Community-based Participatory Research to Address Childhood Obesity: Experiences from Alexander First Nation in Canada

Ashlee-Ann E. Pigford MSc David Dyck Fehderau MA Geoff D.C. Ball PhD, RD Nicholas L. Holt PhD Ronald C. Plotnikoff PhD Paul J. Veugelers PhD Ella Arcand Noreen D. Willows PhD Alexander First Nation Abstract Introduction Community-based participatory research (CBPR) is an First Nations are one of three groups of Aboriginal evidence-based approach that can guide the development, peoples recognized by the Canadian Constitution implementation, and evaluation of childhood obesity Act, 1982, section 35 (Indian and Northern Affairs, prevention initiatives at the community level. The goal of this paper is to describe the CBPR process and resulting 2002). First Nations peoples in Canada have a dis- experiences from a childhood obesity prevention study in proportionate burden of chronic diseases associ- Alexander First Nation, Alberta, Canada. University-based ated with obesity including cardiovascular disease researchers and an Elder from the Alexander First Nation co- and type 2 diabetes (Heart and Stroke Foundation, created the study aims and objectives. A research steering 2010; Liu et al., 2006; Shields, 2006). The prevalence committee (including community members, professionals of obesity is more than double among First Nations who worked in the community, Elders, and university researchers and trainees) and a research agreement were than non-First Nations children in Canada (Pigford established to guide research and dissemination activities. and Willows, 2010), and many First Nations com- From 2006 on, the CBPR partnership between community- munities are grappling with the challenges of this based stakeholders and university-based researchers facil­ health issue. A key component for communities to itated: (1) capacity building, which promoted community meet this challenge relates to obesity prevention. protection, increased research capacity, and created an Communities must address the current health of opportunity for long-term engagement; (2) knowledge transfer and exchange, which facilitated dissemination children and families to prevent future generations within the community, improved access to culturally from developing obesity and obesity-related chronic bound knowledge, and created external opportunities to diseases (Willows et al., 2012). positively portray the community and share experiences; (3) novel research findings; and (4) unexpected consequences including new projects. Our experiences highlight the Acknowledgements: This study was made possible through the guidance advantages of CBPR and are relevant for stakeholders and mentorship of the Alexander First Nation Wisdom Committee. This committee included University of Alberta researchers and community (e.g., community members, health professionals, and Elders, educators, health workers, and individuals representing com- researchers) considering a community-based solution for munity departments. Community members of the Wisdom Committee community-based health challenges such as preventing reviewed and contributed to this manuscript. Funding to support this research was provided by an operating grant from the Alberta Centre for childhood obesity. Child, Family, and Community Research. Geoff Ball and Noreen Willow, Key Words: community-based participatory research; the project’s principal investigators, were supported by Population First Nations; research agreement; steering committee; Health Investigator Awards from Alberta Innovates-Health Solutions. Geoff Ball was also supported by a New Investigator Award from the needs assessment; capacity building; knowledge transfer; Canadian Institutes of Health Research. The authors wish to acknow- children; obesity; Canada ledge the intellectual contributions made to this research by Dr. Mandi Newton (Assistant Professor, University of Alberta).

© Pimatisiwin: A Journal of Aboriginal and Indigenous Community Health 11(2) 2013 171 172 © Pimatisiwin: A Journal of Aboriginal and Indigenous Community Health 11(2) 2013

Culturally appropriate research approaches are et al., 2005; Swinburn et al., 1999). In Canada, CBPR required when working with First Nations com- is recommended (and, in some cases, required) by munities to prevent obesity (Wallerstein and Duran government and nongovernmental agencies, fund- 2006), yet historically communities were seldom ing bodies, and academic institutions that sup- consulted about the type of research that would port health research in Aboriginal communities be the most benefit to them. Rather, helicopter re- (Canadian Institutes of Health Research, 2007; King search has been the predominant research approach et al., 2009; Schnarch, 2004; Wilson and Young, in Aboriginal communities: academic researchers 2008). Although the theoretical value of CBPR in visit a community, collect data, and leave with- Aboriginal communities has often been discussed out returning meaningful results to the commun- (Edwards et al., 2008; LaVeaux and Christopher, ity (Brant Castellano, 2004; Korsmo and Graham, 2009), few data have been reported on how CBPR 2002). Criticisms that this style of research is op- theory and principles have been operationalized in pressive, paternalistic, unethical, and insufficient “real-world” settings. have resulted in the development of alternative re- In this paper we specifically detail our “real- search approaches for conducting research (Fletcher, world” experiences in the application of a CBPR 2003; Schnarch, 2004). Aboriginal communities are framework to the study of children’s weight status in more supportive of academic research that is collab- this First Nations community. The childhood obes- orative, includes their own voices, and is meaning- ity data garnered by this research partnership pro- ful to their communities (Bennet, 2004; Chino and vided valuable information for the design of effect- Debruyn, 2006). Community-based participatory ive strategies to prevent the development of obesity research (CBPR) exemplifies this type of progressive and chronic disease among First Nations children in and collaborative research. CBPR is based on inclu- the community. For example, children in the com- sivity and partnership, tends to reflect the social munity were asked to identify how the community and cultural norms of a community, and is relevant environment shaped their food and activity choices. to a community’s needs and wants (LaVeaux and This information was then shared with adult com- Christopher, 2009). munity members who had been brought together CBPR has gained momentum in Canada because to prioritize obesity prevention initiatives (Dyck- it actively engages Aboriginal communities in the Fehderau et al., 2013). To prevent stigmatizing both research process (Holland et al., 2003). To conduct community members and study participants, publi- CBPR in an effective manner, researchers