Perspectives of Linkage to Care Among People Diagnosed With HIV

Perspectives of Linkage to Care Among People Diagnosed With HIV Christa L. Cook, PhD, MSN, RN, APHN-BC Barbara J. Lutz, PhD, RN, CCRN, APHN-BC, FAHA, FNAP, FAAN Mary-Ellen Young, PhD Allyson Hall, PhD, MBA, MHS, BBA Jeanne-Marie Stacciarini, PhD, RN Timely linkage to HIV care and treatment has led to improved individual and population benefits; however, 25%–31% of people diagnosed with HIV do not engage in care. Most linkage to care research has focused on larger metropolitan areas, but smaller metropolitan and rural areas encounter unique challenges to linkage to care. Our purpose was to examine factors influencing the decision to seek care by 27 people infected with HIV living in smaller metropolitan and rural areas of Florida. We used grounded theory methods to develop a theoretical model describing the decision-making process and participant recommendations within the context of stigma. Participants described support, defining care, activating care, conflicting messages of care, and pivotal events influencing the care decision. Findings highlight the complexities of HIV care and suggest a client-centered approach to address the multifaceted social and structural challenges people with HIV face in the journey from infection to care. (Journal of the Association of Nurses in AIDS Care, 26, 110-126) Copyright Ó 2015 Association of Nurses in AIDS Care Key words: HIV, linkage to care, provider interactions, rural, support

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screening techniques have led to an increase in the number of people diagnosed with HIV. Due to treatment advances, people living with HIV (PLWH) who receive health care immediately upon diagnosis are likely to experience decreased

mortality, reduced viral loads, and fewer opportunistic infections (Anglemyer et al., 2013). People in care are also more likely to refrain from risky sexual behavior than those who do not engage in care (Mattson et al., 2014). In addition, the reduced viral load that results from therapeutic antiretroviral therapy (ART) decreases the likelihood of transmitting the virus and improves the overall health of the population. Despite improvements in outcomes, 25% to 31% of individuals with newly diagnosed HIV infection do not receive appropriate treatment within 3 months of diagnosis (Gardner, McLees, Steiner, Del Rio, & Burman, 2011). According to the Centers for Disease Control and Prevention (2013), Christa L. Cook, PhD, MSN, RN, APHN-BC, is an Assistant Professor in Health Care Environments and Systems, College of Nursing, University of Florida, Gainesville, Florida, USA. Barbara J. Lutz, PhD, RN, CCRN, APHNBC, FAHA, FNAP, FAAN, is the McNeill Distinguished Professor, University of North Carolina Wilmington, Wilmington, North Carolina, USA. Mary-Ellen Young, PhD, is a Clinical Associate Professor in Behavioral Science and Community Health, College of Public Health and Health Professions, University of Florida, Gainesville, Florida, USA. Allyson Hall, PhD, MBA, MHS, BBA, is an Associate Professor in Health Services Research, Management, and Policy, College of Public Health and Health Professions, University of Florida, Gainesville, Florida, USA. Jeanne-Marie Stacciarini, PhD, RN, is an Associate Professor in Health Care Environments and Systems, College of Nursing, University of Florida, Gainesville, Florida, USA.

JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 26, No. 2, March/April 2015, 110-126 http://dx.doi.org/10.1016/j.jana.2014.11.011 Copyright Ó 2015 Association of Nurses in AIDS Care

Cook et al. / Linkage to Care Among People Diagnosed With HIV

more than 1.1 million people are living with HIV in the United States, and the South has been disproportionately impacted. In the state of Florida, more than 100,000 people have been diagnosed with HIV, and 19% to 27% of those newly diagnosed with HIV do not engage in care within 90 days of diagnosis (Maddox & Poschman, 2014). Linkage to appropriate HIV care begins with HIV testing and, for those who test positive, an active or passive referral is made to a care provider. The process of being diagnosed, seeking care, and remaining in care can be understood as the HIV continuum of care. From a social ecological perspective, multiple barriers exist to engaging in HIV care (i.e., substance use, mental health, access to care, stigma; Mugavero, Norton, & Saag, 2011), and given the complexity and multifaceted nature of these barriers, it is important to understand how to facilitate linkage to care in their presence. For those in small metropolitan and underserved rural areas, PLWH may experience a higher degree of stigmatization, lack of social and emotional support, and inadequate health care resources. Current treatment guidelines recommend that all people with HIV receive ART, and there is building evidence supporting treatment regardless of CD41 T cell count (Gunthard et al., 2014). There are interventions to promote engagement in care (case management, outreach, patient navigation, and peer support), but these strategies are usually implemented after someone has failed to link to care, and can be cost prohibitive in less populated areas (Liau et al., 2013). Once appropriately linked to HIV care and receiving ART, PLWH now have life expectancies equal to or even higher than the general population (Samji et al., 2013); therefore, it is vital to identify the factors that facilitate linkage to care after HIV diagnosis, particularly for PLWH living in small metropolitan and rural areas with fewer resources. The purpose of our study was to examine factors influencing the decision to seek HIV-related health care among people infected with HIV living in small metropolitan and rural areas in Florida. More specifically, the aims of this study were to: (a) describe the process and decision points for linkage to care for people when diagnosed with HIV, and (b) identify participants’ recommendations to improve the linkage to care process.

