Ellen R. Long-Middleton, PhD, RN, FNP, FNAP1
Patrice Kenneally Nicholas, DNSc, MPH2
Inge B. Corless, PhD3
Carmen J. Portillo, PhD4
Allison R. Webel, PhD, RN5
Marta Rivero-Mendez, DNS6
William L. Holzemer, PhD7
Keitshokile Dintle Mogobe, PhD8
Jeanne Kemppainen, PhD9
Kathleen M. Nokes, PhD10
Yvette Cuca, PhD, MPH, MIA4
Paula Reid, PhD11
Lucille Sanzero Eller, PhD12
Dean Wantland, MSN, MS13
Motshedisi B. Sabone, PhD14
Solymar Solis-Baez, BA15
C. Ann Gakumo, PhD16
Rachel Fortinsky, *17
Carol Dawson-Rose, PhD, RN, FAAN18
(1)College of Nursing and Health Sciences, University of Vermont, Burlington, VT, USA
(2)Massachusetts General Hospital Institute of Health Professions, Boston, MA, USA
(3)MGH Institute of Health Professions, Boston, MA, USA
(4)School of Nursing, University of California, San Francisco, San Francisco, CA, USA
(5)Frances Payne Bolton School of Nursing, Case Western Reserve University, Cleveland, OH, USA
(6)Medical Sciences Campus, School of Nursing, University of Puerto Rico, San Juan, PR
(7)School of Nursing – Newark & New Brunswick, Rutgers University, The State University of New Jersey, Newark, NJ, USA
(8)School of Nursing, University of Botswana, Gaborone, Botswana
(9)School of Nursing, The University of North Carolina at Wilmington, Wilmington, NC, USA
(10)Hunter-Bellevue School of Nursing, Hunter College (retired), New York, NY, USA
(11)University of North Carolina Wilmington, Wilmington, NC, USA
(12)College of Nursing, Rutgers, the State University of New Jersey, Newark, NJ, USA
(13)Community Health Systems, University of California, San Francisco, San Francisco, CA, USA
(14)Department of Nursing Education, University of Botswana, Gaborone, Botswana
(15)School of Nursing, University of Puerto Rico, Medical Sciences Campus, San Juan, PR, Puerto Rico
(16)School of Nursing, University of Alabama at Birmingham, Birmingham, AL, USA
(17)Brigham and Women's Hospital, Boston, MA, USA
(18)School of Nursing Community Health Systems, University of California, San Francisco, San Francisco, CA, USA
Purpose: To further our understanding about relationship influences that impact health literacy, the purpose of this study was to characterize the perspectives of a culturally diverse group of people living with HIV (PLWH) toward their health care providers. Health literacy is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate decisions related to their health. Low health literacy is associated with poor health outcomes. Use of preventive services, knowledge about medical conditions and treatment, rates of hospitalization, health status, and health care costs are all linked to health literacy. Although low health literacy can occur in any population, the burden of low health literacy disproportionately affects racial and ethnic minorities and individuals with low income levels. For PLWH, lower health literacy is associated with lower CD4 cell counts, higher viral loads, and a decreased likelihood of taking antiretroviral medication. Adequate health literacy is critical for treatment adherence and for promoting healthy behaviors in the daily lives of PLWH. In order to achieve and maintain HIV viral suppression, adherence to HIV treatment regimens requires a constant, near-perfect medication adherence rate for many medications. Further, the ability to seek and sustain treatment is contingent on one’s ability to navigate a complex health care system. Proficiency in health literacy skills is critical to this process.
Methods: Twenty-eight focus groups consisting of people living with HIV were conducted in eight sites representing multicultural backgrounds in the United States, Puerto Rico and Botswana. Responses from audio-recorded focus group interviews were analyzed using content analysis.
Results: Five themes emerged from the data that exemplified characteristics and relationship qualities valued by the participants living with HIV in their health care providers – partnership, knowledgeable health care provider, understandable language, respect, and knowing the person. Participants valued respectful partnership relationships with a knowledgeable health care provider who used understandable language and regarded them as a person of worth.
Conclusion: Relationship quality between patients and health care providers was central to facilitating and enhancing the health literacy of PLWH and likely their retention in care.