and com- cations on children’s weight status and other aspects munity members recognize that each party brings of the research are not identified in this manuscript skills, knowledge, and experience (e.g., scientific and unless the community was named in the publica- technical knowledge, cultural knowledge) to make tions. The research findings indicate a need to pay a research project successful. As others have de- attention to children’s weight status. scribed, CBPR is a dynamic process characterized by interdisciplinary methods, collaboration, commun- Processes and Methods: ity participation, and community capacity build- Building on Strengths and ing (Cargo and Mercer, 2008; Castleden et al., 2008; Exploring Ecological Influences Reason and Bradbury, 2001; Wallerstein and Duran, 2006). This approach often merges multiple research Conceptualizing the Alexander Meyo methodologies (e.g., Indigenous, qualitative, quan- Pematchihiwin (Healthy Living) Project titative) to match or triangulate findings generated In 2006, a mixed-methods, community-based re- from the complexity of interconnected factors (e.g., search project to explore specific child health indi- gender, age, traditions, religion, attitudes, beliefs, cators (e.g., weight status) and community/environ- and values) that influence health (Adams, 2005; mental issues associated with risk for developing Bisset et al., 2004; O’Neill and Stirling, 2007; Paradis type 2 diabetes mellitus (T2DM) was conceptualized by a First Nations community leader, Ella Arcand, in Community-based Participatory Research to Address Childhood Obesity: Experiences from Alexander First Nation 173 collaboration with university researchers from the interpersonal, community, policy) are required to University of Alberta. The research focused on pre- build healthier communities (Fisher et al., 2002). By venting childhood obesity as a way to reduce T2DM. adopting an ecological approach, we sought to look Quantitative and novel qualitative data were col- beyond the traditional determinants of obesity (e.g., lected, the latter using research methods such as high caloric intake resulting from unhealthy dietary photovoice, asset-mapping, and interviews with practices and low energy expenditure through low young children. All research related to this study was levels of physical activity) and explore interactions approved by a University of Alberta Health Research among underlying social, cultural, and economic Ethics Board (Health Panel B) as well as an advisory factors related to health risks (Raphael et al., 2003; board (i.e., Wisdom Committee) that included First Travers, 1995, 1998). Nations community members. From the outset, the From a practical standpoint, the initial research research was governed by CBPR values, which were team consisting of one community leader and uni- emphasized by researching a topic that was highly versity researchers received funding in 2006 from the relevant to the community, integrating the know- Alberta Centre for Child, Family and Community ledge and skills of community members into the re- Research for a two-year study focused on childhood search process, building community capacity in re- obesity prevention in the First Nations community. search, and transferring knowledge to the commun- However, the time required to establish relationships ity as it became available. In addition to adhering to within the community extended the project four CBPR, the research approach was strengths-based, years from the initial funding date, rather than two. viewing the community not as a place with deficits Funding was not used only to conduct research in the to be fixed, but as a positive place with assets to be traditional model (i.e., collect, analyze, interpret, and preserved and enhanced (Kretzmann and McKnight, disseminate quantitative and qualitative research 1993; Guy et al., 2002; Berkowitz and Wadud, 2003). data), but to also establish relationships with key Strengths-based approaches effectively foster resili- community members and departments, and form ency and improve health outcomes because they ad- a research steering committee that included com- dress a range of circumstances and events that are munity members (later named by those community usually not part of a deficit-oriented perspective members as the Wisdom Committee) (see Table 1 (Maton et al., 2004). Importantly, strengths-based for project timeline and activities). To highlight the research creates an asset inventory allowing a com- integration of a CBPR framework in our study, we munity to more effectively leverage their resources detail our experiences in establishing the Wisdom for future community initiatives (Beaulieu, 2002). Committee and developing a research agreement. We adopted the ecological framework, which extends beyond merely describing individual be- Establishing the Wisdom Committee haviours to examine how broader social and en- As an initial step of the research, a number of com- vironmental determinants influence behaviours, to munity members were invited to participate in the help understand the complexity of childhood obes- research to ensure the project attended to commun- ity (Willows et al., 2012). This approach was appro- ity needs and to build on existing local strengths. priate because the determinants of health for First A small team of community members and univer- Nations families include cross-cultural barriers, sity researchers networked within the community jurisdictional issues, environmental conditions, ac- for approximately one year to recruit people for cess to health services, education, and community a steering committee to guide the research. This self-determination (Canadian Population Health team connected with community members at large Initiative, 2004). The ecological framework attempts as well as with those who worked in various local to account for the reciprocal interactions between departments or were from Chief and Council (the individuals’ behaviours and their environments, community’s governing body). This process was and recognizes that changes at multiple levels (e.g., conducted to foster a sense of community through 174 © Pimatisiwin: A Journal of Aboriginal and Indigenous Community Health 11(2) 2013

