Engaging Tribal Leaders in an American Indian Healthy Eating Project Through Modiﬁed Talking Circles

Fam Community Health Vol. 34, No. 3, pp. 202–210 Copyright C 2011 Wolters Kluwer Health | Lippincott Williams & Wilkins Engaging Tribal Leaders in an American Indian Healthy Eating Project Through Modiﬁed Talking Circles

Sheila Fleischhacker, PhD, JD; Maihan Vu, DrPH; Amy Ries, PhD; Ashley McPhail, BS

Frequently used in the American Indian (AI) community and proven to be a valuable tool in health research, a Talking Circle is a method used by a group to discuss a topic in an egalitarian and nonconfrontational manner. Using community-based participatory research, a modiﬁed Talking Circle format was developed for engaging tribal leaders in an American Indian Healthy Eating Project in North Carolina. The culturally informed formative research approach enabled us to garner project support from 7 tribes, as well as insights on developing planning and policy strategies to improve access to healthy eating within each of the participating communities. Key words: American Indians, community engagement, food environment, Talking Circles

Author Affiliation: Center for Health Promotion and MERICAN INDIANS (AIs)∗ endure a Disease Prevention (Drs Fleischhacker and Vu) and disproportionate risk of developing Department of Nutrition (Dr Ries), University of North A Carolina–Chapel Hill; and Cumberland County Health diet-related diseases of public health con- Department, Fayetteville, North Carolina cern, such as diabetes, obesity, and certain (Ms McPhail). cancers.1 Illustrative of these disparities, Type This project would not have been possible without the support from Coharie Tribe, Haliwa-Saponi In- 2 diabetes is considered a common disease dian Tribe, Lumbee Tribe, Meherrin Indian Tribe, for AI children older than 10 years.2 As Occaneechi Band of Saponi Nation, Sappony, and Wac- young as 4-year-olds, AI preschoolers in a re- camawSiouanTribe.WethanktheNorthCarolina Commission of Indian Affairs; specifically, Gregory cent cross-sectional, nationally representative Richardson, Missy Brayboy, and Dr Robin Cummings. study were found to have the highest preva- We greatly appreciate the time and thoughts shared by lence of obesity among 5 major racial/ethnic all Talking Circle participants. Our community liaisons and advisors were tremendous: Dr Ronny Bell, Tabatha groups (American Indian/Native Alaskan, Brewer, Sandra Bronner, Sherri Brooks, Randi Byrd, 31.2%; Hispanic, 22.0%; non-Hispanic black, Candice Collins, Dorothy Crowe, Vivette Jeffries-Logan, 20.8%; non-Hispanic white, 15.9%; and Asian, Dr Clara Sue Kidwell, Eric Locklear, Tony V. Locklear, 3 Faye Martin, Devonna Mountain, Julia Phipps, Marty 12.8%). The myriad of factors contributing Richardson, and John Scott-Richardson. Jason Evans to AI diet-related health disparities include crafted our Talking Stick. poverty; genetics; dietary changes over time; Support for this project was provided by Healthy Eat- and, in some cases, government policies.4,5 ing Research, a national program of the Robert Wood Johnson Foundation (RWJF) and a National Institute of Health (NIH) University of North Carolina Interdis- ∗Throughout this brief, the term, ,is ciplinary Obesity Training Grant (T 32 MH75854-03). American Indian The content is solely the responsibility of the authors used to describe both American Indians and Alaska Na- and does not necessarily represent the official views of tives. According to the US Census 2000, this collective cat- the RWJF or NIH. egorization includes individuals who self-identified that Correspondence: Sheila Fleischhacker, PhD, JD, Cen- they have origins in any of the original peoples of North ter for Health Promotion and Disease Prevention, Uni- and South America (including Central America). An esti- versity of North Carolina-Chapel Hill, Chapel Hill, NC mated 4.3 million individuals indicated this race/ethnicity 27599 (sheilafl[email protected]). category and this included 2.4 million people who only DOI: 10.1097/FCH.0b013e31821960bb reported American Indian and Alaska Native as their race. 202