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Research Methods We used Community-Based Participatory Research principles to incorporate a community-engaged approach to better understand the perspectives on linking to HIV care for individuals from small communities and rural areas in north Florida (National Institutes of Health [NIH], 2011). Social Ecological Models and Constructivist grounded theory provided the theoretical framework for this research and guided study design, methods, and interpretation of study results (Charmaz, 2006; NIH, 2011). Social ecological models address multiple determinants of health at individual, community, system, and policy levels and provide a conceptual framework for investigating the decision to link to HIV care (NIH, 2011). In our study, qualitative, constructivist grounded theory methods were chosen to further expand Social Ecological Models and to explore how persons perceive phenomena within a larger social context (Charmaz, 2006). These methods are based on the theoretical perspective of symbolic interactionism in which human beings are active, interact with others, and use their perspectives and experiences to define situations from social interactions (Charon, 2010). Community engagement began with the formation of a community advisory board (CAB) consisting of providers of HIV services, people with HIV infection, and faculty from the local university. Members of the CAB advised the Principal Investigator about provider and HIVadvocate perspectives on linkage to HIV care. Community-level practices and experiences were discussed and the CAB reviewed methods for appropriateness and cultural sensitivity. We obtained approval from the University of Florida Institutional Review Board prior to implementing any study procedures. Sampling Plan and Recruitment After receiving input from the CAB, we focused on recruiting people who met the following inclusion criteria: older than 18 years of age, fluent in English, and diagnosed with HIV. We used purposive and snowball sampling to recruit participants from Ryan White Consortia, support groups, and a local agency that seeks to connect community members with local research projects (Charmaz, 2006). The lead author recruited participants in person from support groups

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and consortia meetings and via telephone from the local research participant recruiting agency. With input from the CAB, we developed a flyer with information about the goals of the study, inclusion criteria, and study contact information for people who were interested in participation. The flyer was distributed in support group meetings, and members of the support groups were given extra copies of the flyer to provide information about the study to others. Copies were also provided to community partners to share with potential participants. We selected participants for interviews based on their reported time to link to HIV care after diagnosis. Individuals in the first group reported that they engaged in care immediately after receiving an HIV diagnosis (usually within 6 weeks due to system delays). The second group consisted of persons currently engaged in care but who delayed initiation of care for 9 months or more. We theoretically sampled participants to understand the dimensions of the emerging concepts and to gain a complete picture of the HIV care process. Sampling continued until saturation occurred or no new categories emerged from the ongoing analysis of the data (Charmaz, 2006). Data Collection After participants provided written informed consent, a semi-structured, interactive interview was scheduled in a private community setting. For each completed interview the participant received a $25 (USD) gift card. The first author conducted all interviews, and questions were adjusted to follow the participant’s lead and capture a full understanding of the participant’s experience. Examples of questions from the interview (see Table 1) included: (a) What was it like to find out you had HIV? What thoughts did you have? and (b) Tell me about how you decided to seek [or not seek] care once you learned you had HIV. Consistent with data collection techniques in grounded theory and dimensional analysis, questions evolved with direction from participants and as a result of ongoing analysis (Charmaz, 2006; Schatzman, 1991). For example, as participants began to describe support, we incorporated questions to understand the dimension of support. All interviews were audio recorded, professionally transcribed, and de-identified prior to data analysis.

Table 1.

Sample Interview Questions

1) Tell me about how you came to be diagnosed with HIV. a. What was it like to find out you had HIV? What thoughts did you have? b. Probe how they contracted disease if they are comfortable discussing. 2) What was your life like when you were diagnosed? How has that changed? a. Any risky behaviors such as alcohol, drugs, risky sex? Mental Health? 3) Tell me how you decided to get tested for HIV. 4) What does being diagnosed with HIV mean to you at this point? 5) What do you think HIV will do to you? 6) How severe do you think this illness is for you? 7) Tell me about how you decided to seek [or not seek] care once you learned you had HIV. 8) What are your feelings or beliefs regarding treatment for HIV? a. Probe for HIV treatment, substance abuse treatment, mental health treatment. b. Do you feel like you need treatment? A particular kind of treatment? 9) Describe who or what has been helpful to you since you found out you have HIV. 10) Describe who or what has been the least helpful to you since you found out you have HIV. 11) Where do you see yourself in 2 years? 12) Is there anything else I should know to understand being diagnosed with HIV better? 13) Is there one key person who has helped you? Why? What is it about that person that made a difference? 14) Is there anything you would like to ask me? Questions (more appropriate for persons engaged in care now but who did not initially seek care) 1) Tell me about how your views about seeking HIV care may have changed. Describe an average day before and after treatment. 2) After having this experience, what advice would you give to someone initially diagnosed with HIV?

Data Analysis A qualitative data analysis management program, NVivo 10 (QSR International Inc., Burlington, MA), was used to manage transcripts, coding, memos, and literature specific to linkage to care. For participant interviews, techniques in grounded theory and dimensional analysis guided the process

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(Charmaz, 2006; Schatzman, 1991). Line-by-line open coding was used to develop provisional concepts; open coding helped to sort and cluster data into theoretical concepts, and memos were created for areas that needed further investigation (Charmaz, 2006). We used a card sort technique to identify relationships among the concepts and to aid in developing the theoretical model regarding the decision process to link to HIV care. After analyzing the initial interviews, we identified categories and theoretical concepts and focused recruitment of the remaining participants to help explain the dimensions of each concept (e.g., support; Charmaz, 2006; Schatzman, 1991). Furthermore, at the conclusion of each interview, we shared copies of the emerging theoretical model and sought feedback by asking participants to identify anything missing and how the model did or did not explain the decision process. This analytical process continued until data saturation and the theoretical model was complete (i.e., participants did not have anything new to add to the model). To enhance accuracy of data analysis and credibility in the research, peer debriefing with a university-based qualitative data analysis group took place at each step of the analytical process.

