Community-Based Research Commons^™

Reaching The Unheard: Overcoming Challenges In Health Research With Hard-To-Reach Populations, Venera Bekteshi, Munjireen Sifat, Darla Kendzor

Kimmel Cancer Center Faculty Papers

PURPOSE: Addressing obstacles such as logistical complexities, social stigma, and the impact of historical traumas is essential for the successful inclusion of underrepresented groups in health research.

METHODS: This article reviews engagement and interview techniques used to ethically engage recently settled Afghan refugees in Oklahoma and rural Mexican-born women in Illinois in research. The paper concludes with a reflective discussion on the challenges and lessons learned.

RESULTS: Creative strategies to engage hard-to-reach populations in research included considering the participants' socioeconomic and cultural contexts in their interactions and developing community partnerships to establish trust and obtain reliable data. Other engagement strategies …

A Longitudinal Analysis Of The Impact Of Child Custody Loss On Drug Use And Crime Among A Sample Of African American Mothers, Kathi L. H. Harp, Carrie B. Oser

Health Management and Policy Faculty Publications

This study examines the influence of child custody loss on drug use and crime among a sample of African American mothers. Two types of custody loss are examined: informal custody loss (child living apart from mother but courts not involved), and official loss (child removed from mother’s care by authorities).

Methods—Using data from 339 African American women, longitudinal random coefficient models analyzed the effects of each type of custody loss on subsequent drug use and crime.

Results—Results indicated that both informal and official custody loss predicted increased drug use, and informal loss predicted increased criminal involvement. Findings demonstrate …

Offline Social Relationships And Online Cancer Communication: Effects Of Social And Family Support On Online Social Network Building, Namkoong Kang, Dhavan V. Shah, David H. Gustafson

Community & Leadership Development Faculty Publications

This study investigates how social support and family relationship perceptions influence breast cancer patients’ online communication networks in a computer-mediated social support (CMSS) group. To examine social interactions in the CMSS group, we identified two types of online social networks: open and targeted communication networks. The open communication network reflects group communication behaviors (i.e., one-to-many or “broadcast” communication) in which the intended audience is not specified; in contrast, the targeted communication network reflects interpersonal discourses (i.e., one-to-one or directed communication) in which the audience for the message is specified. The communication networks were constructed by tracking CMSS group usage data …

Incidence, In-Hospital Case-Fatality Rates, And Management Practices In Puerto Ricans Hospitalized With Acute Myocardial Infarction, Juan C. Zevallos, Jorge L. Yarzebski, Juan A. Gonzalez, Hector L. Banchs, Mario Garcia-Palmieri, Hernando Mattei, Jose Ayala, Marijesmar Gonzalez, Vanessa Torres, Iris N. Ramos, Luis R. Pericchi, David A. Torres, Maria C. Gonzalez, Robert J. Goldberg

Jorge L. Yarzebski

OBJECTIVE: There are extremely limited data on minority populations, especially Hispanics, describing the clinical epidemiology of acute coronary disease. The aim of this study is to examine the incidence rate of acute myocardial infarction (AMI), in-hospital case-fatality rate (CFR), and management practices among residents of greater San Juan (Puerto Rico) who were hospitalized with an initial AMI. METHODS: Our trained study staff reviewed and independently validated the medical records of patients who had been hospitalized with possible AMI at any of the twelve hospitals located in greater San Juan during calendar year 2007. RESULTS: The incidence rate (# per 100,000 …

Chess Improves Cancer Caregivers' Burden And Mood: Results Of An Ehealth Rct, Lori L. Dubenske, David H. Gustafson, Kang Namkoong, Robert P. Hawkins, Amy K. Atwood, Roger L. Brown, Ming-Yuan Chih, Fiona Mctavish, Cindy L. Carmack, Mary K. Buss, Ramaswamy Govindan, James F. Cleary

Community & Leadership Development Faculty Publications

OBJECTIVE: Informal caregivers (family and friends) of people with cancer are often unprepared for their caregiving role, leading to increased burden or distress. Comprehensive Health Enhancement Support System (CHESS) is a Web-based lung cancer information, communication, and coaching system for caregivers. This randomized trial reports the impact on caregiver burden, disruptiveness, and mood of providing caregivers access to CHESS versus the Internet with a list of recommended lung cancer websites.