Table 1. Timeline and History of Project Activities Related to the Prevention of Childhood Obesity in a First Nations Community in Alberta Canada Year Winter Spring Summer Fall • Aboriginal Elder met with two university researchers to explore community-based re- search interests and opportunities for the 2006 prevention of diabetes in a First Nations community. • Research funding proposal developed and submitted to a funding agency. • Community • Temporary project relationship coordinator hired. 2007 building initiated • Recruitment of Wisdom following receipt of 2 Committee members began. years funding. • Project staff recruited. • Data collection initiated. • Guiding Principles — Permanent project — Grocery Shopping Survey approved. coordinator position to assess which communities • Data collection: advertised and filled. to include in the Nutritious — Child weight status and — 2 postdoctoral fellows and 1 2008 Food Basket (NFB), baby physical activity graduate student recruited. food survey, and food avail- measurements; • First official Wisdom ability survey conducted — NFB survey partnering Committee meeting occurred. with youth. with Alberta Agriculture • First draft of the Guiding — Asset mapping with teens. and Rural Development. Principles prepared. • Data collection: • Data collection: — Children’s perceptions of — Photovoice with adults. • Funding proposal 2009 •NFB quarterly survey. healthy foods and physical — Asset mapping with submitted activities. children. • Community consensus building workshop to develop • Information exchange 2010 an action plan based on symposium with a Quebec project data First Nations community • Funding proposals submitted collective engagement and to ensure project sustain- university trainees (i.e., undergraduate and graduate ability (Israel et al., 1998). A project coordinator was students, and postdoctoral fellows). hired by researchers at the University of Alberta as a The composition of the Wisdom Committee re- liaison between university researchers and commun- flects the interrelated ecological factors influencing ity members. This person spent considerable time in the prevention of childhood obesity. Of note, the the community, building the rapport and trust ne- department directors played key roles in developing cessary to create what the community committee policies in the community in their respective depart- members eventually called the Wisdom Committee. ments, and the managers were charged with imple- The commitment of both university researchers and menting policies in order to achieve departmental community members to build relational capital re- goals. The directors gave permission for their staff to sulted in a Wisdom Committee that included com- attend Wisdom Committee meetings and, in some munity Elders; directors, managers, and staff from cases, made attendance a requirement of their staff. various local community departments (e.g., health, First Nations Elders play an esteemed role within social development, education, industry relations, families and communities, and can hold influential and employment); professionals who worked in leadership roles in enacting changes that influence (but lived outside of) the community; university re- the broader community. Having their active partici- searchers; a project coordinator; and a number of pation on the Wisdom Committee was considered very important for community-wide changes to de- velop from the research. Community-based Participatory Research to Address Childhood Obesity: Experiences from Alexander First Nation 175

Beginning in 2008, the Wisdom Committee met of Health Research’s (CIHR, 2007) Ownership, monthly in the community, which encouraged com- Control, Access, and Possession (OCAP) research prin- munity members to take ownership of the research ciples proposed by the National Aboriginal Health and participate fully in the decision-making process. Organization (Schnarch, 2004), and the Kahnawake Consistent with a CBPR approach, the commun- School Diabetes Prevention Project’s (2007) Code ity members of the Wisdom Committee helped to of Research Ethics. Over 8 months, the Guiding identify existing and emerging opportunities to in- Principles went through three iterations of line-by- tegrate the project into the greater community as line reviewing at Wisdom Committee meetings be- well as develop specific strategies related to obesity fore a final version was adopted in November 2008, prevention (Blackburn, 2000; Hesketh et al., 2005; 2 years after research funding was received. The Paradis et al., 2005; Ritchie et al., 2004). One of the Guiding Principles set the tone of the relationship Wisdom Committee’s first networking activities was between members, described research intent and to meet with the community’s Chief and Council goals, detailed ethical procedures and processes for about the research project and the establishment of conducting the research, specified obligations and the Wisdom Committee. This meeting led to a band responsibilities of different stakeholders working council resolution that formally acknowledged and on the project, and delineated Wisdom Committee expressed community support at the leadership level member roles. To ensure the document was easy to for this research. Chief and Council also granted the read and understand, legal and contractual jargon community members of the Wisdom Committee was avoided. In addition, the document was writ- power to make decisions on behalf of the commun- ten to clarify Wisdom Committee member relation- ity with respect to the planning, implementation, ships. It was stated that all members, regardless of and outcomes of the research project. These forma- their affiliation, had a shared concern in addressing tive steps ensured the project had community assent the health of children, youth, and families within as well as ownership and responsibility regarding the community. Further, given the democratic na- the research findings and their dissemination (Glass ture of CBPR, the document stated that and Kaufert, 2007). Each member is equally respected for the technical Developing a research agreement skills, wisdom, leadership, and/or cultural know- ledge she/he brings to this committee for the pur- To ensure respectful partnerships and to protect pose of ensuring the success of the project. themselves (and their community’s data), some First Nations communities have developed re- On the issue of Wisdom Committee members’ search agreements that outline how their com- roles and responsibilities, the Guiding Principles munity will engage with academic researchers in focused on the key expectations for community the context of community-based research (Bennett, and university members. For example, community 2004; Blumenthal, 2006). Although a formal re- members were charged with providing university re- search agreement was not required by the study searchers with guidance on the best approaches to funders or the university research ethics board, conducting research in the community, helping to Guiding Principles related to the conduct of this recruit participants for research activities, providing research were developed by and for the Wisdom advice on data interpretation, reviewing academic Committee, which then functioned as a de facto manuscripts and presentations to ensure cultural research agreement. The first draft of the Guiding sensitivity and appropriate use of language, and aid- Principles was prepared by the university Wisdom ing in knowledge transfer and exchange activities for Committee members as a launching point for dis- Chief and Council and the