The Collaborative prioritizes advancing inclusive, participatory methodologies in the context of challenges related to brain disorders in LMICs. Participatory methodologies used in health research are described in this section along with specific tools to foster strong relationships within communities. It provides tools to:
- Link research to an already successful community-based organization and/or group.
- Identify opportunities for research to be informed by the local context and priorities
- Ensure that empowered communities benefit from policies, programs, and practice that are informed by evidence.
- Conceptualize the types of relationships necessary for success in implementation science.
- Develop strong inter-sectoral, inter-disciplinary relationships.
There are multiple models of participatory research that may be relevant to brain and nervous systems research in LMIC contexts. They are utilized when the researcher prioritizes engaging and empowering stakeholders and have the capacity to increase the impact of interventions and improve health (Minkler & Wallerstein, 2003). All of these models depend on relationships among stakeholders, to include researchers, beneficiaries, end users, policymakers and program implementers. Challenges in using participatory models are well documented. Issues like preparing partners for research engagement, the time consuming nature of building these relationships, ethical considerations, and reconciling different priorities and interests pose significant challenges (Duque-Páramo et al., 2013). Nevertheless, several models have been used effectively in health research.
Minkler and Wallerstein write that action research (AR), participatory action research (PAR), and community-based participatory research (CBPR) represent methods in which the community determines the research agenda and jointly shares in the planning, implementation of data collection and analysis, and dissemination of the research findings (Minkler & Wallerstein, 2003). These three approaches are outlined below with the definition, assumptions of the model, and examples of use in healthcare, health systems, and health research contexts.
Practical tools and training opportunities for participatory research and building relationships with diverse stakeholders are listed Resources for Implementation Science Researchers.
Action Research (AR) is a process of inquiry that describes, interprets, and explains social situations while executing a change intervention aimed at improvement and involvement (Lewin, 1946). It is problem oriented, context-specific, and seeks to influence future action so it is useful when attempting to resolve a recognized problem in a systematic way.
Two assumptions of this model are first that community empowerment is an integral part of strong, useable results, and traditional scientific inquiry raises challenges to empowerment. AR, just like the other two models discussed below, assumes that the positivist view of science is false, meaning that the scientist cannot be an unbiased observer of social or systemic phenomena. AR is characterized by its frame which is less critical of standard scientific tools (hypothesis testing, managing bias, etc.) than the other two models and thus may be more acceptable in Western medicine and public health practice (Waterman, Tillen, Dickson, & De Koning, 2000). There are several examples where this approach has been found useful in health research. For example, in an extensive systematic review of British National Healthcare Service literature Waterman et al indicated that this methodology increased involvement of multiple stakeholders to improve healthcare delivery (Waterman et al., 2000).
Participatory Action Research
Participatory Action Research is a research process involving practitioners from the initial concept and design of the project through to drawing conclusions and determining resulting actions (Whyte, 1991). It is a social research methodology characterized principally by low-ranking individuals in organizations and communities participating in decision making related to the research. The process was developed in Latin America as a reaction to colonization and functions from an assumed power structure in which communities have to push against powerful outside influences with positivist science perspectives (Freire, 1982, 2000). This model may be most useful when interacting with entrenched power hierarchies that historically concentrate power outside of communities.
The assumptions of participatory action research present both challenges to conventional health sciences research approaches, as well as provide a positive model for engagement of end users in the research process. Some practitioners argue that successful use of this methodology requires deep knowledge of critical social science and critical theory (Breda, 2015). Like Action Research, Community Based-Participatory Research rejects positivist view of science, or the concept that scientific inquiry is objective observation by an outside entity. As such it is essential that the end users of the research, those affected by the outcomes, and the communities that create the context for the questions, be integrally involved from the inception of the research to the outcomes. In integrating the stakeholders so deeply, the process requires verifying the facts of analysis with the members of the organization and or community of study. Lastly, it assumes that the role of the scientist is to both engage in discovery and make use of discoveries. Examples of this process come from qualitative nursing research in Latin America (Duque-Páramo et al., 2013). It has been used in Colombia to analyze and draw attention to inequalities and promote social inclusion for marginalized people (Duque-Páramo et al., 2013).
Community-Based Participatory Research
Community-Based Participatory Research (CBPR) is a participatory, cooperative process between community members and researchers in the research process. Both contribute equally to the research process and the approach requires co-learning for systems development and capacity building (Minkler, 2010). Participants increase control over their lives in an empowering process that achieves a balance between research and action. It includes three main components: research, action, and education and may be most effective in contexts that address human rights issues and include an education component.
