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The HIV/AIDS Women of Color Initiative Improving Access to and Quality of Care for Women of Color
Arthur E. Blank, PhD (bio), Susan Louise Ryerson Espino, PhD (bio), Betsy Eastwood, PhD (bio), Sabrina Matoff-Stepp, PhD (bio) and Jessica Xavier, MPH (bio)
All writing on behalf of the Women of Color initiative
Summary:Summary:

In September 2009, the Health Resources and Services Administration, (HRSA) HIV-AIDS Bureau funded 11 programs to engage and retain women of color (WoC) living with HIV in care. This field report describes the rationale for this Special Project of National Significance (SPNS) initiative, the 11 programs in terms of their theoretical frameworks as well as the contexts and mechanism of care, and outlines some factors that may influence engaging and retaining WoC in care.

Keywords
HIV-AIDS, women's health, access to care, retention in care, peers

The Women of Color Initiative

The lack of research engaging women living with HIV/AIDS, and the disproportionate effect of HIV infection on Women of Color (WoC), provides the background for the Enhancing Access and Quality HIV Care for WoC initiative funded as a Special Project of National Significance (SPNS) by the Health Resources and Services Administration's (HRSA) HIV/AIDS Bureau. Since HIV/AIDS first appeared predominately among gay, bisexual, and other men having sex with men (MSM), women have been under-represented in HIV/AIDS research. However, as the pandemic entered its third [End Page 15] decade, the steady increase of HIV infection among women emerged as an alarming trend. Although women constituted just 14% of adults and adolescents living with AIDS in 1992, by 2005 their proportion had grown to 23%.1 In September 2009, 11 demonstration sites across the United States were funded for five years to promote the engagement and retention in HIV/AIDS care for WoC. In addition to funding local evaluations for each demonstration program, a national evaluation and technical assistance center also was funded. This field report describes the rationale for the SPNS initiative, the theoretical frameworks of funded demonstration programs', the local contexts and mechanisms of care, and outlines factors which may contribute to improving care for WoC.

Rationale for the Women of Color Initiative

The epidemiology.

Sex and gender-based differences that include biological differences in the ways HIV/AIDS affects women; social and economic inequality; women's misperceptions of their vulnerability to HIV infection; and various cultural factors have all contributed to women being underserved in HIV/AIDS treatment, care, and prevention programming.2 ,3 As a result, a dramatic rise in the number of women living with HIV has been documented over the past decade, as has an increase in AIDS-related deaths among women, especially WoC. In 2009 the estimated rate of new HIV infections for Black/African American women was 15 times the rate for White women, and for Hispanic/Latina women was four and a half times that of White women. In 2007, the most recent year for which mortality data are available, for women aged 35-44 HIV was the fifth leading cause of death among all women, the third leading cause of death for Black/African American women, the fourth leading cause of death for Hispanic women/Latinas, and the eleventh leading cause of death for White women.4 The rate of deaths in 2007 among minority women living with HIV/AIDS for women aged 35-44 has not changed since the 2004 data HRSA had available when writing its call for proposals. At that time, HIV/AIDS was the fifth leading cause of death among all US women aged 35-44, the third leading cause of death for Black/African American women aged 35-44 years, the fourth leading cause of death for Hispanic women/ Latinas, and the ninth leading cause of death for White women.1

HRSA Guidance to Grantees

HRSA aimed to fund organizations that provide quality HIV/AIDS care and services in underserved urban and rural communities, especially in areas where the proportion of women of color living with HIV disease is increasing. The guidance also used the results of a study conducted in 20085 to frame an initial understanding of barriers and facilitators that may affect HIV care for women. This study found that barriers faced by WoC when attempting to engage and remain in care existed at multiple levels: the health systems (or structure), the community, the provider, and the patient level. Facilitating factors to health care-seeking were also identified. The barriers to, and facilitators of care are listed in Box 1. HRSA sought to select interventions that would address this socio-ecological understanding to engaging or retaining WoC in care. [End Page 16] HRSA also sought to fund interventions that used either a One Stop Shop or Network of Care Model of care.* The intervention in a One Stop Shop model occurs where most medical care and other related services are provided in one central location by one principal organization or service delivery system. Interventions implemented in a Network of Care model occur within a constellation of service providers or organizations to ensure timely access to care-medical and non-medical. In Network of Care models, the intervention combines a medical care provider or community based organization as the lead agency with linkages to other providers. Many times these connections are based on formal memoranda of understanding. Lastly, each site was asked to identify and operationalize theories which informed their proposed intervention.

Boxed Text.

