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Articles

Health Care Providers' Reports of Perceived Stigma Associated with HIV and AIDS in Rural and Urban Communities

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Pages 356-370 | Published online: 29 Nov 2010

Abstract

Over 1,500 rural and urban providers in Alaska and New Mexico responded to our survey assessing their perceptions of stigma associated with HIV/AIDS. Findings indicated that providers perceive HIV/AIDS as highly stigmatized and stigmatized more than other physical and mental illnesses. Perceptions of HIV/AIDS stigma varied across community sizes, with highest levels in rural communities and lower levels in urban, small urban, and small rural communities. Across communities, behavioral health care providers reported perceptions of greater stigma associated with HIV, AIDS, and other illnesses than did physical health care providers. Increased stigma in rural communities exacerbates health care disparities faced by rural residents and underscores the need for research on reducing stigma associated with HIV/AIDS.

In 2008, an estimated 33.4 million people were living with HIV across the world, 2.7 million were newly infected with HIV, and 2.0 million died as a result of AIDS (Joint United Programme on AIDS, Citation2009). In the United States, more than 1 million people are living with HIV. Although HIV prevalence in nonurban areas is generally low in the United States (Hall, Li, & McKenna, Citation2005), rates of HIV and AIDS in rural areas of the United States are on the rise. In the 1990s, researchers reported rates of increase in HIV infection of 80% in rural areas, compared to 47% in urban areas (Rural Center for AIDS/STD Prevention, 1996). Although the rate of increase in HIV infection abated somewhat during the 2000s, recent findings indicated that new cases of AIDS cases are increasing rapidly in the rural south, with this region accounting for 67% of all new rural AIDS cases. Overall, rural transmission accounts for approximately 5% to 8% of all AIDS cases in the US and over two-thirds of rural residents infected with HIV report having been infected locally (Rural Center for AIDS/STD Prevention, Citation2002, Citation2009).

Rural rates of HIV and AIDS are difficult to estimate due to the tendency of rural residents to seek services in nearby (or even far away) urban areas. More and more patients migrate to urban centers for specialty services (Larson & Hart, Citation2001), a trend that is predicted to increase in the future and that may become more pronounced for illnesses that are difficult to care for or stigmatized in the rural home community. The hesitation of rural residents to seek services for HIV or AIDS in rural communities is tied to inadequate services in rural areas (Castañeda, Citation2000; Wood, Citation2008) and to the reality that available services tend to be substandard clinical treatments (Rural Center for AIDS/STD Prevention, Citation2009).

Rural residents may be also likely to seek services in urban areas instead of their home communities due to a perceived lack of confidentiality (e.g., Campbell, Gordon, & Chandler, Citation2002; Harding, Van Pelt, & Ciarlo, Citation2000; Nordal, Copans, & Stamm, Citation2003; Roberts et al., Citation2001; Starr, Campbell, & Herrick, Citation2002; Stockdill & Ciarlo, Citation2000) and the existence of stigma surrounding HIV and AIDS. Drawing from Goffman's (Citation1963) seminal book in which he defined stigma as “an attribute that is deeply discrediting” (p. 3), stigma involves an explicit devaluation of an individual's social identity and results in the stigmatized individual being shunned and avoided by others, and feeling shame or embarrassment. Several authors have further delineated stigma into perceived (or felt) stigma and enacted stigma. Perceived (or felt) stigma refers to “real or imagined fear of societal attitudes and potential discrimination arising from a particular undesirable attribute, disease (such as HIV), or association with a particular group or behavior...” (Brown, Macintyre, & Trujillo, 2003, p. 50). Enacted stigma is actual manifestation or experience of discrimination.