community. University cussion based on 3 examples drawn from the litera- members were responsible for organizing and chair- ture. Specifically, university researchers customized ing Wisdom Committee meetings, ensuring that the document from Guidelines for Health Research the research adhered to university regulations and Involving Aboriginal Peoples of the Canadian Institutes ethical guidelines, storing research data securely, 176 © Pimatisiwin: A Journal of Aboriginal and Indigenous Community Health 11(2) 2013 drafting plain language reports for community dis- perform functions, solve problems, and set and semination, and presenting research findings to achieve objectives. the Wisdom Committee (for consultation and in- For First Nations communities, community capacity terpretation) and the scientific community (in the building may also include attributes that empow- form of research abstracts, manuscripts, and/or er a community to effect social change (Fletcher et presentations). As the research project progressed, al., 2007). For university researchers, capacity build- community members took on some of the roles that ing has traditionally been viewed as human re- had been assigned to university researchers such as source development (e.g., skilled employees, gradu- co-chairing meetings and presenting the research at ate students). In the present example, the Wisdom conferences. Committee acquired multidimensional capacity The Guiding Principles influenced how the re- building founded in CBPR described below. search was conducted by identifying roles and re- sponsibilities and outlining processes and proced- Promoting community protection ures. The Wisdom Committee members used the CBPR has the capacity to balance existing power dif- Guiding Principles as a means to agree upon pro- ferentials, promote social justice, and ensure com- cess and ensure that process was followed in a way munity protection (Castleden et al., 2008; Reason that was acceptable to all involved. For example, it and Bradbury, 2001). Aboriginal communities can is noteworthy that this document included an ex- build capacity by developing skills that allow them plicit statement recommending that the principles to select and elicit research that is relevant and bene- should be reviewed and revised regularly to ensure ficial for them; in addition, they can exert control that they remained relevant to the research. This over how research results are reported and even was important in the context of CBPR since the re- whether their community will be named publicly. search scope, focus, and membership were likely to For example, the Wisdom Committee initially chose evolve over time. Finally, once they were concluded, to omit the name of the community in any exter- the Wisdom Committee members decided to leave nal knowledge transfer and exchange activities, but the Guiding Principles document unsigned. Wisdom later, because so little published Aboriginal health Committee members felt that requiring individ- research is positive in its tone, decided to include ual signatures would be exclusionary to those who the name of the community if the information high- joined in the future and overly formal, conflicting lighted positive community attributes or commun- with the committee’s desire to conduct the research ity successes. In the absence of CBPR, data collected in a spirit of collaboration and friendship. from Aboriginal communities on issues such as drug use, fetal alcohol spectrum disorder, family violence, Results and suicide often results in a negative public image By presenting our experiences with operationalizing and stigmatization of communities (Edwards et al., CBPR, we offer a real-life example of how CBPR can 2008). In contrast, our CBPR facilitated a shift in function as an approach for building community how the community viewed research — from threat- and researcher capacity to address childhood obes- ening to empowering. Much of the knowledge, ity. Specifically, applying a CBPR approach to the insight, and awareness of CBPR were generated research facilitated a number of outcomes that are through the creation of the Guiding Principles and described below in detail. participation on the Wisdom Committee. Wisdom Committee members contributed to knowledge Capacity Building transfer about their positive experience with CBPR The United Nations Development Program (2006) by participating in a symposium related to ethical defines capacity building as research among First Nations communities includ- The process by which individuals, organizations, ing discussions of the necessity of CBPR. A central institutions and societies develop abilities to issue that emerged through these discussions was Community-based Participatory Research to Address Childhood Obesity: Experiences from Alexander First Nation 177 how First Nations communities can protect them- had the opportunity to read and comment upon selves from unscrupulous and “helicopter” research. the manuscripts written for publication, thus learn- ing about how research is conveyed to the scientific Improving research capacity community. These examples show how the research Research, especially when conducted in the spir- increased the number of people in the community it of CBPR, can offer advantages for communities. with research knowledge. For instance, communities can negotiate employ- For the university researchers involved in this ment for community members, encourage involve- project (faculty members, project coordinators, ment of youth and Elders, as well as participate in trainees), the experience of participating in CBPR (and often lead) knowledge generation and transla- within a First Nations community enhanced their tion (Weber-Pillwax, 1999; Wallerstein and Duran, skill set to undertake research. University Wisdom 2006). For this project, community members of the Committee members improved their research cap- Wisdom Committee sought opportunities for other acity by publishing manuscripts on the research re- community members to be engaged in and learn sults, garnering new research grants, and presenting about the research process. For example, as part of the research at conferences and other forums (de- the strengths-based approach, the committee en- tails below). Community members of the Wisdom gaged two youths from the local school to map the Committee opened up new opportunities for uni- community’s nutrition and physical activity assets, versity researchers to engage with other First Nations thus chronicling community resources. They also communities that might otherwise have been reluc- conducted a survey of the costs of baby food, which tant. From a trainee perspective, developing a cadre met the needs of the research agenda as well as the of university educated students with knowledge of goals of the community’s health department. These respectful research practices prior to entering the experiences provided youth with