Results We recruited 27 PLWH from small metropolitan and rural areas (48% male, 48% female, 4% transgender) who had been infected with HIV for an average of 13.2 years (SD 5 8.4; see Table 2). Participants ranged from 25 to 64 years of age, and most of the sample (67%) had less than a high school education. Transmission categories for most participants included men who have sex with men (37%) or risky behaviors associated with substance abuse (33%). The majority of participants were diagnosed at a local health department (41%). From the data, we created a theoretical model of the process and decision points for linkage to care, and incorporated suggestions from participants to facilitate linkage from diagnosis to entering HIV care (Figure 1). The model was holistically driven from the client’s point of view and represented (a) the context of linkage (stigma), (b) conditions that impacted the linkage-to-care decision (support,

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defining care, activating care, conflicting messages of care), (c) the decision process (beginning with an HIV diagnosis and ending with participant’s definition of care), and (d) participant recommendations for linking to and remaining in HIV care at relevant points in the process. The loop at the right of the model shows how people may move in and out of care. Following discussion of the Context of Linking to HIV Care: Stigma, we will present the process of linkage to HIV care. The process begins with a description of support, a central need throughout the linkage-to-care process. Remaining themes are organized by steps in the process and include participant recommendations to improve linkage to care. The Context of Linkage to Care: Stigma Stigma provides the cultural context for HIV linkage to care in the United States and, in particular, in the small metropolitan and rural areas of north Florida. One participant commented: Actually [I was] scared to reach out for help because I would think about the Biblical days when they had leprosy. And, when you reach out for help people cast you to the side, you know? . and then they had this thing when you make sure you use the bathroom, don’t go in there behind him because he this, this, this. Or, you got a glass or you got a fork, your family members have the tendency of putting plastic stuff in there. Health care providers knowledgeable about how HIV is transmitted still stigmatize PLWH. For example, one participant who worked in a hospital commented on how staff responded to someone known to be infected with HIV who requested to use the bathroom: ‘‘You, you can’t use that . We don’t have any bathrooms on this floor, you have to go down to the first floor.’’ And I’m like, ‘‘Why did you tell the patient that?’’ ‘‘Well I use that bathroom down there, I don’t want them to use it.’’ While HIV-related stigma is prevalent throughout our society, the impact of living in a small metropolitan or rural area can further potentiate feelings of stigma. Stigma may be amplified if the person

114 JANAC Vol. 26, No. 2, March/April 2015 Table 2.

Demographics of Study Participants (n 5 27)

Gender Male Female Other Race Black White Other Unknown Ethnicity Non-Hispanic Hispanic Unknown Education level Less than high school diploma High school diploma Some college/technical school Associate or Bachelor degree Graduate school Unknown Age range, years 25–34 35–44 45–54 55–64 Unknown Number of years with HIV Time to care Delay Immediate Place of diagnosis Health department Jail Plasma/blood center Rehabilitation center Physician’s office Hospital Free testing site Transmission category Substance use MSM Rape Blood transfusion Heterosexual

48% 48% 4% 59% 30% 7% 4% 89% 7% 4% 30% 37% 11% 11% 4% 7% 11% 33% 33% 19% 4% M 5 13.2 (SD 5 8.4) 63% 37% 41% 15% 7% 7% 19% 7% 4% 33% 37% 11% 4% 15%

Note. MSM 5 men who have sex with men.

in a small town or rural area and how the stigma of HIV impacted their decisions to engage in HIV care. For example, a participant commented on the challenges of getting care in a rural area where people know each other. That’s a smaller, a small little town and everybody knows everybody’s business and a lot of people that’s in that town, they could have HIV and they wouldn’t even know it because they’re scared to go to the health department because of people that works there that knows everybody. Given the social nature of stigma, living in areas with low populations and fewer choices for health care and related support services increases the challenges presented when someone begins the decision process to link to care. Participants also spoke of how having HIV was different if you were a member of an ethnic minority population. One participant working as a peer navigator explained: There is still a tremendous amount of lack of support, particularly in the Black community, lack of understanding of transmission. This client tells these horrendous stories about how some of the family comes to their house or they go there, they make them put paper on the toilet or something like that, you know? When HIV is perceived negatively within your social and cultural community, fear of being stigmatized compounds the challenge of linking to HIV care. A participant commented: I felt that way about the Black community, because, you know, for some reason there’s that stigmatism. We will not call any of our children crazy . or have mental problems, and Lord forbid we say that any of them are HIV positive. That’s just taboo. The Process of Linking to HIV Care

with HIV fears status disclosure due to limited choices of providers and support services. Friends and relatives may work in the offices providing care. Participants in our research identified issues related to privacy and confidentiality due to living

Support: Central need throughout decision process. Support influences the decision process and is unique because it is critical before a person is diagnosed, throughout the decision process, and continues after PLWH link to HIV care. Participants said they

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Figure 1. Linkage to HIV care: Decision Process Model.

needed support throughout the entire HIV care decision process. Types of support predominant in the results were emotional support (empathy and understanding the diagnosis) and cognitive support (teaching about HIV). When tangible support (goods and services) was mentioned, it was more in terms of learning where to get services. When asked to think about the types and timing of support, most said that emotional support at diagnosis was the most critical. Participants defined emotional support in terms of letting PLWH know they were not alone, and that others were going through similar experiences. One participant articulated the priority of emotional support by saying: When you really need emotional support; it is when you’ve been diagnosed . I know how it was for me when I found out . I was more concerned with my life, and how I was gonna deal with this, and how I was gonna tell my family, and how my family was gonna accept me now, and how I’m gonna live with it. While participants felt knowledge of HIV was extremely important, when they were distressed about the diagnosis, they did not want to learn about the technical/medical aspects of HIV such as viral loads, CD41 T cell counts, and ART.

