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Abstract

Background:

HIV testing and linkage to care are critical first steps along the care continuum. Targeted efforts are needed in the South to achieve the goals of the National HIV/AIDS Strategy, and qualitative examination of testing and linkage to care from the perspective of professionals in the field can provide nuanced insight into the strengths and limitations of a care system to inform improvement efforts. These issues are explored in North Carolina (NC), with potential applicability to other Southern states.

Methods:

Twenty-one interviews were conducted with professionals in the HIV prevention and care systems in NC. Interviews were analyzed for emergent themes.

Results:

Individuals’ access barriers, aspects of clinics and clinical care, challenges for community-based organizations, stigma, and the role of the NC Department of Health and Human Services were identified as themes affecting testing and linkage.

Discussion:

These findings can inform efforts to address HIV testing and linkage to care in NC. This approach may provide beneficial insight for other systems of care.

Keywords

HIV/AIDS testing linkage to care qualitative research health providers

Introduction

The Southern region of the United States, a heterogeneous geographic census area comprised of 16 states (Delaware to Texas) and the District of Columbia,¹ is the current epicenter of the HIV pandemic in the United States. This region has the highest HIV incidence rates in the nation, and people living with HIV (PLWH) in the South experience worse clinical outcomes than those in other regions, with higher rates of AIDS-related morbidity and mortality.^2
–4 The disproportionate burden of HIV/AIDS in the South has been attributed to numerous social, structural, and policy factors including high HIV-related stigma and poverty rates, pronounced HIV-related racial disparities, lack of accessible HIV providers in rural areas,⁵ and state policies that impede testing and treatment.⁶

The National HIV/AIDS Strategy (NHAS), updated in 2015, articulates goals, action steps, and indicators for a more coordinated and effective response to the HIV epidemic.⁷ These indicators include an increase in the percentage of PLWH who know their serostatus to at least 90% and an increase in the proportion of newly diagnosed patients linked to medical care within 1 month of diagnosis to 85%. Additionally, disparities in HIV infection in the South are targeted. Consequently, effective interventions in the South are urgently needed to improve outcomes across the continuum in order to achieve the NHAS goals.

The continuum of engagement in HIV care proceeds from individuals who are unaware of their HIV status, all the way to those are actively engaged in their HIV medical care.^8
–10 Identifying people who are HIV positive and unaware of their status and linking them to HIV care is important for the health of individuals and the public and constitute critical first steps along the continuum leading to viral suppression.¹¹ People who are aware of their HIV-positive status are less likely to engage in risky sexual behaviors that may infect others.^12,13 Additionally, if linkage to HIV care successfully occurs, and viral suppression is achieved through the effective use of antiretroviral therapy, personal health is improved and the risk of transmitting the virus to uninfected sexual partners is greatly diminished.^14,15

North Carolina

North Carolina (NC) shares historical, cultural, socioeconomic, and public health commonalities with the neighboring Southern region states, including a larger proportion of African Americans than other regions, high poverty rates, a relatively high proportion of rural residents, a high prevalence of social conservatism, and pronounced racial/ethnic health disparities.⁶ These commonalities suggest that there would be significant overlap in the factors affecting engagement in HIV testing and care within the Southern states.

NC ranked eighth in the nation in 2012 for the number of new HIV diagnoses out of 50 states, the District of Columbia, and 6 territories reporting HIV diagnoses to the Centers for Disease Control and Prevention (CDC).¹⁶ As in other parts of the country, African Americans in NC are disproportionally affected by HIV, and the rate of new HIV diagnoses for non-Hispanic African American adults and adolescents in NC in 2012 was nearly 9 times greater than for non-Hispanic whites (53.2 versus 6.0 per 100 000, respectively).¹⁷ In addition, in 2012, a total of 35 150 people were estimated to be HIV positive with an estimated 6,350 individuals unaware of their HIV status. To address the need to identify all PLWH, the state of NC sponsors HIV testing at sites across the state including local health departments, county jails, substance abuse programs, and other community-based organizations.¹⁸

