Barriers to care for rural people living with HIV: A review of domestic research and health care models

Abstract

Historically, the availability of heath care in rural areas has been sparse, and specialized care for people living with HIV (PLWH) has been especially problematic. Rural patients are faced with substantially greater barriers to care than their urban counterparts. A systematic review of empirical studies was conducted concerning barriers to care among patients infected with HIV in rural areas of the United States. This systematic review yielded 15 viable articles for analysis. Among the 27 barriers identified, the most commonly discussed were transportation needs, provider discrimination and stigma, confidentiality concerns, and affordability and lack of financial resources. Barriers to care must be addressed in conjunction with one another in order to alleviate their impacts. Key health care models addressing these concerns are highlighted and used to address the state of the field and provide suggestions for future research.

Although the HIV epidemic is still heavily concentrated in urban centers, there is a growing population of people diagnosed and living with HIV infection (PLWH) in nonmetropolitan areas of the United States (Centers for Disease Control and Prevention [CDC], 2008). Over the past 2 decades HIV prevalence has increased in peri-urban and rural areas (Berry, McKinney, & McClain, 1996; CDC, 2008; Fordyce, Thomas, & Shum, 1997; Steinberg & Fleming, 2000). At the end of 2008, 49,645 adults and adolescents were estimated to be living with HIV in rural areas of the United States, according to the most current data from the CDC (2009).

Individuals living in rural areas are especially at risk for not having adequate access to health care. Antiretroviral therapy (ART) has been proven effective in reducing viral loads, increasing CD4+ T cell counts, and decreasing mortality (Detels et al., 1998; Hogg et al., 2001). However, Cohn and colleagues (2001) found that few adults located in rural areas of the United States received HIV care, and rural patients were less likely to be taking ART. Additionally, rural individuals started new and advanced HIV therapies later than their urban counterparts (Ohl et al., 2011).

Lack of access to services and poor retention in medical care has been shown to predict poor health outcomes for PLWH, most notably in lower CD4+ T cell counts and more rapid disease progression (Giordano et al., 2007). Additionally, those who have missed medical appointments within the first year after initiating ART have been shown to have more than twice the rate of advancing HIV disease (Mugavero et al., 2009). This is especially problematic in rural areas where rural residence has been associated with delayed entry into care and increased mortality (Lahey et al., 2007; Ohl et al., 2010).

Delayed entry into care and sporadic retention are often caused by barriers to care. Barriers vary by individual and generally depend on geographic, social, cultural, and community factors. Tripp-Reimer, Choi, Kelly, and Enslein (2001) identified several culturally specific barriers to care that occur within patient and provider interactions; these include disjunction between provider and patient because of differing cultural viewpoints, miscommunication because of different cultural references and medical jargon, and cultural and minority implications of poverty and access to care. These barriers can affect patients’ willingness to remain in care and can reduce optimum service utilization. Although Tripp-Reimer and colleagues (2001) were discussing diabetes and not HIV, these examples parallel barriers to care in general and have similar implications for PLWH as well as patients with other chronic health conditions. Cultural factors can also impact individuals trying to gain access into the health care system. Asanin and Wilson (2008) discussed the difficulties of immigrants trying to gain access to health care because of language barriers, lack of female doctors who are necessary for some cultures and religions, and differences in perspectives on health and healing.

Depending on an individual’s viewpoint, culture, community, and geographic location, different circumstances can be determined to be barriers to care in the sense that they inhibit individuals from accessing and remaining in care. Several common barriers to care impact PLWH, including lack of specialized medical services, stigma, and limited social support mitigated by distance and isolation. Reif, Golin, and Smith (2005) found that people living in rural areas identified twice as many barriers to care as their urban counterparts and Heckman and colleagues (1998) found that rural PLWH assigned higher severity ratings to barriers to care than those living in urban areas. These are striking comparisons that add to the argument that receiving care is much harder for individuals living in rural areas of the United States.

This paper aims to review the current research literature on barriers to care for PLWH in the rural United States. The review is focused on people living in rural areas of the United States because of the vast social, political, cultural, and geographic variations across countries. The review also examines current health care models within the framework of reducing barriers to care. The goal was to identify strengths and shortcomings of previous research as well as to make recommendations for decreasing the barriers to care and improving future research on HIV services in rural areas.