The preference for who delivered the support varied among participants. Some strongly felt the initial support should come from a peer with HIV in order to alleviate the anxiety related to diagnosis and future disclosure. Others sensed it was not necessarily about who was delivering the support but, more importantly, how the support was delivered (e.g., with a smile or a word of kindness) that influenced the decision to seek care. I mean because they treated me real nice . I never gotten an ugly response. [They] started talking to me and everything and they understood my situation. And once I understood a person knows my situation and how they respond to me, then I can respond to them back in that same tone now, you know, in that same tone. Participants felt that the receipt of support led to better outcomes, and lack of support led to poor outcomes. While all types of support were important, emotional support delivered at diagnosis was the most salient. HIV diagnosis. As depicted in Figure 1, the decision process begins with the HIV diagnosis. An HIV

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diagnosis can take place in a variety of settings and most participants recalled that moment in detail. For example, a female participant diagnosed 20 years ago emotionally described the experience: When he tested me it was like he came in the room and he just shook his head and he just said, ‘‘Ms. [name], I have something to tell you. It’s gonna be shocking. It’s gonna hurt. You gonna withdraw. You gonna be all the above.’’ And I was like, ‘‘What’s that?’’ And he’s like, ‘‘You done transmitted HIV.’’ I was like, ‘‘What is that?’’ Never had heard about it, never seen no one that had it or anything. I was like—and then he went to telling me and I was hurt. I wanted to hurt myself. Participants discussed how the way the diagnosis was delivered could be a barrier to linking into care. They also discussed ways providers could improve guidance about care options during diagnosis delivery. Recommendation: Diagnosis delivery. Prior to initiation of participant interviews, the CAB identified that the way a diagnosis was delivered could be a barrier to linkage to care and that improving delivery could impact outcomes. During the individual interviews, participants reflected on the way they were told that they had HIV or how they wished they had been told. For example, one participant spoke of feeling judged when he received his diagnosis: ‘‘Well, when I was given my results . the person was nasty and sent me on my way. His remark to me was, ‘Whatever behavior you were doing that got yourself in this trouble, you need to stop now.’’’ For PLWH who have little experience with the health care system, negative experiences during diagnosis can influence the decision to link to care. It is not surprising that if someone feels scolded by a provider for a behavior at diagnosis and already feels discomfort in getting care due to stigma, s/he may choose not to engage in care. Another participant commented on positive interactions: And, you know, it’s the personality and how you talk to the person. You don’t want to talk to them aggressively, you know, you need to do this and you need to take this and you need to—that doesn’t get it.

Recommendation: Anticipatory guidance. For example, participants described a need for anticipatory guidance, an intervention frequently utilized in pediatrics to guide parents with practical information about potential challenges and impending changes as their children grow (Titley, 2006). Participants in our study talked about the need to be informed of the process ahead, such as what to expect in the next few days, what the clinic visit would be like, and how it was going to feel to adjust to the news. Participants also commented about how they needed to have an understanding of the next steps in relation to care and believed that providers often assumed that PLWH automatically knew the process. For example, a participant commented, ‘‘Now if you are positive, this is what we’ll do and let them start thinking about it.’’ Furthermore, people infected with HIV were often too upset about hearing they had HIV to process complex directions about seeking care. Anticipatory guidance can begin at diagnosis and be reinforced by all providers during encounters in the system throughout the care trajectory to help maximize the chances of linking someone into care and helping them remain in care. Grief or Crisis Response All participants in our study described a crisis and/ or grief response after they were told the results of their HIV test, even if they had already suspected they were infected. Responses included feelings of anger, denial, disbelief, and fear. Participants also stated they felt dirty, numb, hurt, and overwhelmed. Even participants who knew they were likely to be infected, because of an infected partner, experienced a crisis response after confirmation of the diagnosis. One participant described her response and agreed that grief was an accurate description of how she felt: Everybody’s gonna go through all the emotions. You’re gonna go through depression. You’re gonna go through anger. You’re gonna go through not accepting it, disbelief, all of it, until you come to terms . Oh, just knowin’ that my life will be cut short because of this. That’s something that is hard to grab onto, to grasp. This participant talked about having support through her family and spiritual foundation,

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encouragement and referral from her provider to attend support groups, as well as assistance to work through her grief response and move into acceptance and HIV care. However, other participants withdrew, continued or initiated risky behaviors, gave up living (passive suicidal ideation), or ran away. As participants worked through the crisis or grief period, they came to a decision point about whether to engage in HIV care. Successful resolution of the grief/crisis period tended to move participants toward HIV care. Participants were asked what they thought our system could do to facilitate entry into care and responded with concepts about transition and ideas for facilitating transition, including navigation and counseling. Recommendation: Maintaining connection through transition. Participants felt that the crisis period following diagnosis was overwhelming, and maintaining a connection with the provider or system through this transition was important for linkage to care. One participant provided her perspective on how PLWH would end up at the point of delaying HIV care if connections were not maintained: I think at that point in time (resolution) that you’ll catch that person and be able to really help them get on the right track . Before they get lost, because they will get lost. You want to be able to keep connected to them. I know, I got lost . Because you don’t really have anything to connect to once they tell you you’re positive. This participant recognized the challenges of linking to care due to unfamiliarity with services, a feeling of being lost in the system, and fragmentation of services. She said that maintaining contact with health care providers or prevention counselors was important to keep PLWH moving toward care. Another participant commented about his providers: They communicate with their clients, especially the case managers, they check on their clients. They check on their appointments, they check on their lab works. And basically, they help you with all the programs that you qualify for. So it’s very—most very helpful.

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Participants indicated that HIV care providers who called to inquire about how the person with HIV was doing and asked to schedule an appointment conveyed a message of caring and offered an opportunity for linkage to care. Most participants described a need for active connection from the health care system during this transition time, meaning they did not want to only feel the connectedness when they chose to engage in care, they wanted representatives from the health care system to actively reach out and connect with clients who might have been lost to follow-up. Recommendation: Navigation. Participants suggested that it was important to have someone (e.g., an advocate) who could help them through the crisis and into care. This advocate also needed to be knowledgeable about and able to provide assistance with navigating the health care system. While some said anyone caring and compassionate would be able to provide system navigation, most said they felt like it should come from a peer, from someone with HIV, immediately after diagnosis, because PLWH had a better understanding of what it was like to be diagnosed and live with HIV. For example: You get diagnosed; don’t leave me there to figure it out, to understand, because now I’m in a state of mind where I don’t know what to do. That’s when you need to take my hand to help, to guide me to the point where I know I need to get into care. I know how important it is to get into care and I need to know someone like me . Because you’re not the person I want to talk to, you ain’t HIV positive . You don’t understand what I’m going through. I need someone that’s dealing with what I’m dealing with, that understands, that’s compassionate but strong. In practice settings, staff may comment that PLWH need to take responsibility for their own care. While this may be true in some situations, the woman above identified the gap in the logic. As she explained, someone newly diagnosed may not have the knowledge or ability (health literacy) to navigate into HIV care. She also explained how a peer with HIV who was already linked in care could help the navigation process better than others because they understand the challenges of living with HIV day to day. Finally, she indicated that providers needed to

