Health-Related Beliefs and Decisions about Accessing HIV Medical Care among HIV-Infected Persons Who Are Not Receiving Care

Abstract

In the United States, the publically supported national HIV medical care system is designed to provide HIV medical care to those who would otherwise not receive such care. Nevertheless, many HIV-infected persons are not receiving medical care. Limited information is available from HIV-infected persons not currently in care about the reasons they are not receiving care. From November 2006 to February 2007, we conducted five focus groups at community-based organizations and health departments in five U.S. cities to elicit qualitative information about barriers to entering HIV care. The 37 participants were mostly male (n = 29), over the age of 30 (n = 34), and all but one had not received HIV medical care in the previous 6 months. The focus group discussions revealed health belief-related barriers that have often been overlooked by studies of access to care. Three key themes emerged: avoidance and disbelief of HIV serostatus, conceptions of illness and appropriate health care, and negative experiences with, and distrust of, health care. Our findings point to the potentially important influence of these health-related beliefs on individual decisions about whether to access HIV medical care. We also discuss the implications of these beliefs for provider–patient communication, and suggest that providers frame their communications with patients such that they are attentive to the issues identified by our respondents, to better engage patients as partners in the treatment process.

Introduction

D espite the recognized benefits of HIV medical care,^1

–4 and a publicly supported national system designed to provide HIV medical care to those who would otherwise not receive such care (funded through the Ryan White HIV/AIDS Treatment Modernization Act), many HIV-infected persons do not receive optimal medical care.⁵ Researchers examining various U.S. populations have estimated that 26%–45% of HIV-infected persons are aware of their serostatus but are not receiving continuing HIV medical care.^6
–8

Previous work reflects an effort to understand the barriers that persons face in accessing HIV medical care. Barriers related to substance use, mental health, income, insurance, transportation, housing, and other subsistence needs have been well documented.^{9

–18} Other factors found to be related to decreased utilization of care are stigma, concerns about confidentiality, negative experiences with health care providers, dissatisfaction with one's HIV counseling and testing experience, and distrust of providers and the health care system.^{12,14

–17,19

–26} However, few studies of access to HIV medical care have used qualitative methods to examine these barriers, and most have been limited to a single study site. Qualitative techniques are ideally suited to the exploration of access to medical care because they can provide detailed, in-depth information about barriers to care and the relationships between those barriers. Moreover, most research on this topic has involved collecting retrospective information from persons who are currently receiving HIV medical care; we are not aware of qualitative studies that have been specifically focused on HIV-infected persons in the United States who were not receiving HIV medical care. Because these studies exclude HIV-infected persons who are not currently receiving HIV medical care, their findings may not be representative.

To fill this gap, we conducted focus groups in five U.S. cities that elicited qualitative information from HIV-infected persons who were not receiving medical care about barriers to entering HIV medical care.

Methods

Five focus groups were conducted at community-based organizations (CBOs) and health departments from November 2006 through February 2007 in the following cities: Indianapolis, Indiana; Newark, New Jersey; New York, New York; Philadelphia, Pennsylvania; and Seattle, Washington. The design and the implementation of the focus groups were a collaborative effort between the Centers for Disease Control and Prevention (CDC), the state or city health department and their community partners, and Aeffect Inc., a federal contractor. Focus group participants were recruited by the health departments and their community partners, which included hospitals, clinics, counseling and testing service providers, community-based HIV/AIDS service organizations, and homeless shelters. Staff at these organizations were asked to refer HIV-infected persons who had never received HIV medical care for participation in a focus group; recruitment flyers were also placed at the facilities of partner agencies. Persons who had not received HIV medical care during the past 6 months were eligible to participate. The CDC Institutional Review Board (IRB) determined the focus groups to be exempt from IRB review because they posed no more than minimal risk to participants and no personal identifiers were collected.

