Community Mental Health Engagement with Racially Diverse Populations

Community Mental Health Engagement with Racially Diverse Populations summarizes research on reducing mental health disparities in underserved populations through community engagement programs. It discusses the efficacy of such programs with specific populations of people of color and cultures, for specific disorders, and via specific communities. It identifies how and why community engagement works with these populations, how best to set up new community programs, the steps and stakeholders to success, and includes case studies showing successes and the challenges involved.

• Identifies how and why these programs achieve success through patient engagement
• Explores efficacy with specific ethnicities and cultures
• Discusses efficacy of programs through schools, churches, non-profits, and more
• Includes case studies with their successes and challenges
• Provides guidelines on the development and implementation of community programs

• Language: English
• Publisher: Academic Press
• Release date: May 22, 2020
• ISBN: 9780128180136

Book preview

States

Chapter 1

Introduction

Alfiee M. Breland-Noble,    The AAKOMA Center, PLLC, Arlington, VA, United States

Abstract

This introduction provides an overview of the impetus for this book, background on the significance of the topic, and a description of the contents.

Keywords

Mental health; behavioral health; mental illness; disparities; community engagement CBPR; youth; adolescents; people of color

Mental health disparities constitute a significant burden on the well-being of the population in the United States and worldwide. According to the World Health Organization, mental illness is the fifth leading cause of disability globally. For this book, I elected to focus on mental and behavioral health given the significance of the problem and its prevalence. The purpose of my book is to highlight the primary issues facing marginalized populations with a focus on people of color. Further, I highlight innovations in engaging underserved groups with real-world examples from expert patient, academic, and stakeholder partners.

Overall, I concur with the definition of mental illness (or mental health concerns) which indicates that mental illnesses are any concerns related to maladaptive patterns of behavior, thinking, or interpersonal engagement impacting individuals, groups, and communities (World Health Organization, 2020). Further, I define behavioral health concerns as those concerns not specific to mental health (e.g., depression or anxiety) with negative impacts on overall human health and well-being like alcohol or other substance-abuse problems as well as cardiovascular disease, sexual health, and obesity (to name a few) (SAMHSA, 2020).

I begin the discussion focused on US mental illness prevalence (with some additional discussion of global mental and behavioral health). I continue with a brief definition and discussion of mental health disparities for racially diverse people in the United States and globally. Finally, I address how community engagement and community-based participatory research (CBPR) are filling the gap in clinical research and care and end with a brief overview of what to expect from (and the impetus for) this book, Community Mental Health Engagement with Racially Diverse Populations.

Mental illness and behavioral health concerns are serious issues with increasing presence in the public sphere. Over the past 20 years, research has grown exponentially in the areas of identifying and describing the epidemiology of mental illness in the United States and globally (Polanczyk, Salum, Sugaya, Caye, & Rohde, 2015; Whiteford et al., 2013). Specifically, research shows that worldwide, mental illness and substance use problems account for 7.4% of DALYs, or disability adjusted life years (i.e., the years of productive life lost due to disability) with the majority of life years lost disproportionately impacting people aged 10–29 years old (Whiteford et al., 2013). The primary mental illnesses impacting adults in the United States are noted as depressive illnesses, anxiety disorders, and trauma-related illnesses (e.g., posttraumatic stress disorder) (Substance Abuse & Mental Health Services Administration, 2019). Among youth, the most prevalent illnesses are attention deficit hyperactivity disorder (ADHD), depressive illness, and anxiety disorders with approximately 14% of US youth (ages 11–17) meeting criteria for ADHD while 15% and 7% meet criteria for depressive illness and anxiety disorders respectively (Danielson et al., 2018; Substance Abuse & Mental Health Services Administration, 2019). Among young adults (persons aged 18–25), it is estimated that 20%–30% of college students meet criteria for a mental illness with 13%–40% overusing alcohol (heavy drinking) and using illicit drugs (Lipari & Jean-Francois, 2016; Lipson, Kern, Eisenberg, & Breland-Noble, 2018).