HIV infection has been a name-based, legally reportable infectious disease in NC since 1990; anonymous testing was discontinued in 1997. All medical providers who diagnose or treat patients with HIV must report the case to the patient’s county health department, which then reports the diagnosis to the NC State Division of Public Health. New cases are immediately forwarded to disease intervention specialists (DIS), employees of the NC Department of Health and Human Services (NCDHHS) who interview patients for contact tracing and partner notifications. DIS also refer patients to medical care and other services.¹⁸

In 2011, NC created a new DIS position called a state bridge counselor (SBC) whose primary role is to facilitate timely linkage to HIV care. The DIS who first interviews a newly diagnosed patient is charged with assisting him or her to attend the first HIV medical care appointment. Afterward, the SBC follows up to ensure that the patient attended the initial appointment and plans to continue his or her medical care. The SBC will continue to work with the patient if the first appointment is not kept, or the patient expresses reluctance to fully engage in care. DIS and SBCs work within the state’s 10 Ryan White Part B regional networks of care to provide these services.

HIV treatment cascades have received significant attention recently as important tools to identify gaps and inform targeted improvements in systems and services.¹⁹ Qualitative examination of the care continuum may also provide a deeper, more nuanced understanding of the strengths and limitations in systems of care that can provide critical information to inform improvement efforts.²⁰ Professionals working in the prevention and treatment systems provide a unique and understudied perspective on the continuum of care.

This qualitative study investigates the perspective of these professionals working within NC, focusing on barriers to and facilitators of HIV testing and linkage to care in the state. This research was part of the baseline assessment conducted for the NC-LINK project, a joint effort between NCDHHS, University of North Carolina at Chapel Hill, and Duke University, funded through the Health Resources and Services Administration. NC-LINK aims to increase the number of PLWH engaged in consistent care through statewide, innovative interventions along the HIV continuum of care in NC. The baseline assessment, as part of the larger NC-LINK outcome evaluation plan, was conducted independently from program development activities. This case study of facilitators and barriers associated with HIV testing and linkage to care in NC may have applicability to other Southern states.

Methods

Twenty-one in-depth interviews were conducted with professionals in the HIV prevention and care systems in NC during the summer of 2012. Interviews were conducted by trained personnel using a semistructured interview guide either in-person or over the phone. Questions explored the barriers and facilitators that participants perceived in HIV testing, linkage to care, and retention/reengagement in NC, and their suggestions for improvement. Interviews were recorded and transcribed verbatim. The content analyzed here focuses on testing for HIV and linkage to care in NC, see Berger et al²¹ for findings related to retention and reengagement in HIV care.

Recruitment

Participants were purposively sampled for geographical variation and to represent a range of organization types and job responsibilities involved in the HIV prevention and care systems in NC. Some participants were known to research team members, and others were identified by their association with one of the Ryan White Part B Regional Networks of Care or by referrals from other participants. Participants were offered a US$25 gift certificate for participation, though the incentive was not universally accepted. The study protocol was approved by the Institutional Review Boards at the Duke University School of Medicine and the NC Division of Public Health.

Data Analysis

All qualitative interviews were digitally recorded, professionally transcribed verbatim, and reviewed by the interviewers; identifying information was removed from the transcripts prior to analyses. The analytic approach was informed by grounded theory.²² Two researchers independently analyzed the interviews using QSR International (Doncaster, Victoria, Australia) NVivo 10 software and individually coded all transcripts for emergent themes. Analyses were compared, discrepancies between the coding were discussed, and consensus was achieved. Primary themes were identified as the relationships between the codes were explored, and comparisons were made within and across respondents. The analyses included here focus on the perceived facilitators and barriers within NC to test and link PLWH into HIV medical care.

Results

Participants

Participants represented a range of organization types. The majority of participants worked at medical clinics (62%, n = 12), 5 (24%) at the NCDHHS, 2 (9%) at AIDS Service Organizations, and 1 (5%) at a county health department. Eight (38%) participants were medical providers. Twelve (57%) participants had worked in the HIV prevention and care system in NC for 10 years or more, 5 (24%) for 5 to 10 years, and 4 (19%) for less than 5 years. Table 1 contains a summary of overarching themes and their attributes that emerged from the data.

Table 1.