All five focus groups were conducted by the same moderator, who was chosen because of his experience facilitating focus groups composed of HIV-infected persons. The race and gender of the moderator, an African American man, matched the race and gender of the majority of focus group participants. A total of 37 persons (6–9 per group) participated in the focus groups. Participants were selected according to the following eligibility criteria: HIV infection, diagnosis of HIV infection at least 3 months before the focus group, and no HIV medical care during the past 6 months. Eligibility was determined based on self-reported information. Participants were pre-screened by CBO staff and subsequently re-screened for eligibility by study personnel at the focus group site. Informed consent and permission to record the focus group was obtained from all participants. The group discussions lasted approximately 2 hours, and each participant received an incentive of $50.

Participants were asked a series of questions about personal concerns and worries, barriers to HIV medical care, and motivators to obtain HIV medical care. The data for analysis came primarily from the responses to the question about barriers to care. Participants were asked, “What are some of the reasons that people wait or decide not to see a doctor about their HIV?” Although most participants voluntarily disclosed their HIV serostatus during the group discussion, questions were framed in general terms (i.e., to ask about experiences of HIV-infected people rather than the participant's personal experiences).

Data analysis

The purpose of our analysis was to identify themes generated from focus group discussions about barriers to accessing HIV medical care. The focus group sessions were videotaped or audiotaped and later transcribed for analysis. The transcripts were reviewed for accuracy by Aeffect. In accord with a grounded theory approach, themes were not identified a priori but instead emerged through review of the data.²⁷ Two researchers (L.B. and J.F.) independently read the focus group transcripts and identified and coded themes related to barriers to accessing HIV medical care. The authors then compared the identified themes and reconciled discrepancies by reassessing the data. Key themes were summarized and reviewed with the collaborating health departments to ensure validity.

Results

To maintain anonymity and the exploratory purpose of the focus groups, we did not collect detailed demographic information from the participants. Most of the participants were male (n = 29), 7 participants were female, and 1 was transgender. Participants ranged in age from mid-20s to mid-50s, and most participants were African American. During the discussion, several participants mentioned experiencing homelessness, and others reported substance abuse problems. The only participant who had received HIV medical care during the 6 months before the focus group had entered care recently. Although this participant did not meet the selection criteria for the focus groups, his responses were included in our analysis because the transcripts did not include participant identifiers.

Participants in every focus group mentioned barriers related to HIV stigma, substance use, and mental health problems. Structural barriers such as transportation, homelessness, and lack of money or insurance were also mentioned. However, the discussions also uncovered psychosocial barriers that are less well understood and that coexist with structural barriers and HIV stigma. These psychosocial health belief–related barriers, which are often overlooked in studies of barriers to HIV care,^14,28 were the focus of our analysis. Key themes were (1) avoidance and disbelief of HIV serostatus, (2) conceptions of illness and appropriate health care, and (3) negative experiences with, and distrust of, health care providers and the health care system. These three themes surfaced in each focus group, indicating that participants had experienced similar barriers to HIV medical care despite differences in geographic location.

Avoidance and disbelief of HIV status

Care as a reminder of illness

For participants, engaging in HIV medical care—attending medical appointments, having discussions with health care providers, and taking HIV medicines—was a reminder of their HIV status, something they consciously tried to avoid thinking about. As one participant said when discussing a previous care provider,

It's almost like it's a double-edged sword because a lot of days I don't want to think about that I'm HIV-positive and going to Dr. [NAME]. You know, like every day taking my meds reminds me of that … you know, ’cause I'm trying to put it out of mind and just go on with my life, but it's like that health care piece, just like I said, every day it's like that reminder.

For some, the thought of accessing HIV medical care evoked fear of the disease and interfered with attempts to avoid thinking about their HIV infection. For a subset of participants, this fear appeared to be intertwined with an unwillingness to accept their HIV serostatus, manifested as expressions of doubt about being HIV infected. This doubt was often voiced by participants who did not experience physical symptoms. As one participant said,

I guess for me that realization, or the fact that I've got someone with documentation stating this and that. It becomes so real to me, and it's still to me, it's still like … I'm kind of still in disbelief because I've never been sick. I don't take meds, I don't, you know. I haven't done anything outside of what I've always done before being told that this is what it was.

