Marginalization and Community Perception of HIV Care, Treatment, and Support on Mfangano Island, Kenya

Marginalization and Community Perception of HIV Care, Treatment, and Support on Mfangano Island, Kenya Annie Chang, MD, MS, Kathryn J. Fiorella, PhD, MPH, Matthew D. Hickey, MD, Charles R. Salmen, MD, MPHIL, Elizabeth A. Bukusi, MBChB, M.Med, MPH, PhD, Craig R. Cohen, MD, and Colette L. Auerswald, MD, MS What Is the Problem? • In rural sub-Saharan Africa, the human immunodeficiency virus (HIV)/AIDS epidemic has exerted effects on nearly every aspect of life. Yet despite the pandemic’s near ubiquitous impacts, major barriers to HIV care, treatment, and support persist. • Compounding the barriers to care is the incredible complexity and diversity of experience across different sociocultural contexts. • Mfangano Island is a continental island that lies in the eastern part of Lake Victoria. The region around Lake Victoria has the highest HIV prevalence in Kenya (15.1% in 2012), and Mfangano has an estimated adult prevalence of 27%, which is nearly five times the national HIV prevalence (5.6%). What Is the Purpose of This Study? • This exploratory community-based participatory study aimed to generate an explanatory model about how geographic and socioeconomic marginalization shape community perception of HIV care, treatment, and support among rural communities of Mfangano Island, Kenya. What Are the Findings? • Focus group participants described their lived experience within an ecological framework with the following themes: readiness at the individual level, social capital at the household level, and collective efficacy at the community level. • Potential solutions were also described within this framework, namely, enabling encouragement at the individual level, enhancing productivity at the household level, and addressing underlying socioeconomic inequities at the community level. • Changing community perception may overcome HIV stigma to enable individual readiness to seek care. • Access to care and treatment enhances productivity and hence social capital in HIV-affected households. • Addressing socioeconomic inequities at the community level increases access to social and instrumental support, and thus may decrease risk and vulnerability for HIV/AIDS. • Findings underscore the salience of community-based strategies in addressing interrelated inequities in resource-limited areas that influence how rural communities respond to the HIV/AIDS epidemic. [End Page 111] Who Should Care Most? • Researchers and health policymakers focusing on HIV care, treatment, and support, especially in sub-Saharan Africa. • Community-based organizations and health providers working in rural, resource-limited communities with high HIV prevalence. • Health agencies and ministries serving rural, resource-limited communities with high HIV prevalence. Recommendations for Action • This study supports community-based interventions that address community perception of HIV/AIDS as well as its contributing socioeconomic factors, which may enhance linkage in HIV care, treatment, and support. • Future studies should examine the relationship between social capital and social networks, especially in resource-limited areas in which community efficacy itself is often the most important, if not the only, resource for support. • Livelihood interventions that increase and diversify resources available to the community may address underlying socioeconomic inequities that further heighten risk and perpetuate vulnerability for HIV/AIDS. [End Page 112] Annie Chang University of California, Berkeley–University of California, San Francisco Joint Medical Program (UC Berkeley-UCSF JMP) Global Health Sciences, University of California, San Francisco (UCSF) Ventura County Medical Center, Family Medicine Residency Program Kathryn J. Fiorella Department of Population Medicine and Diagnostic Sciences, Cornell University Mfangano Island Research Group, Organic Health Response Matthew D. Hickey Mfangano Island Research Group, Organic Health Response Division of General Internal Medicine, Department of Medicine, University of California, San Francisco (UCSF) Microclinic International Charles R. Salmen Mfangano Island Research Group, Organic Health Response Microclinic International Department of Family and Community Medicine, University of Minnesota Elizabeth A. Bukusi Kenya Medical Research Institute Bixby Center for Global Reproductive Health, University of California, San Francisco (UCSF) Craig R. Cohen Department of Obstetrics, Gynecology and Reproductive Sciences, University of California, San Francisco (UCSF) Colette L. Auerswald University of California, Berkeley–University of California, San Francisco Joint Medical Program (UC Berkeley-UCSF JMP) School of Public Health, University of California, Berkeley (UC Berkeley) Copyright © 2018 Johns Hopkins University Press

Focus group · Geography · Participatory action research · Socioeconomics · Sociology · Adolescent Sexual and Reproductive Health · Anthropology · Demography · Gender Studies · Global Maternal and Child Health · HIV/AIDS Research and Interventions · Medicine · Gerontology