Understanding HIV care delays in the US South and the role of the social-level in HIV care engagement/retention: a qualitative study Recommended Citation Understanding HIV care delays in the US South and the role of the social-level in HIV care engagement/retention: a qualitative study (original) (raw)
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International Journal for Equity in Health , 2014
Background: In a significant geographical shift in the distribution of HIV infection, the US South - comprising 17 states - now has the greatest number of adults and adolescents with HIV (PLHIV) in the nation. More than 60% of PLHIV are not in HIV care in Alabama and Mississippi, contrasted with a national figure of 25%. Poorer HIV outcomes raise concerns about HIV-related inequities for southern PLHIV, which warrant further study. This qualitative study sought to understand experiences of low-income PLHIV on the AIDS Drug Assistance Program in engagement and retention in continuous HIV care in two sites in Alabama. Methods: The study was designed using grounded theory. Semi-structured interviews with 25 PLHIV explored experiences with care linkage, reported factors and behaviors affecting engagement/retention in continuous HIV care, including socio-economic factors. To triangulate sources, 25 additional interviews were conducted with health and social service providers from the same clinics and AIDS Service Organizations where clients obtained services. Across the narratives, we used the HIV care continuum to map where care delays and drop out occurred. Using open coding, constant comparison and iterative data collection and analysis, we constructed a conceptual model illustrating how participants described their path to HIV care engagement and retention. Results: Most respondents reported delayed HIV care, describing concentric factors: psychological distress, fear, lack of information, substance use, incarceration, lack of food, transport and housing. Stark health system drop out occurred immediately after receipt of HIV test results, with ART initiation generally occurring when individuals became ill. Findings highlight these enablers to care: Alabama's 'social infrastructure'; 'twinning' medical with social services, 'social enablers' who actively link PLHIV to care; and 'enabling spaces' that break down PLHIV isolation, facilitating HIV care linkage/retention. Conclusions: Ryan White-funded programs, together with housing, food and psychological support were pre-conditions for participants' entry and retention in HIV care. The path to achieving continuous HIV care for individuals at risk of lack of entry or delayed HIV care requires robust social-level responses, like in Alabama, that address physical and mental health of clients and directly engage the particular social and economic contexts and vulnerabilities of southern PLHIV.
AIDS Care, 2015
We used the US-based MarketScan ® Medicaid Multi-state Databases to determine the unweighted proportion of publically insured persons with HIV that were retained, continued, and reengaged in care. Persons were followed for up to 84 months. Cox proportional hazards models were conducted to determine factors associated with gaps in care. Of the 6463 HIV cases identified in 2006, 61% were retained during the first 24 months, and 53% continued in care through 78 months. Between 8% and 30% experienced a gap in care, and 59% of persons who experienced a gap in care later reengaged in care. Persons with one or more Charlson comorbidities (HR 0.72, 95% CI 0.64-0.81), ages 40-59 (0.79, 0.71-0.88), mental illness diagnosis (0.79, 0.72-0.87), hepatitis C co-infection (0.83, 0.75-0.93), and female sex (0.86, 0.78-0.94) were less likely to experience a gap in care. Between 27% and 38% of those not retained in care continued to receive HIV-related laboratory services. This Medicaid claims database combines features of both clinic visits-based and surveillance lab-based surrogate measures to give a more complete picture of engagement in care than single-facility-based studies.
Aids Patient Care and Stds, 2007
This qualitative study investigated the process of engagement in HIV medical care from the perspective of people living with HIV/AIDS (PLWHA). In-depth interviews were conducted with 76 participants in six cities. All participants were considered underserved because of histories of substance use, mental illness, incarceration, homelessness, or cultural barriers to the traditional health care system. A semistructured interview guide elicited narratives related to health care and the role of program interventions in facilitating access to care. Data analysis revealed that participants cycled in and out of care, a process that was influenced by (1) their level of acceptance of being diagnosed with HIV, (2) their ability to cope with substance use, mental illness, and stigma, (3) their health care provider relationships, (4) the presence of external support systems, and (5) their ability to overcome practical barriers to care. Outreach interventions played a role in connecting participants to care by dispelling myths and improving knowledge about HIV, facilitating access to HIV care and treatment, providing support, and reducing the barriers to care. The findings suggest that outreach programs can interrupt this cyclical process and foster sustained, regular HIV care for underserved PLWHA by conducting client-centered risk assessments to identify and reduce sources of instability and improve the quality of provider relationships; implementing strategies that promote healthy practices; creating a network of support services in the community; and supporting adherence through frequent follow-ups for medication and appointment keeping.
