- 1 Project CONNECT: Leveraging Implementation Science to Increase Access to Trauma Treatment for Individuals with Co-Occurring Chronic Conditions
- 2 Novel implementation of integrated electronic health record data collection of social determinants of health and home environmental exposures in a tertiary rhinology clinic
- 3 Preparing a Food Is Medicine intervention to promote healthy eating and blood pressure control in hypertensive Black women with obesity
- 4 Social Workers and Community Health Workers in Primary Care: A RE-AIM Impact Study
- 5 INtegrating IllneSs Perceptions to Improve the PatienT-Provider Encounter for CKD (INSITE-CKD): A Pilot Study
- 6 Investigating the Underground Cigarette Market in Chicago’s Chinatown to Address Smoking-related Health Disparities
- 7 Legal Care for Caregivers to Violently-Injured Adolescents and Young Adults
- 8 Pilot Randomized Control Trial of a Co-Designed Trauma-Focused Intervention with Black Women Experiencing Homelessness in Chicago
- 9 BrotherlyACT: Developing a Novel Equity-Focused Coping- and Life-Skills Digital Tool for Sustained Violence Prevention Among Young Black Males in Chicago
- 10 Neurologic outcomes and health care barriers in patients with multiple sclerosis in Chicago
- 11 Disparities in Home Nursing for Children with Invasive Mechanical Ventilation: Identifying National Trends and Piloting a Parent-to-Parent Intervention in Chicago
- 12 Development of a Culturally Tailored Resilience-Building Intervention to Facilitate Advance Care Planning Discussions Between Chinese American Patients and Their Family Caregivers
- 13 HEAL (Health, Equity, and Longevity)- Development of a Gendered Race Related Stress Intervention
Project CONNECT: Leveraging Implementation Science to Increase Access to Trauma Treatment for Individuals with Co-Occurring Chronic Conditions
Assistant Professor, Rush University Medical Center
Trauma, such as community violence, is an enduring public health challenge in Chicagoland. Trauma increases risk for mental health conditions, such as posttraumatic stress disorder (PTSD), and chronic physical health conditions, such as hypertension. Pathways linking trauma with poor chronic conditions has highlighted how Chicago residents’ PTSD-related responses, including cognitive difficulties (e.g., increased perceived risk of being targeted, chronic stress, and increased hypervigilance) and behavioral disturbances (e.g., increased isolation) interplays with community-level constraints (e.g., social and healthcare environment environment) that ultimately impacts their health status. Thus, the treatment of trauma and PTSD can have big impacts on improvements in health, functioning, and chronic conditions. It is well known that evidence-based treatment approaches for trauma and PTSD lead to clinically significant reductions for multiple comorbid chronic conditions, including PTSD, depression, and chronic pain. These treatment approaches generally take approximately 3-months to complete. Innovative approaches, termed massed treatments, involve daily sessions of treatment across 1-3 weeks, which allows individuals to complete a full course of treatment in a matter of days. Massed treatments for PTSD also lead to major reductions in PTSD symptoms, functioning, and chronic conditions. While effective approaches to treating trauma exist, few trauma survivors actually receive such treatment. In fact, the majority of Chicagoland residents reported they had never even discussed their experiences of trauma with a healthcare provider (73%). It remains unknown whether massed treatment formats can be feasibly delivered in non-academic settings and what strategies may be successful to facilitate their implementation and uptake. To address these gaps, the present study will examine implementation strategies associated with implementing massed treatment for PTSD for trauma survivors with chronic conditions at a local non-specialty clinic providing community and mental health services. Guided by the Exploration, Preparation, Implementation and Sustainment (EPIS) implementation science framework, we will use mixed methods to determine the needs, facilitators, and barriers related to implementing massed treatment for PTSD in a non-specialty clinic. We will also evaluate the feasibility and acceptability of implementing massed treatments from the perspectives of numerous stakeholders, including community advisory board (n =50) as well as leadership and clinical staff (n = 20). This project will support this investigator’s long-term goal to become an independent implementation scientist focused on increasing the utilization of effective interventions within non-specialty settings for trauma survivors. Data from this project will serve as the foundation for a NIMHD Mentored Patient-Oriented Research Career Development Award (K23) to refine, implement, and evaluate the impact of massed PTSD interventions and to develop expertise using implementation science research methods.