Copyright © 2011 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. Engaging Tribal Leaders in an American Indian Healthy Eating Project 203 Environmental and policy strategies can are in various stages of implementing, eval- promote healthy eating and reduce diet- uating, and sustaining interventions aiming to related health disparities.6-8 But research increase the availability and consumption of and practice has predominantly focused on healthy food and beverage items.24-26 Forma- understanding individual behavior change tive work indicated that some tribal members rather than evaluating environmental and traveled as far as 30 miles off the reservation to policy factors.9 Despite this oversight, ev- access a diverse supply of affordable, healthy idence has been mounting over the last foods.26 Even less is known about the food en- 10 years demonstrating associations be- vironment for AIs living off reservations and tween diet-related health disparities and the outside of tribal areas—estimated to be as high local food environment.10-12 Various def- as 64% of the AI population.27 The US Census initions exist; but generally, community- Bureau noted when making this estimation level measures of the food environment in- that the number of AIs living off reservation clude food stores, restaurants, schools, and and in other rural and urban Indian communi- worksites.13 Besides the identification and ties is difficult to determine in part because of categorization of food outlets, measures of how reservations are defined and how the AI the food environment take into account the population is tracked. Another challenge for availability, accessibility, and affordability of understanding AI diet-related health dispari- healthy foods and beverages (eg, fruits and ties is the Indian Health Services (Pub. L. No. vegetables), along with exposure to calorie- 67-85, §13; Pub. L. No. 94-437; and Pub. L. dense, nutrient-poor foods and beverages (eg, No. 111-148, §10221) and the Food Distribu- sugar-sweetened beverages).14 Research ex- tion Program on Indian Reservations (Pub. L. amining associations between public health No. 93-86, §4(b); Pub. L. No. 106-171, §4; and and the food environment have found that Pub. L. No. 110-234, §4(b)) do not provide ser- greater proximity to chain grocery stores is vices to or data on AIs who are not members related to health outcomes, such as lower of federally recognized tribes. The US Con- body mass index and lower prevalence of stitution explicitly mentions the relationship obesity.15,16 Higher obesity prevalence has between the US federal government and In- been found in areas with increased access dian tribes (US Const., art. 1, §8). Through to convenience stores or smaller grocery this special government-to-government rela- stores.17 Compared with chain grocery sto- tionship, federally recognized tribes possess ries, smaller food outlets tend to stock less certain inherent rights of self-government and fruits and vegetables and more processed entitlement to federal benefits, services, and foods.18 Associations between obesity and protections (United States v Sandoval, 231 access to fast food restaurants has been US 28 (1913)). Under federal law and for their reported.19 Communities of lower socioeco- internal government purposes only, state gov- nomic status, with a higher proportion of eth- ernments can recognize Indian tribes (Indian nic minorities, or in rural settings may be at Arts and Crafts Act, 25 USC §305e (d)). The risk for living further away from chain grocery number of state-recognized tribes varies de- stores and closer to fast food restaurants and pending on source but at least 16 states have convenience stores.20-22 recognized tribes even though the federal No studies, to our knowledge, have sys- government has not.28 Therefore, little is temically conducted a rigorous assessment of known about the food environment within the food environment in AI settings, despite AI settings, especially for AIs living off reser- increased burdens of diet-related chronic vations and/or not members of federally rec- diseases and studies calling for increased ognized tribes. attention to context within AI settings.3,23 Re- Addressing these research gaps requires search is limited to 3 federally recognized employing more culturally and tribally spe- tribes in Arizona and New Mexico, which cific strategies and exploring the role of mixed