Primary Themes and Theme Attributes for Participant-Identified Barriers to and Facilitators of HIV Testing and Linkage to Care in North Carolina.^a

Primary Themes	Theme Attributes
Testing
Hard to reach populations	Domestic violence victims (–) Involved in sex work (–) Undocumented immigrants (–) Young, MSM of color (–) Financially insecure/impoverished (–)
Challenges for community-based organizations	Need strategies for hard-to-reach populations, for example, social network testing (–) Lack of resources for prevention and testing (–)
Medical providers’ perceptions of their responsibilities and patients’ risk	Lack of HIV education (–) Do not believe it is their responsibility to offer tests (–) Misperceive patients’ HIV risk (–) Uncomfortable talking about sex (–) Lack of feedback from hospitals about patients who test positive for HIV (–)
Stigma	Strong in the South (–) Exacerbated by lack of anonymity in rural areas (–)
NCDHHS: Support of CBOs and state laboratory capabilities	NCDHHS engagement with CBOs (+) Support of non-traditional testing (+) Provision of rapid test kits (+) Rapid results from state laboratory (+)
Linkage to care
Individuals’ access barriers	Lack of transportation (−) Finances; lack of awareness of assistance programs (−) Substance abuse (−) Mental health problems (−) Poor coping skills (−)
Aspects of clinics and clinical care	Intake appointments (+) Provision of patient education (+) Lack of standardized approach for patients who don’t attend their first appointment (−) Variation in first appointment waiting periods (+)/(−)
NCDHHS: Roles of disease intervention specialists and state bridge counselors	Disease intervention specialists Provision of HIV education (+) Linkage to clinics (+) Partner tracing (+) Can be overwhelming (−) State bridge counselors Need for protocols and role delineation from DIS (−)

Abbreviations: CBOs, community-based organizations; DIS, disease intervention specialists; MSM, men who have sex with men; NCDHHS, North Carolina Department of Health and Human Services.

^a(+) indicates a facilitating factor and (−) indicates a barrier.

Testing

Hard to Reach Populations

Although most participants spoke positively about HIV testing efforts in NC, many also discussed at-risk populations who are hard to reach for testing. One respondent described this varied group, noting the numerous psychosocial and economic barriers to testing present, particularly for young men who have sex with men (MSM).

(T)hey’re really living in kind of fringe situations where testing for them is not possible or not safe; those who are in domestic violence situations, situations where they’re exchanging sex for money … They may be people who are undocumented, so they don’t want to come to the light of government systems in any way … They may be people who literally have nothing and are dependent on others for their care and safety. We know this is particularly true among young MSM, particularly minority, young MSM who may have been thrown out of their homes or ran away or were in abuse situations or something where they’re homeless, or they’re close to homeless … where, frankly, taking care of their health and getting tested for anything is not as much a priority as having enough money to buy food.

Challenges for Community-Based Organizations

Numerous respondents noted the need for community-based organizations (CBOs) to develop approaches to find and test hard-to-reach populations.

(We have) already picked the low-hanging fruit of people who are easy to test and identify, and now we have to go a lot deeper to find people who probably don’t have insurance, don’t work jobs … and those are the folks who are probably most at risk. I think we’ve got a lot of work to do with those folks, and we don’t have really good systems for that.

Specific populations that were mentioned as needing more focused outreach efforts by CBOs included young MSM of color, undocumented people, people engaging in survival sex, transgender women, and homeless populations.

Utilizing social network approaches to increase testing among those at high risk was discussed as a promising practice; however, challenges with implementation were also identified. One respondent noted,

We’ve just started that [social network testing], but I think that we don’t sell it very well. We don’t promote it very well because in order to do that, you have to empower someone who’s positive to get past their own personal stigma; to become educated to talk about HIV so that they’re willing to have conversations in their network … .

A lack of resources for HIV prevention and testing in some regions of the state was also discussed as a barrier.

The testing and prevention and education, we have just a small piece … . I try to stretch as much as I can … . We don’t really have a lot of testing efforts and/or community education efforts. That’s the only way you’re going to promote and de-stigmatize and promote testing … . So, we don’t have any resources, I don’t think, in [the area of] North Carolina, yet.

Medical Providers’ Perceptions of Their Responsibilities and Patients’ Risk

Respondents discussed that some providers are not comfortable talking to patients about sex and therefore avoid testing for HIV altogether. Numerous participants lamented the lack of education among medical providers who are not following the 2006 CDC HIV testing guidelines²³ and miss red flags for HIV.

