Many people living with HIV/AIDS (PLWHA) are not receiving antiretroviral therapy (ART) and are not engaged in care. Gardner and colleagues (2005) found that 40% of newly diagnosed individuals with passive referrals had not initiated HIV medical care within 6 months of diagnosis. Krentz, Auld, and Gill (2004) found that 39% of patients presenting for initial HIV care had CD4 counts <200, despite the standard of care recommendation that patients begin ART if their CD4 counts are less than 350. Teshale et al. (2005) estimate that only 60% of PLWHA in the USA are engaged in HIV care (Perkins, Meyerson, Klinkenberg, & Iaffoon, 2008; Samet et al., 2001); 56% of those eligible for treatment are receiving ART. Many on ART do not successfully adhere at high enough levels (i.e., 90–95% of prescribed doses) for optimal treatment benefit (Arnsten et al., 2001; Bangsberg, Hecht, Charlebois, Chesney, & Moss, 2001; Bangsberg et al., 2006; Gardner, Burman, Steiner, Anderson, & Bangsberg, 2009; Holzemer et al., 2006; Howard et al., 2002; Liu et al., 2001).

Ancillary services have arisen to facilitate access to care for PLWHA, including those funded by the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act: case management, drug reimbursement, home healthcare, transportation and food assistance, mental health and substance abuse treatment, as well as treatment education/treatment advocacy (TA), the present study’s focus. Receipt of ancillary services has been associated with primary care entry (Gardner et al., 2005; Messeri, Abramson, Aidala, Lee, & Lee, 2002), ART use and adherence (Katz et al., 2001; Magnus et al., 2001), treatment retention (Ashman, Conviser, & Pounds, 2002; Chan, Absher, & Sabatier, 2002; Convisier & Pounds, 2002; Lo, MacGovern, & Bradford, 2002; Sherer et al., 2002), care services utilization (Soto, Bell, & Pillen, 2004), and HIV health literacy (van Servellen et al., 2005).

Few studies have explored the process by which ancillary care programs may facilitate improved provider–patient relationships. Ancillary services may facilitate greater rapport between patients and providers and promote engagement in care (Mallinson, Rajabiun, & Coleman, 2007) through active outreach (Cabral et al., 2007), especially for those with comorbid substance use or mental health disorders (Calsyn, Klinkenberg, Morse, Miller, & Cruthis, 2004).

We explored how one type of ancillary care service – TA – might improve engagement in care, ART initiation, and ART adherence. TA programs represent feasible and potentially cost-effective interventions that have been sustained across the US AIDS service organizations (ASOs). TA aims to empower patients through education and client-centered counseling regarding HIV, ART initiation and adherence, and other health issues; advocating on behalf of patients with providers; and making referrals to access healthcare services and clinical trials. TA also seeks to link PLWHA into effective and timely care, by facilitating navigation through the medical care system and adherence. We conducted a qualitative process evaluation of one well-established TA program at a large ASO, with the following research questions: (1) How does TA help engage PLWHA in care? (2) How does TA help PLWHA initiate ART when appropriate? and (3) How does TA help PLWHA improve adherence?

In this study, TA clients and medical providers said TA contributed to client engagement in care, use of ART, and treatment adherence. TAs’ unique services, which are not available to clients through other programs, include providing holistic care, being a bridge to providers, advocating for clients, and building self-empowerment. Participants viewed TAs as accessible and knowledgeable about treatment issues and the landscape of local HIV care, allowing them to match clients and providers based on clients’ holistic needs. Because of their focus on treatment issues, TAs had a deep understanding of the contextual issues affecting clients’ treatment experiences. In addition to reaching out to clients, TA plays a unique role in the HIV care system by actively supporting the relationship between client and provider through education and advocacy. TAs were able to empower clients to learn how to become better consumers of their own care. Because TA was embedded within an ASO, clients could seek advice, validate information, and gain skills for their own self-advocacy relatively free from concerns or mistrust about the medical establishment.

The objective of TA is to help clients understand and adhere to appropriate treatment regimens. Since healthcare providers may be too busy to answer questions or explain HIV treatment options (Harman, Amico, & Johnson, 2005), TA fills an important gap. TAs provide information about HIV and treatments that validate provider recommendations or offer alternative options that may better address clients’ needs. TAs can help clients develop strategies for supporting adherence. Education that helps support beliefs about the importance of adherence can improve adherence (Schneider, Kaplan, Greenfield, Li, & Wilson, 2004).

TAs are able to incorporate a holistic view, taking the time to understand clients’ treatment issues in the context of their whole lives; they can work with clients to develop a deeper relationship in which psycho-social and other comorbidity issues related to care and treatment can be addressed. In addition, TA provides a critical component in quality of care. TAs are able to pay attention to individual circumstances and make appropriate referrals to a variety of social and medical services.

The TA program builds a unique relationship among clients, TAs, and providers, allowing for a broader approach to HIV/AIDS care and treatment. Although other adjunct services may increase linkage to primary care providers (Craw et al., 2008; Katz et al., 2001; Sherer et al., 2002), TA is focused primarily on HIV/AIDS treatment education and advocacy. Unlike other ancillary social services, TA is necessarily staffed by professionals who have specific expertise in HIV/AIDS virology, pathogenesis, and treatment therapies and strategies. TAs help clients to have positive experiences with healthcare by educating clients about the healthcare system and matching them with appropriate providers. These positive experiences appear to facilitate better rapport with providers, which may ultimately improve engagement in care and adherence (Mallinson et al., 2007; Schneider et al., 2004).

This study had several limitations. Participants were recruited from one ASO; findings may not generalize to TA experiences in other organizations, and TAs’ and providers’ views may not represent providers outside of this agency. Consistent with qualitative methodology, our purpose was not to seek a representative sample, but instead to elicit the range of experiences at a particular TA program. Because APLA’s TA program immediately connects clients with care, we could not elicit perspectives of PLWHA who were not in care. Findings could have been affected by a social desirability bias: clients may have felt compelled to provide positive comments about the program. However, interviewers stressed that responses were kept confidential, research staff were not associated with the TA program, and participation would not affect their standing in TA. Future research should attempt to explore a fuller range of clients served by TA, especially female clients who may have child-care issues and monolingual Spanish speaking clients. We did not randomize clients to TA, so we do not know if their satisfaction with TA, and perceptions of TA’s effectiveness, were due to selection bias. Next steps for research include the need for randomized controlled trials to test the effects of TA on engagement in care and adherence over time.

There are several key recommendations for developing or improving TA services that can be gleaned from our results. TA services were seen as particularly valuable because they empower clients to advocate for their own medical needs in addition to providing comprehensive treatment information. In this way, TAs may help those who have little power in the provider–patient relationship to become better advocates for themselves. The providers in this study appreciated TA since they often do not have time to educate patients and find that more educated clients meet treatment goals more efficiently. The TA–client–provider relationship is important to foster since it goes beyond the provision of education and adherence training; providing TA services in a social service setting may help by filling a critical gap in traditional medical and ancillary social services provided for PLWHA.