Clinic: Social Work & Community Health Psychotherapy Clinic (SWaCH)
Assistant Professor, University of Illinois Chicago
Allergic rhinitis (AR) and chronic rhinosinusitis (CRS) are the most common sinonasal conditions and pose a significant cost burden. Disease control is often more closely tied to determinants of health (DOHs; e.g., social and physical environment) than to medical care. Studies to date, however, have utilized existing databases and thus are characterized by limited or incomplete social DOH and individual-level physical environmental data, with physical environmental data often extrapolated from community-level data. While people spend much of their time at home, studies assessing home environmental factors in particular limited. Further, there is overall a limited representation of adults with lower socioeconomic status and racial/ethnic minority populations. The Protocol for Responding to and Assessing Patients’ Assets, Risks, and Experiences (PRAPARE®) is a standardized evidence-based and stakeholder-driven tool that can capture social DOH data at the patient level. It does not, however, collect individual-level home environmental data. Our institution utilizes the Epic electronic health record, in which a PRAPARE® template already exists but has yet to be implemented, and serves an inner-city racially/ethnically diverse population with more than 70 percent of patients from minority and underserved groups. In this proposal, we seek to use stakeholder input to develop a survey to collect detailed individual-level home environmental data and to determine and execute the implementation process for conducting this survey and PRAPARE® (DOH tools) in a tertiary rhinology clinic. The survey and implementation process piloted in this proposal will serve as the foundation for the development of a prospective institutional database with high minority and underserved patient representation and containing detailed social DOH, home environment, and sinonasal disease control data, which is entirely novel. This proposal will form the basis for future external funding proposals focused on testing it in a larger sample with the eventual goal of having it a routine part of standard workflow. The database itself can also be used to prospectively explore the relationships between DOHs and sinonasal disease control, which is a knowledge gap. Our long-term goal is to identify DOHs that are sources of health disparities and develop targeted interventions to address them, ultimately to improve sinonasal disease care and outcomes.
Clinic: UI Health
Preparing a Food Is Medicine intervention to promote healthy eating and blood pressure control in hypertensive Black women with obesity
Assistant Professor, University of Illinois Chicago
Hypertension and obesity are both major risk factors for cardiovascular disease (CVD), a leading cause of death for Black women in the United States. Obesity and hypertension can be prevented or controlled with diet for Black populations, as evidenced in the DASH, ENCORE, and PREDIMED trials. However, lack of access to affordable healthy foods in the neighborhood environment contributes to poor diet quality. In Chicago, obesogenic food environments in segregated Black communities have contributed to disparate access to healthy foods. In addition, Federally Qualified Health Centers (FQHCs), which play a significant role in healthcare delivery for Black Americans, are more likely to be in medically underserved communities, and key social determinants of health such as low income, food insecurity and poor food access are more prevalent. Therefore, we propose examining the feasibility and acceptability of a 12-week Food is Medicine intervention -grocery delivery, cooking classes, and nutrition education – for hypertensive Black women who are obese, which may lead to weight loss and reduced sodium intake and blood pressure. Our proposed intervention (FIM+) is adapted from an existing FIM program called Mi Care DM. Mi Care DM provided a prescription for fresh produce grown at a local farm in parallel with chronic disease risk reduction education to diabetes patients served by a Federally Qualified Health Center (FQHC) in Chicago. Responding to the C3EN Pilot Grant Program and based on our formative evaluation and adaptation, the objective of this study is to conduct pilot FIM+ for 12-weeks among Black women who are obese and hypertensive living in two communities in Chicago with limited access to healthy foods. We propose to 1) Pilot the FIM+ intervention and measures that will be used to assess blood pressure, BMI status, and sodium intake with 20 Black women diagnosed with hypertension and BMI ≥ 30. We will assess the efficacy of the evaluation tools to be used in a future clinical trial at three time points (baseline, 12 weeks, and 6-months); and 2) Assess the feasibility and acceptability of the FIM+ intervention using interviews, surveys, and documentary analysis. Findings from this study will inform a larger efficacy trial of FIM+ to improve dietary behaviors and blood pressure control among Black women with hypertension and obesity.
