Community Based Participatory Research to Reduce Oral Health Disparities in American Indian Children

Special Article - Community Healthcare

J Fam Med. 2015;2(3): 1028.

Community Based Participatory Research to Reduce Oral Health Disparities in American Indian Children

Tiwari T¹*, Sharma T¹, Harper M¹, Zacher T¹, Roan R¹, George C¹, Swyers E¹, Toledo N¹, Batliner T¹, Braun PA², Albino J¹

¹Centers for American Indian and Alaska Native Health, Colorado School of Public Health, University of Colorado Anschutz Medical Campus, USA

²Children’s Outcomes Research Program, University of Colorado Anschutz Medical Campus, USA

*Corresponding author: Tiwari T, Centers for American Indian and Alaskan Indian Health, University of Colorado Anschutz Medical Campus, USA

Received: April 24, 2015; Accepted: May 15, 2015;Published: May 18, 2015

Abstract

Community based participatory research is an approach aimed to equitably involve community members, representatives, and academic researchers in all aspects of the research process. Using this methodology can help integrate cultural knowledge into interventions, supporting researchers to effectively partner with communities in addressing health disparities. The Center for Native Oral Health Research (CNOHR) collaborates with two American Indian (AI) tribes to advance oral health knowledge and practice, including the conduct of randomized controlled clinical trials of culturally sensitive behavioral interventions for primary prevention of early childhood caries (ECC). This manuscript describes the development of researcher–community partnership, and the development and implementation of the two clinical trial in the community. It also gives a detailed account of the strategies developed through the community input in recruitment and retention of the study participants and finally the lessons learnt during the study implementation.

Keywords: Community based participatory research; American Indian; Community advisory board; Center for native oral health research; Early childhood caries

Introduction

In recent years, an alternative paradigm of public health research focusing on gathering data within cultural contexts, as opposed to the traditional “outside expert” approach, has seen increasing support due to its validity and ability to address complex health problems [1]. Community based participatory research (CBPR) is an approach that aims to involve community members and representatives from community organizations, with academic investigators in all aspects of the research processes, thereby ensuring the relevance of interventions and approaches, and ultimately enhancing integration of the produced knowledge into the community [2]. CBPR principles required for meaningful and relevant research were compiled by Israel et al., and can be broadly summarized as follows: “recognition of a community as a unit of identity; facilitate collaborative, equitable partnership in all phases of the research, achievement of balance between knowledge generation and intervention for mutual benefit of all partners, capacity building among all partners, and a focus on local relevance of public health problems and long term sustainability [3]”. Employing a CBPR approach may prove to be a successful strategy in addressing several key obstacles in engaging diverse groups in health research [4].

CPBR approach ensures the relevance of the research data to the community and expedites approaches for effectively translating community interventions into public health policies and prevention into wide spread preventive practice at a community level [5]. Since this form of partnership elicits mutual ownership of the research process and its products, specific facets of the intervention that are a priority from the community’s perspective may be more cogently and realistically addressed, creating an ideal system for facilitating prevention [5, 6]. This method has been successful in addressing a variety of health outcomes and reducing health disparities in many ethnic-minority groups [5].

American Indian (AI) communities are strongly supportive of CBPR and express less enthusiasm for research processes that are not based on participatory practices [7]. In fact, as tribal nations assert their sovereignty in the area of research, the use of CBPR has become less an option and more a precondition for research [8].

In addition to the characteristics of CBPR mentioned, there are other advantages of community based research in AI communities. First, CBPR is consistent with strong tribal values of sovereignty and self-determination. The methodology allows tribal governmental control over some aspects of the research process and prioritizes community interests in driving the research design. Selfdetermination is kept intact since partnerships between communities and researchers facilitate the dissemination of research results to improve community programs and services [9]. Researchers are required to thoroughly and transparently define the project, including its ethical ramifications and potential benefits to the community [10]. This orientation to research also empowers the AI community to design and test its own interventions or programs, tailoring such efforts to the priorities of community members.

Though CRPR methodology is being used broadly in research focused on prevention of a variety of health problems, its use in oral health research has been limited, and only a few recent studies have reported CBPR to be a priority in the development of oral health interventions [11, 12, 13].

This manuscript describes researcher—community partnership in developing culturally-acceptable and effective strategies to prevent early childhood caries (ECC) in AI children and to improve implementation for the two clinical trials.

Methods

In 2008, the Center for Native Oral Health Research at the University of Colorado Anschutz Medical Center was funded by the National Institute for Dental and Craniofacial Research (U54DE019259) to develop and test interventions for preventing ECC among AI populations. ECC prevalence is most extreme in American Indian children, suggesting disparate risk and the need for effective, culturally-acceptable interventions [14]. Through two separate clinical trials, CNOHR Study I and CNOHR Study II, each in a separate reservation-based tribe, CNOHR investigators have worked closely with AI communities to create meaningful oral health interventions by adapting to CBPR approaches. CNOHR’s mission is to work with AI communities to conduct, facilitate, and disseminate the next generation of AI oral health intervention research, with an initial focus on oral infections and their complications – primarily dental caries, or decay.

The first trial, “Behavior Change for Oral Health in AI Mothers and Children (CNOHR study I) in a Northern Plains tribe [15]”, assesses the effectiveness of motivational interviewing (MI) to encourage prevention of dental caries in children through behavior change in new mothers. We hypothesized that children of AI mothers randomized to the MI intervention will achieve greater reduction of dental caries compared to children of those randomized to receive community services alone. Six hundred mothers or caregivers of newborns are currently enrolled in the study and randomized to one of the two intervention groups; the caregiver—child dyads arebeing followed for 3 years. The intervention is delivered by trained community members.

The second trial, “Preventing Caries in Preschoolers: Testing a Unique Service Delivery Model in American Indian Head Start Programs [16]”, is an innovative community-based trial in Head Start Centers in a Southwestern tribe. A total of 1016 children enrolled in 52 Head Start Centers across a large, rural reservation were recruited into the study. This 3-year, cluster-randomized trial (2 years of intervention plus an additional year of outcomes assessment) compares outcomes for a fluoride varnish and oral health promotion intervention provided by tribal members trained as Community Oral Health Specialists (COHS) with usual care in the community.

The primary outcome measure in both studies is the level of dental caries; secondary outcomes are oral health-related behaviors, knowledge, attitudes and oral health-related quality of life, as well as other mediators and moderators associated with dental caries. Both the clinical trials use CBPR approach and engage the tribal communities in all aspects of research from development to dissemination. Both the studies received approval from tribal and University institutional review boards initially and have approved continuing review subsequently. This manuscript has also received approval from both tribal research review boards.

Community partnership development

Before the grant application was submitted, several planning and advisory session were held for members of the tribes and communities with whom we expected to work, including tribal representatives and other AI community members, health board representatives, education board representatives, members from tribal governance, and Indian Health Service representatives. Feedback from such individuals provided critical input to our decisions related to priorities for addressing AI oral health. We also sought input for the general plans, the draft mission statement, and specific aims, as well as the conceptual framework that had been drafted for CNOHR thorough a planning and feedback process.

After funding was received and CNOHR was established, a community advisory committee (CAC) that provides input on all CNOHR research activities, and a community advisory board (CAB) that provides input on the two clinical trials were formed. Apart from these committees, tribal members serve as key informants, field staff, MI interventionists (CNOHR Study I) and Community Oral Health Specialists (CNOHR Study II) Table 1.