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go beyond holding someone’s hand and telling them where to go. Once the initial crisis of the diagnosis is resolved, it is necessary to teach people how to advocate for themselves as they enter HIV care. Recommendation: Counseling. The advisory board and participants articulated a strong need for mental health services for people diagnosed with HIV. Participants shared many ways in which counseling helped them decide to enter care and that it should be available at the time of diagnosis. When participants thought about what they would tell someone newly diagnosed, they brought up counseling. One participant who delayed care, and continued with a risky lifestyle for many years, said what assisted him into HIV care was counseling. When asked what he would tell someone newly diagnosed, he responded: My advice is, ‘‘I know you’re going through some stuff; it’s best to get yourself some counseling, man. Listen and talk with your doctors. It’s just a disease and they got so much good medication now you may outlive your brother.’’ You know, I actually would really give them some good information to motivate them to lift their head up. Offering counseling services with providers trained in HIV care may help people effectively work through the grief/crisis period that results from an HIV diagnosis. Resolution (Reappraisal): The Decision Point of HIV Care Within varying amounts of time, all of our participants came to a decision point about whether they would begin or delay HIV care. When asked what factors helped them decide, we discovered that the decision was not always a choice they made personally. As we will discuss in the next sections, the decision was influenced by how people defined care, how they were activated in care, and how they received conflicting messages of care. However, coming to terms with the HIV diagnosis helped people make the decision to engage in HIV care and work toward acceptance. For example, one participant commented:

It’s just like one of the steps with the 12-step program . With 12 steps, when you accept that you have it, you can move on. You can start gettin’ the care that you need . But you have to accept what you have first. If you can’t accept it, then you gonna be depressed, you gonna be sad . You gonna be angry. And with me . You’ll stay in that space [of delayed or intermittent care]. This participant compared the decision to enter HIV care to her experiences with substance use treatment, recognizing that failure to seek care would lead to a physical health decline. While the resolution or (re)appraisal point is the critical decision for PLWH, it is also very complex. Many personal, community, and system factors can influence the decision to seek care at this point and this is different for each person. For most, the decision to enter care was not a clearly defined point, instead, it happened at several points along the care trajectory and was influenced by how the diagnosis was delivered and the feelings of stigma, shame, and loss. Defining care. The Engagement in Care Continuum developed by the Health Resources and Services Administration (2006) addressed the complexities of defining care and defined entry into care as part of a process. In practice, determining someone’s care status is often defined by keeping medical appointments and a trajectory of improved lab values. However, study participants defined ‘‘being in care’’ as a multi-dimensional process, not an event. They talked about the fluidity of care and how they did not define themselves as being in care until they reached acceptance of their HIV diagnosis, even if they were attending appointments and following Health Resources and Services Administrationrecommended guidelines for care. For example, one young female participant met the conditions of being in care as defined by the Health Resources and Services Administration (regular attendance at HIV appointments and routine lab testing), and yet talked about how she had just entered care even though she had been receiving services for 3 years: And I was still out there doing what I wanted to do. I was still drinking, clubbing—I was still having sex. Up until this year, I just came and

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said, ‘‘Okay, this is real. Now I’m ready to learn about what’s going on with my body.’’ I was going through the motions. I was still going to my doctor’s appointment, because the lady made the appointment for me . And they reschedule my appointment every 3 months. I continued to go to the doctor, but I was still in denial. This participant described ‘‘going through the motions’’ and did not perceive that by just receiving services meant she was ‘‘in care.’’ How PLWH define care, and provider awareness of how clients define care, are important patient-centered dimensions of facilitating the linkage process. Activating care. Participants in our study were activated to enter into the health care system by a feeling of responsibility for someone else (a child or family member), or by having someone close to them urge them to move forward (family member, close friend, or health care system). For example, when one participant became pregnant, the health care system provided broker-style case management to protect the child from vertical transmission. This added support often brought participants into the system but did not necessarily keep them in the system. One participant commented on staying adherent to her medications throughout her pregnancy but stopping after her baby was born. I went to [local area health care system]; I actually went and I stayed there the whole time. I was still in denial. I took medication due to the fact I was pregnant. To keep that baby from getting it, I took my medicine. When she was born I continued to take it for a while, then I stopped. Then I take it, then I stop. It’s like an on/off switch because it depends on what medication it is. Another participant experienced a health care system-initiated activation into care while she was in jail and pregnant. For her, the support she received from this activation helped her to stay in care. Department of Corrections, really helped provide structure for me to say, this is your life (begins to cry). This is your child’s life (quiet pause while crying). When I got out, I

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mean everybody, I got all the special attention, ’cause everybody want to see my baby and . and it was good to know that people didn’t look at me being – ones that knew didn’t look at me as somebody that had, that had a virus or a disease. They just want to say a person’s going to have a baby. So after I got out, I stayed in contact with my case manager and jail linkage coordinator. And I’ve been on my meds ever since. Identifying ways to activate someone in care is an important strategy for programs devoted to linking persons with HIV to care. System programs exist to assist people into care such as jail and pregnancy programs. However, pregnancy programs are not universally accessed. Individually assessing the person with HIV may help identify possible external motivators, such as a child or other dependent, who may help activate someone in care. Conflicting messages of care. Participants identified receiving mixed signals from health care providers as influences on the decision to seek care. One male participant received the emotional support needed to enter care from a peer, but once at the provider’s office he was told there was nothing that could be done and was confused by the message he received from the provider: ‘‘He says, well, he says, ‘Everything with you is clear.’ He said, ‘Your counts are high. You’re not low enough to even start taking medication so there’s nothing we can do for you.’’ The peer helping him went to the physician’s office and explained what happened. The physician clarified what he meant and the participant entered care. These differences in perspectives regarding the definition of being in care can lead to providers further stigmatizing PLWH and labeling them with terms such as ‘‘non-compliant.’’ Pivotal events. Participants reflected on events in their lives that led them to reappraise their circumstances. We chose the term ‘‘pivotal event’’ to represent the point at which a participant made a decision to seek care because the event was described as vital to the decision to link to care. The pivotal event led to a reappraisal of the participant’s situation and a subsequent response in the form of crisis or crisis resolution. For instance, some participants arrived at the