CBO: Good Food is Good Medicine; Feeding Chicago Families
Clinic: UI Health Mile Square Health Center
Social Workers and Community Health Workers in Primary Care: A RE-AIM Impact Study
Assistant Professor, Rush University Medical Center
The U.S. spends more on healthcare than any other industrialized nation. Much of this spending is concentrated on a small percent of the population with multiple chronic conditions (MCCs) and complex healthcare needs. Often unmet behavioral health and social needs are a major contributor to poor health outcomes in people with MCCs. To address behavioral and social needs, the Rush Center for Health and Social Care Integration (CHaSCI) developed an evidence-based person- and family-centered care management model called Ambulatory Integration of Medical and Social (AIMS). The CHaSCI AIMS intervention is social work-led (SW) and considered an intensive care management intervention. This means that SWs spend time exploring co-occurring mental health concerns, social needs, and other complexities influencing health and engagement in care. This model has been used successfully in primary and specialty care sites locally and nationally, including Oak Street Health (OSH). OSH, founded in Chicago in 2012 provides primary and specialty care to Medicare and Medicaid eligible individuals. A majority of the OSH patients are over age 65 and have an average four chronic conditions, such as diabetes, hypertension, chronic obstructive pulmonary disease, or congestive heart failure. Many also have complex behavioral and social needs, including depression and substance use disorders. All of the SWs at OSH are trained in the CHaSCI AIMS model. More recently, OSH began integrating Community Health Workers (CHWs) into the SW care management services. For this project, we will partner with OSH in order to rigorously evaluate the impact of adding CHWs to the SW care management teams at OSH who provide services to Medicare beneficiaries with MCCs who are at high risk for adverse health outcomes. We will conduct a retrospective analysis of data from 131 OSH clinics nationally, including 23 in the Chicagoland area. This study will use the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework to evaluate program outcomes when the CHaSCI AIMS model is implemented at OHS sites with SW care management only and at sites with SW and CHW care management services.
Clinic: Oak Street Health
INtegrating IllneSs Perceptions to Improve the PatienT-Provider Encounter for CKD (INSITE-CKD): A Pilot Study
Assistant Professor, University of Illinois Chicago
Chronic kidney disease (CKD) effects 1 in 7 adults in the U.S., with higher rates among racial and ethnic minority patients. Early-stage CKD patients often have no symptoms, however, progression to kidney failure has an enormous impact on quality of life, risk of death, and healthcare costs. Adhering to recommendations for medication, diet, and exercise are critical to slowing CKD progression, but many patients struggle with adherence. Recognizing patients as an important member of the care team allows the person to provide crucial insights about their unique perceptions and preferences to inform treatment. However, primary care providers (PCPs) face barriers to tailor care to patients, including a lack of time and resources. Tailored care is even less likely to occur for patients who need more complex care (e.g., older adults) and/or when there is racial/cultural discordance (e.g., racial/ethnic minorities). A strategy developed by the NIH is the routine measurement of data from patients using standardized measures (PROMIS) to enhance communication between patients and providers. Using a PROMIS-style standardized method of assessing patients’ lived experience with illness could be a time and resource-efficient method for providers to gather information about a patient and tailor treatment to best meet patients’ needs. Illness perceptions, or the unique way an individual understands their chronic condition, incorporate multiple, complex factors, including cultural norms about health and disease as well as personal and interpersonal experiences and can impact engagement in health behaviors. We propose the integration of illness perceptions within the clinic encounter, as they provide critical clinical information. An illness perceptions-based intervention is needed to promote positive patient-provider communication and appropriately tailored treatment plans to improve treatment adherence and patient health and wellness. This is especially critical for early-stage CKD patients who have been the target of few interventions to date to improve adherence and delay or prevent disease progression. Our intervention, INtegrating IllneSs Perceptions to Improve the PatienT-Provider Encounter for CKD (INSITE-CKD), trains PCPs to use systematically collected illness perceptions data as they engage with the patient during the clinic visit. The purpose of this study is to pilot test INSITE-CKD in 20 CKD patients, to explore potential outcomes related to the clinic visit and patient health, and to determine if the intervention is feasible and acceptable to patients and PCPs as a possible transformation of a primary care visit. The sample will come from the Mile Square Health Center in Chicago, a Federally Qualified Health Center with a high percentage of historically excluded populations. This health equity approach to clinical practice has the potential to begin to reduce persistent racial/ethnic minority disparities in chronic disease treatment and health outcomes though the respectful centering of the patient as a whole person who lives outside of the clinical encounter. Furthermore, this patient-centered approach is pragmatic and resource-conscious and designed for implementation in low-resource settings, with excellent potential for translation into practice.