The South Carolina rural–urban HIV continuum of care
AIDS Care, 2016
The HIV continuum of care model is widely used by various agencies to describe the HIV epidemic in stages from diagnosis through to virologic suppression. It identifies the various points at which persons living with HIV (PLWHIV) within a population fail to reach their next step in HIV care. The rural population in the Southern United States is disproportionally affected by the HIV epidemic. The purpose of this study was to examine these rural-urban disparities using the HIV care continuum model and determine at what stages these differences become apparent. PLWHIV aged 13 years and older in South Carolina (SC) were identified using data from the enhanced HIV/AIDS Reporting System. The percentages of PLWHIV linked to care, retained in care, and virologically suppressed were determined. Rural versus urban residence was determined using the Office of Management and Budget classification. There were 14,523 PLWHIV in SC at the end of 2012; 11,193 (77%) of whom were categorized as urban and 3305 (22%) as rural. There was no difference between urban and rural for those who had received any care: 64% versus 64% (p = .61); retention in care 53% versus 53% (p = .71); and virologic suppression 49% versus 48% (p = .35), respectively. The SC rural-urban HIV cascade represents the first published cascade of care model using rural versus urban residence. Although significant health care disparities exist between rural and urban residents, there were no major differences between rural and urban residents at the various stages of engagement in HIV care using the HIV continuum of care model.
Efforts Targeting Factors of Health Disparities that Impair HIV Treatment Engagement
2019
Health disparities exist in Northeast Florida. Some locations experience morbidities at higher rates than others. Health zone 1 is a prime example. Differences in disease rates are interlaced with the social determinants of health, (SDOH). Long-standing social and structural influences of disparities are beyond the scope of Ryan White programs. However, empowerment for health promotion is a strategy for targeting health disparities. The Theory of Health Empowerment targets sense of agency and offers some leverage for helping people living with HIV/AIDS, (PLWHA) despite environments blemished by SDOH. Eclectic leadership occurring in a climate of respectful point-counter point discussions established the context for implemented projects in Northeast Florida. Nine activities directed efforts to reduce disparities. These activities are in the infancy stage of development. Some successes have been achieved, but much more remains to be accomplished to increase overall viral suppression a...
AIDS Patient Care and STDs, 2010
Rationale: Despite the benefits and availability of drug treatment in Western countries, research has shown low utilisation rates, especially by mothers. Studies have indicated internal barriers (e.g., shame) and external/structural barriers (e.g., poverty) to women's utilisation of drug treatment, but little is known about the interrelated axes of marginalization that create such barriers and, even less, facilitators of treatment. A promising avenue for examining this path may be the theoretical perspective of intersectionality, which has often been used to illustrate how women's experiences are shaped by gender in conjunction with other factors, including class, age, and race. Objective: The purpose of the study was to obtain a deeper understanding of the barriers and facilitators of drug-abuse treatment among substance-abusing mothers, including practical implications. Methods: In-depth interviews were conducted with 25 Israeli-born and immigrant mothers known to child protection and welfare agencies. A critical feminist theoretical perspective informed by intersectionality was adopted to examine the barriers to and facilitators of their enrolment in drug treatment. Results: Thematic analysis revealed three themes in the interrelationships of different factors and treatment utilisation. First, the threat of losing child custody was interrelated with lack of social and family support, immigration status, being post-partum, and economic hardship to shape barriers to treatment. Second, a set of coping resources originating in their marginality was interrelated with opportunity for treatment. Last, the participants suggested changes that would encourage treatment utilisation, with focus on non-judgmental referral procedures. Conclusions: The findings indicated that barriers and facilitators are interrelated and co-constructed, reflecting the interlocking of power and oppression across the axes of class, gender, and ethnicity. Focusing on social inequality and gender in policies and research on women's drug treatment, the findings may inform the development of strategies to overcome treatment barriers.
AIDS Educ Prev, 2017
The 2020 National HIV AIDS Strategy (NHAS) sets a target of 90% of diagnosed people living with HIV (PLWH) retained in HIV care. Access to Care (A2C) was a national HIV linkage, re-engagement, and retention in care program funded by AIDS United with support from the Corporation for National and Community Service that aimed to link and retain the most vulnerable PLWH into high-quality HIV care. This study explores the barriers and facilitators of implementing the A2C program from the perspective of program staff. Ninety-eight qualitative interviews were conducted with staff at implementing organizations over the 5 years of the project. Barriers included challenges with recruiting and retaining participants, staffing and administration, harmonizing partnerships, and addressing the basic and psychosocial needs of participants. Facilitators included strong relationships with partner organizations, flexible program models, and
Patient Education and Counseling, 2011
We read with interest the article by Konkle-Parker, Erlen, and Dubbert in which the authors describe feasibility of conducting a remote telephone-delivered HIV medication adherence intervention study in the southern United States [1]. We are most interested in Konkle-Parker et al.'s discussion of the feasibility of using telephones as a format for intervention delivery. In this study, the two intervention sessions conducted in-clinic were more often completed than the six intervention sessions by telephone. Participants were often unreachable for their telephone intervention sessions despite researchers' request that participants provide three telephone numbers and the fact that researchers made up to nine call attempts and sent letters in attempt to complete the scheduled telephone intervention sessions. Konkle-Parker et al. posited reasons for difficulty making telephone contact with participants included participants' inconsistent telephone access and providing incentives for in-clinic interventions but not telephone interventions. It is certainly likely that incentivizing participants would have led to a greater number of telephone intervention contacts and Konkle-Parker et al. suggest future researchers do this. Konkle-Parker et al. also suggest future researchers take into consideration participants' inconsistent access to telephones, a poignant fact of life for many rural, poor patients living with HIV.