While mental illness does not discriminate, there are some significant differences in lived experience for those with mental illness between marginalized and non-marginalized groups. Given the 15% prior year prevalence of depression in all US adolescents (translating to about 1 in 7 youth), it is estimated that approximately 3.5 million youth have a diagnosable course of depressive illness (including just over 2 million facing severe impairment from depression). Further, while 14% of youth across racial groups meet criteria for a depressive illness, Asian American and multiracial youth experience depression at (statistically) significantly higher rates (16%–17%) (NIMH, 2019; Substance Abuse & Mental Health Services Administration, 2019).

Estimates of depressive illness among adults vary with estimated prevalence among all adults at 7% (with significant variability by race). For example, national estimates of depressive illness are highest for Asian American/Pacific Islander and multiracial people at 8% and 11% past year prevalence respectively (NIMH, 2020). Much less is known about racial differences in anxiety disorders though the limited research in existence seems to suggest that people of color (including youth) are less likely to report ever being diagnosed (JED Foundation & The Steve Fund, 2016). So why is any of this important? It is important because it speaks to a number of gaps in our knowledge of mental illness in racially diverse groups. Among the most pressing questions are (1) Do we have accurate estimates of the prevalence of mental illness in racially diverse groups in the United States and worldwide? (2) Are we accurately measuring the constructs of mental illness in these groups? (3) What are some of the barriers to research participation among people of color that prevent us from gaining accurate insights into their lived experience? This book was designed in part to explore each of these questions.

While there are significant but limited differences in mental illness prevalence, larger differences exist among people of color regarding clinical care for mental illness and behavioral health problems. For example, worldwide mental health care accessibility is an issue with close to 35 times more mental health professionals available in high-income countries than low-income countries (World Health Organization, 2020). Further, among all US adults, approximately 15% or 1 in 7 of those with any mental illness report receiving care in the prior year. This is in contrast to US youth among whom just 20% of those in need received care (World Health Organization, 2020). Among adults of color, African Americans, Latinx, and Asian Americans report using services at half (or less) the rate of multiracial adults, Native Americans, and Whites (Substance Abuse & Mental Health Services Administration, 2015). Among youth, children of color and socioeconomically under-resourced young people are half as likely to receive outpatient mental health care as compared to their white peers (Gudiño, Lau, Yeh, McCabe, & Hough, 2009; Marrast, Himmelstein, & Woolhandler, 2016). Further, for some groups of youth, social service system involvement is almost a prerequisite to obtaining care with data indicating that one of the largest providers of mental health services for Black and Latinx boys is the juvenile justice system (Breland-Noble, Al-Mateen, & Singh, 2016; Marrast et al., 2016).

The negative long-term outcomes associated with untreated mental illness include school and work impairment, strained interpersonal relationships, and poorer quality of life (Brook, Stimmel, Zhang, & Brook, 2008; Kelly et al., 2016; Thapar, Collishaw, Pine, & Thapar, 2012; Vitiello et al., 2011). For youth of color, need-based disparities are confounded with social repercussions. Notably, when compared with their White peers, youth of color presenting with same symptoms are more likely to be misdiagnosed with conduct or behavioral disorder and are then less likely to be referred for specialty, inpatient services (Baglivio, Wolff, Piquero, Greenwald, & Epps, 2017; Barksdale & Molock, 2009; Lee, Goodkind, & Shook, 2017). Youth of color are also more likely to experience punitive responses to their illness such as increased engagement with law enforcement and referral to juvenile detention centers versus court-mandated mental health treatment (Cunningham, Randall, Ryan, & Fleming, 2016; Dannerbeck & Jiahui, 2009; Kaba et al., 2015).

Overall, while there are slight differences in prevalence estimates of mental illness across racial ethnic groups in the United States and worldwide, the aforementioned evidence supports the conclusion that people of color experience unmet mental and behavioral health need, that youth bear a disproportionate burden of mental illness–related outcomes, and that effective mechanisms for reducing impediments to evidence-based research and care are an imperative.