employment and workforce benefits both First Nations communities an opportunity to explore research as a potential and the trainees who have enhanced cultural com- career. Although many First Nations communities petency. have neither funding nor local expertise to gener- ate a research agenda (Bennett, 2004) the First Creating long term engagement Nations members of the Wisdom Committee bene- The project brought together a committed group of fitted from new collaborative opportunities outside individuals who worked together in a spirit of col- the community as a result of the ongoing CBPR. laboration and respect, and were intent on securing University members of the Wisdom Committee broad community participation. These factors in- were able to connect community members of the crease the likelihood of sustainability and long-term Wisdom Committee with other university research- engagement in the community (Ritchie et al., 2004). ers who trained them in conducting qualitative re- Establishing the Wisdom Committee brought a di- search. This increased community capacity to partici- verse group of community members together, pro- pate in and conduct quality research (Castleden et viding a forum to create a common language of al., 2008). The qualitative research training allowed understanding among community members on the community members of the Wisdom Committee issues that were important to the community. As to conduct photovoice interviews. These members an indirect and unplanned outcome of its develop- were then involved in the interpretation of the tran- ment, the Wisdom Committee served as a meeting scripts. The acquisition of trained interviewers in place for community departments that had previ- the community facilitates self-determination, en- ously worked independently. In this way, capacity abling the community to negotiate future research building occurred as the result of the creation of projects that utilize community resources and rely institutional and political relationships with the less on outside support and expertise. As well, all potential for long-term sustainability (Bond et al., community members of the Wisdom Committee 2001; Paradis et al., 2005; O’Connor, 1995). 178 © Pimatisiwin: A Journal of Aboriginal and Indigenous Community Health 11(2) 2013

Knowledge Translation and Exchange search, research process, results, and KTE. University (KTE) researchers, their trainees, and the project coordin- The process of transferring knowledge is known as ator engaged with the community by participat- knowledge translation and exchange (KTE). The cur- ing in many community events (e.g., at the school, rent project built on existing definitions of KTE. At culture camps, treaty days, and health fairs), which CIHR, KTE is defined as not only fostered community interest in the project, aided participant recruitment, and helped dissemin- a dynamic and iterative process that includes ate research outcomes within the natural rhythm of synthesis, dissemination, exchange and ethic- community activities, but also developed good will, ally sound application of knowledge to improve the health of Canadians, provide more effective trust, and rapport between partners. These inter- health services and products and strengthen the actions helped university members to better under- health care system. (Canadian Institutes of Health stand community issues and perspectives, which Research, 2010) subsequently informed the interpretation of find- ings and guided the development of future research KTE in First Nations contexts as well as for university objectives that were relevant to the community. researchers engaged in CBPR can be conceptualized as “sharing what we know about living a good life” Improving access to culturally bound knowledge (Kaplan-Myrth and Smylie, 2006). The following ex- Improved access to culturally bound knowledge en- amples highlight how KTE developed in the context sures that decisions are based on culturally appro- of our project: priate methods to make interventions more relevant (Wallerstein and Duran, 2006). CBPR improves ac- Facilitating community dissemination cess to First Nations knowledge because people are It is widely accepted that KTE of research results in a more willing to share information when research is First Nations context should be developed and com- socially and culturally appropriate (Schnarch, 2004). municated by community members, by First Nations Having community representation in the project in- community-based organizations, and/or by First creased the likelihood of community members con- Nations leaders (Kaplan-Myrth and Smylie, 2006). senting to share their knowledge and participate At a very practical level, the project was named in as research volunteers. For example, using a series Cree by the community Wisdom Committee mem- of focus group interviews with children from the bers as the Alexander Meyo Pematchehiwin (Healthy community school, access to cultural knowledge Living) Project and represented in communications and contextual information regarding factors that and posters by pictures drawn by children in the influenced children’s food and activity choices was community. This situated the project in the com- obtained.* Access to traditional knowledge was also munity, making it accessible to community mem- generated through research with adults that em- bers. In addition Wisdom Committee commun- ployed photovoice methodology, which encouraged ity members co-presented research findings with adults to discuss community assets using photo- their university counterparts at Chief and Council graphs (unpublished manuscript). By encouraging meetings and community meetings. These activities, community members to discuss traditional foods, along with informal discussions with community activities, and practices, First Nations groups can members in general, enabled information sharing revitalize their culture and ensure that tradition- related to the project. Broad community member- al practices are captured in the research process ship in the Wisdom Committee provided immedi- (Wallerstein and Duran, 2006). This is especially ate access to a diverse group of family and friends important for First Nations peoples in Canada who of members in the community, which facilitated the have had their cultural beliefs and practices under- dissemination of the project and its findings. mined and maligned via residential schools and as- University committee members also played an similation policies (King et al., 2009). instrumental part in community awareness of the re- * Publication information withheld to preserve community anonymity. Community-based Participatory Research to Address Childhood Obesity: Experiences from Alexander First Nation 179