I think there’s also a lack of education and more rural primary care providers … There’s a lot of contact with patients with medical providers and dental providers and opportunities to do testing but our—I think we’re stuck back in the perception of who’s at risk and who’s not at risk and whose job it is to do the testing.

Suggestions for improving provider testing included providing feedback via data sharing to providers whose patients test positive in the hospital.

(M)aybe giving them feedback, for example, if you have a provider who either had not tested and the person tested positive in the hospital, then making sure they’re aware their patient was tested in the hospital and the results were positive. And so, for me, if I were that provider, I’m like, ‘Ding, I missed the opportunity to test this patient. What did I do wrong? What can I change for the next person?’

Stigma

HIV stigma was described as being particularly strong in the South and representing a significant barrier to testing. Several respondents emphasized that stigma is exacerbated in rural areas of the state, where the lack of anonymity combined with stigma creates substantial obstacles.

I think that a lot of people in those communities aren’t tested because you get tested at the health department. Well, if you go to the health department, you’re at-risk for running into your mom’s cousin or whatever who works at the front desk and all these issues surrounding confidentiality and stigma in these communities.

North Carolina Department of Health and Human Services: Support of CBOs and State Laboratory Capabilities

Overall, many respondents recognized NC as progressive in its testing efforts, in a large part due to the support of the NCDHHS for CBO use of nontraditional testing sites appropriate for their particular community and target populations and for the provision of OraQuick tests (OraSure Technologies, Inc, Bethlehem, PA, USA) to CBOs.

(R)ecently, I feel like we’ve had an increased focus on the early part of the whole testing and engagement into care. And I think a part of that process has been increased engagement with community-based organizations that have more of a grassroots approach and are able to offer testing like at nonconventional testing sites. I think that the mentality of the state in terms of adapting those testing practices has been good.

The NCDHHS State Laboratory of Public Health was also identified as a facilitator to HIV testing. Several respondents noted the quick turnaround time of the state laboratory for confirmatory HIV tests.

I think for us the turnaround of the state lab is pretty good. We were using our local health department, and it was taking more like four to five weeks to get results. So cutting that in half has really helped us find our clients faster, and it’s more appealing when we can tell people we’ll have your results in 2 1/2 to 4 weeks as opposed to 4 to 5 weeks.

Additionally, the ability of the state laboratory to identify highly infectious, acute HIV cases through early adoption of HIV RNA testing on pooled samples was also noted as a strength.

I think one of the strengths of the North Carolina system, I guess it would be specifically the health department, is the fact that we can identify acute. I think that is huge from a public health point of view and continued transmission but also from an individual point of view getting them into care as soon as possible. I think that’s our real strength and so that’s very unique to the state.

Linkage to Care

Individuals’ Access Barriers

Participants discussed psychosocial and economic barriers common in newly diagnosed patients who fail to successfully link to care in a timely manner. One participant enumerated these frequently observed patient-level barriers to care,

And then there’s social gaps, obviously, many to linkage to care: transportation, finances, fear, stigma, various substance abuse, mental health issues. I could go on.

Participants also stated that patients were often concerned about their medical bills and lacked awareness about financial assistance programs to help defray the costs of high medical care. Transportation to appointments was also identified as significant issue, particularly in rural areas with long travel distances.

Additionally, the need for patients to employ positive coping skills in the face of a new diagnosis that allow for fast linkage to care was cited as an obstacle.

I think the problem can be sometimes that it happens so fast from diagnosis to clinic that some people can be very overwhelmed and feel like they want more time to adjust or they want to run away from it and that can be an issue … .

Aspects of Clinics and Clinical Care

Respondents discussed clinic initiatives to enhance linkage to care. Several participants described the presence of new patient clinics or clinic times specifically reserved for new patients to expedite appointment access. Some clinics offer intake appointments to newly diagnosed patients to draw blood for CD4 and viral load tests and to meet with nurses and other patient services staff, including health educators and substance abuse counselors, but not prescribing providers. A respondent described the benefits of these visits:

So, we have all those lab results and we have a good idea of what their daily living needs might be as well by the time we actually see them for their first official provider visit. It’s very helpful to have that information and it’s helpful to have had the patient to interact with several of our staff members because we’re able to narrow down and focus on what might be some issues in terms of adherence, if they’re going to have problems living some place.