Copyright © 2011 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. 204 FAMILY &COMMUNITY HEALTH/JULY–SEPTEMBER 2011 method qualitative approaches.23 These rec- concentration of AIs east of the Mississippi ommendations came from the school-based AI river.29,30 In fact, more than 122 425 Ameri- obesity prevention program known as Path- can Indian/Alaskan Native individuals live in ways. After 9 years, the Pathways program North Carolina.31 American Indians live in reported positive changes in diet but found each of the state’s counties and three-fourths little impact on obesity. The Pathways investi- of North Carolina’s American Indian popula- gators noted great variability among the 7 par- tion is concentrated in 12 counties.29,30 Eight ticipating tribes’ access to resources, social state-recognized tribes and 4 urban organiza- norms, and rules about food and consump- tions live in North Carolina. The federal gov- tion within the household. Because of the ernment fully recognizes one of these 8 tribes variability of each participating tribes’ circum- and another tribe has partial federal recogni- stances, the Pathway investigators thought a tion. A recent report demonstrates that AI liv- less standardized intervention that integrates ing in North Carolina experience significantly more culturally and tribally specific strategies worse health outcomes than Caucasians living might have led to greater behavioral change. in the state.32 North Carolina has the nation’s Another lesson from Pathways was employ- tenth highest rate of adult obesity and, for the ing a variety of community participation meth- last few years, has been consistently ranked ods, ranging from providing input on proto- just as low for childhood obesity rates.33 col development to collecting research data.23 Likewise, using a variety of formative research Development of a modified Talking approaches to gather information over multi- Circle to engage tribal leaders in an ple stages was emphasized as a means to de- American Indian Healthy Eating Project velop participatory relationships. That is, cre- ate a dialogue with AI tribes facilitating a sense Talking Circle Rationale of ownership in the research process and Using community-based participatory res- outcomes. earch,34 we first partnered with the North Our multidisciplinary project aimed to Carolina Commission of Indian Affairs (Com- build the partnerships and evidence base nec- mission), a division of state government, cre- essary to improve access to healthy, affordable ated under NCGS 143B-404 by the North Car- foods within AI communities. Specifically, we olina General Assembly to advocate and as- set out to develop a culturally appropriate sist the state’s AI citizens.30 The Commission formative research approach to garner sup- helped us strategize on how best to build sus- port from tribal leaders, as well as insights tainable partnerships with tribes in North Car- on healthy eating and research engagement. olina. We did not examine food access within This article documents the development and the 4 urban organizations in North Carolina implementation of a modified Talking Circle since there is low AI geographical concen- as a research tool to engage tribal leaders in tration in these areas. To initiate discussions an American Indian Healthy Eating Project in on healthy eating and research engagement North Carolina. with tribal leaders, the Commission suggested that we host Talking Circles (ie, facilitated discussions).35 Frequently used in the AI com- METHODS munity and proven to be a valuable tool in health research, a Talking Circle is a method Study area used by a group to discuss a topic in an egal- North Carolina provides a unique opportu- itarian and nonconfrontational manner.35,36 nity to examine the relationship between the Participants sit in a Circle, discuss the speci- food environment and AI health disparities be- fied topic in confidence, and convey informa- cause the state has the sixth largest population tion in the AI oral storytelling tradition. Each of AIs in the United States and the highest participant is given the opportunity to speak