Box 1.  Barrier to and Facilitators of Access to Care for HIV/AIDS Women of Colora

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The Demonstration Programs

The 11 funded demonstration programs are located in 10 states, with five urban (the JCHW project, Los Angeles; the Community AIDS Resources Inc., Miami; the Ruth M. Rothstein CORE Center, Chicago; New North Citizens' Council, Springfield, Massachusetts; and the State University of New York Downstate, Brooklyn) and six rural locations (the Health Service Center, Hobson City, Alabama; the Georgia Health Sciences University, Augusta, Georgia; the Center for Human Services, Bridgeton, New Jersey; the University of North Carolina, Chapel Hill, North Carolina; the University of Texas Health Science Center, San Antonio; and the Special Health Resources for Texas, Longview, Texas). Besides differing in their geography, sites differ in their theoretical frameworks, models of care, relationship to HIV providers, and core staff used to target, engage, and retain patients. Most sites employ some combination of peers and case managers to identify and sustain WoC in HIV medical care. The peers and case managers also serve as bridges and advocates within and across agencies to help ensure WoC have access to needed medical and non-medical services. Peers in particular, presumably because of their similarity with the HIV-AIDS WoC, are able to recognize literacy concerns and help women better understand their illness as well as the materials, or prescriptions, they may have been provided with. Similarities and differences among the programs are highlighted in Box 2.

The Role of Theory and the Proposed Interventions

As noted above, each demonstration program identified a theory or theories that provided a rationale for its proposed intervention. While theory provides program developers with tools to move beyond intuition to design and evaluate health behavior and health interventions,6 it is important to note that the 11 programs are not explicitly testing theory but rather using theory to provide a rationale for their intervention.

Each demonstration program identified at least one theory to guide their choice of interventions, though the majority of programs relied on multiple theories. McLeory and colleagues'7 five levels of influence for health-related behaviors and conditions was used a guide for categorizing the 11 interventions, and the majority can be described as framed by intra- and interpersonal factors focused on cognitive-behavioral theories thought to influence engagement and retention in HIV medical care. For instance, programs cited theories such as self-management,8 self-determination,9 social learning,10 ,11 ecological theory,12 ,13 health beliefs,14 behavioral models of health care utilization,15 strengths-based principles,16 -19 theories of change,20 theories of gender,21 ,22 and hierarchy of needs.23 Several sites' interventions were also influenced by theories of empowerment,24 a theory that could be used at both an individual and a macro-level. Consistent with the theories used to inform the interventions, most described the goals of care as focused on changes in individual levels of awareness, knowledge, and self-care rather than organizational or community level change. While many programs described care contacts as complex social systems and speak of interventions (including connections and navigation through such systems) the bulk aim to use connections and navigation to increase patient capacity rather than modify the organizational context. A minority of [End Page 19]

Boxed Text.

Box 2.  The Organization and Conceptualization of Care

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[End Page 21]

[End Page 22]

[End Page 23]

sites explicitly used macro-level theories as guiding influences Some examples include the University of North Carolina's use of racial disparities theory,25 ,26 and New North's use of Friere's community education theory.24

The Organization of Care

Focusing on access to HIV/AIDS medical care, how care is organized, and where patients are recruited from creates a preliminary conceptual matrix that can be aligned along at least five dimensions. The first dimension is the geographic location of the demonstration project (rural or urban), the second is the model of care (One Stop vs. Network of Care), and the third is the type of access a demonstration program has to HIV/AIDS medical providers (i.e., on-site or off-site). The fourth dimension is the core staff used to engage patients (peers, outreach workers, nurse guides, and case managers), and the fifth is the type of patient being recruited into the program (e.g., rural migrant worker, homeless, clinical patient).

Box 2 also summarizes the organization of care for each site. Just over half of the demonstration programs are Network of Care models (54%, 6/11), and the remaining are One Stop (45%, 5/11). All demonstration programs hosted by lead agencies that are One Stop shops have immediate and ongoing access to HIV/AIDS medical providers within their organizations. In comparison, a number of programs using network models facilitate access to partners who are medical providers (e.g., Center for Human Services, Bridgeton, New Jersey; New North Citizen's Council, Springfield, Massachusetts). Future program evaluation interests include a comparison of how One Stop and Network models identify, recruit, and retain HIV WoC in care. Additionally, the evaluation will examine whether One Stop programs expand their services or partner with other services. For Network programs, retention of partners, shifting of partners, and challenge in maintaining partners in unstable health care environments are important.