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decision to seek care because of a pregnancy, or a spiritual awakening, while others found the pivotal event began with diagnosis. If the response was crisis resolution, the participant was able to move toward becoming fully engaged in care. Pivotal events differed in timing, scope, and substance for each participant. One participant, who struggled with addiction after learning she had HIV in a physical rehabilitation facility, described her realization of a broken pact with God. It’s like this aura comes over me and I go and I cry to the Lord and I knew, I said, ‘‘Well you know I’ve tried everything and I always come back to this point and I can’t do it.’’ He set me free right then and there. Haven’t picked up drugs since, it’s been over 19 years ago . I said just take the desire away. From this event, she was drawn to return to church, where she met prayer partners who began to show her another lifestyle that did not involve drugs and alcohol. Her spiritual family introduced her to HIV support activities at the health department and she met other people who were comfortable with their diagnoses. During these interactions, she met people who were not afraid of her because she had HIV and learned to accept her diagnosis and engage in regular care. Another participant talked about how her pregnancy brought her back to care: I got arrested. That’s when I got involved with [case manager] and [jail linkage coordinator]. They were like, ‘‘You want to take these meds. You’re going to have a healthy baby.’’ They stayed on me, they stayed on me, and I love them to this day. And it made me feel better about myself. I had to be – for me to deal with this, I had to be in structure to stay focused (begins to cry). Both of these participants had reached pivotal points in their lives. The pivotal events brought them into a care environment where they received the acceptance and support they needed to engage in regular HIV care. In addition to changing the course of HIV care for people who delayed care, pivotal events also changed the care trajectory for some who identified themselves as in care. For example, one participant described his reaction

the first years after receiving an HIV diagnosis as accepting, but then he had a religious experience that moved him away from care. He later described his frustration with physicians for not understanding his spirituality and desire to not take medications for his HIV, and when he came to the reappraisal decision point in the trajectory (Figure 1), he chose to stay out of care. Delayed or intermittent care. Much research has been conducted on barriers associated with linkage to care for people newly diagnosed with HIV. People who were unable to successfully resolve the crisis/ grief process or (re)appraisal from a pivotal event were more likely to delay or seek intermittent care. Examples of behavioral outcomes of the crisis/process without perceived support included a return to a risky lifestyle, anger, passive suicidal ideation, and a refrain from engagement in health care for HIV. Many participants who did not enter care immediately after a diagnosis described the delay to care entry as ‘‘being in denial.’’ Another participant discussed what he thought happens at the decision point: Two things. Either you’re smart enough to read up on it, and try to educate yourself. Or you’re smart enough to go to someone else to get help. That’s the first thing. The second thing is that you are still so afraid of getting that help, and being stigmatized, that you just don’t care. So then you go here (points to ‘‘delay of care’’ in Figure 1). People who end up at this point are at risk for poorer health outcomes from HIV and also increase the risk to the population through transmission to others. The time people would stay at this point in the model varied and depended on many complex issues, including stigma, access to care/services, substance use, mental health issues, and perception of illness. HIV Care HIV care is the goal of public health linkage-tocare efforts, but not necessarily the endpoint of the decision process. As stated earlier, how someone defines care may differ from how the system defines and/or provides care. Some participants stated they

Cook et al. / Linkage to Care Among People Diagnosed With HIV

were not in care, yet later in the interview they would reveal that they attended care but did not like it. Or they would indicate they just entered care, but later admitted they had regularly attended all of their HIV appointments for years. What seemed important about those who considered themselves in care was that they had come to terms with the diagnosis, and this led to acceptance and improvements in health behaviors. For example, a female participant initially shared that she was new to care, but with further probing clarified that after her diagnosis the HIV counselor: . made my appointment, and so I continued to go to the doctor, but I was still in denial. I was still in denial, but I would still make sure I’d go to my appointments . Now the first year I was just going through the motions, but now this time I’m ready to find out what’s going on. I have my pen, my paper, I’m ready to write down my CD4 count. PLWH who were actively engaged in care described components that were necessary to keep them in care. These included providers who (a) had a holistic understanding of the individual beyond a patient role, and (b) initiated shared decision-making. Recommendation: Holistic understanding. A provider who had a holistic approach to care looked beyond a person’s diagnosis and attempted to understand the whole person: their physical, mental, social, and spiritual health. In other words, these providers tried to understand living conditions, values, spiritual needs, relationships, and anything about the person with HIV that might influence health and quality of life. For example, one participant talked about the delivery system at a provider’s office and the challenges of keeping her appointments due to child care issues. She went on to explain her perception that providers did not understand how the medications made her feel and they refused to explore alternatives in treatment. Another participant summarized the importance of comprehending more than a biological patient and of the necessity for understanding the entire person infected with HIV: But with the patients, the doctors don’t really understand where they [clients] are, they can’t