When asked whether people with HIV should seek medical treatment, one participant articulated the belief that doing so before one was “mentally capable of dealing with it” could be detrimental to one's mental health. For participants such as this one, accessing care would mean accepting one's HIV serostatus and would make it more difficult to avoid thoughts of HIV and its meaning in one's life. As another participant stated when asked why people did not seek medical care for their HIV disease, “Sometimes you are just hoping it will go away.”

Fear of laboratory tests as indicators of the disease and its progression

When describing the reasons that people with HIV do not seek medical care, many participants focused on laboratory indicators such as CD4 T-lymphocyte cell counts as a specific part of the care experience that frightened them. The participants' lack of knowledge about the tests and the meaning of the results compounded their fear and resulted in avoidance. As one participant stated,

The doctor … when I did go, he scared me out of the room. All he wanted to talk about was my T-cell [counts]. I looked at that and “Wow! What does that mean?” “You are [unintelligible] and so many [unintelligible]” and all these numbers. I just don't want to hear the numbers no more. No numbers, no [CD4], no T cells, no nothing. I don't want to know about that stuff.

Test results were feared because they indicate how far HIV disease has progressed. Participants mentioned being afraid of hearing results indicating poor prognosis and apprehension about what that might mean for their health, as described in this exchange between participants about the role of fear in decisions not to access HIV medical care:

Participant 1: The fear of knowing how long I got. How long I got to live. You know what I mean? The fear of knowing if my blood cells are low, high. You know? It drives me crazy, but if I went to the doctor, how about if it is …

Participant 2: If HIV is completely [progressed] … medicine won't help.

Participant 1: That is my fear.

Participants also mentioned avoiding laboratory testing because the results might disrupt their perception of good health. As one participant stated,

I would say a lot of people don't want to go [see a doctor for HIV] because of the results they're going to get, like what the CD4 is. You feel you're doing real well and you go in and your CD4 is real low. I think a lot of people don't want to know. They don't want to keep track of how they're doing.

Some participants described strong fears about HIV's impact on their health after first learning their HIV status, feelings that were reinforced by their lack of understanding of the meaning of HIV laboratory test results and poor communication with health care providers. Some believed that providers should first allow patients the opportunity to process their feelings about their HIV serostatus before introducing prognostic test results and medications. As one participant described,

To me it was like it was already devastating enough to find out that I had the virus. “Oh. You got this virus.” “Oh. Wow.” Then I got to see the doctor. OK. Fine. I went to see the doctor and he is going to tell me that “Oh, your viral load is [unintelligible].” What that mean? I don't know what a viral load is. I don't know what my T-cell [count] is. I am just coming off finding out that I got this and you are telling me all these numbers and that is just scaring me to death.

Conceptions of illness and appropriate health care

Seeking care only when feeling “sick.”

Many participants expressed the belief that HIV medical care is not necessary when one does not feel sick. For these participants, the absence of physical symptoms was equated with being healthy and therefore not in need of medical care. One participant said,

If you don't feel it [HIV] then why get the medication? Then you feel fine then. You feel fine. You got to feel sick in order to get the medication … unless you are just a pill freak.

The notion of monitoring laboratory test results and receiving preventive care to forestall progression and the occurrence of symptoms was not mentioned by any of the participants, although one participant mentioned that a desire to know one's prognostic test results would be a reason to access care. Rather, most believed that despite their HIV serostatus, HIV medical care was not necessary. The impetus to seek HIV medical care that was mentioned most often was “feeling sick.”

Participants mentioned weight loss as a symptom that would motivate them to seek HIV medical care. As one participant stated in response to a question about when HIV-infected persons should access care, “If you feel sick, that's the only time you should go. If I feel good, I'm not going.”