Discussion

Over the next three years, each demonstration project will conduct an IRB-approved local evaluation to document how their programs were implemented and adapted to meet the needs of their local context, and the extent to which they were able to increase access to and retention in care. In addition to each program's local evaluation, the evaluation and technical assistance center will conduct an IRB approved multi-site evaluation (MSE) which will examine the diversity and similarities of the individual demonstration programs. The MSE was constructed with the expectation that the sites would be diverse in settings, interventions, and patient populations, and seeks to use that heterogeneity as a design strength rather than as a design weakness.28 To capture this heterogeneity in programs, and to remain aware of the influence the broader social and economic context may have on each demonstration program, the MSE was conceptualized using a socio-ecological framework.27 The MSE will employ a mixed-method evaluation integrating patient surveys, chart abstractions, cost, and service information, and a process/implementation analysis. The resulting MSE dataset will provide a basis for assessing how personal, structural, and organizational variables, [End Page 24] influence access to care, retention in care, and quality of HIV/AIDS care. In addition, the MSE will try to evaluate the contribution of the demonstration projects to the field and suggest future areas for the development of clinic based and community based care and retention interventions.

Conclusion.

As HIV/AIDS has become a chronic disease, there is a growing recognition that we need to understand how to retain WoC in care.3 This SPNS initiative is designed to help understand how larger numbers of women living with HIV may live longer and healthier lives.

Arthur E. Blank, Susan Louise Ryerson Espino, Betsy Eastwood, Sabrina Matoff-Stepp and Jessica Xavier  

Arthur Blank is an Associate Professor, Department of Family and Social Medicine, Albert Einstein College of Medicine, Bronx New York. Susan Louise Ryerson-Espino is an Evaluation Consultant at Ruth M. Rothstein CORE Center, Chicago. Betsy Eas twood is an Associate Professor, Department of Health & Nutrition Sciences, City Brooklyn College/City University of New York School of Public Health, Brooklyn. Sabrina Matoff-Stepp is affiliated with the Office of Women's Health, Health Resources Services Administration, Rockville, Maryland. Jessica Xavier is affiliated with Special Projects of National Significance, HIV-AIDS Bureau, Health Resources and Services Administration. These authors are writing on behalf of all the members of the Women of Color initiative (see Acknowledgments).

Please address correspondence to Arthur E. Blank, PhD, Associate Professor, Department of Family and Social Medicine, Albert Einstein College of Medicine, Bronx, New York 10461; Arthur.Blank@Einstein.yu.edu.

Acknowledgments

The authors are writing on behalf of the Women of Color initiative, and would like to thank all those who contributed to the paper, including Nancy Amodei, PhD: Clinical Associate Professor, Department of Pediatrics, University of Texas Health Sciences Center, San Antonio, Texas; Mary Comerford, MSPH: Consultant, Care Resources, Miami; Philip Farmer LMSW: Executive Director, Special Health Resources for Texas, Inc., Longview, Texas; Tina Henderson,PhD: Project Manager, JWCH Institute, Los Angeles; Kristina Kintziger, PhD: Department of Biostatistics, Georgia Health Sciences University, Augusta, Georgia; Nanmathi Manian, PhD: Senior Research Scientist, University Research Co., LLC/Center for Human Services; Claudia Martorell, MD, MPH, FACP: Director and Principal Investigator, the Research Institute, Springfield, Massachusetts; Cathy Simpson, PhD: Associate Professor, Department of Health Behavior, School of Public Health, University of Alabama at Birmingham; and Byrd Quinlivan, MD: Associate Professor of Medicine, Department of Infectious Diseases, University of North Carolina, Chapel Hill.

Notes

1. Centers for Disease Conrol and Prevention (CDC). CDC HIV/AIDS fact sheet: HIV/AIDS among women. Atlanta, GA: CDC, 2008. Available at: http://www.cdc.gov/hiv/topics/women/resources/factsheets/pdf/women.pdf.

2. Hodder SL, Justman J, Haley DF, et al. Challenges of a hidden epidemic: HIV prevention among women in the United States. J Acquir Immune Defic Syndr. 2010 Dec;55 Suppl 2:S69-73.

3. Horstmann E, Brown J, Islam F, et al. Retain HIV-infected patients in care: where are we? where do we go from here? Clin Infect Dis. 2010 Mar 1;50(5):752-61.

4. Centers for Disease Control and Prevention (CDC), National Center for Injury Prevention and Control. 15 leading causes of death, United States 2007 (table). Atlanta, GA: CDC, 2007. Available at: www.cdc.gov/injury/wisgars/leading_causes-death.html.

5. John Snow Inc. (JSI), Health Resources and Services Administration (HRSA). Enhancing access to quality HIV care for women of color: final report. Findings from the literature and resource review. Rockville, MD: HRSA, 2008.

