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.

This multisite, qualitative study examined the process by which persons living with HIV/AIDS (PLWHA) engage in primary HIV medical care for treatment. Using a grounded theory approach, the analysis of narrative data from semi-structured in-depth interviews with PLWHA (n = 76) led to the development of a model describing a cyclic process of engaging in--and falling out of--care. Perceptions of the client-provider relationship emerged as a central element of the process by which persons with HIV engaged--or remained--in care. Provider behaviors that were characterized as engaging, validating, and partnering facilitated engagement and retention in care; behaviors described as paternalistic served as barriers to care. Participants indicated that they desired a care partnership with an empathetic provider who had effective communication skills. These findings provide recommendations for health providers to engage and retain hard-to-reach PLWHA in timely and appropriate HIV care and services.

This paper examines factors associated with engaging socially marginalized HIV-positive persons in primary care using interview and chart review data from 984 clients presenting for services at 10 agencies participating in a multisite demonstration project. The sample was predominantly minority, and many reported drug and mental health problems as well as housing instability. At baseline, roughly half of the participants were engaged in HIV primary care; the other participants were either not at all engaged in HIV primary care or somewhat engaged in care. Those who were somewhat engaged in care were very similar to those who were not at all engaged in care, and significantly different than those who were fully engaged in care across a number of demographic, health status/utilization, and barriers to care items and fared equally poorly with regard to engagement in care at 12-month follow-up. In 12-month longitudinal analyses, 58% of those not engaged at baseline ( n = 517) became more fully engaged in care. In the final multivariate model that controlled for disease stage, decreases in drug use, structural barriers, and unmet needs were associated with engagement in care. Interventions that focus on decreasing structural barriers and unmet support services needs, addressing negative health beliefs and attending to drug use are promising public health strategies to engage marginalized HIV-positive persons in HIV primary care.

Racial/ethnic minorities living with HIV and behavioral health co-morbidities are more likely to be disengaged from HIV primary care. Peer programs have been effective in HIV outreach and prevention but effectiveness of such programs for retention in care and viral suppression is understudied. Subjects (n = 348) were randomized in equal allocation to a peer navigation and education intervention versus standard clinical care at three urban clinics in the United States. The intervention group received seven structured interventions plus weekly contact to address medical and social needs. Primary outcomes included time-to-first 4-month gap in HIV care and viral suppression up to 12 months of follow-up. Intention-to-treat analysis showed no difference between groups on 4-month gap in HIV primary care, but subgroup analysis showed a suggestive effect of the peer intervention in reducing gaps in care among stably housed subjects. Fully compliant subjects in the peer intervention experienced significantly fewer 4-month gaps in HIV primary care (p < 0.0001). Those in the peer group who had more clinical face-to-face encounters in the first 3 months were also significantly more likely to have better retention in care (p = 0.04). There were no significant differences between any study subgroups in viral suppression at 12 months. Peer interventions may improve retention in primary care among subgroups of people living with HIV from racial/ethnic minority communities, although such improved retention may not increase viral load suppression. Attending and completing structured educational sessions along with early, intensive contact with peers could improve retention in HIV primary care for patients. Future peer programs should consider training on housing referral systems to help increase retention for patients who are not stably housed. clinicaltrials.gov registration number: NCT01616940.

Engagement in HIV primary care and the receipt of antiretroviral therapy when clinically indicated offers patients the opportunity to experience HIV disease as a chronic illness. Yet many people, particularly those with comorbid mental health or substance abuse conditions and those who face multiple barriers to care, cycle in and out of care and thus can not reap the life-prolonging benefits of antiretroviral therapy. Although there is evidence about the impact of different interventions on adherence to HIV medications, there is little information about the impact of interventions on engagement or retention in HIV primary care among the hard-to-reach. In this multisite, national study, we contribute new information by exploring the relationship between outreach program contacts and retention in care over a 12-month period among participants in a demonstration project to promote engagement and retention in HIV primary care. We found that when participants received nine or more contacts during the first 3 months of their programs, they were about half as likely to have a substantial gap (defined as 4 months or more) in primary care during the first 12 months of follow-up. This finding remained after controlling for baseline CD4 count. These findings can be used to improve the effectiveness of programs to increase engagement and retention in HIV primary care among the hard-to-reach.

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Literature describing the roles and activities of peers working in HIV care is limited. Evaluations of the impact of peer-based behavior-change interventions reveal mixed results, due in part to varied program aims, structure, evaluation mechanisms, and training. Peers themselves are important resources to address these concerns and lay the groundwork for developing improved programs and evaluation strategies. This qualitative article describes peer support in HIV care and treatment from the perspective of 23 HIV-positive peers across the United States. Peers reported that peer characteristics (HIV-status, common experiences, and self-care) enable them to engage clients. Peers also required flexibility to respond to client needs, and their activities spanned four types of social support: informational, emotional, instrumental, and affiliational. We recommend peer programs and evaluations accommodate the broad scope of peer work by acknowledging the need for flexibility and activities that are not always directly related to clients' HIV care and treatment.

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