Community-based participatory research (CBPR) approach to study children's health in China: Experiences and reflections

Abstract

Background

Community-based participatory research principles have been successfully applied to public health research in U.S. settings. While there is a long history of collaboration between government and communities in China, to date, community-based participatory research has not been used in children's environmental health studies.

Method

This article describes how community-based participatory research principles were applied by an international research group to the China Jintan Child Cohort Study, a longitudinal study of malnutrition and lead exposure on cognitive and neurobehavioral development. Challenges emerged and lessons learned from implementing the study were discussed and recommendations were presented.

Conclusion

We conclude that the community-based participatory research model can be applied in conducting and promoting environmental health research in China and researchers should be prepared for special challenges and cultural constraints in the implementation of the research in regards to human subject regulations, information dissemination, and culture.

Introduction

Israel et al. (1998) defined community-based participatory research (CBPR) as a research focusing on “social, structural, and physical environmental inequities through active involvement of community members, organizational representatives, and researchers in all aspects of the research process.” Through the contributions of all partners, including the U.S. research team, participating local parents and students, school teachers, regional government officials, and hospital staff, the aim of CBPR is to combine knowledge of interventions and policy changes to achieve better health status of involved communities. The rationale, principles, and benefits of CBPR have been extensively discussed (Israel et al., 2003, Israel et al., 2005). CBPR principles have been successfully applied to the development and the conduct of an increasing number of public health research projects (Bogart and Uyeda, 2009, Brown et al., 2005, Din-Dzietham et al., 2004, Krieger et al., 2002, Lengerich et al., 2007, Metzler et al., 2003, Parker et al., 2003, Paschal et al., 2008, Pazoki et al., 2007, Savage et al., 2006). The CBPR model can be seen as research “with” the community rather than research “on” the community (Ali et al., 2008). In addition, the model can serve as a bridge between participating parents and students, government representatives, and researchers. Benefits of CBPR have been well recognized (Israel et al., 1998). CBPR ensures that the research topic comes from, or reflects, a major concern of the local community and brings together all partners with different expertise. By involving local knowledge of local partners, CBPR enhances the validity, quality, relevance, and usefulness of research data. CBPR may also help overcome the understandable distrust of research on the part of communities that have historically been the “subjects” of such research.

The CBPR model has been utilized for nearly 25 years and has served as an important tool to advance environmental health sciences in the United States (Arcury et al., 2001, Brody et al., 2005, Brugge and Cole, 2003, Cook, 2008, Cummins et al., 2010, Downs et al., 2010, Horn et al., 2008, Israel et al., 2001, Kegler et al., 1998, Latowsky, 2003, Levy et al., 2006, Minkler et al., 2006, Parker et al., 2003, Petersen et al., 2006, Schell et al., 2005, Schulz et al., 2001, Wier et al., 2009). More recently, the CBPR model proved a useful approach in children's environmental health and disease prevention research (Israel et al., 2005, Kegler et al., 2000, Moodie et al., 2010, Parker et al., 2008, Petersen et al., 2007, Schetzina et al., 2009). Building on previous experiences, the National Institute of Environmental Health Sciences (NIEHS) recommended that every CBPR program should contain six main principles: (1) promoting active collaboration and community-based participation at every stage of research, (2) fostering co-learning, (3) ensuring projects are community-driven, (4) disseminating results in terms useful to all collaborators, (5) ensuring research and intervention strategies are culturally appropriate, and (6) defining the community as a unit of identity (O’Fallon and Dearry, 2002).

While CBPR has been increasingly recognized in the US, this model has been rarely used in public health research in China. China's rapid economic growth within the past decades has led to serious environmental issues such as outdoor pollution, water quality, and pesticide residuals in food products (Liu et al., 2010a, Liu et al., 2010b, Liu et al., 2010c). The children's health in China is threatened by both traditional and emerging environmental pollutants (Ye et al., 2007). Though the governmental structure in China is different than in the US, the long history of collaborations between the government, industry, and communities in China suggests that CBPR may be an effective way to foster environmental awareness within communities and encourage different groups to take action on environmental issues (Ali et al., 2008). To date, there have been no published accounts of full-scale CBPR projects in China. Nevertheless, some studies have reported community involvement in the process of translating US measurement instruments into versions culturally appropriate for the community (Chang et al., 2006).

In this paper, we describe the process of developing and conducting The China Jintan Child Cohort Study (Liu et al., 2010a, Liu et al., 2010b, Liu et al., 2010c) using CPBR principles. We wanted to use this study as a case to present the feasibility and challenges of applying CPBR principles in China. We believe our experiences may benefit investigators, especially those who are not familiar with China and other populations sharing similar culture and research environment. We then highlight challenges and lessons we experienced and our recommendations for other investigators.

The study site of CJCCS, the city of Jintan, has been of concern to local health workers and investigators due to environmental pollution problems, such as smelter, cement, chemical, and plastics factories, related to rapid development of small industrial facilities. The majority of factory jobs are in manufactory industries such as smelter, cement, and electronic cables with lead exposures. Wang and colleagues (Wang et al., 2009) found that the weekly lead intake per body weight in children living in this area was higher than that of adults, and 30% of the children had a weekly intake that was greater than the provisional tolerable weekly intake defined by the Joint FAO/WHO Expert Committee On Food Additives.

The CJCCS project was conceived in 2002 and initiated in 2004. Guided by the our conceptual framework for understanding the relationship between early health risk factors and children's behavioral outcomes (Liu, 2011), the aim of this study is to examine the long term impacts of early exposure to environmental toxins (mainly lead) and malnutrition on the development of children's and adolescents’ neurocognitive and neurobehavioral outcomes, in which interactions between environment and nutrition will also be investigated. The study involved a close collaboration between American and Chinese scientists and the Jintan community and was designed to include many years of follow up. Between autumn 2004 and spring 2005, all children (age 3–5 years old) attending the four pre-schools in the area were invited to participate in our study. Baseline data on blood lead and micronutrients was assessed for 1656 children. The first follow-up from 2005 to 2007 included IQ tests, behavioral outcomes, as well as psychosocial, health and demographic information for 1385 children in the cohort. Children from the original cohort are now enrolled in several Jintan elementary schools and the second follow-up for 2009–2010 at the elementary schools included measures of cognitive ability, academic records, school performance, health data (e.g. sleep pattern and nutrition status), and behavioral outcomes. Table 1 shows main measures planned at each stage of follow-up.