Community-based Participatory Research Team Research Articles

Involving People With Mental Illness in Research Important to Addressing Social Determinants of Health

Back to table of contents Previous article Next article Clinical & ResearchFull AccessInvolving People With Mental Illness in Research Important to Addressing Social Determinants of HealthPatrick Corrigan, Psy.D.Patrick CorriganSearch for more papers by this author, Psy.D.Published Online:28 Jan 2022https://doi.org/10.1176/appi.pn.2022.2.32AbstractPeople with serious mental illness have shown they can be vital members of a community-based participatory research team.iStock/AramyanPeople with serious mental illness die 10 to 20 years earlier than people of the same age—largely because of social determinants of health and mental health that undermine health and wellness.For many people with serious mental illness, common social determinants are poverty, lack of access to quality health and mental health care, stigma surrounding mental illness and its treatment, discrimination, high rates of smoking and alcohol and drug use, and poor diet and exercise patterns. People of color have an especially hard time accessing care—and care that is culturally sensitive.Interventions are beginning to emerge to overcome these barriers to health. They include medical practices that decrease the side effects of psychiatric treatments, psychoeducation to teach people how to manage health and wellness, instrumental and interpersonal supports that assist people to navigate their community, and shared decision-making that assures individuals have ultimate control over their health and wellness plan.Research is essential for the development and evaluation of strategies to address social determinants of health and mental health as a public health imperative at all levels of government. Community-based participatory research (CBPR) is the first principle: Research meant to test concepts and interventions specific to a community needs to be steeped in that community. This does not mean people are subjects of the research but rather partners in all facets of its conduct. Investigators and members of each community as partners define hypotheses, methods, analyses, and summaries of the research and development effort. CBPR is especially notable “coming into” and “going out of” a targeted research project. “Coming in,” members of the community have fundamental insights about what needs to be examined to make sense of their problems and ways to impact them; “going out” is ownership. Researchers on the CBPR team often go on to the next research project when data are analyzed and reports written up. Community members are likely to make use of the insights to meaningfully impact their neighborhood over time. The final plan is not something developed in the ivory tower by researchers who differ from the community, but by the community itself. This kind of ownership gives credibility.Who is community? They are people with shared experience relevant to health and wellness. Typically, CBPR focuses on diversity, especially in terms of ethnicity and religious heritage. Public health investigators also may seek to include additional communities of concern including women, LGBTQ individuals, veterans, and rural residents.People with serious mental illness are a community worthy of CBPR. They have shared experience and similar needs vis-à-vis the health care system. Some might ask whether people with serious mental illness can capably participate in CBPR given their social and cognitive disabilities. The answer is yes, they can be vital members of the CBPR team, especially when team members provide reasonable accommodations.This is meant to be a clarion call for psychiatrists and health care professionals of all kinds. Psychiatrists need to be mindful of the many ways they can help people with mental health challenges address their physical health needs, both within their own practice and in partnership with other health care professionals. ■Patrick Corrigan, Psy.D., is a distinguished professor of psychology at the Illinois Institute of Technology and the co-editor of Health and Wellness in People Living With Serious Mental Illness from APA Publishing. Members may purchase the book at a discount here. ISSUES NewArchived

Implementing community-based participatory research among African Americans with serious and persistent mental illness: A qualitative study

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.

Identifying homeless population needs in the Emergency Department using Community-Based Participatory Research

