Real World Alliance between Advocacy and Research
J. Konadu Fokuo, Lisa Smusz, Khatera Aslami, and Patrick Corrigan
As anti-stigma advocates and researchers, the question is: Which programs work best to change stigma? In recent years, funding agencies, researchers, and national organizations have had a renewed focus on anti-stigma research approaches that recognize the importance of collaboration between researchers and stakeholders. Such integrative approaches translate into measurable changes in practice, perspective, and policy which can in turn impact social, political, and economic systems. As a result, models of community based participatory research (CBPR), in which communities are actively involved in the research process, have become essential to national stigma reduction and prevention research in mental health and public health research (e.g., HIV/AIDS). CBPR attempts “to break down the distinction between the researchers and the researched, the subjects and objects of knowledge production by the participation of the people-for-themselves in the process of gaining and creating knowledge. In the process, research is seen not only as a process of creating knowledge, but simultaneously, as education and development of consciousness, and of mobilization for action” (Gaventa, 1988).
How do CBPR research teams for stigma change operate? All team members are responsible for every activity related to the stigma change program. This requires community stakeholders and researchers to engage in all aspects of project planning, implementation, and evaluation. These stakeholders may include “consumers” (individuals using mental health services), “ex-patients” (no longer needing services and seeking to distance themselves from the mental health system), “survivors” (individuals who endured their treatment and overcame their illness), family members of people with mental illness, service providers, and even employers of anti-stigma employment programs (Corrigan & Shapiro, 2010). In order to foster true collaboration, there must be mutual appreciation for each partner’s knowledge and skill at every level. This requires many CBPR team meetings for collaborators to identify knowledge interest, issue selection, problem definition, research methods selection, interpretation of results, and practical uses of findings (Horowitz, Robinson, & Seifer, 2009). CBPR has potential challenges such as creating a traditional research timeline, cross-cultural mistrust between partners, objective and perspective alignment, and power and resources sharing (Horowitz, Robinson, & Seifer, 2009). However, these hurdles can be smoothly minimized with the use of clearly defined goals, integrity, and humility (Wallerstein & Duran, 2006).
The Social Inclusion program by Peers Envisioning and Engaging in Recovery Services (PEERS) is a great example of the direction advocacy work and research is moving with regards to challenging mental health stigma. In partnership with the National Institute of Mental Health-funded National Consortium on Stigma and Empowerment (NCSE) , PEERS is currently in the planning year for a county-wide Social Inclusion campaign using a CBPR approach to be implemented in July 2011. PEERS is a consumer-run nonprofit organization that advocates for mental health consumers on every level of the mental health system and promotes collaboration among consumers, family members, and providers. In alliance with the NCSE’s collection of researchers at Illinois Institute of Technology, Yale University, the University of Pennsylvania, Rutgers University, Temple University, the University of Wisconsin, Illinois State University, and the University of Chicago, the Social Inclusion campaign will target “self-stigma” through strength-based trainings and education about wellness and recovery. It will also address public stigma through education and changing media messages of people with mental illness. Through education and outreach, the campaign aims to focus on interaction with people who hold the power to change discriminatory practices. In the first year (July 2011–June 2012), the campaign will concentrate on addressing stigma and discrimination within the African American community and among those who hold positions of power in the housing sector. Special care will be taken to ensure that media outreach and messaging will be done in a culturally responsive manner.
In order to effect change, more programs such as the PEERS’ Social Inclusion campaign must occur. There needs to be collaboration between academia and study communities to enable oppressed groups and people of lower socio-economic classes to acquire sufficient creative and transforming leverage as expressed in specific projects, acts, and struggles (Fals-Borda, 1991). For true stigma change to occur, the method of research should mirror the change we desire. How can researchers and consumers advocate for policy and programs when there is a lack of partnership? As stigma change advocates, it is our role to promote a co-learning and empowering process that abates social inequalities and encourages the development and practice of research approaches that would diminish negative stigmatizing attitudes and behaviors.