Methods

A literature review was conducted in Pubmed/Medline and PsycInfo to locate articles that focused on original research identifying barriers to care for PLWH outside of metropolitan areas of the United States. Articles were located through January 15, 2012 in electronic databases using a combination of the key terms barriers, barriers to care, retention, retention in care, HIV, AIDS, and rural. Non-English articles were excluded as were articles not published in scholarly journals. No restrictions were placed on when the articles were published. Only articles that reported on primary research to identify barriers to care were included. Articles containing non-empirical discussions or commentaries were not used in the analysis; however, their references were reviewed to manually locate primary research articles that would fit the current study’s criteria. In the same vein, studies conducting secondary analyses were excluded to avoid duplicating original research (Heckman, Catz, Heckman, Miller, & Kalichman, 2004; Heckman & Carlson, 2007; Ryan, Forehand, Solomon, & Miller, 2008). In instances where multiple articles discussed different stages of research for the same study, the article deemed most complete was used to avoid overlap (Heckman, Somlai, Kelly, Stevenson, & Galdabini, 1996). Studies that used the already-established Barriers to Care Scale (BACS) as the only assessment tool were excluded to avoid inflating the number of barriers specifically identified by the BACS and to assure that only new information was used.

The electronic and manual search yielded 222 potential articles (See Figure 1). Abstracts were reviewed to determine if they matched the eligibility criteria: (a) conducted in the United States, (b) addressed barriers to care, (c) concerned PLWH, and (d) had a strictly rural population. (Note: The study by Rhodes and colleagues [2010] was included in the review even though only 14% of the sample were known to be infected with HIV. This decision was made because the article focused on both the barriers-to-care for those who are known to be infected with HIV as well as the barriers to entering into the health care system through testing.) Because the definition of rural varied across studies and was often self-reported by the participants, it was decided that any study that contained an all-rural sample (as defined by the study authors) would be eligible for inclusion. Studies that included an urban sample along with a rural sample were included only if data from the rural samples was reported separately from the urban sample data.

Figure 1.

Flow diagram of barriers to care literature review.

Note. PLWH = persons living with HIV infection

A total of 43 articles met these criteria. After further review, studies focused on barriers associated with medication adherence were excluded because these studies addressed different types of barriers than those associated with entry to or retention in care (Amico et al., 2007; Heckman et al., 2004; Mukherjee, Ivers, Leandre, Farmer, & Behforouz, 2006). The final review yielded 15 eligible articles. A systematic examination of each article extracted information on study location, sample characteristics, recruitment type, data collection methodology, and definition of rural location. Special attention was given to how different barriers to care were addressed. Barriers to care addressed in each article were recorded in the language that the author used to maintain original integrity. Information that provided additional meaning and context for each barrier to care was also coded.

Study Characteristics

The majority (10 of 15) of the studies included in this review were conducted in the southeast United States (See Table 1). This was consistent with identified needs of PLWH in rural America. Specifically, according to the most recent CDC Surveillance Report (2008), 67% of all rural AIDS cases were reported in the South. Other key areas covered in the research were California, Wisconsin, and American Indian Reservations that all had moderate to high rates of rural HIV cases. Rural areas of the Northeast and Mid-Atlantic regions were underrepresented.

Table 1.

Characteristics of Studies That Address Barriers to HIV Care in Rural Areas of the United States