Lack of experience with health care

Ideas about the appropriateness of delaying HIV medical care were linked with participants' lack of experience with providers and the health care system. Some participants mentioned that accessing medical care for any illness was a new experience for them. As one participant put it,

I wasn't raised going to a doctor and I know I am HIV-positive, but yet, like I said, I am not used to seeing a doctor. I am a black man and my family, you know, weren't into making sure I see a doctor periodically or whatever, and time doesn't permit the ability. It's something that an individual has to learn.

Self-care and spirituality

For some participants, exploring alternatives to allopathic HIV medical care was preferable to seeing a doctor, and this inclination appeared to be reinforced by their lack of symptoms and inexperience with health care. Not perceiving themselves as ill and being unaccustomed to accessing medical care for other health problems, many relied on self-care. When asked about barriers to seeking HIV medical care, one participant responded,

Some people, including myself, have been raised by parents that didn't believe in using medication. They [unintelligible] did homeopathic type of stuff, so it is very difficult to break from that mold if it doesn't seem like it is necessary.

Many mentioned taking care of their health through over-the-counter medications and nonmedical products such as herbs, vitamins, organic foods, and juices. Others mentioned lifestyle changes such as quitting smoking and getting enough rest. Participants believed these forms of self-care were appropriate in the absence of symptoms but left open the possibility of accessing HIV medical care in the future. Rather than depending on the results of laboratory tests to indicate the need for medical care, some participants believed that their spirituality and an internal sense would help them “know when to go.” As one participant stated,

I am taking small steps in my own care. Eating right. Getting rest. Whatever that will call for, but I don't do drugs. I don't have sex promiscuously. Number one, I can't and I believe in God and I also believe in the spirit, and I believe my spirit will let me know when something is wrong with me. You know, long enough for me to go and see a doctor because it would have to take something very wrong for me to see a doctor.

Negative experiences with, and distrust of, health care

Negative HIV testing experiences

Participants recounted having had negative experiences during posttest counseling that influenced their feelings about HIV medical care. Some participants described encountering a lack of sensitivity and inadequate follow-up by HIV counseling and testing staff. One participant described how she learned her status and how it affected her feelings about health care providers:

Participant: I had a bad experience with the doctor that told me [about my positive HIV serostatus]. He left a message on my answering machine on my birthday.

Moderator: Left a message on your answering machine?

Participant: Yeah. “I just want to let you know that you do have AIDS and going to die. I would recommend that you terminate your pregnancy, and of course, I will no longer be your doctor.” After that, I just, you know, I just didn't believe in any doctor.

Perceived HIV stigma in the medical community

In interactions with the health care system, many participants felt that they had been treated poorly by health care workers because of HIV stigma, and this discouraged them from continuing to access care for HIV. One participant related a perception, shared by others in the focus groups, of the way doctors feel about HIV-infected people, “You've got AIDS. Don't come near me. You are not clean.” Some shared stories of being shunned or treated differently by providers after the participants' HIV serostatus was known. For example, one participant described his experience with a provider to whom he had felt close: the provider discontinued the participant's care after learning the participant was HIV infected—a decision that the participant attributed to stigma. Another participant described being angry that his doctor did not inform him of the need to practice safer sex with other HIV-infected people to avoid being infected with another strain of HIV.

Poor communication with providers

Participants also mentioned feeling pressured by providers to take medications, not understanding the medical terminology used by providers, and feeling suspicious about the treatments recommended by providers. Participants described their interactions with providers as too rushed and focused on medications, for example, “Doing everything too fast. It was like, your [count's] low—then take some pills.” One participant shared the following encounter with an HIV medical care provider:

He didn't ease me into it. That is the thing. He did not suggest. He just … “You got to take this!” I don't know. [unintelligible] will like scare me. I am like, “Should I or shouldn't I?”