Participants emphasized the importance of HIV education at the first appointment to facilitate engagement in care.

With the health education piece, at least my belief is that if clients don’t really understand the disease process, get a real good handle on that, it’s very difficult to engage them.

A weakness in linking patients to care identified at the clinic level was the lack of consistency among clinics in whether or how follow-up occurs when patients do not show up for their first appointment.

It’s left to the provider, or the doctor, or the nurse, the case manager, whoever it is, to let us know at the state on the DIS level if someone didn’t show up. So that becomes another flaw. Is anybody doing that? Does anybody pick up the phone and say, ‘Joe didn’t show up today? What are we going to do about it?’

Significant variation in the ability of different regions of care to facilitate rapid linkage to care due to clinic appointment availability was noted by participants. While some clinics have waiting periods of 2 weeks or less for an initial appointment, others have much longer wait times of up to 12 weeks. A respondent commented,

… You’ve got a patient that’s ready to go and then you can’t get them in for 2 months, I mean that’s crazy. I mean, there’s no reason that anyone should have to wait that long for an appointment. It’s just not right.

North Carolina Department of Health and Human Services: Roles of DIS and SBC

North Carolina DIS, NCDHHS employees who attempt to meet in-person with all newly diagnosed individuals in the state, were commonly discussed as facilitators of initial HIV education and linkage to care.

Our ability to find people once they have tested positive and talked to them and explained what HIV is and isn’t and hopefully then move them down that process of getting linked into care is really, really good. We have a very high success rate of face-to-face meetings with someone who’s been newly diagnosed.

Participants also noted the sexual partner tracing services provided by DIS as strength to identify and contact others at high risk of infection. However, some respondents touched on the potential downsides of the DIS approach, including overwhelming patients at vulnerable times in their lives.

You have people who’ve never been contacted by DIS, who don’t understand their role, and again, it can be—overwhelming is the word I keep thinking of, to have a stranger come up to you and sort of ask all these delicate questions … I think that can sometimes, for some patients … be difficult.

The newly implemented SBC positions at NCDHHS were described as needing better role delineation from the DIS and clearer protocols for intervening with patients. A respondent explained,

I think it’s just kind of not well formed yet. I think a lot of the bridge counselors are a little frustrated because they don’t really understand where their role begins and the DIS role end[s], so I think that needs to be made a little bit more clear to them. I think that they’re not 100% sure which cases they should intervene in and which ones they shouldn’t intervene in, and I think it also varies a little bit by region, depending on what they’re doing.

Discussion

This article is unique in its contribution of the perspective of HIV care stakeholders on testing and linkage-to-care efforts. Specifically, the viewpoint of professionals working in NC’s HIV prevention and treatment systems on the barriers to and facilitators of HIV testing and linkage to care in the state were examined. Participants also provided information regarding key aspects of the NHAS implementation within the NC HIV system.

Testing

Overall, testing initiatives were widely respected, and the support provided by NCDHHS for community-based, nontraditional testing initiatives lauded. However, participants also acknowledged myriad challenges to identifying the remaining people who are HIV positive and unaware. These hard to reach populations discussed by the participants support previous research and include undocumented immigrants; being a sex worker or young MSM of color; and financially insecure/impoverished individuals.^24

–27 Although being a victim of intimate partner violence is a known risk factor for HIV infection,²⁸ it was also cited as a barrier to testing in the state.^30,33–34

Respondents described the potential for social network strategies (SNS) to identify HIV-infected individuals but also discussed challenges in implementing SNS. Evaluations of SNS indicate that they are an effective approach to identify undiagnosed PLWH^29
–31; however, these strategies require extensive resources for successful implementation, including detailed plans, staff, and ongoing input from clients and staff.³² These findings suggest a need in NC for additional support to implement such resource-intensive initiatives as well as exploring additional evidence-based testing strategies for hard-to-reach populations utilizing approaches tailored to specific populations.