Author, Date	Journal	Location	Data Type	Sample	Recruitment
Duran et al., 2000	American Indian and Alaska Native Mental Health Research	American Indian Reservation (a western tribe)	Interviews conducted by peers (HIV-infected bilingual American Indians from the reservation population)	28 HIV-infected American Indians (22 male, 4 female, 2 transgender)	Interviewees referred through an American Indian-operated private nonprofit HIV prevention and treatment organization on reservation, posters, providers, tribal health department AIDS office
Goicoechea-Balbona, 1997	Health and Social Work	Belle Glade, Florida	Case study	One community	N/A
Heckman et al., 1998	AIDS Care	Wisconsin	Survey	N = 226 men and women living with HIV in Wisconsin	Surveys sent to 9 AIDS service organizations
Kempf et al., 2010	AIDS Patient Care	Alabama	Focus groups; Qualitative assessments	40 HIV infected women, ages 19 and older, English speaking, 92% Black, 7% White	Recruited from four outpatient clinics providing services to HIV- infected patients residing in 23 predominantly rural counties through distribution of brochures within the clinics
Mainous et al., 1997	AIDS Patient Care and STDs	Central and Eastern Kentucky	Survey	N = 63 HIV infected adults	All adults residing in study location were mailed a survey
Mamary et al., 2004	Health Expectations	Rural Northern California	Focus groups	30 HIV-infected individuals, receiving health care, residing in a rural mountain region of northern California (89% White)	Recruited by HIV case workers
McKinney, 1998	AIDS Patient Care and STDs	Southwest Georgia, Northwest Mississippi, Southeastern South Carolina, South Texas, and South Central Washington	Interviews	Five study clinics (individual interviews with medical staff, case managers, and HIV- infected women at the clinics as well as with representatives of other health and social service organizations that serve HIV- infected women)	Study sites were selected to reflect the diversity of women affected by HIV disease and varied approaches to delivering HIV care.
Rhodes et al., 2010	Culture, Health and Sexuality	Rural North Carolina	Ethnographic in-depth interviews (conducted in Spanish)	21 immigrant Latino MSM, living in the rural south-eastern United States, ages 18 years and older	Purposive snowball sampling, 8 men suggested by laypeople, those participants suggested others that fit into study criteria
Roeder, 2002	Journal of HIV/AIDS and Social Services	A Midwest state	Survey (data collected 1997 and 1999)	1997: 38 patients, 85 providers 1999: 53 patients, 122 providers	Surveys mailed to all people seeking HIV-related social services from an AIDS service organization; Surveys were mailed to a random sample of directors of public heath and human/social services departments; physicians; and counseling, housing and other key providers
Sarnquist et al., 2011	AIDS Care	California	Retrospective structured interviews	64 HIV-infected women (32 White, 19 Latina, 10 Black, 3 Other)	Living in rural areas and receiving HIV care at 11 health care facilities
Sutton et al., 2010	The Journal of Rural Health	10 Southern states (Alabama, Arkansas, Florida, Georgia, Louisiana, Mississippi North Carolina, South Carolina, Tennessee, Virginia)	Cross-sectional survey	N = 449 (243 health departments, 133 HIV testing sites, 73 HIV treatment sites)	All county health departments serving populations of more than 50,000 persons within 10 southern states were mailed surveys; testing sites and treatment sites referred by health department
Vyavaharkar et al., 2008	Journal of Health Care for the Poor and Underserved	South Carolina	Three focus groups	22 HIV-infected African American women	Women were recruited through community-based organizations and a university-based research study of rural HIV-infected women
Walker, 2002	Journal of Mental Health Counseling	Not reported	Interviews and naturalistic observation	4 HIV-infected women, 8 service providers	Purposeful sampling in two rural HIV service agencies
Whetten et al., 2004	Southern Medical Journal	Predominately rural parts of the Southern United States (North Carolina, South Carolina, Alabama)	Survey	N = 526 (188 women, 328 men; HIV-infected, Medicaid eligible patients of clinics)	Participants were recruited from four infectious disease clinics
Whetten- Goldstein et al., 2001	Southern Medical Journal	North Carolina, South Carolina Alabama	Survey	487 survey respondents, HIV- infected, Medicaid eligible patients of 1 of 6 clinics	Recruited from 1 of 6 infectious disease clinics

Note. MSM = men who have sex with men

Data collection types ranged across studies. Research methodologies were evenly spread between interview, focus group, and survey collection; one study conducted a case study of a high-risk community. Diversity of quantitative and qualitative methodologies in these studies should be considered in the examination of identified barriers.

Additionally, populations sampled across studies varied. While the majority of studies concentrated on gathering data directly from PLWH, four focused on obtaining provider perceptions or a combination of PLWH and provider perspectives. The samples consisting of PLWH perspectives only varied demographically. Across studies, almost all major populations affected by HIV were represented, including men who have sex with men (MSM), African Americans, Latinos, women, and those living in poverty. The only population group not specifically addressed in any of the articles under review was injection drug users (IDUs). According to CDC surveillance data (2008), however, transmission of HIV through injection drug use occurs at similar rates in non-metropolitan areas and urban or metropolitan areas. This significant gap in the literature should be addressed in future research.

Recruitment locations and tactics generally fell into one of three categories: those recruiting directly from clinics and health care facilities, those recruiting from AIDS service organizations (ASOs), and those recruiting directly from the community. Recruitment locations have potential implications on samples and generalizing results. Data gathered directly from clinics and health care facilities are biased toward people who have entered and are retained in care. Data gathered from ASOs can similarly be biased by only including individuals who have sought or are currently seeking services. These potential biases should be kept in mind when interpreting the current study’s findings.