Clinic: UI Health Mile Square Health Center
Research Assistant Professor, University of Illinois Chicago
Underground cigarette markets dangerously undermine public health efforts aimed at eliminating smoking and smoking-related health disparities by increasing access to lower-cost cigarettes for smokers and youth. Low income, disadvantaged minority communities that disproportionately bear the burden of tobacco-related consequences and suffer from inadequate resources for quitting, like ethnic enclaves, are especially affected by an illegal market in illicit cigarettes. Rates of smoking among Chinese Americans within ethnic enclaves are particularly high with rates up to 38.5%, compared to less than 15% in the general U.S. population. Overall, Chinese Americans experience a disproportionate burden of illness due to smoking, including high incidence rates of lung cancer and mortality, hypertension, and hemorrhagic strokes. Ethnic enclaves are neighborhoods with high concentrations of an ethnic group, and serve as ports-of-entry for immigrants to the United States. Ethnic enclaves are characterized by concentrated poverty and violence, poor housing conditions, and lack of access to health care. The role of ethnic enclaves in maintaining underground cigarette markets has previously been understudied. However, a content analysis of 931 media reports suggests that cigarettes produced in China have been smuggled into Chinese ethnic enclaves throughout the world, including the U.S. In the proposed pilot study, we will investigate in Chicago’s Chinatown: how salient is the underground cigarette market (Specific Aim 1); who the underground market is salient for (Specific Aim 2); what types of sellers exist in the underground market, where does access to this market occur, and why the underground cigarette market is salient (Specific Aim 3). The Specific Aims are: (1) to estimate the level of illicit cigarette use among smokers in Chicago’s Chinatown through the collection of littered cigarette packs; (2) to investigate and understand the characteristics of the smokers who access and use illicit cigarettes through street corner surveys with pack observations; and (3) to explore the socio-cultural contexts that promote and reinforce the availability, channels of access, and use of illicit cigarettes through semi-structured qualitative interviews. First, we will obtain physical evidence that illicit cigarettes are being consumed in Chicago’s Chinatown, as well as an estimated prevalence of illicit cigarette use through the littered pack collection. Second, we will be able to establish if Chinese American smokers from Chicago’s Chinatown purchase and use illicit cigarettes through the street corner surveys with pack observations. Third, we will increase our understanding of the socio-cultural contexts of the underground cigarette market to identify and guide potential targets of policy or other intervention in this ethnic enclave. We will partner with the Midwest Asian Health Association (MAHA) from Chicago’s Chinatown to help interpret the findings. Results will lay the foundation for action research to design, implement, and test the efficacy of a community coalition-driven, multi-level effort aimed at addressing and reducing health disparities among Chinese American smokers.