These experiences, coupled with the distrust of the medical community, led participants to question other aspects of HIV care, not just medications. As one participant stated,

When the doctors do these tests and they are always these blood tests and everything is up on the computer, and they tell you, “This is fine. This is fine.” How do we really know if we don't really understand what these tests are always about? It's always like these numbers, numbers, and numbers. How do we know that [what] they are actually telling us?

Negative feelings about medications

Negative feelings about HIV medications were mentioned often. Many participants expressed fears of unpleasant side effects and the opinion that HIV medications do more harm than good. Participants saw medications as an inevitable part of HIV medical care, and these sentiments were often coupled with expressions of distrust of providers. As one participant stated,

There ain't but two things a doctor is going to do. Tell you that you need surgery or here is some medication. That's it. That's all they ever do. “I will cut you, or here are some pills”—like a drug pusher. I have been on drugs and stuff like that all my life. Drugs. Somebody always want to send me drugs, and all I see about a doctor is about making money because they put all these drugs on the market. They are killing people, and then you want me to take another drug that is supposed to help me for my virus, but all it does is leaves toxins in my body.

Fears about confidentiality

Many participants expressed concerns about confidentiality that were based on negative experiences. Some mentioned separate entrances or certain floors at clinics that were dedicated to HIV medical care, the use of which was perceived as identifying one as an HIV-infected person. Because HIV stigma in their communities was reported to be high, these structural arrangements were seen as a barrier to accessing care. As one participant put it,

Because you can get me to go to the doctor or to the hospital but when I get there, the way they got it … like, you are separate from everybody else. Everybody knowing what you are going there for. He got it because they separate the AIDS clients from the doctors from the other people. So they know when you go to this side of the hospital, that is for the [unintelligible] people over there. So a person may go, but after that, I am not coming here no more.

Distrust of government and health care institutions

In addition to describing their distrust of specific providers because of negative experiences, participants shared generalized feelings of distrust of health care–related entities, which contributed to suspicions about recommended medications. Participants were wary of government health care, the pharmaceutical industry, and the medical community as a whole. Some mentioned feeling as if providers were “experimenting” with them. As one participant stated,

I am also an Army veteran, and I don't trust the government with my health care. I just don't. I won't be a guinea pig. I know when well is well, and when well isn't.

Participants were suspicious about HIV medications promoted by pharmaceutical companies and the medical community. These feelings directly influenced decisions about accessing medical care for HIV. As one participant said, “The pharmaceuticals are pressuring the doctor to give me more drugs. That is why I don't want their medication.”

Some participants expressed the belief that information about HIV and its origin are withheld from affected communities. One participant voiced the concern this way:

Participant: How do they … ? How can I put it? When this virus first hit a lot of people, why did they take so long to help people … the poor people?

Moderator: Because they didn't know what it was?

Participant: I think they knew what it was.

Discussion

Focus group participants gave voice to significant psychosocial barriers to accessing HIV medical care that have not been the focus of most studies of HIV medical care utilization. These barriers were found in all five cities in which the focus groups were conducted, indicating that the salience of these themes was not regionally specific.

In all the focus groups, participants described consciously avoiding medical care because getting care would be a reminder of their HIV status and because they did not perceive care as necessary in the absence of symptoms. Other studies have found that being asymptomatic makes it difficult for some persons to believe they are HIV infected^11,29 and can facilitate avoidant coping strategies, such as refraining from seeking care.³⁰ A recent study by Ulett and colleagues³¹ found an inverse association between high baseline CD4 counts and retention to HIV care. Rajabun and colleagues³² found that acceptance of HIV diagnosis affects engagement in medical care. Our findings contribute to this knowledge by describing the symbolic importance of laboratory tests in the minds of HIV-infected persons and how fear of these tests can be a disincentive to care.