Copyright © 2011 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. Engaging Tribal Leaders in an American Indian Healthy Eating Project 205 as a Talking Stick is passed around the Circle sized the importance of a topic-driven Circle while other participants respect and support discussion versus a series of questions and the speaker by attending to their words. Dis- probes. Reviewers also suggested the facili- cussion continues until consensus is reached tator be trained to ensure that the Circle dis- or until the stick has been passed around the cussions balanced input on AI facilitators and Circle once in silence. barriers to ensure that community assets were not overshadowed by community challenges. Modification of a traditional Talking Circle Research ethics review Two community liaisons, both recom- Once the protocol for the modified Talking mended by the Commission, were hired to Circles was in place, we sought input from help our research team develop a modified the newly forming North Carolina American Talking Circle approach. Our liaisons were Indian Health Board on how to proceed with both members of the Lumbee Tribe. Through asking each tribe’s permission to participate discussion and practicing a modified Talking in this study. The North Carolina American Circle, the community liaisons recommended Indian Health Board recommended that we that we host separate Talking Circles with first obtain approval for our study through each of the participating tribes to respect each our institution’s Institutional Review Board tribe’s sovereignty, as well as distinguish each and then contact each tribe individually to tribe’s unique food environment. In addition, ask their individual permission to participate. our community liaisons suggested that the Cir- Once we received institutional review board cle size be limited to 3 to 5 participants and no approval, each tribe was mailed a copy of all longer than 90 minutes. Unlike traditional Cir- studyprotocolsandaprojectnarrative.Each cles, our community liaisons thought that the tribe had their own research ethics review facilitator should not contribute content to procedures and approval processes. A vari- the Circle but rather just facilitate the discus- ety of approaches were used to further ex- sion on selected topics because the facilitator plain and address any issues raised by indi- (A.M.) is a member of only one of the potential vidual tribes, including phone conversations, participating tribes and is not a tribal leader. e-mail communications, in-person meetings, Given her dual role as a community liaison and and Tribal Council presentations. We received research assistant, the facilitator’s thoughts on permission to move forward with the project the topic could also potentially bias the Cir- from 7 of North Carolina’s recognized tribes: cle discussion. Another rationale for having Coharie Tribe, Haliwa-Saponi Indian Tribe, the facilitator avoid contributing to the dis- Lumbee Tribe, Meherrin Indian Tribe, Occa- cussion was to help participants understand neechi Band of Saponi Nation, Sappony, and this modified Talking Circle was research, and Waccamaw Siouan Tribe. we were gathering data from the community on healthy eating and research engagement. Implementation of 7 modified Our Talking Circle protocol was reviewed Talking Circles and further refined by the Commission, our community liaisons and advisors, as Recruiting Circle participants well as our research team, which included Once we received approval from a tribe to community-based participatory research and move forward with the food access project, qualitative research experts. Through a collab- we began arranging a modified Talking Cir- orative and iterative process, reviewers were cle with their tribal leaders. To assist with lo- asked to provide input on the modified Talk- cal logistics, each tribe identified 1 to 2 tribal ing Circle format in addition to the selection liaisons, such as the Chairman, Chief, Tribal and phrasing of the topics included in the Administrator, Executive Director, or another Circle. During this process, reviewers empha- designated Tribal representative. We worked

Copyright © 2011 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. 206 FAMILY &COMMUNITY HEALTH/JULY–SEPTEMBER 2011 with the tribal liaison(s) to identify a date, group to the start of the modified Talking Cir- time, and location for the modified Talking cle by explaining our modifications to a tra- Circle. The tribal liaison also helped to identify ditional Talking Circle format and the ground up to 6 tribal leaders who might participate rules for our Circle discussion. She then asked in a modified Talking Circle on healthy eat- whether someone in the group would like to ing and research engagement. Generally, each offer a prayer or blessing. In all Circles, a tribal tribe’s Tribal Council helped to identify tribal leader led the group in a traditional or Judeo- leaders to recruit for this project. We mailed Christian prayer or blessing. Next, the facilita- and/or e-mailed Talking Circle invitations to tor started the audio-recorder and elicited dis- the 6 potential participants. A copy of the in- cussion on the following topics: (1) children’s formed consent form was included with the health; (2) food sources; (3) facilitators and invitation. Potential participants were asked barriers to healthy eating; (4) strategies to im- to contact us by phone or e-mail to express prove access to healthy, affordable foods; and interest or opt out of the modified Talking Cir- (5) involving tribal members in this project. cle. Follow-up calls or e-mails were made if the Discussing children’s health comfortably initi- participant did not follow up with us within 2 ated the Talking Circle discussions and framed weeks of sending the invitation. Participants the exigency of the issue without too much were provided a meal and $40 check. bias. Topic by topic, the facilitator maintained Our goal was to recruit 3 to 5 participants a comfortable environment for open dialogue, for each tribe’s Talking Circle. During the ensured each participant had a chance to con- recruiting phase, we met our goals, so we tribute, and identified themes emerging from did not have to ask any of the participating the Circle discussion to move the group to tribes to identify additional potential partici- the next topic or conclude the Talking Circle. pants. The majority of participants who were The Talking Stick was passed in a traditional, recruited, participated (4 of the 7 tribes had clockwise fashion, adapted occasionally with 100% participation). The modified Talking Cir- permission from the Circle facilitator and par- cles ranged in size from 2 to 7 participants, ticipants to allow a participant(s) to amend or totaling 33 participants: tribe 1 = 5; tribe 2 = add to their contributions on a topic. 3; tribe 3 = 7; tribe 4 = 2; tribe 5 = 5; tribe Each tribe’s Talking Circle had a unique dy- 6 = 6; and tribe 7 = 5. Our smallest Circle namic, largely depending on the size and back- (2 participants out of the 6 potential partici- ground of the participants who came to the pants recruited) was unfortunately scheduled table. For instance, our largest Talking Circle on the same night as Bible study. Four indi- included 7 participants, largely representing cated on the day of the modified Talking Circle health professionals in the tribal community. that they would participate but only 2 partic- This Circle provided in-depth analyses of fa- ipants showed up. A couple of weeks earlier, cilitators and barriers to healthy eating within we also had a rich discussion about healthy their tribal community. Moreover, their dis- eating and research engagement at this tribe’s cussions integrated practical examples of monthly Tribal Council meeting. what has worked and what has not in their health programming. In spite of 5 less par- Conducting the Circle ticipants, our smallest Circle, involving 2 ac- The study principal investigator (S.F.) wel- tive tribal leaders, convened similar messages comed the participants and explained the but had a stronger emphasis on the possibili- overall study goals. After a brief introduction ties of tribal leadership in promoting healthy to the overall study, the trained facilitator lifestyles. Five participants seemed to be the (A.M.) sought informed consent from each of optimal size for a robust but not too redun- the modified Talking Circle potential partici- dant discussion. Although participants with pants. Everyone in attendance agreed to par- knowledge of the tribe’s health issues and ticipate. Next, the facilitator transitioned the programs provided insightful information, we