CBO: Midwest Asian Health Association
Legal Care for Caregivers to Violently-Injured Adolescents and Young Adults
Assistant Professor, University of Chicago
Violent injury of a family member or loved one is a traumatic event that can have extended health effects across the life course. This type of indirect exposure to violence can increase risk for chronic diseases through pathophysiologic processes, such as stress or neuroendocrine responses, or by influencing social and behavioral processes (e.g., stress eating, social isolation). In prior work, I have shown that even indirect exposure to violent injury, through victimization of a close friend or family member, can have downstream effects on health. Indirect exposure to violent injury was associated with 9% higher hypervigilance, a main symptom cluster for PTSD; and high hypervigilance was associated with higher systolic blood pressure by 8.6mmHg—a population level difference associated with 50% higher risk of heart attack or stroke. Caregivers of adolescent and young adult survivors (e.g., parents), in particular, may have limited support to address the increased burden of care and longstanding social challenges associated with risk of violent injury.
Many of the social and structural determinants of health (SSDOH) associated with risk for violent injury are also associated with barriers to recovery, risk for re-injury, and adverse downstream health consequences. To date, most violence recovery programs focus on the immediate psychological and physical recovery of survivors, with limited strategies to address shared risks within a survivor’s social network. One strategy that has been used to address SSDOH in various healthcare settings has been the establishment of medical-legal partnerships (MLPs), which integrate legal advocates into healthcare systems to address structural inequities (e.g., access to public benefits, employment, housing). I am currently co-leading the implementation of an MLP at the University of Chicago Trauma Center to provide legal assistance to patients affected by violent injury.
This provides an opportunity to conduct research at the social network level, and create a parallel program that focuses on legal interventions to address health-harming legal needs (HHLNs) among caregivers. This proposal will enable the acquisition of critical data that will illuminate how violent injury is experienced both functionally and structurally among social networks, and further, examine whether extension of services to caregivers imparts any collective health benefits to a survivor and caregiver. The proposed specific aims are to: 1) Examine functional and structural social network characteristics of survivors and caregivers, and their associations with baseline HHLNs and violence-related health measures (stress, hypervigilance, hypertension), and 2) Examine whether caregivers who receive legal assistance have improvements in healthrelated quality of life (HRQoL), HHLNs and violence-related health measures. The overall objective of this proposal is to evaluate the social network effects of violent injury and also pilot a legal intervention among caregivers who have been affected by violent injury. Accomplishing these aims will generate critical pilot data for a larger, multilevel intervention to mitigate the adverse health affects of violence in a future R01.
CBOs: Legal Aid Chicago and Moms Demand Action
Pilot Randomized Control Trial of a Co-Designed Trauma-Focused Intervention with Black Women Experiencing Homelessness in Chicago
Assistant Professor, Rush University
Homelessness and associated traumas disproportionately affect Black women in Chicago. While women experiencing homelessness (WEH) have universally faced traumatic events, Black WEH are disproportionately impacted by trauma, including racial trauma. The biopsychosocial health consequences of untreated trauma are profound. PTSD frequently co-occurs with other chronic health conditions, including substance use disorders (SUD). Comorbid PTSD and SUD (PTSD+SUD) is common and difficult to treat, resulting in severe morbidity and premature mortality among WEH. The SUD-associated death toll has a disproportionate impact on WEH, with drug overdose accounting for nearly one in four deaths in this population. In fact, certain sub-groups of WEH face 20-fold higher mortality rates. In my pilot studies, I have systematically adapted a trauma-focused intervention protocol (Narrative Exposure Therapy [NET]) to the self-identified needs and preferences of traumaaffected Black WEH. This adapted intervention, “NET+”, incorporates strengths and beliefs identified by Black WEH themselves, embedding principles of religiously/spiritually-integrated cognitive behavioral therapy (RCBT) into conventional NET. NET+ aims to both employ core NET principles to re-process past trauma in parallel with building present-centered skills to address avoidant coping motives in PTSD+SUD. In this C3EN grant, I will determine the feasibility and acceptability of a 6-week NET+ intervention protocol (Aim 1). To accomplish this aim, I will conduct a randomized wait-list control trial with 40 Black WEH in Chicago. Next, I will determine pre- and post-NET+ intervention PTSD and trauma-related symptom scores (depression, anxiety, somatization, sleep), substance use behaviors, and effect sizes (Aim 2). This C3EN proposal will: (1) centralize Black WEH who are historically and presently marginalized from PTSD+SUD intervention co-design and implementation; (2) address racial trauma as a primary driver of health disparities in Chicago; (3) incorporate elements of past trauma treatment (NET) and religious/spiritual strengths-based coping skills building (RCBT) to multimodally address mechanisms underlying comorbid PTSD+SUD; (4) serve as a critical time intervention during housing status transition (homelessness) and promote long-term housing stability. This C3EN award will further prepare me for successful independence as a NIH-funded clinician-investigator dedicated to health equity with and for populations experiencing homelessness and other forms of social disadvantage, specifically Black WEH. Executing this study will help to identify and address the disproportionate PTSD+SUD comorbidity burden, which drives health inequities in the growing population of Black WEH within and beyond Chicago.
