[Show abstract][Hide abstract] ABSTRACT: Despite substantial data documenting the challenges in recruiting racial and ethnic minorities into research studies, relatively little is known about the attitudes and beliefs toward research that are held by racial and ethnic minorities living with HIV/AIDS. The present study assessed the research attitudes and beliefs of a racially and ethnically diverse group of persons living with HIV/AIDS, with research broadly defined as either psychosocial, behavioral, or clinical. Also assessed were factors that would encourage or discourage them from participating in a research study. Six hundred twenty-two participants were recruited from 22 points of service in New York City; data were gathered through a single in-person structured interview conducted in Spanish or English. Findings from a series of quantitative analyses indicated that attitudes about research were primarily neutral or positive, and different attitude and belief patterns were associated with different preferences regarding what would or would not incline one to participate in a research study. Results suggest that minorities with HIV/AIDS are open to the possibility participating in research; however, they also suggest that receptivity to research may not be uniform and indicated a variety of specific research design and implementation options that investigators should consider in order to ensure sufficient access and interest in participation.
AIDS patient care and STDs 06/2010; 24(6):373-80. · 2.68 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: The purpose of this paper is to present validation data on the Events in Care Screening Questionnaire (ECSQ), which was designed to identify the needs and concerns of people living with HIV/AIDS (PLWHA) in nine specific domains: adherence to medical instructions; medical problems; specialty and inpatient hospital care; preventive health care and screening and behavioral health; sexual risk behavior; family planning; psychological symptoms; substance use; and life circumstances and demands. The ECSQ is the anchor for a more comprehensive measure called "The Dynamics of Care," and was administered in the context of a longitudinal study to evaluate New York State's HIV Special Needs Plan (HIV SNP), a Medicaid managed care model for PLWHA. Participants in the study, which began in March 2003 and closed recruitment in January 2007, were NYC PLWHA who were enrolled in either a Medicaid HIV SNP or Fee-For-Service plan. Participants were recruited through HIV SNP enrollment lists, direct on-site recruitment, and fliers. The specific event domains covered in the ECSQ were selected based on the purpose of the HIV SNP and the literature describing the needs and challenges that PLWHA face. Analyses are based on data from 628 study respondents over two times points. Results suggest that the concerns identified by PLWHA were largely consistent with their health care situation, heath status, risk behavior, and personal characteristics. Findings presented here lend support for the construct validity of the ECSQ and demonstrate its value as a starting point for inquiring more fully about the experiences of patients and improving the care they receive.
AIDS patient care and STDs 06/2008; 22(5):381-93. · 2.68 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Patient perceptions of and satisfaction with care have become important indicators of the quality of services and the relationship of services to treatment outcomes. However, assessment of these indicators continues to be plagued by measurement problems, particularly the lack of variance in satisfaction data. In this article, we present a new approach to better capture patient perceptions of experiences in care, the Dynamics of Care (DoC) assessment. It is an in-depth approach to defining and assessing patients' perspectives at different junctures in care, including their decisions about whether and where to seek care, the barriers encountered, and the treatments and services received.
The purpose of this article is to describe, validate, and discuss the benefits and limitations of the DoC, which was administered as part of a longitudinal study to evaluate the New York State HIV Special Needs Plan (SNP), a Medicaid managed care model for people living with HIV/AIDS. Data are from 426 study respondents across two time points.
The results demonstrate the validity and value of the DoC. Help seeking decisions and satisfaction with care appear to be situation-specific, rather than person-specific. However, barriers to care appear to be more cross-situational for respondents, and may be associated with clients' living situations or care arrangements. Inventories in this assessment that were designed to identify potential deterrents to help seeking and difficulties encountered in care demonstrated clear principal component structures, and helped to explain satisfaction with care. The problem resolution index was found to be independent from satisfaction with care and the data were more normally distributed. DoC data were also associated with subsequent utilization and change in quality of life.
The DoC was designed to be a flexible, integrated measure to determine individuals' salient service needs, help seeking and experiences in care. One of the many strengths of the assessment is its focus on specific problems in context, thus providing a more sensitive and informative way to understand processes in care from the patient's perspective. This approach can be used to direct new programs and resources to the patients and situations that require them.
Health and Quality of Life Outcomes 02/2008; 6:20. · 2.27 Impact Factor