BackgroundAnnually 1.5 million Americans face housing insecurity, and compared to their domiciled counterparts are three times more likely to utilize the Emergency Department (ED). Community Based Participatory Research (CBPR) methods have been employed in underserved populations, but use in the ED has been limited. We employed CBPR in an urban American hospital with a primary goal of improved linkage to care, reduced ED recidivism, and improved homeless health care.MethodsA needs analysis was performed using semi-structured individual interviews with participants experiencing homelessness as well as with stakeholders. Results were analyzed using principles of grounded theory. At the end of the interviews, respondents were invited to join the “CBPR team”. At CBPR team meetings, results from interviews were expounded upon and discussions on intervention development were conducted.ResultsTwenty-five stakeholders were interviewed including people experiencing housing insecurity, ED staff, inpatient staff, and community shelters and services. Three themes emerged from the interviews. First, the homeless population lack access to basic needs, thus management of medical needs must be managed alongside social ones. Second, specific challenges to address homeless needs in the ED include episodic care, inability to recognize housing insecurity, timely involvement of ancillary staff, and provider attitudes towards homeless patients affecting quality of care. Lastly, improved discharge planning and communication with outside resources is essential to improving homeless health and decreasing ED overutilization. A limitation of results is difficulty for participants experiencing homelessness to commit to regular CBPR meetings, as well as possible bias towards social networks influencing included stakeholders.ConclusionCBPR is a promising approach to address gaps in homeless health care as it provides a comprehensive view incorporating various critical perspectives. Key ED-based interventions addressing recidivism include improved identification of housing insecurity, reinforced relationships between ED and community resources, and better discharge planning.

Knowledge, Attitudes, and Behaviors of Viral Hepatitis Among Recent African Immigrants in the United States: A Community Based Participatory Research Qualitative Study.

Background: In the United States, hepatocellular carcinoma is the ninth leading cause of cancer mortality. Hepatocellular carcinoma disproportionately affects individuals of African ancestry with the rates being higher amongst individuals of foreign-born African ancestry. This study explored knowledge, attitudes, and behaviors toward viral hepatitis transmission, screening, and vaccination among recent African immigrants in Minnesota and identify ways to improve early detection and screening methods.Methods: A community based participatory research (CBPR) team with minority researchers and community members sought to gain insight on persons of African Ancestry knowledge, attitudes, and behaviors related to viral hepatitis by conducting a qualitative research study. The CBPR team developed a focus group moderator's guide with semi-structured questions related to transmission, screening, and vaccination of viral hepatitis. We conducted seven focus groups using bilingual, bicultural moderators with participants from local Ethiopian, Liberian and Kenyan communities from August 10th, 2014 to October 11th, 2014. Focus groups were audio recorded and transcribed. The CBPR team categorized the data into themes and subthemes with consensus using traditional content analysis.Results: Community partners recruited 63 participants with a majority identifying as male (51%). Participants lacked knowledge of viral hepatitis screening, vaccination, and treatment. Participants were aware of some behaviors that increased risk of acquisition of hepatitis. Participants endorsed a strategy of developing and delivering educational materials for African immigrants. Moreover, access to care and cultural awareness were mentioned as pivotal for prevention and treatment of viral hepatitis.Conclusions: Findings from this pilot study provide insight on areas of research focus. Having a research team consisting of members from the community helped to increase trust and foster an understanding of shared community values. Information from this study provides evidence to support the development culturally appropriate strategies to address disparities in viral hepatitis in these communities.

Diabetes and Health Friendly Food Pantry Shelf Design and Implementation (P04-056-19)

ObjectivesThe objective of this pilot study was to develop and examine the feasibility of implementing the “Most Diabetes and Health Friendly Shelf” initiative at an urban choice food pantry. MethodsThe “Most Diabetes and Health Friendly Shelf” initiative was developed using grocery store marketing techniques and community based participatory research (CBPR). The CBPR team designed marketing materials and food categorization criteria based on a literature review and current dietary recommendations. The program was designed to assist food pantry users in identifying healthy foods. We highlighted healthier food options within each pantry section using grocery store marketing techniques: priming, colored labeling, framing, and placement. Clients choose items from the highlighted intervention shelf or general shelf. The program was pilot tested in a choice pantry in Cincinnati, OH and usage was tracked for 6 months as part of a longitudinal observational study. The number of items on the intervention shelf versus general shelf was counted before and after pantry sessions. The total number items available, number items taken, and percentage items taken was tracked, calculated, then compared by section and shelf. ResultsClients chose a higher total number of items from the intervention shelf (1987 items) compared to the general shelf (1863 items). The intervention shelf had a higher percentage of items taken per month (32–47%) compared to the general shelf (25–45%); however the percentage items taken from the general shelf increased overtime. There was no clear pattern of choices shown across food sections, suggesting factors other than nutrition impacted food choices. CBPR was a feasible mechanism to develop ideas and create an affordable, realistic, and attractive intervention. Despite this, results may be improved and better sustained with an individual assigned to training and marketing the intervention. ConclusionsFindings suggested the initiative may be a feasible intervention to implement into a choice food pantry setting. Food pantry clients chose a higher percentage of diabetes-friendly foods, however further research is needed on identifying further outside factors that influence food choices within this population. Funding SourcesThe Center for Clinical and Translational Science and Training, Partnership Development Grant.