CBO: Sarah’s Circle
BrotherlyACT: Developing a Novel Equity-Focused Coping- and Life-Skills Digital Tool for Sustained Violence Prevention Among Young Black Males in Chicago
Assistant Professor, Rush University
Young Black males are vastly overrepresented as victims and perpetrators of youth violence and homicides. According to the CDC’s Vital Signs data, for the past two decades, homicides involving firearms have been the leading cause of mortality among black males ages 10-24. In the West and South Sides of Chicago, where poverty, unemployment, and reliance on public assistance are the most prevalent, there is a disproportionately high prevalence of death, illness, and suicide among young Black males. Chicago has a high per capita violence burden (with a homicide rate of 18.3 per 100,000 people compared with the US average of 7.8 per 100,000 people in 2020). Violence-involved Young Black Males develop multiple chronic conditions that include heightened psychological symptoms (depression, anxiety, PTSD, substance use disorders), chronic physical health conditions, and psychosomatic conditions (e.g., avoidant coping), all of which have a negative effect on their quality of life, social participation, health, and well-being. Although violence prevention programs are abundant in Chicago, violence-involved young Black males face individual and structural barriers to engaging with these programs. As a result, young Black males adopt avoidant coping styles and strategies in their daily lives to navigate violent contexts (individual coping) and to avoid programs they perceive to be linked with the “feds” (environmental or ‘street’ coping). These coping styles include emotional avoidance (e.g., behavioral disengagement, confrontative tactics, minimization, and hopelessness) and service avoidance (e.g., opting out, willful disengagement, early dropouts, non-compliance, tardiness, and absenteeism in prevention programs). Specifically, these avoidant coping strategies contribute to recidivism, reinjury, and reincarceration, resulting in a revolving-door approach to violence prevention. There is an urgent need for unique, culturally responsive solutions that reduce the harm of exposure to violence and prevent future involvement in violence, enhancing equitable access to evidence-based programs (EBPs). As “digital natives,” technology-enhanced interventions for violence prevention can significantly impact health, quality of life, and chronic conditions. Consistent with C3EN’s mission and research focus areas, the overarching goal of this project is to understand the factors that influence young Black males use of violence prevention services in Chicago, and attendant health disparities. In Aim 1, we will investigate and characterize culturally relevant coping strategies among violence-involved young Black males in Chicago and examine how they relate to help-seeking, service access, and utilization. In Aim 2, we will develop and test the feasibility of a culturally relevant coping-focused module targeting avoidant coping among young Black males at risk for youth violence. These aims will support the PI’s planned expansion of a digital tool (BrotherlyACT) for the early prevention of violence and substance use in underserved youths. The results of the proposed research will provide crucial data for an R21 or R34 proposal to build on this award.
