CHAS 2008-2009 Seed-Grant Awards

Yoonsun Choi, PhD

The Korean American Families (KAF) Project

The Korean American Families (KAF) Project is an important effort to enhance our knowledge of immigrant families and their experiences. Specifically, the KAF Project aims to document the rates and patterns of adolescent behaviors (e.g., substance use & violence) and mental health outcomes and identify correlates and causes of such youth outcomes among Korean adolescents living in Chicago and surrounding areas. The correlates of special interest include those related to race and ethnicity, acculturation, and family socialization. The study also seeks to test existing survey measures for appropriateness, develop culture-bound parenting behaviors and group-specific acculturation measures, and examine how these constructs interact with one another to influence youth outcomes.

For children of color, everyday social interactions are shaped by factors around their race, ethnicity and culture, e.g., racial discrimination, ethnic identity, cultural conflicts with parents, culturally distinct family values, and acculturation. These factors have shown to add risks or buffer against risks in the youth development. Korean immigrants, although successful in many aspects, are thought to be culturally and socially marginalized, more than other immigrant groups. This study aims to investigate how these factors, especially the cultural and social marginalization, influence youth development among Korean American youth.

In 2007, the KAF Project, using the person-to-person survey research method, interviewed a total of 655 individuals (220 youth, 260 mothers and 175 fathers). This proposal seeks support from CHAS to conduct a follow-up interview with paternal participants in 2008 (n = 175). With the follow-up data, newly developed measures of parenting and acculturation will be examined for test-retest reliability, which is crucial information to develop reliable and valid measures. In addition, the availability of the follow-up data ensures the scientific rigor of the study by providing (1) temporality in the relationships, which is a first step to elucidate causal mechanisms among factors and (2) ability to control for the earlier behaviors to identify factors that predict youth behaviors above and beyond the effect of earlier behaviors. These analyses will help find crucial factors that can be targeted in interventions to prevent and treat youth problems. The support for the follow-up interview from CHAS would also better situate this study for additional, larger external funding.

Malitta Engstrom, PhD

Pilot-Testing an Innovative Family Intervention with Mothers who are Incarcerated and Caregiving Grandmothers

The rate of incarceration of women is increasing at an alarming pace, disproportionately affects women of color, and often involves profound impact on families and grandmothers who care for their grandchildren during their daughters’ incarceration. Substance use and abuse play significant roles in the incarceration of women and add to the complexity of issues the women and their families must address. The majority of women who are incarcerated were residing with their minor children prior to their incarceration and more than half of their children are cared for by a grandparent during their incarceration. Grandmothers are disproportionately likely to become the grandparent caregivers and to experience complicated caregiving challenges that exceed usual grandparent caregiving demands. The complexity is increased for grandmothers who offer support to their daughters who are incarcerated, often in the context of longstanding difficulties associated with their daughters’ substance use problems, while providing care for their grandchildren who are likely to experience complex psychological, behavioral, and academic needs associated with their mothers’ incarceration and substance use problems. Managing the effects and daily challenges of longstanding poverty further exacerbates the vulnerability of this group of caregiving grandmothers and increases their already high risk for health and mental health problems and legal and financial difficulties; however, little is known about effective strategies to assist them and their families. Given that caregiving grandmothers are vital missing links in interventions with families affected by maternal incarceration and substance use problems and that the well-being of each family member is intricately interconnected, this study addresses a crucial gap in knowledge and services by developing and pilot-testing a multigenerational culturally-relevant intervention with this group of families. Informed by principles of community-based participatory research, this study will draw upon focus group data from mothers who are incarcerated and caregiving grandmothers, along with relevant theory and prior research, to design and pilot-test a family intervention with 10 mothers and grandmothers. Such an intervention has the potential to facilitate numerous positive outcomes, including reduced psychosocial and material strain among the caregiving grandmothers, stronger family relationships, enhanced parenting among the grandmothers and mothers, reduced substance use and re-incarceration among the mothers, and improved psychosocial functioning among the children.

James Evans, Assistant Professor of Sociology

Unequal Knowledge: Disparities between Burden of Disease and Bio-Medical Understanding

Are scientists’ research choices benefiting the public? Are their discoveries relevant to the disadvantaged? We propose a project to understand the relationship between the distribution of health in society and the creation, application and dissemination of medical knowledge and technology. Through this research, we hope to identify times and places where bio-medical research and practice diverges from critical human needs, especially those of disadvantaged populations and 2) account for those institutions most responsible for these deviations. Many epidemiologists contend that the consistent relationship between poor socio-economic status and poor health is simply an indicator of other, more proximate causes of morbidity and mortality, but others argue it is a “fundamental cause” which flexibly reproduces disparities in access to health care, health knowledge and health resources. We believe that our research could show that low socio-economic status not only limits present access to care, knowledge and resources, but that it limits health science’s access to those people and their health problems such that subsequent generations of health science and technology are systematically less relevant to them, even if access were equal. Our hope is that the results of research on these deviations and their causes can be used by doctors, scientists, public health and science policy to improve the feedback between medical knowledge and poor health.