Benefits and risks of suicide disclosure

RationaleIndividuals who attempt suicide are often subject to stigma and may feel ashamed to talk openly about their experiences with suicide. However, failure to disclose could interfere with care-seeking, increase distress, and limit social support. While research on other concealable stigmatized conditions (e.g. mental illness and HIV) has identified the complexities of disclosure decisions, little is known about disclosure for suicide attempt survivors. ObjectiveGiven the lack of research in this area, this study aimed to explore suicide attempt survivor perspectives on risks and benefits of suicide disclosure. MethodsAcademic researchers partnered with a community-based participatory research team to develop and conduct the research. The team conducted group and individual interviews with U.S. suicide attempt survivors (n = 40), using thematic analysis to code responses into themes for benefits (n = 12) and risks/barriers (n = 10) of disclosing. ResultsParticipants collectively identified how disclosure could benefit them (n = 9) through enhanced social support, strengthening of personal relationships, access to treatment, and opportunities for self-reflection. Participants described how disclosure could benefit others (n = 3) by reducing stigma, allowing attempt survivors to help peers who are currently struggling with suicidal ideation, and by providing psychoeducation on suicidality. Participants also described ways that disclosure could put them at risk (n = 8), in terms of stigma, unsupportive reactions, unwanted treatment, or loss of privacy. Participants were concerned that disclosure could put confidants at risk (n = 2) of being overburdened or triggered. ConclusionWhile the study methodology did not allow for an exploration of which benefits or risks may be most salient for suicide attempt survivors, this study lays groundwork for future research on disclosure of suicidal thoughts and behaviors. Furthermore, these results can be used by service providers to support suicide attempt survivors in strategic disclosure decisions that maximize benefits and reduce risks.

Assessing the Impacts and Ripple Effects of a Community-University Partnership: A Retrospective Roadmap.

Each community-based participatory research (CBPR) partnership may incur "ripple effects" - impacts that happen outside the scope of planned projects. We used brainstorming and interviewing to create a roadmap that incorporated input from nine CBPR participants and five community/academic partners to retrospectively assess the ripple effects observed after five years of participatory research in one urban community. The resulting roadmap reflected a range of community impacts which we then divided into four key areas: impacts in the community (i.e., strategies, programs, and policies implemented by community partners), impacts on the CBPR team, impacts on individuals (participants and community members), and contributions to the field and the university. Our approach focused on observing what happened in the community that was directly or indirectly related to our partnership, process, products, and relationships. Much of the impact we observed reflected the synergy of sharing our research and community voice with responsive partners and stakeholders.

Understanding Occupational Identities and Roles on a Community-Based Participatory Research Team

Abstract Date Presented 4/20/2018 This ethnography explored the collaborative process of a community-based participatory research (CBPR) team, which was shaped by team members’ various occupational identities. Dual identities, although at times challenging to navigate, may serve as a bridge, facilitating collaboration in CBPR teams. Primary Author and Speaker: Amber Angell Additional Authors and Speakers: Alli Ferlin, Christina Papadimitriou, Susan Magasi Contributing Authors: Judy Panko Reis, Tom Wilson, Jennifer Thomas

Evaluating an Indigenous health curriculum for diabetes prevention: engaging the community through talking circles and knowledge translation of results.