6. Rimer BK, Gkanz K. Theory at a glance: a guide for health promotion practice (2nd ed.). Pub. No. 05-3896. Washington, DC: National Cancer Institute, National Institutes of Health, U.S. Department of Health and Human Services, 2005.

7. McLeroy KR, Bibeau D, Steckler A, et al. An ecological perspective on health promotion programs. Health Educ Q. 1988 Winter;15(4):351-77. [End Page 25]

8. Miles MS, Holditch-Davis D, Eron J, et al. An HIV self-care symptom management intervention for African American mothers. Nurs Res. 2003 Nov-Dec;52(6):350-60.

9. Johnson VD. Promoting behavior change: making healthy choices in wellness and healing choices in illness-use of self determination theory in nursing practice. Nurs Clin North Am. 2007 Jun;42(2):229-41.

10. Bandura A. Social learning theory. Englewood Cliffs, NJ: Prentice Hall, 1977.

11. Bandura A. Social foundations of thought and action: a social cognitive theory. Englewood Cliffs, NJ: Prentice Hall, 1986.

12. Allness DJ, Knoedler WH. The PACT model of community-based treatment for persons with severe and persistent mental illnesses: a manual for PACT start-up. Arlington, VA: National Alliance for the Mentally Ill (NAMI), 1998.

13. Bronfenbrenner U. Ecological systems theory. Annals of Child Development. 1989;6:187-1989;6:187-251.

14. Rosenstock I, Stretcher V, Becker M. The health belief model and HIV risk behaviour change. In: DiClemente RJ, Peterson JL, eds. Preventing AIDS: theories and models of behavioural interventions. New York, NY: Plenum Press, 1996.

15. Anderson RM. Revisitng the behavioral model and access to medical care: does it matter? J Health Soc Behav. 1995 Mar;36(1):1-10.

16. Rapp RC. The strengths perspective: proving "my strengths" and "it work." Soc Work. 2007 Apr;52(2):185-6.

17. Rapp RC, Siegal HA, Li L, et al. Predicting postprimary treatment services and drug use outcome: a multivariate analysis. Am J Drug Alcohol Abuse. 1998 Nov;24(4):603-15.

18. Zimmerman M. Psychological empowerment: issues and illustrations. Am J Community Psychol. 1995 Oct;23(5):581-99.

19. Saleebey D. The strengths perspective in social work practice: extensions and cautions. Soc Work. 1996 May;41(3):296-305.

20. Prochaska JO, Velicer WF. The transtheoretical model of health behavior change. Am J Health Promot. 1997 Sep-Oct;12(1):38-48.

21. Connell RW. Gender and power: society, the person and sexual politics. Stanford, CA: Stanford University Press, 1987.

22. Maslow AH. A theory of human motivation. Psychol Rev. 1943;50:370-396.

23. Friere P. Education for critical consciousness. New York, NY: Continuum Publishing Company, 1983.

24. Miller JB. Toward a new psychology of women. Boston, MA: Allen Lane/Penguin Books, 1978.

25. Balfour L, Kowal J, Tasca GA, et al. Development and psychometric validation of the HIV Treatment Knowledge Scale. AIDS Care. 2007 Oct;19(9):1141-8.

26. Cooper LA, Hill MN, Powe NR. Designing and evaluating interventions to eliminate racial and ethnic disparities in health care. J Gen Intern Med. 2002 Jun;17(6):477-86.

27. Shadish WR, Cook TD, Campbell DT. Experimental and quasi-experimental designs for causal inference. Boston, MA: Houghton Mifflin, 2001.

28. Green LW, Kreuter MW. Health program planning: an educational and ecological approach. New York, NY: McGraw-Hill, 2004.

29. Bartholomew KL, Parccel GS, Kok G, et al. Planning health promotion programs: an intervention mapping approach. San Francisco, CA: Jossey Bass, 2006. [End Page 26]

Footnotes

U.S. Department of Health and Human Services, Health Resources and Services Administration, HIV/AIDS Bureau, Special Projects of National Significance Projects. Enhancing Access to and Retention in Quality HIV Care for Women of Color 1) Demonstration Sites, and 2) Evaluation and Technical Assistance Center. Program Guidance. Announcement Number HRSA-09-126, October 2, 2008.

Research Areas

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Subject Headings

  • Health services accessibility -- United States.
  • AIDS (Disease) -- Patients -- Medical care -- United States.
  • Minority women -- Health and hygiene -- United States.
  • HIV-positive women -- Medical care -- United States.
  • AIDS (Disease) in women -- United States.
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