As documented in other studies, HIV-related stigma was discussed as a major barrier to testing,^{33

–40} particularly in rural communities. This stigma, coupled with the commonly perceived lack of confidentiality in small towns, is a significant deterrent to test for HIV for many at-risk individuals. Certainly, HIV-related stigma has been shown to persist at high levels in the South.⁴¹ Engaging faith communities offers a promising, underutilized approach to addressing HIV stigma^42,43 and may be an important component of a comprehensive statewide strategy incorporating a variety of organizations and stakeholders.^36,44,45 Such an approach could positively impact HIV testing as well as other steps along the HIV care continuum.

Linkage to HIV Care

Congruent with prior research, factors impeding individuals’ linkage to HIV care included substance abuse, mental health, financial concerns, and fear.^40,46

–49 The challenge of transportation to appointments was highlighted as a pervasive obstacle for many, particularly in rural areas. Current efforts to address transportation as a barrier to HIV care, funded through the CDC’s Care and Prevention in the US grant, may help to increase access to care for some PLWH in the state. Exploration of creative strategies, such as increased flexibility in appointment schedules or the use of satellite clinics to reduce travel time, may reduce the effect of transportation barriers on accessing medical care.

Disease intervention specialists were largely seen as playing an important role in the linkage-to-care process for the newly diagnosed patients in NC. The education provided, referrals to HIV providers, and partner notification services were all seen as beneficial, congruent with prior research on providers’ perspectives on partner notification services.⁵⁰ Importantly, it was also acknowledged that interacting with DIS could overwhelm some patients, perhaps even creating barriers to linkage. Further investigation of clients’ experiences working with DIS and effects on linkage to and engagement in care may be useful to inform and refine this approach.

The new role of the SBCs in facilitating and confirming linkage to care was discussed by stakeholders in cautious terms. Concerns about the ability of SBCs to act and be perceived as patient advocates, as opposed to public health officials responsible for enforcing disease control measures, were noted. Following the project plan created prior to this assessment, NC-LINK began working with the existing SBC program to establish policies and procedures to maximize the effectiveness of the SBCs’ work, clearly differentiate their role from the DIS, and begin data collection for evaluation purposes in late 2012. Ongoing evaluation efforts are assessing both patient experiences with SBCs and the program’s effects on timely linkage to care in the state.

Conclusion

This study has several limitations. First, participants were almost exclusively HIV care professionals employed in publically funded HIV organizations in the state. Although the majority of HIV-infected patients receive HIV care from publicly funded programs with an HIV focus, stakeholders in private settings or those who are not located in organizations with an HIV focus may have other perspectives. Additionally, the perspective of PLWH was considered beyond the scope of this work. However, changes to policy or procedures of systems of care should consider the perspective of those who live with the infection prior to implementation.

Other Southern states are encouraged to employ this research approach of qualitative interviews with professionals working in the HIV prevention and care system to explore their state-specific strengths and weaknesses along the continuum of care. Insights gained may guide resource allocation and interventions to more effectively and efficiently address the HIV epidemic in the South.

Footnotes

Acknowledgments

The authors wish to thank the study participants for their time and invaluable insight and Kathleen Perry, Megan Ramaiya, and Katherine Schultz for their assistance in manuscript preparation.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project is supported by the Health Resources and Services Administration (HRSA) of the US Department of Health and Human Services (HHS) under Systems Linkages for Access to Care Initiative (H97HA22695) and support did not include nongovernmental sources. This information, content, and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS, the US Government, or the North Carolina Department of Health and Human Services (NCDHHS).

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Perspectives from the Field

Abstract

Background:

Methods:

Results:

Discussion:

Keywords

Introduction

North Carolina

Methods

Recruitment

Data Analysis

Results

Participants

Testing

Hard to Reach Populations

Challenges for Community-Based Organizations

Medical Providers’ Perceptions of Their Responsibilities and Patients’ Risk

Stigma

North Carolina Department of Health and Human Services: Support of CBOs and State Laboratory Capabilities

Linkage to Care

Individuals’ Access Barriers

Aspects of Clinics and Clinical Care

North Carolina Department of Health and Human Services: Roles of DIS and SBC

Discussion

Testing

Linkage to HIV Care

Conclusion

Footnotes

Acknowledgments

Declaration of Conflicting Interests

Funding

References