Although current literature provides convincing evidence that youth of color experience unmet mental health need, researchers have only just begun to outline the nonfinancial barriers. While insurance and income have been proposed as primary factors precipitating unmet mental health, newer research indicates that even with socioeconomic variables being equal, people of color are significantly less likely to utilize mental health services (Alegria et al., 2008; Snowden, Masland, Fawley, & Wallace, 2009; Wang et al., 2005; Wu et al., 2001). The factors influencing service use disparities including stigma, perceptions of the etiology of mental illness, experiences with racism and discrimination in the health care system, faith and spirituality, and personal striving (i.e., John Henryism) (Breland-Noble et al., 2016; Breland-Noble, Wong, Childers, Hankerson, & Sotomayor, 2015). I believe that while socioeconomic issues are important, neither are they the only nor are they the primary factors at the heart of service use disparities (Breland-Noble & Weller, 2012; David-Ferdon & Kaslow, 2008). Thus, research must examine innovation in addressing malleable factors that may help reduce service use disparities and engage underserved patients.

One such approach to addressing psychosocial, malleable factors is Community Engagement. Community Engagement has been established as a core element of effective health disparities reduction. Community Engagement aligns researchers, providers, and policymakers with the patient population of interest to build (ideally) more effective approaches to research and clinical care. Primarily because it builds upon the strengths of affected communities and employs culturally relevant strategies, it has increased in use with racially and ethnically diverse populations and is well established in the literature for addressing a variety of health concerns (De las Nueces, Hacker, DiGirolamo, & Hicks, 2012). Historically (and as recently as 2020) CBPR, a social action, community-partnered approach to working with communities to build social solutions, is verified as having significant utility for the engagement, retention, and improvement in outcomes for racially diverse and underserved populations (Minkler & Wallerstein, 2008; Ortiz et al., 2020). In general, research on the topic of rigorous community engagement focuses on three key principles: (1) strategic patient and partner engagement guided by theoretical and applied frameworks; (2) culturally relevant capacity building (including training for academic and community partners in partnership building and sustainability); and (3) translation of lessons learned to policy and practice.

Given the significant stigma associated with mental illness and behavioral health problems, community-engaged research is well indicated. Essentially, it is critical to eradicate as many barriers to research and care as possible in a culturally resonant manner. To reach this goal, researchers, clinicians, and policymakers must address those factors known to be impediments to patient participation, ideally through a lens of cultural humility and respect. Therefore, they must incorporate their cultural knowledge of the communities they serve and employ their social capital on behalf of the communities of interest. Community-engaged approaches offer a way to do this authentically. By utilizing community-engaged approaches, researchers, clinicians, and policymakers can collaborate with communities using a language that feels relevant and welcoming. In doing so, investigators and clinicians help to reduce many of the self-protective walls communities erect to shield themselves from negative repercussions (i.e., helicopter research and punitive clinical care). By employing cultural capital, investigators and clinicians wishing to engage with cautious communities gain several advantages. First, community engagement gives researchers a mechanism to empower their research partners and clinical patients. Second, it frees both parties (institutions and communities) from assuming full ownership of outcomes since outcomes and goals are shared. Finally, it can provide an incubator to generate sustainable solutions and social capital.

Via this introduction, I described the foundations of community-engaged research and clinical care that support multiple stakeholders in reducing mental health disparities. Throughout this edited volume, my authors and I will also address the following critical gaps in the literature: (1) The development, implementation, and evaluation of state-of-the-art partnerships among academic researchers, providers, patients, stakeholders, and community members to support mental health disparities research and sustainable mental health promotion activities and (2) real-world examples of institutional and community partnerships that effectively demonstrate the principles of partnership for mental health disparities reduction with racially diverse populations.

Thus, this book is designed to enhance the research literature by describing methods to measurably enhance communities and reduce mental health disparities in underserved populations of youth, families, and communities. The book fills a critical gap in the literature (i.e., the community advocate and patient voice) by including within each chapter either coauthor’s or personal reflections from patient and stakeholder partners. My goal with this approach is to educate institutional researchers on enhanced mechanisms for partnering with underserved populations and for patients and stakeholders, it is teaching a strategic process by which to fund their own work and engage academics and providers in mutually beneficial ways. Finally, this book centers effective strategies and outcomes as a critical norm for health disparities reduction and in doing so supports the standardization of disseminating theoretical and practical findings from community engagement as routine for translating research to clinical care and policy.

