Abstract
Community-based participatory research (CBPR) is an approach that involves community members in research, not as research participants, but as partners. However, few studies have examined CBPR projects conducted among African Americans with serious and persistent mental illness (SPMI). This article focuses specifically on the Inspiring Change (IC) model, which includes a leadership trio comprised of an academic researcher, health service provider and an African American with lived experience of SPMI. Our purpose is to investigate how the IC model shapes not only how research is conducted but how research is understood and experienced by the community. We achieve this purpose by (1) describing an innovative CBPR model and pilot projects that involved African Americans with SPMI in all stages of the research project; and (2) presenting findings from qualitative interviews conducted with CBPR team members about strengths, challenges and leadership particular to this model of CBPR, an area rarely explored in CBPR literature.
 With the guidance of an advisory board and the manualised IC curriculum, two CBPR teams initiated and conducted nine-month long research projects focusing on health disparities for African Americans with SPMI. Members of the two CBPR teams (n = 13), which included individuals with lived experience, service providers and researchers, completed qualitative interviews. Benefits of CBPR projects included opportunities to learn, a sense of purpose in helping others and increased trust of research participants. Challenges pertained to disorganisation of leadership, lack of transparency with compensation, time pressures and interpersonal conflicts. These challenges highlight the importance of preparing and supporting those from both academic and lived experience backgrounds in skills necessary to thrive in leadership roles for CBPR projects.
Highlights
Individuals with a serious and persistent mental illness (SPMI) die about 15 years earlier than same age peers (Martens 2001; WHO 2003) and have a higher risk of chronic physical disabilities, including heart disease (Osborn, Nazareth & King 2006), diabetes (Dixon et al 2000), stroke (Hansen, Maciejewski, Yu-Isenberg & Farley 2012), and other illnesses (Sokal et al 2004)
Our purpose is to investigate how the Inspiring Change (IC) model shapes how research is conducted but how research is understood and experienced by the community. We achieve this purpose by (1) describing an innovative Community-based participatory research (CBPR) model and pilot projects that involved African Americans with SPMI in all stages of the research project; and (2) presenting findings from qualitative interviews conducted with CBPR team members about strengths, challenges and leadership particular to this model of CBPR, an area rarely explored in CBPR literature
We achieve this purpose by (1) describing an innovative CBPR model and pilot project that involved African Americans with SPMI in all stages of the research project, and (2) presenting findings from qualitative interviews conducted with CBPR team members about strengths, challenges and leadership issues particular to this model of CBPR, an area rarely explored in CBPR literature
Summary
Individuals with a serious and persistent mental illness (SPMI) die about 15 years earlier than same age peers (Martens 2001; WHO 2003) and have a higher risk of chronic physical disabilities, including heart disease (Osborn, Nazareth & King 2006), diabetes (Dixon et al 2000), stroke (Hansen, Maciejewski, Yu-Isenberg & Farley 2012), and other illnesses (Sokal et al 2004). The project we describe here is an effort to engage African Americans with SPMI in solutions to these health disparities through community-based participatory research (CBPR). The first (LS), second (SB) and last author (PC), research associate, lived experience co-investigator and principal investigator respectively, applied for and received funding through Eugene Washington Patient-Centered Outcomes Research Institute (PCORI) Engagement Award (see Figure 1 for the sequence of project milestones). They established a Training and Development Advisory Board (TDAB) to develop the curriculum and help guide implementation of CBPR. The IC curriculum used this terminology throughout; CBPR team members with SPMI are described as having ‘lived experience’ in this article
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