Although aware that others thought they should seek HIV medical care, participants chose not to seek care because it would make their HIV infection “real” to them, and they described fears that HIV-related laboratory test results would disrupt their perception of themselves as “doing well.” Moreover, participants worried that engaging in HIV medical care would subject them to HIV stigma and discrimination. Cognitive dissonance theory may be useful to help us understand these findings. According to the theory, when persons are confronted with new ideas or information that contradicts their beliefs or threatens their self-image, they may seek to reduce the psychological conflict this produces by discrediting or avoiding that which supports the dissonance-producing idea.³³ Liu et al.³⁴ found that efforts to avoid stigma and cognitive dissonance were a barrier to HIV prevention practices among Chinese migrants. However, the relationship between individual attempts to avoid cognitive dissonance and decisions about seeking HIV medical care has not been explored. Further work in this area is needed, as the theory has produced programs³⁵ and insights about behavior change³⁶ that could be adapted as interventions to encourage HIV-infected persons to engage in medical care.

Participants understood illness as being defined by feeling sick; for them, seeking care in the absence of symptoms was unfamiliar. This finding illustrates how conceptions of illness can affect individual decisions about whether to accept or resist the advice of health care providers. The fact that some of the participants were not accustomed to seeking medical care for any illness contributed to their discomfort with seeking care for HIV infection. This finding supports the work of Lain et al.,²¹ who found that, among a small sample of men, minimal contact with providers was related to delayed HIV diagnosis and care.

In the focus groups, participants shared unpleasant experiences with, and suspicions of, health care providers, and described them as directly affecting their decisions about whether to seek HIV medical care. Their understanding of the benefits and drawbacks of HIV medical care was colored by these feelings of distrust, which had been engendered by negative interactions with, and beliefs about, the health care system. Perceptions of discrimination or unfair treatment by providers have been associated with decreased care utilization and poorer health outcomes among persons engaged in HIV medical care.^21,25,37,38 Our analysis illustrates the role of such perceptions among those who choose to delay medical care for HIV infection.

In addition to distrust of specific providers, the participants described distrust of health care institutions and systems, which has also been found to affect the utilization of health care.^26,39,40 Suspicions about the health care system and fears about medical experimentation are particularly resonant for people of color,^41,42 who accounted for most of the new diagnoses of HIV infection in the United States in 2006.⁴³ In the United States, persons who are members of minority races/ethnicities have a history of distrust of the medical system that is based on the experience of racism and exploitation exemplified by the Tuskegee Syphilis Study.⁴⁴ The negative health-related beliefs engendered by these historical circumstances are powerful deterrents to the utilization of HIV medical care^11,12,14,45 and have rarely been explored by the use of qualitative methods, which may help us understand more clearly how these beliefs influence care-seeking behavior.

The themes identified in our analysis may reinforce each other. For example, avoidance of medical care in the absence of symptoms, along with a preference for self-care, are reasonable in the context of the pervasive feelings of distrust and suspicion voiced by many of the participants. Moreover, conceptions of appropriate health care may promote suspicion of health care providers, as providers' beliefs about maintaining health through monitoring test results and prescribing medication in the absence of symptoms was unfamiliar to many of the participants. Distrust of providers and the health care system may be associated with participants' questioning the treatment recommendations of providers and, in some instances, the positive HIV test result itself. Likewise, poor communication with providers may strengthen participants' fears about HIV-related prognostic test results and their behavioral disengagement from care.

The perception of HIV-related stigma voiced by many participants may underlie the relationship between distrust and avoidance. Participants described feeling discriminated against by health care providers and expressed fears that their HIV serostatus would be disclosed. These experiences may be associated with their rejection of the stigmatized identity of HIV-infected persons, manifested through questioning their HIV status and avoiding medical care.⁴⁶ In this way, HIV stigma may strengthen the barriers to accessing HIV medical care voiced by the participants. Other studies have shown that perceptions of stigma are associated with decreased utilization of care among HIV-infected persons.^19,24,47 Our analysis provides some insight into the mechanisms through which stigma may influence access to care. Further exploration is needed to elucidate how the health-related beliefs uncovered by these focus groups interact and how they relate to structural barriers and HIV stigma.^11,12,14