To illustrate the core concepts and practical approaches to community engagement for mental health in diverse populations, I have asked my contributors to report both anecdotal and empirical evidence. My contributors are nationally recognized researchers, community and patient advocates sharing their personal and professional wins and losses in this work by providing illustrative examples of the overarching themes of strategic community and patient engagement.

Brief overview of contents

Chapter 2, Addressing Latinx mental health care disparities with community engagement (by Prandoni and Stein), focuses on a community–institutional partnership between El Futuro mental health clinic and Latinx community patients and stakeholders to address the mental health needs of recent immigrant Latinx families in rural North Carolina. The authors provide context for the psychosocial barriers faced by Latinx immigrant families, including limited socioeconomic resources, immigration status, racism, discrimination, low health literacy (in this specific population), and language and acculturative barriers. The authors also point to institutional factors (i.e., lack of patient-centered and coordinated care) that serve as a primary barrier to mental health clinical support for this population. Their stated approach to addressing this issue is to fill the gap by systematically integrating cultural adaptation of existing treatments with strategic community engagement.

They describe their work funded by an organization called the Patient Centered Research Outcomes Institute (PCORI for short) to develop Padres Efectivos RCT (Thomas et al., 2017), a behavioral activation–focused child mental health and education program for immigrant Latinx parents and families. In describing their approach, they carefully construct their process from developing a patient advisory council to engaging researchers involved in the development of the intervention to soliciting and incorporating patient and stakeholder feedback in PCORI dissemination efforts.

Chapter 3, Engaging parents to promote mental health among Chinese American youth, focuses on a collaboration between a university team and five community organizations invested in Asian American/Asian mental health. A university scholar coled a team comprised of university academics, patients, providers, and community health administrators in a project designed to promote mental health knowledge and eradicate stigma among Asian Americans/Asians in the local community. The team used innovative approaches, including a documentary film screening, panel discussions, workshops, and community forums to move their work forward. Through a series of regular meetings with leaders from relevant patient, stakeholder, and community groups, the team learned directly from stakeholders about relevant parenting challenges and youth mental health issues. They codeveloped a needs assessment and described the resulting community-focused campaign arising from that event called Hear Me Out. All leadership and most participants in this project were bilingual and bicultural with knowledge of and commitment to the mental health challenges and needs facing Asian/Asian American youth and families. The partnered leadership of this team demonstrates their valuing of the development of the whole child, including physical and cognitive development, as well as socio-emotional and psychological well-being. Infused into all of their work is a clear commitment to promoting mental health equality via social justice.

Chapter 4, Community-engaged research to address mental health disparities in American Indian/Alaska Native populations, is from Dr. Amy West and colleagues’ work with the American Indian community in Chicago to assess community needs and develop a community-based, culturally relevant model addressing mental health need in Indigenous populations. Over a multiyear period, Dr. West and colleagues collaborated with the local Indian Health Service (IHS Chicago) and indigenous providers, patients, and stakeholders. Their work addressed a qualitative mental health needs assessment relevant date from which they used to develop a community-based, culturally relevant system of mental health services. Academics and stakeholders each contribute sections to the chapter illustrating their approach to reducing the incidence of sexually transmitted infections and intimate partner violence. Multiple authors share their experiences in developing their partnership and implementing their projects, with an emphasis on best practices, principles, and challenges relevant for indigenous communities. The patient voice is particularly salient in this chapter as patient partners describe their experiences in working as part of the team. This team’s discussion describes the challenges and accomplishments associated with capacity building, community mobilization, forming partnerships, staff functioning and community/staff dynamics, developing advisory boards and committees, honoring and modeling community values, addressing community politics, managing partnerships between community and noncommunity stakeholders, and evaluation and research process (West,