Identified Barriers to Care

Review of the empirical studies identified a total of 27 distinct categories of barriers to care (see Table 2). Each of these barriers encompassed its own concerns and points of interest in understanding why individuals might not have engaged in treatment. Additionally, some barriers operated in conjunction with others to create a complex, multifaceted matrix of barriers to care for PLWH in rural areas. Although interconnected, for this review each barrier to care was examined individually. The most commonly identified barriers to care for rural PLWH were transportation (identified in 11 studies), provider discrimination and stigma (7 studies), confidentiality concerns (7 studies), and affordability and lack of financial resources (6 studies).

Table 2.

Barriers to Care for People Living with HIV in Rural Areas of the United States

Barriers to Care	Duran et al., 2000	Goicoechea-Balbona, 1997	Heckman et al., 1998	Kempf et al., 2010	Mainous et al., 1997	Mamary et al., 2004	McKinney, 1998	Rhodes et al., 2010	Roeder, 2002	Sarquist et al., 2011	Sutton et al., 2010	Vyavaharkar et al., 2008	Walker, 2002	Whetten et al., 2004	Whetten-Goldstein et al., 2001	Number of articles that address each barrier
Transportation	X		X	X	X	X	X		X	X		X	X		X	11
Long distances to care			X		X	X			X		X					5
Personal health: Limitations						X			X	X						3
Lack of childcare				X			X			X		X	X			5
Insurance issues (lack of or difficulties applying for benefits)							X	X				X		X	X	5
Affordability/Lack of financial resources	X		X						X	X		X			X	6
Housing issues		X	X						X			X				4
Legal matters/Incarceration				X			X									2
Employment or workplace issues			X	X			X		X							4
Lack of or inadequate HIV-trained health professionals			X		X			X	X	X						5
Lack of or inadequate HIV-specific services											X					1
Long waits for appointments	X									X			X			3
Inflexibility in scheduling/Inconvenient hours	X			X					X							3
Bureaucracy/Red tape										X		X		X		3
Lack of knowledge about available services	X						X	X	X						X	5
Lack of mental health workers	X		X										X			3
Lack of drug treatment facilities	X															1
Organization did not provide the right referrals to the services needed or services were unhelpful										X				X		2
Denial of problem/Attitudes about HIV				X			X	X			X		X			5
Lack of social support, networks, and groups			X			X			X				X			4
Community stigma		X	X	X					X				X			5
Religious/Sociocultural factors		X					X		X				X			4
Fear of being reported to authorities/Deportation								X		X						2
Provider discrimination/Stigma	X	X	X						X	X		X			X	7
Confidentiality	X				X	X	X		X	X	X					7
Perceived lack of sensitivity of the organization regarding issues and concerns	X									X						2
Communication with provider/Quality of patient-provider relationship		X		X						X						3
Total Barriers per Article	10	5	10	8	4	5	9	5	14	13	4	7	8	3	5

Transportation Issues

Transportation and long distances to care were the most commonly identified barriers to care for rural PLWH. This was not surprising given that many individuals who live in rural areas must travel to urban areas in order to receive HIV-specialized care. This usually means that primary care is not conveniently located and requires substantially longer travel times than for persons living in urban areas (Schur et al., 2002). In addition, many rural people must rely on sometimes-unreliable forms of transportation such as public transportation or dependence on others for rides; in one study, 45.3% of the sample had difficulty traveling to appointments (Sarnquist et al., 2011).

Nine of the 11 studies reviewed found transportation as a major, if not the most problematic, barrier to care. Participant responses ranged from 19% to 45% citing transportation to be a significant barrier to attending medical appointments and receiving HIV-related care in general. Heckman and colleagues (1998) found that rural respondents were significantly more likely than urban respondents to report lack of personal or public transportation and traveling long distances to medical care as a major barrier. Lack of public transportation, the cost of fuel, seasonal weather conditions, and having to rely on others for rides could combine to exacerbate distance as a barrier to care (Kempf et al., 2010; Mamary, Toevs, Burnworth, & Becker, 2004; Sarnquist et al., 2011; Sutton, Anthony, Vila, McLellan-Lemal, & Weidle, 2010). Sarnquist and colleagues (2011) found that relying on someone else to drive or on public transportation, having low levels of income, and being unemployed, among other factors, were directly related to problems accessing transportation to care. It is clear that lacking transportation is intertwined with poverty and unemployment, illustrating how barriers to care are linked.