Providing positive community exposure and sharing entations regarding the research,* and subsequent experiences research funding to continue CBPR in the commun- A variety of KTE activities outside of the commun- ity (Table 2). From an academic perspective, this ity provided opportunities for positive community project generated novel research data shedding light exposure. Wisdom Committee members from the on health issues related to obesity in First Nations community shared their experiences with the pro- children in Canada. This was the first research to ject and the knowledge gained about research and examine childhood abdominal obesity in relation to children’s health at several meetings outside the weight status and physical activity among on-reserve community. For example, in February 2009 Wisdom First Nations children in Alberta.* It was also the first Committee members shared an overview of the research the authors are aware of to elicit the percep- project at a Community-University Partnership tions of young First Nations children about the foods (CUP) workshop held by the Faculty of Extension and activities that they prefer and subsequently de- (University of Alberta). From this powerful presen- velop policies around their preferences.* Adult com- tation and the pride conveyed by community mem- munity members conducted and participated in a bers about their participation in the research process, qualitative group interview using photovoice to dis- a CUP-sponsored exchange of ideas was organized cuss community assets (unpublished manuscript). between First Nations community members from Community members also participated in a com- this project in Alberta and a First Nations commun- munity consensus building workshop that used the ity participating in a similar child obesity project, in ANGELO framework (Swinburn et al., 1999) to de- the province of Quebec. After funding ended for the velop an action plan based on the timely return of original project, in 2011, the Wisdom Committee research results. was invited to give two workshops at an Alberta Table 2. Internal and External Initiatives That Have First Nations Food Security Training Session funded Developed Based on our Formative CBPR Project by First Nations and Inuit Health of Health Canada with a First Nations Community in Alberta Canada (Aboriginal Diabetes Initiative) administered and or- Internal Projects Conducted External Projects Conducted ganized by the Yellowhead Tribal Council. In these within the Community outside the Community workshops, Wisdom Committee members described Partnering with industry to Community-University provide water bottles for Partnership Presentation the CBPR approach to address child health and sub- children in the school • Winter 2009 sequent food security research to other First Nations • Summer 2010–ongoing Ethics Symposium and • Result of consensus work- discussions with Quebec Cree throughout the province of Alberta. shop • Spring 2010 Local media also provided opportunities to Earthboxes in the school and at External Media Exposure positively showcase the project. Media contacted the Elder lodge • Winter 2010–ongoing • Summer 2010–Spring 2012 Undergraduate students Wisdom Committee members from the university Cultivating Food Security research practicum wanting to write an article about the research, and a Project • Fall 2010 • Fall 2010–Fall 2012 Wisdom Committee community member designate • Funded by: ACCFCR was nominated to negotiate terms with the media representative to ensure that the community was Other Unexpected Consequences not portrayed negatively. Through this designate, Including New Research the community was able to exercise some control Bringing together community and university mem- over how the media described the project, which bers to work within the Wisdom Committee en- ensured some degree of community protection and abled research grounded in CBPR practices; it also positive exposure. allowed a transition to new research projects, none Novel Research Findings of which were planned at the onset of the original This formative research led to the publication of project (for an overview of the subsequent projects, three academic manuscripts,* three scientific pres- see Table 2). New projects benefited from having an * Publication information withheld to preserve community anonymity. established in situ Wisdom Committee. Starting in 180 © Pimatisiwin: A Journal of Aboriginal and Indigenous Community Health 11(2) 2013

2010 and building on the research results from the that CBPR can take longer than expected, and pro- current project, the Wisdom Committee embarked vided a funding extension. However, given the ex- on new research to explore community members’ tended time period and ongoing project costs (e.g., meanings of food security and to enhance food se- the project coordinator’s salary), additional funding curity through container vegetable gardening at the was required to sustain the project. For example, school and community Elder lodge. This research trainees were supported through a variety of in- was again funded by the Alberta Centre for Child, dependent scholarships and research grants. The Family and Community Research as well as operat- length of time from data collection to the submis- ing grant funding from CIHR, and a contribution sion of manuscripts for peer review was lengthened agreement from First Nations and Inuit Health of by using CBPR. As part of our process for knowledge Health Canada (a branch of the federal government). translation, informed by the Guiding Principles, all Funding proposals were strengthened by the inclu- research abstracts and manuscripts prepared by uni- sion of research results from the CBPR project and versity researchers were first reviewed and critiqued by having a Wisdom Committee and guiding prin- by the Wisdom Committee. Additional training and ciples already in place. Additionally, university ethics mentorship from university Wisdom Committee review board approval was received in a timely fash- members was required to ensure that community ion for the new research projects, because the re- members of the committee understood the academ- search agreement could be easily updated to accom- ic processes involved in presenting data analysis and modate new research objectives and the Wisdom interpretation. Based on these experiences to date, Committee was accustomed to and readily provided funding agencies that support Aboriginal health re- community letters of support for the new projects. search should also offer KTE grants to support the process of publishing research data resulting from Operationalizing CBPR: projects that apply CBPR. Opportunities and Challenges Although the research engendered a high level of community engagement, challenges emerged in We have provided a real-world example of anticipat- maintaining momentum. While community repre- ed and unanticipated outcomes from a community- sentatives from Health and Education Departments based study that now continues as multiple ongoing were most consistently engaged in the project, there complementary