Our analysis may inform efforts to engage HIV-infected persons in medical care. The experiences shared by the participants underscore the importance of the HIV counseling and testing experience in linking HIV-infected persons to care, a finding reported by other researchers.^17,23,48 Recent studies have shown the importance of examining factors associated with linkage to and retention in care, and the positive role that supportive services may play in this process.^31,49 These results suggest that interventions that link HIV-infected persons to care like the Antiretroviral Treatment Access Study (ARTAS) may be effective for this population.^50,51 Because ARTAS uses a strengths-based case management approach and assesses readiness to enter care, it allows the individual time to emotionally process the HIV diagnosis, which the focus group participants felt was particularly important.

It is critical that providers of HIV medical care be sensitive to the issues raised by the focus group participants—fear of laboratory test results, distrust of providers and HIV medications, belief that treatment is necessary only when the person experiences symptoms—to better engage patients as partners in the treatment process. Patients who participate in decisions about their treatment have reported satisfaction with the information they received and with their communication with their health care providers, although researchers caution that providers must work within the boundaries of their patients' readiness to engage in care.⁵² Improving patient-provider communication may help to reduce the distrust reported by participants in our focus groups about providers, medications, and the health care system. Effective interventions focused on increasing adherence to HIV medications have improved patient-provider relationships⁵³ and have the potential to increase the patient's trust. Likewise, interventions that have improved the communication skills of HIV care providers in helping their patients reduce risky behaviors^54,55 might be adapted to help their patients reduce avoidant coping behaviors. Communication between providers and patients should address the disconnect between the notions of some patients that HIV medical care is unnecessary in the absence of physical symptoms and the beliefs of providers that preventive care and monitoring are important in forestalling HIV progression. In addition, our finding that patients often fear laboratory test results as indicators of disease progression, and that this fear is compounded by distrust and a lack of understanding of the usefulness of the results, indicates that providers should frame their communications with patients such that they are attentive to these fears and address identified information gaps.

Because ours was a convenience sample, our findings cannot be generalized to all HIV-infected persons who are not receiving medical care. However, the demographic characteristics of our participants are in line with those of HIV-infected persons in the United States, and the themes that emerged were common to groups in various geographic locations. This commonality supports the usefulness of our findings to inform studies of barriers to HIV medical care.

Because we did not collect detailed demographic information about the participants, we were unable to explore possible relationships between factors such as gender, age, or time since diagnosis and the themes found in our analysis. It is possible that such factors are modifiers of some of the health-related belief barriers examined here; investigation of the associations between these factors is worth pursuing.

Another potential limitation of our findings is that focus groups may lead participants to express feelings not personally held because they wish to conform to the group.⁵⁶ However, focus groups are excellent vehicles for uncovering social and cultural understanding of particular topics, and they are a culturally sensitive method of data collection,⁴⁷ one that may decrease social desirability bias. In fact, these strengths of focus groups may be especially important in uncovering the psychosocial themes discussed here. For example, it may be easier for participants to voice their distrust of the medical community in groups of their peers than in one-on-one conversations with a member of the medical community.

Our analysis supports the use of qualitative methods to increase understanding of the barriers to medical care faced by HIV-infected persons who are not in care. Focus groups give us a unique perspective on commonly held thoughts and group norms, which are important because, as our findings illustrate, the cultural and social context in which a person lives influences health-related beliefs and behaviors in important ways.^57
–59

Footnotes

Acknowledgments

We thank the focus group participants for sharing their experiences. The authors recognize the efforts of the Never In Care staff from the Indiana State Department of Health, the New Jersey Department of Health and Senior Services, the New York City Department of Health and Mental Hygiene, the Philadelphia Department of Public Health, the Washington State Department of Health, and the Clinical Outcomes Team, Behavioral and Clinical Surveillance Branch, and the Clinical Support Team, Laboratory Branch, of the Division of HIV/AIDS Prevention at the CDC.

The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

Author Disclosure Statement

No competing financial interests exist.

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