Provider Discrimination and Stigma

Perceived provider stigma and experience of provider discrimination have been identified as significant barriers to medical care. Sarnquist and colleagues (2011) reported that 6% of PLWH in rural areas reported provider discrimination as a barrier to care. Additionally, Whetten-Goldstein, Nguyen, and Heald (2001) found that 11% of their sample had been turned away from a physician within the previous year. Care discrimination has multiple negative outcomes for patients, including not being accepted into care, as well as the possibility that a patient will not be inclined to return to care.

In addition to discriminatory practices by providers, perceived stigma presented its own problems. Rhodes and colleagues (2010), for example, found that participants were hesitant to talk openly with providers because they perceived that providers were uncomfortable with their sexual orientation and sexual behaviors. Perceptions of negative judgment and other forms of stigma degrade patient-provider relationships and impact patient engagement and retention in care.

Confidentiality

Confidentiality is a significant concern for PLWH because of the highly stigmatized nature of HIV infection. Two circumstances regarding confidentiality were identified as important in several studies: breach of confidentiality within the clinic and being “found out” outside of the clinic. Sutton and colleagues (2010), for example, found that providers thought patients were concerned about inadvertent breaches of confidentiality within the clinic setting. Alarmingly, McKinney (1998) found that some women would forego services or travel to further away clinics because they were afraid that the receptionists and nurses at the local clinics would not keep their confidentiality.

In addition to breaches of confidentiality in the clinic setting, participants also expressed concerns about breaches outside of the clinic. Sutton and colleagues (2010) found that providers perceived patient concern about being seen entering or exiting the clinic and losing confidentiality as a significant barrier. In the same vein, Mamary and colleagues (2004) found that participants were concerned about people seeing their cars at the clinic and being “found out” that way.

Affordability/Lack of Insurance

The fourth most common barrier-to-care reported in the research was the issue of affordability and/or lack of insurance. Sarnquist and colleagues (2011) found that 17% of their sample saw affordability as sometimes or always a barrier to care and 15% reported that lack of insurance was sometimes or always a barrier to care. Similarly, Whetten-Goldstein and colleagues (2001) found that 37% of respondents needed help to pay for prescription medications. It is clear that cost can be a major issue for those trying to access health care and medications, especially when the patient is not receiving assistance through aid programs or insurance. McKinney’s (1998) findings highlighted this point. She found that lack of health insurance was identified as a significant barrier to care at all of her study sites except for the one place that had state-subsidized insurance programs available to low income people and PLWH. However, increasing available aid did not necessarily increase access to services. For example, some women in a study by Vyavaharkar, Moneyham, and Corwin (2008) expressed their frustration in obtaining known disability benefits and Medicaid. This problem is perhaps related to other barriers such as lack of knowledge about where to go to obtain services and challenges to navigating the health care system.

Applying Identified Barriers to Care to Health Care Models

Over the past decade, several models have been proposed to address barriers to care for individuals living with HIV in rural areas of the United States (see Table 3). Identified models were most typically derived from nursing and case management services. The most common barriers addressed by rural care models were lack of or inadequately HIV-trained health professionals, transportation, and lack of social support networks and groups. Additionally, there appear to be several gaps in the barriers that these models address. Eight barriers to care identified in the literature review were not addressed in any of the models, including community stigma, although it was one of the top barriers cited in the empirical studies reviewed. This represents a gap in previous models of nursing and care. The two models that accounted for the most barriers are reviewed here. Both Grace and colleagues (2010) and Wood (2008) addressed barriers to care through dynamic models that focused on decreasing multiple barriers simultaneously. Each of the models is comprised of several components that act to reduce one or more barriers to care (See Figure 2).

Table 3.