research projects following the was difficulty sustaining interest from other depart- same principles of CBPR as the initial study. As high- ments. Opportunities are being explored to enhance lighted throughout this paper, CBPR is not only a engagement within the community, especially for time-intensive process, but requires conscious atten- those previously engaged individuals and depart- tion to partnership development and dissemination ments who have not participated in project-related strategies from the conception of the research pro- activities in the recent past. Some difficulty was en- ject (Estey et al., 2009). The project was challenged countered with knowledge transfer and exchange by both time and financial constraints since build- within the Wisdom Committee, which included dis- ing relational capital required patience and exten- seminating study-related documents to all Wisdom sive face-to-face capacity building. Developing the Committee members and receiving timely feed- Wisdom Committee and the Guiding Principles were back from members. Some community Wisdom not linear activities that could be achieved by follow- Committee members explained that cultural differ- ing a “cookbook” of steps. Though time intensive the ences regarding timeliness and expectations around focus and emphasis on relationship building laid the communication (e.g., email, phone messaging, in- foundation for the cooperative work the Wisdom person meetings) explain some of these challenges. Committee continues to do in 2013 as the Alexander These experiences highlight the importance of cus- Research Committee (ARC). tomizing communication strategies to the needs of We were fortunate that the funding agency the community. They also reinforce the value of face- (ACCFCR) was flexible with the timeline, recognized Community-based Participatory Research to Address Childhood Obesity: Experiences from Alexander First Nation 181 to-face interactions within First Nations commun- healing practices within a western health research ities, which require that designated resources and approach. The construction of the research allowed time are factored into project planning and imple- First Nations approaches to health and healing to be mentation for these types of meetings. maintained and supported in parallel with findings We are aware that not every CBPR project will from health research embedded in a western way be able to solicit the high level of engagement de- of knowing (Kaplan-Myrth and Smylie, 2006). The scribed in this paper. The success of the research was CBPR approach further built capacity for the com- due, in part, to having sufficient funds to pay for munity to decide how to share traditional know- a full-time project coordinator who served as a li- ledge under conditions of cultural safety. aison between the community and the university. The project also required an extensive amount of Conclusion time from university and community members to It has been said that Indigenous people are chronic- attend community meetings and events (including ally at the margins of research and often researched travel to and from the community) and assist with to death (Kaplan-Myrth and Smylie, 2006). In con- research administration, a high level of commit- trast, we describe our research experiences in using ment from department managers and directors in CBPR to “research a community to life” by hav- the community, and a high monetary cost for car ing community and university researchers come rentals, catering, and community engagement. Most together as partners in the research process to ad- Wisdom Committee members living or working in dress community concerns and build community the community were highly educated and very lit- capacity while generating new scientific knowledge. erate in English and could contribute substantial- Our research example offers insight into how CBPR ly to the research process in a timely fashion; this can facilitate community agency, build community might not be the case in all Aboriginal communities capacity (Ritchie et al., 2004), and facilitate social where work with translators and more emphasis on change (Mertens, 2007), in addition to generating plain language reporting and knowledge translation novel academic findings as a foundation of know- would be required. Further, it was possible for uni- ledge on which to build effective, community-based versity researchers to frequently be in the commun- strategies to prevent childhood obesity in a First ity which was within 100 km of the university. A Nations community. longer commute to and from the community would have presented a greater challenge to conduct CBPR, References and increased both expenses and time. Adams, A. (2005). Healthy lifestyle indicators in children The CBPR project described helped this First (grade 4–6) from Kahnawake Schools Diabetes Nations community to reclaim ownership over its Prevention Project. Canadian Journal of Diabetes, health knowledge, capture control of the research 29(4), 403–409. process, and bring together community institutions Bennett, M. (2004) A review of the literature on the bene- (Kaplan-Myrth and Smylie, 2006). 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Lawrence, KS: Work Group on Health Promotion We also feel that the CBPR strategies employed se- and Community Development, University of cured recognition for Indigenous knowledge and Kansas, chapter 3, section 8. 182 © Pimatisiwin: A Journal of Aboriginal and Indigenous Community Health 11(2) 2013

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Reason, P. and Bradbury, H. (2001). Handbook of Action Applied Physiology, Nutrition, and Metabolism, 37(1) Research. Thousand Oaks, CA: Sage Publications. 1–13. Ritchie, D., Parry, O., Gnich, W., and Platt, S. (2004). Wilson, K. and Young, T.K. (2008). An overview of aborig- Issues of participation, ownership, empowerment inal health research in the social sciences: Current in a community development programme: Talking trends and future directions. International Journal smoking in a low income area in Scotland. Health of Circumpolar Health, 67(2-3), 179–189. Promotion International, 19(1), 51–59. Ashlee-Ann E. Pigford, MSc, is a Research Assistant in Schnarch, B. (2004). Ownership, Control, Access and the Department of Agricultural and Food Nutritional Possession (OCAP) or Self-determination Applied to Science at the University of Alberta. She has also Research: A Critical Analysis of Contemporary First worked on Aboriginal obesity projects for the Native Nations Research and some Options for First Nations Women’s Association of Canada and Canadian Feed the Children. At the time of this research, Ashlee-Ann was Communities. Ottawa: First Nations’ Centre, conducting research in the community as part of the National Aboriginal Health Organization. requirements for her Master’s degree, which was funded Shields, M. (2006). Overweight and obesity among chil- by a graduate scholarship from the Canadian Institutes dren and youth. Health Reports, 17(3), 27–42. of Health Research (CIHR) through the Alberta Network Environments for Aboriginal Health Research. Working Swinburn, B., Egger, G., and Raza, F. (1999). 