Copyright © 2011 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. Engaging Tribal Leaders in an American Indian Healthy Eating Project 207 found equally interesting contributions from were one-on-one interviews focusing on the tribal leaders who do not work directly in the same 5 topics discussed during the modified tribe’s health programs and policies. Talking Circles. Immediately following the modified Talking Circles or during the follow- Subsequent steps to the modified up steps, several tribal leaders expressed how Talking Circles participating in the modified Talking Circle Tribal review of their Talking themselves facilitated their support of the Circle transcripts project moving forward and helped them understand better what their role could be in im- Each of the Talking Circles’ audio-recorded proving access to healthy eating within their discussions were transcribed verbatim. Both tribal communities. Information gleaned from the recordings and transcripts were checked the 7 modified Talking Circles and the 40 for accuracy by the principal investigator key informant interviews will help us iden- (S.F.). The tribal liaison(s) for each tribe were tify and describe the food sources within the provided a copy of their respective Talking AI settings, understand the facilitators and Circle transcript. We asked the liaison(s) to re- barriers to purchasing and preparing afford- view for accuracy and ensure any references able, healthy meals. The Talking Circle pro- to the tribe’s name or local town or local food cess, along with the key informant interviews, sources were deidentified (eg, name of local also stimulated collective sharing on how to convenience store). The liaison(s) were in- successfully engage tribal members in the de- structed to keep the transcripts confidential velopment of strategies to improve access or to circulate to other Circle participants or to healthy, affordable foods. Our preliminary tribal leaders as they saw appropriate. Each of qualitative analyses illustrate that the modified the participating tribes agreed to be identified Talking Circle process was successful at help- as project participants. For the purposes of ing us engage tribal leaders in discussions on the data dissemination beyond the tribe, we healthy eating and research engagement and arranged, if specificity was needed, to refer set the stage for continual participation in an to information gleaned from a tribe’s Talking American Indian Healthy Eating Project. Over- Circle by a deidentified label, such as tribe 1. all, Talking Circle participants felt that their Tribal leaders and Talking Circle participants Talking Circle symbolized the start of a hope- were informed of these review and dissemi- fully continual cycle between the tribe and nation processes. We felt that it was essential researchers on developing successful strate- to the trust building process for tribal leaders gies to improve access to healthy, affordable to not only have access to the Talking Circle foods within their tribal communities. transcript but, more importantly, understand how we gleaned discussion insights from the Circles to generate data and guide our process DISCUSSION for recommending next steps. The modified Talking Circle was a cultur- Support and insights gleaned ally appropriate formative research approach from the modified Talking Circles to engage tribal leaders in an American Indian After participating in the modified Talking Healthy Eating Project. Our community part- Circles, each tribe supported our project to ners pushing for the use of Talking Circles, go forward with our other project objectives, as well as our community liaisons and advi- which included key informant interviews sors guiding us throughout the development with parents of children aged 3 to 16 years, and implementation stages enabled the im- community and spiritual leaders, health and plementation of not only 7 successful Talk- education professionals, and food sector rep- ing Circles, but also the formation of 7 resentatives. The key informant interviews sustainable partnerships. This project builds