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really help them . I mean if you don’t know me, in a different spot, you can come in there and examine me and stuff like that, . there’s a whole ‘nother side of me that you don’t really get to know. Then you can’t really help me totally . Part of the care is not gonna be there. Finally, another participant described the need for providers to understand their patients holistically by comparing the relationship to that of a cosmetologist. Oh, I think the biggest thing that the health care system needs to do is to always try to put a human face on the person that they’re working with. It just can’t always be words, and standards, and procedures. It has to be a human face . For example, I’m a hairdresser and a cosmetologist . And if you were getting married, I can’t just talk to you on the phone and figure out what you’re going to do. I’m going to actually have to put a human face to you to figure out what hairstyle’s gonna look good, what color’s gonna look good on you. For this participant, putting a human face to HIV helped promote understanding of the entire person. Failure to understand the person infected with HIV from a holistic perspective can hinder engagement or continued adherence to care. Recommendation: Shared decision-making. Shared decision-making was identified as an important method by which providers helped PLWH enter care. Choice was important to some participants who may have sought or were seeking HIV care. For example, a participant commented how shared decision-making was most important to him for linkage to care and continued engagement in care: The most helpful thing is that I have to have a physician that allows me to do my health input. And I don’t want somebody that’s just, oh, if you don’t do this, you’re gonna do that, blah, blah, blah, blah, blah. You know? A more relaxed physician that is willing to listen to you, and not just blurt out things to you. The participants described the need for providers to treat them beyond a diagnosis. Shared decisionmaking and understanding holistic care are two key

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features in the delivery of client-centered care that are necessary to help PLWH engage and stay in care.

Discussion We used a community-engaged approach to develop a grounded theory of the decision process for linking to HIV care among PLWH from small metropolitan and rural areas in Florida. Furthermore, we identified recommendations from participants at each point of the decision process that would facilitate engagement in and adherence to HIV care. Understanding the decision process for people who are linking to HIV care can help both public health and primary care providers facilitate a smooth transition from an HIV diagnosis to HIV care. Stigma is considered a barrier to HIV care in social ecological model constructs (Mugavero et al., 2011) and, as mentioned in the Results, stigma provides the context for the linkage to care decision. Stigma can be a characteristic that is viewed negatively by others, or it can be considered an outcome when someone is associated with the characteristic and then subsequently experiences negative consequences (Goffman, 1963). The stigma and fear of disclosure surrounding HIV linkage to care presents challenges such as a decrease in HIV testing or linking to HIV care (Goffman, 1963). Research has also shown that HIV stigma is greater for some populations than others (Wilson, Wittlin, Munoz-Laboy, & Parker, 2011). Stigmatizing attitudes or attitudes correlated with misunderstandings and misperceptions regarding HIV also exist within the health care system (Parker & Aggleton, 2003). Stigma is challenging because it creates an insurmountable barrier for HIV linkage to care for many PLWH. Fear of rejection, or of being rejected because of stigma, influences decisions to engage anywhere in the HIV care trajectory. A study focusing on provider perspectives in a rural Midwestern town revealed four ways in which stigma impacted linkages to HIV services: (a) staff of medical referral agencies stigmatizing clients, (b) physicians stigmatizing clients, (c) medical specialists stigmatizing clients, and (d) client-perceived stigma (Yanessa, Reece, & Bastia, 2008). Support is a complex term with many dimensions, including formal, informal, social, physical,

emotional, cognitive, and tangible stigma. The type and timing of support, and who delivered the support, seemed to have an important impact on participants’ perceptions of the care process and their recommendations about what is needed in the care trajectory. Consistent with the data from our study, Walsh, Horvath, Fisher, and CourtenayQuirk (2012) described the need for emotional support immediately after diagnosis. In a recent study by Kelly, Hartman, Graham, Kallen, and Giordano (2014), people with higher social support scores were associated with earlier diagnosis; however, support subscales did not show any significant associations with timely linkage. Many HIV care providers underestimate the impact an HIV diagnosis has on a person and are likely to view structural barriers, such as transportation or child care, as primary reasons PLWH do not seek care. Conversely, people diagnosed with HIV were more likely to view emotional barriers as the primary reason for not seeking care (Mayer, 2011). According to Jacobson (1986), emotional support is most needed during the crisis or grieving phase. Furthermore, when people are in the midst of crisis, they are unable to use (or even perceive) other types of support such as cognitive and tangible support. This is of particular importance in the process of linkage to care and our current practices for delivering an HIV diagnosis and is an area in need of more research. Linking PLWH to care requires a decision from the person infected with HIVand the decision process begins with diagnosis. Decision theories focus on how humans make choices from options they are given (Hansson, 2005). Early decision theories looked at the decision-making process in a sequential manner. However, modern decision-making theories recognize that such decisions are not made in a linear fashion (Hansson, 2005). Aids to decision-making, based on decision theory, are tools to help people make decisions about health care choices and allow for partnership between the client and provider. During the decision process, the client must realize that a choice needs to be made, know the options available, understand values that may impact the choice, understand the preferred options, and discuss values, options, and choices with the provider (Stacey et al., 2011). While this has been incorporated in HIV

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care as client-centered care, this approach has not consistently been implemented in the HIV counseling and testing experience. Receiving a diagnosis of HIV is a significant stressor that participants identified as a crisis with a grief-like response. Crisis and grief in response to an HIV diagnosis has been previously explored. Grief is a response to an anticipated or perceived loss and most often associated with the death of someone close (Mallinson, 2013). When HIV first emerged as an epidemic, and before ART, a loss and grief component was associated with the disease as partners died. However, grief responses can also be associated with the diagnosis of a chronic illness because the person perceives a loss of being able to fully return to his/her formal lifestyle or function (Sidell, 1997). A crisis is a temporary alteration or disruption in a person’s normal ways of coping and can be experienced as a result of receiving bad news such as an HIV diagnosis (Lewis & Lewis, 1989). A grief response to an HIV diagnosis can be similar to the crisis response and can lead to a feeling of threat or disruption to normal function. Reactions to a diagnosis of a chronic illness may include depression, alienation, withdrawal, anxiety, or abandonment (Sidell, 1997). As participants suggested, offering counseling services may help people effectively work through the grief/crisis period that results from an HIV diagnosis. Joseph and colleagues (2011) found many participants in focus groups who wanted to be linked immediately to ongoing mental health services. The concept of connection and navigation to transition people to HIV care has been supported in the literature. For example, Mallinson and colleagues (2005) identified connectedness as important for engagement in HIV care, and HIV-infected persons who had a perceived personal connection with staff were better able to transition into care. Similarly, Rajabiun and colleagues (2007) found that when program staff facilitated communication between HIVinfected persons and providers or sent appointment reminders, PLWH said it felt like someone cared, which helped them stay in care. Also, in the AntiRetroviral Treatment and Access to Services (ARTAS) study, participants were able to maintain a connection through a transitional strengths-based case-management intervention (Gardner et al.,

