Perspectives of People Living With HIV Toward Healthcare Providers: Insights Into Multicultural Health Literacy
Long-Middleton, Ellen R.;
Nicholas, Patrice Kenneally;
Corless, Inge B.;
Portillo, Carmen J.;
Webel, Allison R.;
Holzemer, William L.;
Mogobe, Keitshokile Dintle;
Nokes, Kathleen M.;
Eller, Lucille Sanzero;
Sabone, Motshedisi Boitumelo;
Gakumo, C. Ann;
Ellen R. Long-Middleton, PhD, RN, FNP, FNAP; Patrice Kenneally Nicholas; Inge B. Corless; Carmen J. Portillo; Allison R. Webel; Marta Rivero-Mendez; William L. Holzemer; Keitshokile Dintle Mogobe; Jeanne Kemppainen; Kathleen M. Nokes; Yvette Cuca; Paula Reid; Lucille Sanzero Eller; Dean Wantland; Motshedisi B. Sabone; Solymar Solis-Baez; C. Ann Gakumo; Rachel Fortinsky; Carol Dawson-Rose
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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.
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