CBO: Urban Male Network
Neurologic outcomes and health care barriers in patients with multiple sclerosis in Chicago
Fabian Sierra Morales
Assistant Professor, Rush University
Multiple sclerosis is the most common disabling neurological disease of young adults. Early intervention with disease-modifying treatment (DMT) is the best strategy to prevent disability. However, health insurance coverage, demographic and socioeconomic factors may impede access to DMTs. This research seeks to identify the factors that limit access DMTs and lead to
worse clinical outcomes in MS patients in Chicago. This study will provide data to develop community-partnered interventions that reduce health disparities in MS and improve health care access.
Aim 1 will compare neurological outcomes in MS patients who are insured by Medicaid or uninsured to those who have private insurance, assessing radiological activity, disability progression and clinical stability. Aim 2 will assess the effect of insurance coverage on the access to DMTs and aim 3 will evaluate the socioeconomic factors associated with differences in access to DMTs and MS outcomes. This analysis will be novel and of significant importance.
Disparities in Home Nursing for Children with Invasive Mechanical Ventilation: Identifying National Trends and Piloting a Parent-to-Parent Intervention in Chicago
Assistant Professor, University of Chicago
Children with invasive home mechanical ventilation (iMV), most of whom are survivors of extreme prematurity, have prolonged hospitalizations during index hospital stays (the hospitalization when a tracheostomy is placed) due to shortages of home health nurses. Preliminary data suggests that long hospital stays are not universally experienced for children with iMV; Black and Hispanic children have significantly longer hospitalizations. Prior work by our team has also demonstrated that while all families struggle with adequate home nursing to some extent, Non-Hispanic White (NHW) parents more often describe recruiting for home nurses themselves and successfully expanding their homecare teams. Families from all backgrounds turn most often to experienced parents on social networks for advice for the care of their child, and often seek advice for nursing or nurse agency-related issues. This proposed pilot Chicago Chronic Condition Equity Network (C3CN) proposal will used a mixed methods approach to address the issue of home health nursing and hospitalization disparities for Black and Hispanic families with iMV. Data from this pilot project would support subsequent R-level interventions designed specifically for reducing disparities for Black and Hispanic families. In Aim 1, we will analyze national Medicaid claims to describe and compare Black and Hispanic children to NHW children regarding hospital length of stay (LOS) and home health nursing utilization. In Aim 2, we will pilot a parent-to-parent coaching model with experienced family members of children with iMV as parent coaches. Parent coaches will advise on self-advocacy for home nursing for parents who are awaiting their child’s hospital discharge despite being medically stable. The Division of Specialized Care for Children (DSCC) estimates that the majority of children with iMV in Illinois who are medically stable and awaiting discharge are Black; these parents who have been waiting longest will be prioritized for recruitment. Parents and parent coaches will meet as needed and engagement will be tailored to parent preference: text messaging, video or phone conferencing, or in-person visiting in the family home or hospital. Points of contact, issues addressed, and time required will be collected as needs assessment data to appropriately size and scale a future intervention. Enrollment and exit assessments will include completion of the Family Empowerment Scale and a brief structured interview about parents’ perceived impact and acceptability, which will provide pilot data to inform a future intervention. Creatively addressing home nurse staffing shortages by empowering and educating parents about staffing strategies has the potential to reduce gaps in access to community home health nursing care. Our objective is to (1) analyze index LOS and nursing service receipt in a large population of children with iMV to understand the degree of disparity not explained by medical factors; (2) pilot a parent-to-parent coaching model for Black and Hispanic families. This proposal would provide pilot data to support subsequent R-level interventions designed specifically for reducing disparities for Black and Hispanic families.