Specifically, we propose to use the BioMedLEE natural language processing (NLP) system to annotate and map the genotypes, phenotypes, methods and disease-categories mentioned in a large sample of over 25 million full-text bio-medical articles published over the past 20 years. These annotations will create a dynamic map of the shifting attention of scientists across different disease areas over that period. Then we will link these to epidemiological assessments of the burden of disease, and evaluate the disparities between the weight of research and health problems in the population, especially for disadvantaged peoples. Finally, we will measure a number of institutions to account for these disparities, including: 1) the mention of disease in the popular press (e.g., celebrity disease), 2) registered disease advocacy groups (e.g., lobbying); 3) government and industry funding for research (e.g., expected market size), 4) the social networks and training genealogies of researchers (e.g., socialization and diffusion of disease interest), and 5) the distribution of tertiary care facilities—and publishing physicians—relative to disadvantaged populations.

Karen Goldstein, MD

A patient-centered approach to understanding the impact of Medical Home on non-medical issues affecting child health

The aim of this study is to provide patient-centered insights to improve the design and implementation of programs that provide clinic-based social service and free legal resources – a “medical home” -- to families in vulnerable populations. The impetus for this study grows out of the recent implementation at a Chicago Federally Qualified Health Center (the Friend Family Health Center) of a collaborative program of onsite social and community resources and free legal services to address non-medical issues that affect child health. Based on the AAP concept of the “medical home”, the clinic serves as a point of intervention to connect families with critical help to secure basics such as food, housing, childcare and medical insurance. This cooperative effort between the Friend Family Health Center, the Family Help Desk and the Chicago Medical-Legal Partnership for Children (CMLPC) seeks to reduce health disparities resulting from limited access to basic community, social, and legal services.

Although similar collaborative programs have been implemented in other locations, there is currently no research-based documentation of the reasons for success from the patient point-of-view. This study, therefore, seeks to provide an in-depth, patient-centered investigation of the triggers and obstacles that motivate or prevent patients to establish a medical home. The detailed, qualitative outcomes of this research will provide a framework for a broad range of ongoing quantitative and qualitative assessments and evaluations.

The methodology developed for this study is an innovative, qualitative “workshop” that combines the efficiencies of focus groups with the depth and detail of ethnographic methods. Through a series of interactive activities, this method engages participants in dialogue about the triggers and obstacles that motivate or prevent their use of the Family Help Desk and CMLPC at the Friend Center and elicits detailed, in-depth personal narratives that reveal the natural language, visual and verbal imagery, and structure of participants’ experiences of the Friend Center as a medical home.

 

Dana Suskind, MD

Health Disparities in Pediatric Cochlear Implantation: Rates of Implantation, Age at Implantation, and Geographic Determinants

The growth of pediatric cochlear implantation (CI) since FDA approval for children in 1992 has been exponential. This has resulted in a dramatically improved quality of life for deaf children and a significant societal cost savings. Unfortunately, growing disparities are also apparent. Ethnic minorities and low socioeconomic groups differ in both rates of implantation as well as functional outcomes (e.g. speech and language acquisition). African-American children are implanted at “relative rates” ten times less, and Hispanic children five times less, than more affluent Caucasian counterparts. Economically disadvantaged pediatric cochlear implant recipients also have significantly worse speech and language outcomes than more affluent peers. These disparities have resulted in long-term negative consequences, both to the individual and society at large.

While racial/socioeconomic inequalities exist in many facets of health care, an in-depth understanding of the underlying issues from a ‘scientific and policy perspective’ is generally lacking. Similarly, while a general consensus concedes that a widening disparity exists in pediatric cochlear implantation, there is very little in the literature as to its nature and underlying factors. To this end, we propose a pilot Medicaid database study (as a proxy for socioeconomic status (SES)) to establish the foundation for a larger scale study which will define the issues in this critical health care disparity.

The overall plan is to gain a deeper understanding of potential underlying contributors to health disparities in pediatric cochlear implantation via a Medicaid database study. We hypothesize that even in this low SES population, significant ethnic disparities exist in implantation rate and age of implantation. In addition, we hypothesize that low SES children who undergo implantation will be in closer proximity to a major implantation center and/or oral deaf school than those who are not implanted. The primary aim of this study will be to define the issues contributing to the inequities in pediatric cochlear implantation by evaluating a Medicaid dataset from a four-state region over two years as a pilot for a future larger scale Medicaid dataset study.