Kahnawà:ke is a Kanien'kehá:ka (Mohawk) community in Quebec, Canada. In 1997, the community-controlled Kateri Memorial Hospital Centre in partnership with the Kahnawake Education Center, and the Kahnawake Schools Diabetes Prevention Project (KSDPP) developed an elementary school diabetes prevention health education program, aimed to increase knowledge of Type 2 diabetes, healthy eating and active lifestyles. Long-term goals for KSDPP community and school interventions are to decrease obesity and diabetes. To evaluate the Kateri Memorial Hospital Centre Health Education Program for Diabetes Prevention (HEP) and use key principles of knowledge translation to promote understanding of results to upgrade HEP content and improve delivery. A KSDPP community-based participatory research team used mixed methods for evaluation, combining a cross-sectional survey for 23 teachers with interviews of two elementary school principals and three culturally appropriate Indigenous talking circles with HEP authors, teachers and parents. Questionnaire results were presented as descriptive statistics. The thematic textual analysis identified emerging themes from talking circles and interviews. Facilitators of HEP delivery were an acknowledgement of its importance; appreciation of prepared lesson plans for teachers; and KSDPP's strong community presence. Barriers included reduced administrative support and instructional time due to competing academic demands; the need for increased Kanien'kehá:ka cultural content; and outdated resource materials. Recommendations included increasing teacher training, Kanien'kehá:ka cultural content and administrative support. Community researchers undertook detailed knowledge translation activities of facilitators, barriers and recommendations with hospital and education centre administrators and Kahnawà:ke community to maximize uptake of findings before external dissemination of results.

Making Sense of the Public Stigma of Suicide.

Research suggests that stigma is a barrier to care for individuals who have attempted suicide. While extensive work has examined the stigma of mental illness, less research has focused on the public stigma of suicide. Existing measures of suicide stigma have lacked a conceptual foundation or have failed to include the perspectives of suicide stakeholders. This research draws on previous qualitative research with suicide stakeholders to create a measure of public suicide stigma. This study used a community-based participatory research (CBPR) approach to define a factor structure for suicide stigma. The CBPR team used focus groups to generate items for each component of stigma (stereotypes, prejudice, and discrimination). Two online surveys (N = 372; N = 243) asked members of the public to rate candidate items for stereotypes, prejudice, and discrimination. Analyses revealed three factors for stereotypes (weak, crazy, distressed), two factors for prejudice (fear/distrust, anger), and three for discrimination (avoidance, disdain, coercion). Results should be confirmed in other samples and further evidence gathered on convergent, divergent, and discriminant validity. The resulting 44-item Suicide Stigma Assessment Scale (SSAS) can be further validated and used to measure efficacy of stigma change interventions.

Using Peer Navigators to Address the Integrated Health Care Needs of Homeless African Americans With Serious Mental Illness.

The study examined the impact of a peer navigator program (PNP) developed by a community-based participatory research team and used with a group of African Americans with serious mental illness who were homeless. Sixty-seven research participants were randomly assigned to receive PNP or treatment as usual (control) for one year. Data on general health and mental health, recovery, and quality of life were collected at baseline and at four, eight, and 12 months. Findings from group × trial analyses of variance of omnibus measures of the four constructs showed significant impact over the year for participants in PNP compared with those in the control group, with analyses showing small to moderate effect sizes: general health status (η2=.24), psychological experience of physical health (η2=.42), recovery (η2=.36), and quality of life (η2=.14). These differences emerged even though both groups showed significant reductions in homelessness and increases in insurance coverage. Implications for improving in-the-field health care for this population are discussed. Whether these results occurred because navigators were peers per se needs to be examined in future research.

A Social Ecological and Community-Engaged Perspective for Addressing Health Disparities Among Marshallese in Arkansas

Background: This article describes the case study of a community-based participatory research team that has used a social ecological approach to address significant health disparities in type 2 diabetes among Marshallese living in Arkansas. Methods: A case study approach is used to analyze the activities of the community-based participatory research partnership using a social ecological framework to describe how multiple factors across the social ecology are being addressed simultaneously. Results: In collaboration with the local Marshallese community and local organizations, the interprofessional team implemented interventions at each of the social ecological levels. Conclusion: Efforts to address health disparities should include interventions at multiple social ecological levels. Further, engaging diverse community partners contributes to success by leveraging the contextual and cultural knowledge, practices, and resources of all individuals and organizations involved. Finally, combining a social ecological perspective with a community-based participatory research approach contributes to sustainability of the interventions by engaging the broader community and ensuring the interventions reflect an understanding of and appreciation for the community’s culture.

