Pilot Studies Year Three
Pilot Study Year 3-6
Factors Influencing end of life Decision-making by Rural Dwelling Elderly African-Americans with Advanced Cancer
Principal Investigator: Cathy L. Campbell, Ph.D., APRN-BC, R.N.
Co-Investigator: Ishan C. Williams, Ph.D.
Abstract: African-Americans with cancer are more likely to die in the hospital. That period of hospitalization has been characterized by inconsistent pain management, long periods of futile life-sustaining treatment and at times, poor communication with the health care team. Hospice care has been identified as an alternative to the end of life care that is provided in the hospital; however, African-Americans with cancer are less likely to use the services of hospice than Caucasians with the same diagnosis. Few research studies have analyzed the factors and the decision-making process that would lead African-Americans with late stage cancer to choose options for care at the end of life. A qualitative, descriptive design will be used to: (1) describe personal, clinical, environmental and social factors that have led African-Americans with late stage cancer to choose hospice services or other options for end of life care and (2) analyze the steps that led to the choice of hospice services or other options for end of life care. Audiotaped interviews and a clinical chart review will be used to collect the data. The data will be analyzed for themes that describe the factors and steps that led to the choice of hospice or other options for end of life care. Understanding the factors and steps that lead to end of life decision-making will provide a foundation from which to improve the quality of and access to end of life care.
Performance Sites:
University of Virginia Cancer Center
Rural Sites:
Hospice of the Rapidan
Hospice of the Shenandoah
Pilot Study Year 3-7
Decision-making for Prostate Cancer Screening among Rural African-American Men
Principal Investigator: Randy A. Jones, Ph.D., R.N.
Co-Investigator: Richard H. Steeves, Ph.D., R.N., F.N.P., F.A.A.N.
Co-Investigator: Ishan C. Williams, Ph.D., R.N.
Consultant: Kerry Kilbridge, M.D., M.Sc.
Abstract: Prostate cancer is the most commonly diagnosed cancer among all men in the U.S. Black men are two to three times more likely to be diagnosed with prostate cancer than Whites. There is a dearth and need for information in the literature regarding the decision-making process of Black men in relation to prostate cancer screening. The purpose of this study is to understand that process among Blacks who live in Rural settings. Although prostate cancer screenings (i.e. digital rectal exam [DRE], prostate specific antigen [PSA]) are controversial, they are the main tools to assess the prostate and potentially to move forward if there is suspicion of cancer. The goal of the proposed research is to conduct an in-depth analysis of the attitudes and beliefs on prostate cancer screening among Rural Blacks. The proposed study will examine how rural Black men decide whether or not to have a prostate cancer screening. This project aims to: (1) describe how rural Black men make the decision to have or not to have a prostate cancer screening and (2) identify facilitators and barriers in the prostate cancer screening decision-making process for rural Black men. This study will target a sample group of Black men age 40 and older who have never been diagnosed with prostate cancer, and who, may or may not, have been screened for prostate cancer. Participants will be identified and screened for meeting study criteria in rural community centers in the Central Virginia areas such as barber shops, clinics, churches, diners, and so forth, (places where rural Blacks are most likely to be present). A semi-structured interview guide will assist in leading the discussion for approximately 1.5 hours. This proposed study will contribute to the knowledge of how Black men decide on screening and treatment for prostate cancer. Understanding the Black man’s attitudes and beliefs about prostate cancer screening may lead to more effective interventions to get him into screening earlier and potentially decrease mortality within this vulnerable and highly susceptible group. Ultimately, these findings will aid in the development of culturally sensitive decision aids, and offer data to healthcare providers for the development of improved services and interactions with their patients.
Performance Sites:
Central Virginia
Rural Sites:
Surrounding rural counties of Charlottesville, VA
Pilot Study Year 3-8
The Use of Family Caregivers in Detecting Dementia in a Rural Community Sample
Principal Investigator: Ishan C. Williams, Ph.D.
Co-Investigator: Emily J. Hauenstein, Ph.D., R. N.
Clinical Nurse Researcher: Anita Thompson-Heisterman, MSN, APRN, BC, FNP
Abstract: This project proposes to examine the use of family caregivers in detecting dementia symptoms using two modified screening tools in a rural primary care clinic. In rural communities, there is often a lack of mental health specialists; therefore, most people receive care from primary care practitioners who face significant barriers in delivering a systematic program of care for older adults with dementia. Early diagnosis would enable the physician to prescribe medications that could help reduce the symptoms of dementia and delay the progression of the disease. Failure to detect and treat memory loss may lead to more rapid decline in patients and increase the burden on their caregivers. The purpose of this study is to determine whether a dementia screening tool used by family members can alert the patient’s primary care physician (PCP) about a decline in competence and or a change in personality that may be related to dementia. Often these symptoms are not displayed in the PCP's office. The study targets 100 racially diverse patients, age 55 years old or over, who receive routine care from a primary care clinic and their caregivers. Family feedback about these issues may be the best way to detect early stages of the disease that causes dementia. The specific aims are to: (1) test the utility of the proposed method for dementia screening and provide preliminary data for a major proposal to examine the utility of the modified-Clinical Dementia Rating and the modified-Frontal Behavioral Inventory tools in a rural community setting; and (2) examine social (e.g., socioeconomic status, education, income) cultural (e.g., race/ethnicity), and personal (age, relationship to patient, marital status, depression, and burden) factors that may affect the ability and accuracy of rural family caregivers to identify dementia symptoms among their loved ones. In addition, we will examine within group differences to assess if there are any cultural/ethnic features unique to each racial group. The proposed study could contribute substantially to the recognition of dementias in rural elders. The ultimate goal of this work is to get people diagnosed earlier in the disease progression. Findings from this pilot project will inform measurement and data collection efforts, as well as interpretation of results from the caregiver questionnaires detecting dementia symptoms.
Performance Sites:
University of Virginia School of Nursing
Charlottesville, Virginia
Rural Sites:
Blue Ridge Medical Center, Nelson County, Virginia