM SPSS Statistics) program for statistical analysis. Likert scales were analyzed using a paired t-test. Cronbach’s alpha was also calculated for each Likert scale at each pre- and post-test time. There are two competing challenges to analyzing the pre-post data. With a relatively small sample size, even with aggregating family data from both the two pilot implementations, detecting statistical significance can be difficult. In contrast to that, the very large number of questions almost ensures that potentially spurious significances will be identified. To address both these challenges, the following two-stage strategy was developed. The individual items were analyzed using either a sign test (for Likert items; Roberson et al, 1995) or McNemar’s test (for binary items). If binary questions were in a list (e.g., stressful events within the past year), the positive responses were summed and analyzed using a paired t-test. Any tests with a p-value of 0.109 or less were selected for further analysis.

The selected items were then examined in the context of the scale they are part of and of the other items composing that scale. To establish plausibility for the statistical significance, we looked qualitatively at whether the other items and the scale were changing in the same manner or direction as the statistically significant item. Several scales that were particularly important as an assessment of outcomes were included regardless of statistical significance. These were the three scales related to parenting styles (Robinson et al, 1995), questions relating to language, and four scales related to community capacity in American Indian communities (Oetzel et al, 2010).

Program Participant Results

Children’s Overall Results.

We had both quantitative and qualitative results, though because of small sample size (from the pre/post-tests) and the richness of the qualitative data (from journals, mid-program evaluation focus group, the 360 degree post-test open-ended questions, as well as facilitator observations), we triangulated our few quantitative items with the wealth of quotes and personal reflections. Despite the small sample size, we had statistical significance for changes in children’s responses between their pre- and post-tests; they indicated increased self-efficacy and coping skills (one’s belief they can influence events in their lives), and reduced anxiety and depression symptoms. These positive changes can have a protective effect in the long term for chronic disease, violence, and substance abuse.

• Anxiety: The multi-dimensional anxiety scale, used in the survey, indicated children felt their anxiety was less upon completing the program (p-value = .02). One example item: afraid other kids will make fun of me (decreased, p-value = 0.06).

• Coping with Depression: The depression scale indicated children felt more capable of coping with depression symptoms upon completing the program (p-value =.02). One example item: coping with loneliness (increased, p-value = 0.06).

Parents’ Overall Results.

Although this program was intended as a prevention program for children, it also provided a family participation format; parents experienced the program alongside their children, with skill building exercises offered around communication, listening, and eating dinner together. Despite small sample size, parental data showed statistically significant changes related to language and culture.

• Towa Language: Thinking in Towa (p-value = 0.02). With the program predominantly facilitated in Towa, participants stated that their thinking in Towa had increased.

• Hemish History: impact of tribal history on community (p-value = 0.07). Post-test analysis showed that adult participants stated that Hemish history was more important upon completing this program.

Discussion/Lessons Learned

Several important lessons concerning ownership, sustainability, and adaptability emerged from the collaborative design and implementation of the Jemez Family Circle Program. These lessons provide key points for future partnerships and for collaborative intervention development with tribes.

Tribal ownership of the program was an intended outcome from the onset of the CBPR effort, where community partnering assured cultural and community input from the early research question development through FCP implementation. Partnering alone, however, may not ensure a sense of community ownership. Instead, it was important have the combination of formal agreements such as a Memorandum of Understanding following the tribal approval processes, establishment a community Advisory Council (e.g., l service providers, elders, leaders, parents, and youth) to provide guidance and wisdom, and tribal sovereignty regarding ownership of data and the project ultimately recognition of itself.

Sustainability has been positively reinforced by the ability to adapt the program the second These the leadership and incorporated traditional Walatowa foods. The meals, which were catered by the Tribal Youth Empowerment program, exposed participants to forgotten recipes and reinforced traditional and cultural values, community norms, and tribal history. A direct outcome was a traditional foods and recipes booklet distributed to community members, which Partnering alone, however, may also strengthened organizational linkages between Jemez Health and Human Services and the Department of Education. A second adaptation was the decision by the Summer Youth Program, within the Department of Health, to integrate the FCP curriculum into their traditional days for children age 7 – 15; teachers are also using units in their classrooms. The capacity for FCP to be adapted for priority community needs has resulted in continued tribal use, increased cultural-centeredness, and application in new settings.

Ultimately, sustainability is a challenge for any new intervention, with programs competing for resources. The decision to integrate elements of the curriculum into various venues has been positive, yet the need to consider sustainability remains. One illustration of this challenge is the publication of results. Tribal ownership of data has been respected and clearly outlined in this partnership; therefore publication of results has to be part of the tribal priorities that typically include informing leadership, program managers, and the tribal community at-large, rather than publishing to the external world. It is only now, two years after the grant ended, and with the deepening of ownership of the FCP within Jemez, that the Advisory Council is seeking to share the effectiveness of its approach. The willingness to publish also reflects a deepening partnership and trust between UNM-CPR, and the Jemez Advisory Council and Programs that we continue in a manner that supports mutual respect and co-learning.

Conclusion

Conclusions from this effort are two-fold, for the FCP itself and for the partnership. It has become clear that the FCP is a model for integrating Health and Education programs and can serve to strengthen other intra-tribal collaboration. It also is clear that interventions that have both an evidence base, as well as being centered within cultural traditions, elder knowledge, and Hemish of Walatowa values, can be followed for other prevention programming. Advisory Council members and facilitators have expressed how they gained many new skills and hope to continue utilizing these skills (i.e., program development, focus groups and interviews, program facilitation, as well as an array of evaluation and research skills). For the partnership, we have recognized the value of constantly revisiting our principles and our actions to assure that the next collaborative steps of grants or program development reflect Jemez priorities and interests. We hope the process outlined here can support other tribal-academic partnerships to do the same.

Figure 1.

Each main hospital treating individuals from our two communities reports utilization data to its respective state’s hospital data collection office.