Assumptions of this model raise the same complexities as the two described above. Like PAR and AR, CBPR also rejects a positivist view of science. The model hinges on a strong social justice and human rights based framework. Several examples of use in health exist in the literature. Betancourt et al utilize community-based participatory models in a study of mental health in youth in two different communities, one of Somali Bantu and another of Bhutanese refugees to Massachusetts where they identified a need for culturally informed methods to address mental health needs including conduct disorders, depression, and anxiety. Using this methodology helped to provide critical insights for fostering awareness, and encouraging engagement for those in need of preventative or treatment services (Betancourt, Frounfelker, Mishra, Hussein, & Falzarano, 2015). Leung et al use the approach in epidemiology practice. Specifically, using this approach, they examine the ways that creating community partnerships has been utilized by environmental epidemiologists in advancing environmental justice (Leung, Yen, & Minkler, 2004).
Building community partnerships through strong relationships is integral in all of the community based research models above, as well as to IS. Develop strong inter-sectoral, inter-disciplinary relationships. Conceptualize the types of relationships necessary for success in IS.
- Affirm. (2015). Affirm: Facilitation associates responding to HIV and Ebola. Retrieved Nov 30, 2015, 2015, from http://www.affirmfacilitators.org/contact.html
- Betancourt, T. S., Frounfelker, R., Mishra, T., Hussein, A., & Falzarano, R. (2015). Addressing Health Disparities in the Mental Health of Refugee Children and Adolescents Through Community-Based Participatory Research: A Study in 2 Communities. Am J Public Health(1541-0048 (Electronic)).
- Better Tools for Multi-site Research. (2013). Research Toolkit: A Toolkit for health research in partnership with practices and communities from http://researchtoolkit.org/
- Breda, K. M. L. (2015). What is old is also new: Participatory action research. Texto & Contexto-Enfermagem, 24(1), 09-10.
- Campbell, C., Campbell, M., & Blair, S. (2012). Guiding Principles: Facilitating learning, understanding and change through relationships. Melbourne.
- Constellation. (2006). Protocol for SALT Team Visits In Affirm: Facilitation associates responding to HIV and Ebola (Ed.). Surrey, UK.
- Duque-Páramo, M., Padilha, M., Sanhueza Alvarado, O., Alonso Castillo, M., Castellanos Soriano, F., & López García, K. (2013). Qualitative Nursing Research in Latin America. The Cases of Brazil, Chile, Colombia and Mexico. Beck CT, organizador. Routledge International Handbook of Qualitative Nursing Research. New York: Routledge, 478-499.
- Freire, P. (1982). Creating alternative research methods: Learning to do it by doing it. Creating knowledge: A monopoly, 29-37.
- Freire, P. (2000). Pedagogy of the oppressed: Bloomsbury Publishing. International Collaboration for Participatory Health Research. Participatory Health Research Online Course. Retrieved November 5, 2015, from http://www.icphr.org/international-course.html
- Leung, M., Yen, I., & Minkler, M. (2004). Community based participatory research: a promising approach for increasing epidemiology's relevance in the 21st century. Int, J. Epidemiol, 33(3), 0300-5771 (Print).
- Lewin, K. (1946). Action research and minority problems. Journal of social issues, 2(4), 34-46.
- Minkler, M. (2010). Linking Science and Policy Through Community-Based Participatory Research to Study and Address Health Disparities. American journal of public health, 100(S1), S81 - S87.
- Minkler, M., & Wallerstein, N. (Eds.). (2003). Community-Based Participatory Research for Health. San Francisco, CA: Jossey-Bass.
- The Examining Community-Institutional Partnerships for Prevention Research Group. (2006). Developing and Sustaining Community-Based Participatory Research Partnerships: A Skill-Building Curriculum. From www.cbprcurriculum.info
- Waterman, H., Tillen, D., Dickson, R., & De Koning, K. (2000). Action research: a systematic review and guidance for assessment Health technology assessment (Winchester, England) (Vol. 5, pp. iii-157).
- Whyte, W. (Ed.). (1991). Participatory action research: Sage Publications, Inc.
This toolkit is a product of and for the Learning Collaborative for Implementation Science in Global Brain Disorders, which was initiated and is hosted by the Center for Global Health Studies at the Fogarty International Center, National Institutes of Health (NIH), and was developed in collaboration with members of the Learning Collaborative.
Partners in the Learning Collaborative include the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the National Institute of Mental Health (NIMH), the National Institute of Neurological Disorders and Stroke (NINDS), the National Institute on Aging (NIA), the Society of Neuroscientists of Africa (SONA), and the International Brain Research Organization (IBRO).