Community-based participatory research examining the health care needs of African Americans who are homeless with mental illness.

African Americans with mental illness who are homeless experience significant health risks and illnesses leading to high mortality and morbidity rates. A community-based participatory research (CBPR) team conducted a qualitative study to begin to describe these problems. Results from focus groups and key informant interviews of 42 individuals yielded 98 themes which were sorted into three categories: problems, solutions, and peer navigators. Results included a review of the problems and solutions which the community or people might adopt. An additional goal was to understand and develop impact of peer navigators for addressing health problems in this group. Results yielded a list of values in hiring peer navigators as well as skills and resources they might need to successfully do their job. Findings from the study are currently being used by the CBPR team to develop a peer navigator program for this community.

Barriers and opportunities: a community-based participatory research study of health beliefs related to diabetes in a US Marshallese community.

This study investigates the beliefs and perceptions related to type 2 diabetes that influence diabetes self-management behaviors for Marshallese in the United States. Using the health belief model as a theoretical framework, the researchers seek to better understand the underlying beliefs that motivate or impede diabetes self-management behaviors. The community-based participatory research (CBPR) collaborative engaged in 14 months of preliminary fieldwork and conducted 2 tiers of focus groups for this project as part of the long-term commitment to reducing health inequalities in the Marshallese community. The CBPR team conducted an initial round of 2 exploratory focus groups (n = 15). Based on the knowledge gained, researchers held a second round of focus groups (n = 13) on health beliefs regarding diabetes. All participants were Marshallese, aged 18 years and older, and included men and women. Participants either had a diagnosis of diabetes or were a caretaker of someone with diabetes. The findings elucidate the structural and nonstructural barriers to successful diabetes self-management for Marshallese in the United States. Barriers include eating differently from the rest of the family, social stigma of diabetes, transportation, cost, lack of access to health care, and cultural and language barriers. While there are significant barriers to improving diabetes self-management, there are also areas of opportunity, including family and peer reinforcement to encourage proper diabetes management behaviors and a growing community desire to lift the stigma of diabetes. The CBPR team offers recommendations to make diabetes management interventions more culturally appropriate and effective for the Marshallese population.

Improving maternity care in the Dominican Republic: a pilot study of a community-based participatory research action plan by an international healthcare team.

This article is a report of the process and results of a feasibility pilot study to improve the quality of maternity care in a sample of 31 women and their newborns delivering in a public, tertiary hospital in the Dominican Republic. The pilot study was the first "action step" taken as a result of a formative, community-based participatory research (CBPR) study conducted between 2008 and 2010 by an interdisciplinary, international partnership of U.S. academic researchers, Dominican medical/nursing personnel, and Dominican community health workers. Health personnel and community health workers separately identified indicators most important to measure quality of antepartum maternity care: laboratory and diagnostic studies and respectful, interpersonal communication. At the midpoint and the completion of data collection, the CBPR team evaluated the change in quality indicators to assess improvement in care. The pilot study supports the idea that joint engagement of community health workers, health personnel, and academic researchers with data creation and patient monitoring is motivating for all to continue to improve services in the cultural context of the Dominican Republic.

A Recovery-Oriented Alternative to Hospital Emergency Departments for Persons in Emotional Distress: “The Living Room”