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Aboriginal Diabetes Type 2 within a Population meetings, participated in community events, facilitated data collection and community workshops, and Health Context. Working Groups of the National knowledge translation and exchange activities. Aboriginal Diabetes Strategy, Medical Services Branch., 46-50. Health Canada. Background Paper Geoff D.C. Ball, PhD, RD, is an Associate Professor in the for the Development of an Aboriginal Diabetes Department of Pediatrics at the University of Alberta and Strategy: Report of the Working Group. Director of the Pediatric Centre for Weight and Health at the Stollery Children’s Hospital in Edmonton, AB. He is also United Nations Development Program. (2006). United an Adjunct Professor in the Department of Agricultural, Nations world water development report 2: Water, Food and Nutritional Science at the U of A. At the time a shared responsibility. Available at: http://www. of this research, Dr. Ball was supported by a Population undp.org/content/undp/en/home/ourwork/cap- Health Investigator Award from Alberta Innovates-Health acitybuilding/overview.html. Solutions (AI-HS) and a New Investigator Award from CIHR. Dr. Ball was a co-principal investigator on a grant Wallerstein, N.B. and Duran, B. (2006). Using commun- (with NDW) that initiated this research. He participated ity-based participatory research to address health in project set-up, research design, steering committee disparities. Health Promotion Practice, 7(3), 312–323. meetings, data analysis, knowledge translation and Weber-Pillwax, Cora. (1999). Indigenous research meth- exchange activities, and supervised trainees. odology: Exploratory discussion of an elusive sub- Nick L. Holt, PhD, is an Associate Professor in the Faculty ject. The Journal of Educational Thought, 33(1), 31– of Physical Education and Recreation at the University 45. of Alberta. He completed his undergraduate degree in Geography with Physical Education and Sport Sciences Willows, N.D, Hanley, A.J.G. and Delormier, T. (2012). A at Loughborough University, England, his MSc in Exercise socioecological framework to understand weight- and Sport Psychology at Exeter University, England, related issues in Aboriginal children in Canada. and his PhD at the University of Alberta. His research Community-based Participatory Research to Address Childhood Obesity: Experiences from Alexander First Nation 185 is focused on psychosocial aspects of youth sport and for Yellowhead Tribal Council, which services many First physical activity, including children’s and adolescents’ Nations communities in central and northern Alberta. This interactions with peers and their families. Dr. Holt, a co- project was initiated by a conversation about children’s investigator on the project, provided ongoing expertise to health and well-being that was held between Mrs. Arcand, guide qualitative research, and traveled to the community Dr. Ball, and Dr. Willows. Based on this conversation, it to train community members in building research skills was evident that there was interest from the community and capacity to enable future research. (Mrs. Arcand) and from the University of Alberta (Drs. Ball, Willows) to apply for external funding in order to Ron C. Plotnikoff, PhD, is the Chair in Physical Activity conduct a community-based research project, which and Population Health Education at the University would help us to gain a better understanding of children’s of Newcastle. Dr. Plotnikoff’s research focuses on health in Alexander. Mrs. Arcand was a collaborator on individual-, behavioural-, and environmental-level theory this project and contributed her expertise in project set- and intervention development/testing for the prevention up, networking with First Nations stakeholders within and management of diabetes and cardiovascular disease, and beyond the community, and assisted with knowledge as well as the promotion of healthy body weights and translation and exchange activities. general health of the population through physical activity. This research is conducted across various target Alexander First Nation: The community where the populations (i.e., children, youth, adults, women, First research occurred in Alberta, Canada. Nations) and settings (i.e., clinics, schools, workplaces, Noreen D. Willows, PhD, is an Associate Professor of communities, and the broader population). Dr. Plotnikoff Community Nutrition at the University of Alberta. At was a co-investigator on this project and contributed the time of the research she was a Population Health expertise to project set-up, study design, and knowledge Investigator with AI-HS and considers herself to be a translation and exchange activities. nutritional anthropologist. Her research program explores Paul J. Veugelers, PhD, received training in human the relationships between food and health; cultural nutrition (MSc from the University of Wageningen, the meanings of food and health; how food beliefs and Netherlands), epidemiology (PhD from the University dietary practices affect the well-being of communities; of Amsterdam, the Netherlands), and biostatistical and how sociocultural factors affect food intake and food modeling (postdoctoral fellowship at the University selection. Currently, she is examining obesity from an of British Columbia). He is currently a Professor in the ecological perspective in Cree communities in Alberta and School of Public Health at the University of Alberta. Dr. Quebec as well as ways to conceptualize Aboriginal food Veugelers received a CIHR New Investigator Award and security. Dr. Willows was a co-principal investigator on currently holds a Canada Research Chair in Population this project (with GDCB) and participated in project set- Health and an AI-HS Scholar Award. He studies the up, research design, steering committee meetings, data importance of nutrition, healthy lifestyle, socioeconomic analysis, community workshops, knowledge translation factors, intervention programs and policies in relation to and exchange activities, and trainee supervision. Building overweight and chronic diseases. Dr. Veugelers was a co- on this formative research, she has worked with the investigator on this project and contributed expertise to community to expand the scope of research to (1) gain project set-up, study design, and knowledge translation information about food security to develop a tailored, and exchange activities. community-based intervention, and (2) build community capacity in order to alleviate food insecurity. Ella Arcand is a Cree Elder from Alexander First Nation [email protected] in Alberta. Mrs. Arcand has served as the Health Director