Barriers to Care Addressed in Rural Health Care Models

Barriers to Care	Berry et al., 1996; Edisto, South Carolina	Berry et al., 1996; New Mexico State Program	Berry et al., 1996; Treasure Coast, FL	Grace et al., 2010; Vermont	Nguyen & McKinley, 2003; North Carolina	Sowell & Opava, 1995; Georgia	Wood, 2008; Alabama, population - IDU	Number of articles that address each barrier
Transportation	X	X	X				X	4
Long distances to care	X	X		X			X	4
Personal health: Limitations							X	1
Lack of childcare								0
Insurance issues (lack of or difficulties applying for benefits)								0
Affordability/lack of financial resources		X	X			X	X	4
Housing issues			X			X	X	3
Legal matters/Incarceration								0
Employment or workplace issues								0
Lack of or inadequate HIV-trained health professionals	X	X	X	X	X		X	6
Lack of or inadequate HIV-specific services				X			X	2
Long waits for appointments				X			X	2
Inflexibility in scheduling/Inconvenient hours							X	1
Bureaucracy/Red tape								0
Lack of knowledge about available services				X	X			2
Lack of mental health workers	X			X			X	3
Lack of drug treatment facilities	X		X				X	3
Organization did not provide the right referrals to the services needed or services were unhelpful				X	X			2
Denial of problem/Attitudes about HIV								0
Lack of social support, networks, and groups		X	X	X		X	X	5
Community stigma								0
Religious/Sociocultural factors								0
Fear of being reported to authorities/Deportation								0
Provider discrimination/Stigma						X	X	2
Confidentiality				X	X			2
Perceived lack of sensitivity of the organization regarding issues and concerns							X	1
Communication with provider/Quality of patient- provider relationship							X	1
Total Barriers per Article	5	5	6	9	4	4	15

Note. IDU = injection drug user

Figure 2.

Components of health care models and subsequent barriers reduced.

The Vermont Model

Grace and colleagues (2010) evaluated an urban outreach program implemented in Vermont. Three rural HIV-specific clinics were established between 1994–1996. The data presented focused on comparing these rural clinics to an urban counterpart over the previous decade. The model was shown to be effective in the sense that there was no difference in viral load suppression, CD4+ T cell count, and mortality between patients who attended the rural clinics and those who attended the urban one. In order to bring care to the rural clinics, however, several barriers had to be addressed.

The Grace and colleagues (2010) model concentrated on three major barriers to care in an effort to improve access. To address long distance challenges, this model took care out of the urban center and brought it into rural clinics. The model directly reduced travel time by distributing clinics more widely across rural areas and bringing specialists to rural clinics, which reduced the barrier of lack of HIV-trained health professionals in rural settings. In addition to HIV specialists, the model brought in a social worker to act as a case manager. This provided psychosocial support as well as connections with other resources, including mental health care. The location of the rural clinics also helped address the barrier of confidentiality by placing HIV clinics within existing hospital infrastructures to ensure privacy in health services. Lastly, the model presented addressed the barrier of lack of knowledge about services available by having the clinics act as coordinators between patients, community services, and regional ASOs.

This innovative rural health care model was able to address multiple interconnected barriers in a way that mimicked care found in urban areas. Several challenges, however, still needed to be addressed. Although the model worked to diminish nine different barriers it left 18 unaddressed. Particularly, this model neglected to address many of the psychosocial barriers such as discrimination, stigma, and attitudes regarding HIV and treatment. Also missing were strategies for physical barriers such as affordability, lack of childcare, and inadequate housing. Although these may not seem as pertinent when considering the entire distribution of care services, they are important factors in an individual’s ability to engage in care.

The Health Services Clinic (HSC)

Wood (2008) presented another comprehensive model for rural health care, which aimed to guide how a clinic could effectively distribute comprehensive care to rural communities in Alabama. The Health Services Clinic (HSC) was funded by the Health Resources and Services Administration and focused its treatment on PLWH who were also IDUs. Focusing on leadership and a sense of community, this clinic attempted to integrate substance abuse treatment into regular HIV care.

The Wood (2008) model addressed 15 of the 27 barriers to care identified in the empirical review, three of which were in the top most commonly cited barriers. To address transportation issues associated with rural communities, the clinic had a mobile van that made home visits for those who were homebound or could not get transportation to the clinic. The clinic also provided free medication to patients, helping to decrease the impact of affordability as a barrier. To increase flexibility in scheduling, walk-in appointments for same day care were available.

One of the major goals of the model clinic was to create an environment where the focus was on the patient/provider relationship, particularly eliminating patients’ feelings of discrimination from the provider. To help meet this goal, a “peer buddy system” was established in the clinic that added to the sense of community. Peer workers or “buddies” called new patients daily to remind them to take their medications and to provide general support, helping to create a social support network for patients. Other types of support included case management concentrating on mental health, substance abuse treatment, and outpatient referrals to specialized counselors.