Persons with severe mental illness experience episodic crises, resulting in frequent visits to hospital emergency departments (EDs). EDs, however, are not the most effective treatment environments for these individuals who might better be served elsewhere in an environment based on recovery-oriented framework. The purpose of this study is to describe the lived experience of guests (persons in emotional distress) and staff (counselors, psychiatric nurses, and peer counselors) of a community, recovery-oriented, alternative crisis intervention environment—The Living Room (TLR). The total sample is comprised of 18 participants. An existential phenomenological approach was used for this qualitative, descriptive, study. Through non-directive in-depth interviews, participants were asked to describe what stands out to them about The Living Room. Interviews were audio-recorded, transcribed verbatim, and systematically analyzed using descriptive phenomenological methods of analysis by an interdisciplinary and community-based participatory research team. Participants’ experiences in hospital EDs and inpatient psychiatric units contextualized the phenomenological experience of TLR environment. The final thematic structure of the experience of TLR included the following predominant themes: A Safe Harbor, At Home with Uncomfortable Feelings, and It's a Helping, No Judging Zone. Findings from this qualitative study of a recovery-based alternative to hospital EDs for persons in emotional distress are supported by anecdotal and empirical evidence that suggests that non-clinical care settings are perceived as helpful and positive.

Glaucoma Medication Adherence among African Americans

To elucidate barriers and facilitators related to glaucoma medication adherence among African Americans (AA) with glaucoma and to elicit input from a community-based participatory research team to guide the development of a culturally informed health promotion program for improving glaucoma medication adherence among AAs. The nominal group technique (NGT), a highly structured focus group methodology, was implemented with 12 separate groups of AA patients with glaucoma (N = 89) to identify barriers and facilitators related to glaucoma medication usage. Participant rank-ordering votes were summed across groups and categorized into themes. Next, an individually and culturally targeted health promotion program promoting appropriate medication adherence was developed based on focus group results and input from a community-based participatory research team. The top five barriers included problems with forgetfulness, side effects, cost/affordability, eyedrop administration, and the eyedrop schedule. The most salient top five facilitators were fear or thoughts about the consequences of not taking eyedrops; use of memory aids, cues, or strategies; maintaining a regular routine or schedule for eyedrop administration; ability to afford eyedrops; and keeping eyedrops in the same area. The resulting health promotion program was based on a multicomponent empowerment framework that included glaucoma education, motivational interviewing, and problem-solving training to improve glaucoma medication adherence. Barriers and facilitators related to glaucoma medication adherence among AAs are multifactorial. Based on the NGT themes and input from the community-based participatory research team, a culturally informed health promotion program was designed and holds great promise for improving medication adherence among this vulnerable population.

Community-based participatory research projects and policy engagement to protect environmental health on St Lawrence Island, Alaska

ObjectivesThis article synthesizes discussion of collaborative research results, interventions and policy engagement for St Lawrence Island (SLI), Alaska, during the years 2000–2012.MethodsAs part of on-going community-based participatory research (CBPR) studies on SLI, 5 discrete exposure-assessment projects were conducted: (a) a biomonitoring study of human blood serum; (b–d) 3 investigations of levels of contaminants in environmental media at an abandoned military site at Northeast Cape – using sediment cores and plants, semi-permeable membrane devices and blackfish, respectively; and (e) a study of traditional foods.ResultsBlood serum in residents of SLI showed elevated levels of polychlorinated biphenyls (PCBs) with higher levels among those exposed to the military site at Northeast Cape, an important traditional subsistence-use area. Environmental studies at the military site demonstrated that the site is a continuing source of PCBs to a major watershed, and that clean-up operations at the military site generated PCB-contaminated dust on plants in the region. Important traditional foods eaten by the people of SLI showed elevated concentrations of PCBs, which are primarily derived from the long-range transport of persistent pollutants that are transported by atmospheric and marine currents from more southerly latitudes to the north.InterventionsAn important task for all CBPR projects is to conduct intervention strategies as needed in response to research results. Because of the findings of the CBPR projects on SLI, the CBPR team and the people of the Island are actively engaging in interventions to ensure cleanup of the formerly used military sites; reform chemicals policy on a national level; and eliminate persistent pollutants internationally. The goal is to make the Island and other northern/Arctic communities safe for themselves and future generations.ConclusionsAs part of the CBPR projects conducted from 2000 to 2012, a series of exposure assessments demonstrate that the leaders of SLI have reason to be concerned about the health of people due to the presence of carcinogenic chemicals as measured in biomonitoring and environmental samples and important traditional foods.