CBO: Division of Specialized Care for Children (DSCC)
Development of a Culturally Tailored Resilience-Building Intervention to Facilitate Advance Care Planning Discussions Between Chinese American Patients and Their Family Caregivers
Postdoctoral Fellow, University of Illinois Chicago
Avoidance of advance care planning (ACP) discussions and failure to complete advance directives can delay the introduction of palliative and hospice care and risk patients receiving costly and aggressive care at the end of life. ACP is a process to facilitate decision-making for future medical care and document values and preferences. Despite the proven benefits of ACP—in achieving satisfying, goal concordant care at the end of life, better communication, and better quality of death—less than 15% of Chinese Americans complete advance directives. That is less than half of the 37% completion rate in the US general population. This disparity in the use of ACP between White Americans and Chinese Americans may extend to disparities in end-of-life care, including rates of hospice use and prevalence of unwanted aggressive treatments. To address such disparities in end-of-life care, we will develop and assess the feasibility of a culturally tailored resilience-building intervention to help Chinese Americans with cancer or heart disease and their family caregivers engage in ACP discussions. Increasing resilience skills can help by empowering both patients and family caregivers to access and utilize external resources (e.g., social support from families and health care providers), internal resources (e.g., individual strengths and coping skills), and existential resources (e.g., meaning-making and finding gratitude) to address the stress they face during ACP discussions. Resilience-building has already shown promising results in reducing cancer distress in adolescents and young adults with cancer and their parents. Development of this intervention will be guided by the 3-phase multiphase optimization strategy (MOST), using a dyadic intervention approach by including both Chinese Americans with cancer or heart disease and their family caregivers. This pilot study will use the first phase of MOST to lay the groundwork for optimizing the intervention to ensure its effectiveness, affordability, scalability, and efficiency. The specific aims are to (1) conduct a qualitative analysis of semi-structured interviews with 10 religious leaders to identify barriers and facilitators to discussing ACP and death-related topics among Chinese Americans with cancer or heart disease in Chicago; (2) conduct a usability test of a culturally tailored resilience-building intervention prototype to collect feedback on the intervention’s content using think-aloud interviews; and (3) conduct a process evaluation to determine the feasibility, acceptability, and appropriateness of the intervention prototype. Aims 2 and 3 will be conducted among 18 pairs of Chinese American patients and family caregivers in the Chicago region. The expected outcomes are identification and development of the essential components of the culturally tailored resilience-building intervention and data that contributes to a revised version of the intervention to be optimized in future research, including an R21 application, that follows into the second phase of MOST.
HEAL (Health, Equity, and Longevity)- Development of a Gendered Race Related Stress Intervention
Assistant Professor, Rush University Medical Center
Black women experience disparities in health outcomes across numerous mental and physical health ailments including obesity, hypertension, breast cancer, maternal health, and post traumatic stress disorder. The weathering hypothesis asserts that Black women’s poorer health outcomes may be due to an accelerated aging process as the biological level incited by a dysregulation of the body’s stress response. The physiological response to stress is a result of both the exposure to stressors as well as the body’s attempt to respond to the stressful stimuli. The weathering process is believed to be a result of a high allostatic load-the cumulative burden of chronic dysregulation of the body’s stress response. A growing body of literature indicates that Black women may be exposed to disproportionately high levels of psychosocial stress. One explanation for the high level of stress exposure in this population is that this group, due to their racial and gender identities experience are particularly vulnerable to multiple forms of oppression. The theory of intersectionality asserts that Black women are simultaneously exposed to the structural and individual forces or racism and sexism, thus putting them at a “double disadvantage”. Moreover, this theory asserts that the experience of Black women cannot be understood as merely the sum of racism and sexism but must be treated as an entirely new phenomenon unto itself. The construct of gendered racism attempts to capture this unique stressor. Black women frequently encounter gendered racism, which has been associated with numerous poor physical and mental health outcomes. Moreover, data indicate that in addition to the stress of gendered racism and universal stressors not specific to their identity Black women often engage in coping styles which exacerbate stress rather than alleviate it. Thus, a novel intervention to target the unique stress associated with gendered racism is proposed. Guided by the ORBIT framework this project will develop (with formative work and a Community Advisory Board) and pilot (N= 10) an intervention designed to provide adaptive coping mechanisms to Black women at high risk for morbidity and mortality due to their current health status. This project will provide pilot data for the principal investigator to apply for future external funding to conduct a randomized controlled trial.