Copyright © 2011 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. 208 FAMILY &COMMUNITY HEALTH/JULY–SEPTEMBER 2011 on prior evidence23,26 for the importance of us illustrate to each tribe that we were ded- formative research in building trust with AI icated to beginning a process to listen and tribes. In this project, the modified Talking work with each tribe equally. Although our Circles were integrated as a one-time event team did not have much experience with to help build community-academic partner- the North Carolina tribal communities, our ships around childhood obesity. In contrast, team’s experience living and working in In- prior health studies used Talking Circles with dian country helped illustrate to some tribal adults and focused on adult health issues as leaders our interest in AI health. Our team also part of longer-term Type 2 diabetes educa- demonstrated a genuine respect for tribal lead- tional interventions34,37 or to understand cul- ership’s dual role in advancing their tribe’s tural meanings of cancer.36 Despite different health, while protecting their people from research purposes and durations, we similarly harm research studies have had in the past found Talking Circles to be an invaluable ap- in AI communities. proach to gather community input and en- Evaluating the information gleaned from gage community participants in a health re- the Talking Circle discussions was compar- search process. In our study, the facilitator atively much easier than focus groups where also played an integral role in ensuring the not all participants contribute on a given topic Talking Circle created a safe setting for shar- and sometimes one participant contributes ing stories, experiences, and feelings around too much!38 The Talking Circle approach en- children’s health and community food access. abled a rich discussion gleaned from all par- Our modified Talking Circle approach, unlike ticipants and allowed for each participant to these prior health research uses, were not smoothly build on or contrast earlier contribu- just informal gatherings for participants to tions. The topics discussed during each Talk- share concerns on suggested topics. Rather, ing Circle were generally similar allowing us the modified Talking Circle was integrated as to compare and contrast how food sources a formal, initial step to garner tribal leader were perceived in each tribal community. As support and permission to allow our project one example, in one of our more rural tribal to move forward within each tribe. communities, we heard how access to healthy Patience and persistence were essential as foods was constrained by living more than we worked over the course of 9 months to 30 miles away from a grocery store. On the host a modified Talking Circle with each tribe. other hand, a more urban tribal community Some of the participating tribes indicated in- indicated how members traveled to multiple terest early on but asked whether we could stores to get the best value and often can be wait until other competing tribal events and swamped with an excess of fast food and con- priorities settled down. For some tribes, the venience store options, generally selling un- review of the research ethics review pro- healthy foods. cess was led largely by volunteers with full- Setting up times with each tribe to individu- time jobs; thereby, multiple in-person meet- ally discuss their Talking Circle transcript and ings, late night or weekend calls, or e-mails key emerging themes, as well as share over- helped us address all reviewers’ questions and all findings on the process and content from concerns before moving forward. Tribal lead- all 7 Circles strengthen the transparency, ac- ers indicated finding time in their demand- curacy, and utility of the Talking Circle step. ing schedules for this project was helped Initiating and implementing the Talking Cir- by us utilizing a culturally appropriate infor- cle with each tribe and with all 7 tribes was a mation gathering strategy and contributing strong foundational step for us to work further much needed data on how to improve the to develop strategies to improve access to well-being of AI children. The support of the healthy, affordable foods within North Car- North Carolina Commission of Indian Affairs, olina American Indian communities. The along with our liaisons and advisors, helped engagement of tribal leaders helped set the

Copyright © 2011 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. Engaging Tribal Leaders in an American Indian Healthy Eating Project 209 tone for facilitating tribally led solutions to academia partnership to improve access to improving healthy eating. healthy eating within 7 North Carolina state- recognized tribes. The Talking Circle set the tone for the importance of integrating cultur- CONCLUSION ally appropriate strategies and tribally led ini- tiatives in efforts to improve access to healthy, Hosting modiﬁed Talking Circles with 7 affordable foods within their North Carolina tribes laid the groundwork for a community- tribal communities.

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