Although no quantitative data were offered comparing this clinic model to other models or to urban care, the model appeared to be more comprehensive in nature than the Grace and colleagues (2010) model. The Wood (2008) model addressed six additional barriers; however, it also had many of the same weaknesses found in the Vermont model, particularly failure to address community stigma, religious/sociocultural factors, and patient denial.

Model Use

These models provide a wealth of information about what has already been done successfully and where weaknesses may lie in current practice. Models for comprehensive rural health care tend to focus on more physical barriers such as transportation and providing HIV-specific care services. While this is an important start because these are some of the most commonly cited barriers, current models tend to lack components focusing on the psychosocial issues that may exacerbate the physical barriers to care. Additionally, even exemplary models do not address community stigma, which is one of the most often identified barriers to care for rural PLWH.

Conclusion

This literature review aimed to compile primary research identifying barriers to care for rural PLWH. The most common barriers to care were identified independently of specific samples. This information can inform future research and narrow the focus of future interventions. The model review helped to highlight strides in reducing rural barriers and also highlighted gaps in the research.

Community stigma, in particular, was identified as a key barrier to care in the literature review, but it was not addressed by either of the care models reviewed. This represents a gap in the translation of empirical research to health care models and intervention development that should help inform future models addressing barriers to care. Although none of the models had included components to address this barrier, research has been conducted to determine effective means of reducing community stigma, which could easily be integrated into models for health care (for a review see Brown, Macintyre, & Trujillo, 2003), and more research should be conducted to determine the best means to integrate reducing stigma effectively into health care.

Other examples in the current review support the conclusion that there appears to be a disconnect between empirical research and model development and perhaps to adaptations to health care in general. Nine of the 27 barriers identified in the empirical literature were absent from any of the health care models. A wealth of knowledge regarding barriers to care is available in the literature; however, this knowledge has not been utilized to its full potential within the field of health care provision for rural PLWH. Future research, both theoretical and practical, should attempt to be more inclusive of the types of barriers inhibiting entry to and retention in care.

It is important to reiterate the point that the identified barriers to care do not exist in isolation. Many barriers are interconnected and can have major influences on the ability to deliver care services. For this reason, it is important to address these barriers to care in an integrated manner, mirroring how they are manifested in everyday life. The two exemplary models presented showed how this could be accomplished as part of comprehensive rural health care. Future research should focus on addressing the multi-faceted nature of barriers to care for HIV-infected individuals in rural health care settings as well as on identifying health care components that can have a large impact on a number of barriers while maintaining optimal care and not inducing significant burdens on the health care staff.

Findings in this review can have implications for most rural U.S. populations because the studies mirrored trends occurring across the nation. These results, however, cannot be generalized to services outside of the rural United States. Barriers to care are contingent upon the proximal and distal environment. Environmental features can include physical structures such as transportation infrastructure, governmental policy, and health care systems as well as social structures, norms, and interpersonal interactions. Relevant environments can vary within a country and even more widely across countries.

Additionally, the actual ranking of barriers as most to least burdensome can vary widely across populations and locations. For example, lack of childcare may be considered a large barrier for women with small children and a very minor one or not a barrier at all for MSM and male immigrant farm workers (Rhodes et al., 2010). Research exploring the ranking of barriers for differing populations is needed to help direct efforts to ensure that the most stressful barriers are addressed.

A limitation for this review is that the majority of the studies’ samples were recruited from health care settings. Most participants were, therefore, already in care when surveyed about barriers to care. This could have biased the sample, either in a biased emphasis about what the major barriers were or biased in the actual reporting of specific barriers. It is possible that the most significant barriers for PLWH are not yet know because those barriers prohibit individuals from ever seeking care and thus would not be included in a care-based sample. However, the consistency across samples, with both PLWH and providers, leads us to believe that at least the most common barriers have been identified and addressed in current health care models. This review is also missing information from IDU populations and from New England and Mid-Atlantic states. This is a significant gap in the literature and should be addressed in research. Although the research presented in the articles reviewed spanned more than 15 years, there did not appear to be a difference in barriers identified in newer versus older articles.

A substantial amount of work has been conducted to identify and reduce barriers to care for PLWH in the rural United States. The goal of this review was to summarize past findings, assess current models, and inform goals for future studies. It is clear that the current research has adequately addressed physical barriers to care such as transportation and lack of specialists. However, many areas of need persist, including psychosocial coping and adjustments that need to be addressed in order to ensure that PLWH are able to access the care they need to achieve better health outcomes.