METHODS: A total of 285 informal caregivers of patients with advanced nonsmall cell lung cancer were randomly assigned to a comparison group that received Internet or a treatment group that …

Accommodations For Patients With Disabilities In Primary Care: A Mixed Methods Study Of Practice Administrators, Jennifer Renee Pharr

Environmental & Occupational Health Faculty Publications

Structural barriers that limit access to health care services for people with disabilities have been identified through qualitative studies; however, little is known about how patients with disabilities are accommodated in the clinical setting when a structural barrier is encountered. The purpose of this study was to identify how primary care medical practices in the United States accommodated people with disabilities when a barrier to service is encountered. Primary care practice administrators from the medical management organization were identified through the organization’s website. Sixty-three administrators from across the US participated in this study. Practice administrators reported that patients were examined …

An Ehealth System Supporting Palliative Care For Patients With Non-Small Cell Lung Cancer: A Randomized Trial, David H. Gustafson, Lori L. Dubenske, Kang Namkoong, Robert Hawkins, Ming-Yuan Chih, Amy K. Atwood, Roberta Johnson, Abhik Bhattacharya, Cindy L. Carmack, Anne M. Traynor, Toby C. Campbell, Mary K. Buss, Ramaswamy Govindan, Joan H. Schiller, James F. Cleary

Community & Leadership Development Faculty Publications

BACKGROUND: In this study, the authors examined the effectiveness of an online support system (Comprehensive Health Enhancement Support System [CHESS]) versus the Internet in relieving physical symptom distress in patients with non-small cell lung cancer (NSCLC).

METHODS: In total, 285 informal caregiver-patient dyads were assigned randomly to receive, for up to 25 months, standard care plus training on and access to either use of the Internet and a list of Internet sites about lung cancer (the Internet arm) or CHESS (the CHESS arm). Caregivers agreed to use CHESS or the Internet and to complete bimonthly surveys; for patients, these tasks …

Awareness And Beliefs Regarding Intimate Partner Violence Among First-Year Dental Students, Rhonda J. Everett, Karl Kingsley, Christina A. Demopoulos, Edward E. Herschaft, Christine Lamun, Sheniz Moonie, Timothy J. Bungum, Michelle Chino

Environmental & Occupational Health Faculty Publications

Intimate partner violence (IPV) may affect one to four million individuals per year in the United States, with women accounting for the majority of both reported and unreported cases. Dental professionals are in a unique position to identify many types of IPV because injuries to the head and neck may be indicators or predictors of IPV abuse. Fewer than half of dental programs surveyed have reported having IPV-specific curricula, and most dental students surveyed have reported having little experience or training to recognize IPV. Based on this information, this pilot study sought to assess the awareness and beliefs regarding IPV …

Predicting Barriers To Primary Care For Patients With Disabilities: A Mixed Methods Study Of Practice Administrators, Jennifer Renee Pharr, Michelle Chino

Environmental & Occupational Health Faculty Publications

Background. People with disabilities continue to be identified as a group who experience disparate health/health care. They are less likely to engage in some health care services. Structural barriers are often identified as one of the reasons for the underutilization of some health care services by people with disabilities. However, to date no study has been conducted to understand why structural barriers persist twenty years after the Americans with Disabilities Act (ADA) became law.

Objectives. We examined the relationship between primary care practice administrators’ knowledge of the ADA and the number of accessibility barriers that patients with mobility disabilities might …

Predictors Of The Change In The Expression Of Emotional Support Within An Online Breast Cancer Support Group: A Longitudinal Study, Woohyun Yoo, Ming-Yuan Chih, Min-Woo Kwon, Junghwan Yang, Eunji Cho, Bryan Mclaughlin, Kang Namkoong, Dhavan V. Shah, David H. Gustafson

Community & Leadership Development Faculty Publications

OBJECTIVES: To explore how the expression of emotional support in an online breast cancer support group changes over time, and what factors predict this pattern of change.

METHODS: We conducted growth curve modeling with data collected from 192 participants in an online breast cancer support group within the Comprehensive Health Enhancement Support System (CHESS) during a 24-week intervention period.

RESULTS: Individual expression of emotional support tends to increase over time for the first 12 weeks of the intervention, but then decrease slightly with time after that. In addition, we found that age, living situation, comfort level with computer and the …

Health Disparities Experienced By People With Disabilities In The Us: A Behavioral Risk Factor Surveillance System Study, Jennifer Renee Pharr, Timothy J. Bungum

Environmental & Occupational Health Faculty Publications

The Americans with Disabilities Act became law in 1990; since then research has shown that people with disabilities continue to experience barriers to health care. The purpose of this study was to compare utilization of preventive services, chronic disease rates, and engagement in health risk behaviors of participants with differing severities of disabilities to those without disabilities. This study was a secondary analysis of 2010 data collected in the Behavioral Risk Factor Surveillance System national survey in the United States. Rao Chi square test and logistic regression were employed. Participants with disabilities had significantly higher adjusted odds ratios for all …