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2005). System navigation and peer navigation are interventions for linkage to care that have yielded positive outcomes (Liau et al., 2013). Mallinson and colleagues (2005) found that the ability to navigate and understand the complexities of HIV care influenced health literacy and subsequent engagement in HIV care. The responses of our participants to the crisis of being diagnosed with HIV varied widely, with some moving directly into care and others engaging in behaviors detrimental to health promotion. A crisis response from a change in health status can manifest in biophysical symptoms (e.g., tension, anxiety), negative feelings (e.g., anger, shock, shame), altered thoughts and perceptions (e.g., anguish, confusion), and a change in behavior (e.g., substance use; Hoff, 2001). Hoff (2001) also noted how altered thoughts and perceptions contributed to difficulty making decisions and, in the case of people newly diagnosed with HIV, difficulty making the decision to link to care. According to Hoff (2001), people often do not seek help for a crisis until after they have responded with negative outcomes. For example, participants in our research who chose not to fully engage in care noted a continuation or increase in risky behavior and/or substance abuse. Participants often voiced a need for help when they were diagnosed and felt unprepared or unable to successfully navigate toward care without needed support. Garland and colleagues (2011) interviewed PLWH who had never received medical care and asked them what could have been done differently. Most participants in that study were dissatisfied with the counseling and testing experience and said they needed more emotional support, counseling, connection, and navigation help. There is limited evidence evaluating the quality and delivery of counseling and testing services, and research is needed to better understand providers’ roles in the delivery of these services (Obermeyer & Osborn, 2007). Pivotal events, identified in the results, are not new to the HIV literature. A grounded theory study by Rajabiun and colleagues (2007) suggested pivotal points in the engagement cycle that presented opportunities for interventions targeted at linking people to care and keeping people from falling out of care. Strategies to facilitate engagement included providing knowledge, helping to obtain HIV care,

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building skills and abilities to deal with HIV, providing services to reduce barriers, and providing support networks (Rajabiun et al., 2007). Like the model presented in this paper, pivotal points provided an opportunity for intervention. Overall, our findings highlight the complexities of an HIV diagnosis and the decision to link to HIV care. The strength of the model is that it synthesizes otherwise fragmented literature about the decision process for linking to care. A clientcentered approach to care, as suggested by the participants in this research, is a step toward addressing the multifaceted social and structural issues PLWH face in the journey from infection to care through understanding the context and the patient’s social role. Furthermore, a client-centered approach may facilitate empowerment for PLWH to overcome the individual and social vulnerability associated with an HIV diagnosis (Gomes, Silva, & de Oliveira, 2011). There has been a tendency in the U.S. health care system to treat clients from a biomedical perspective and focus only on medical needs (Boyer & Indyk, 2006). Currently, the focus of HIV care is marketed as Treatment as Prevention. However, many of our study participants indicated that, for them, HIV care was much broader than treatment alone. In light of this, perhaps it is timely to reorient the goal of prevention efforts from Treatment as Prevention to HIV Care as Prevention. Linkage to care serves as the critical first step toward the goal of viral suppression because treatment will surely not exist if PLWH are not in care. Findings from our research can be used to promote discussions about policy changes related to HIV counseling and testing and enhancement of testing procedures to incorporate client-centered care. Limitations There were limitations in our research. Recruitment of persons who had never engaged in HIV care and Hispanics with HIV presented a challenge. Community partners were able to help identify persons who were out of care but were not able to recruit people never in care, or those newly diagnosed. Stigma and a low proportion of Hispanics with HIV in the area contributed to this challenge. Furthermore,

programs offered in the region of the research may differ from programs offered in other small metropolitan and rural contexts. These differences may have contributed to the perceptions of the HIV care process by participants.

Conclusions Nurses were on the front line when the HIV epidemic began. They advocated for those infected with HIV at all turns, ensuring fair and equal treatment in the health care system (Association of Nurses in AIDS Care, n.d.). Our data demonstrated a disconnection between how care should be delivered (i.e., client-centered) and the perception of how care is actually delivered. The concepts central to client-centered care, such as coordination (navigation), advocacy (support), and holistic understanding (context, shared decisions, health promotion, continuity) are not new to nursing, and public health nurses have addressed interactions between the environment and client for more than 100 years (Nightingale, 1860). Public health nursing, with its unique perspective in both individual health promotion and population health promotion, can guide care improvement for PLWH throughout the HIV care trajectory.

Key Considerations  Nurses working with people living with HIV (PLWH) in smaller metropolitan and rural areas should be aware of the possibility of higher levels of stigma that may contribute to a delay in seeking HIV care.  A person newly diagnosed with HIV needs emotional support before the provision of cognitive or tangible support.  A holistic understanding of the person diagnosed with HIV is necessary to help him/her enter and stay in HIV care.  Providers should be aware that pivotal events may help PLWH enter care but also may move them out of care.

Cook et al. / Linkage to Care Among People Diagnosed With HIV

Disclosures The authors report no real or perceived vested interests that relate to this article that could be construed as a conflict of interest.

Acknowledgments Funding was provided by Sigma Theta Tau, Alpha Theta Chapter. We thank Debra Lyon, PhD, Debra McDonald, MA for their assistance.

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