The relationship of stigma to low service utilization in rural areas has been well-documented for many stigmatized illnesses, including mental and substance use disorders, HIV/AIDS, and sexually transmitted infections (Brown & Herrick, Citation2002; Guralnick, Kemele, Stamm, & Grieving, 2003; Keller, Citation2000; McCabe & Macnee, Citation2002; Mohatt, Citation2000; Morgan, Semchuk, Stewart, & D'Arcy, 2002; Ostman & Kjellin, Citation2002; Wolff, Dewar, & Tudiver, Citation2001). Relative to HIV/AIDS, using data from self-administered surveys of nearly HIV-positive (HIV+) individuals in a rural midwestern state, Heckman and colleagues (Citation1998a, Citation1998b) investigated a variety of psychosocial and emotional issues to elucidate the life circumstances of rural patients living with HIV and AIDS. They reported that these individuals encounter significant levels of stigma in their rural communities, lack supportive and understanding employers, and face uneducated fellow community members. Based on survey data from 201 HIV+ patients from communities with fewer than 50,000 residents, Heckman et al. (Citation2002) concluded that rural HIV patients lack positive social supports and face many barriers to receiving local care for their disease.

Using qualitative methodologies, Walker (Citation2002) interviewed four rural consumers and their caretakers regarding HIV services for women in rural area. This work revealed that these consumers failed to seek services in a timely manner and did not discuss their symptoms with their caretakers, including for fear of stigma. Similarly, Zukoski and Thorburn (Citation2009) in interviews with 16 HIV+ individuals in rural areas with low HIV prevalence found that these individuals experienced stigma and discrimination in a wide range of health care settings and with a variety of providers. McGinn (Citation1996) interviewed parental caretakers of eight HIV+ children and found that the most common theme across the interviews was the reality of stigma associated with HIV infection in rural communities and that this stigma prevented parents from accessing local resources for support and care.

Anecdotally, in Alaska, some rural residents are reluctant to seek HIV prevention or screening services from itinerant care providers because that provider is usually known as such by all community members. Individuals fear being labeled with HIV by their community just for being seen with that provider (Brems & Dewane, Citation2007; Roberts et al., Citation2001). Similarly, health care providers, writing about their experiences with rural patients in their local practices report that their patients in small communities experience greater stigma associated with HIV and that such stigma leads to harassment and discrimination (Verghese, Berk, & Sarubbi, Citation1989). One result of this stigma is the virtually nonexistence of support groups in small communities due to patients' shame about their diagnosis and communities' lack of tolerance of the individuals affected (Whitfield, Citation1998).

Current data about HIV and stigma in rural communities are limited in that they are largely based on anecdotal, qualitative, and small-sample studies of infected individuals. No study could be found in the literature that has asked practitioners about HIV-related stigma in their communities. The current study seeks to fill this gap through data analysis using a large and unique dataset containing survey responses from over 1,500 health care providers in Alaska and New Mexico, two states with large, underserved rural areas. Through these analyses we explored the perceived level of stigma associated with HIV infection and AIDS in rural compared to urban communities. More specifically, we sought to document the amount of enacted stigma that health care providers perceive to exist in their communities.

METHOD

Participants

Potential participants in Alaska and New Mexico were identified through licensure lists for primary care physicians, psychiatrists, physician assistants, nurse practitioners, registered nurses, psychologists, social workers, and mental health counselors. Of 3,695 health care providers invited to participate in this project, 222 had addresses to which surveys were undeliverable; 488 were ineligible due to either retirement, moving out of state, or working less than half-time; and 1,555 returned completed surveys. Of the participants, 730 were from Alaska (response rate of 50.6%) and 825 from New Mexico (response rate of 53.7%), for an overall response rate of 52.2%. Table provides a summary of participants' demographic characteristics.

TABLE 1 Participant Characteristics

Instrumentation

To explore differences in experiences and perceptions between urban and rural health care professionals, a survey was developed based on data from 82 key informant interviews and 25 focus groups with professionals in the eight health care provider groups. The resultant survey included sections on ethical challenges, perceptions of illness stigma, training and resource needs, experiences in providing health care, barriers faced in providing care, treatment issues related to providing care to minority groups, and provider practice characteristics.

Of special interest in the current study were items related to respondents' perceptions of their community's stigma associated with various disorders. Two questions were of particular interest: (a) “Please rate how much clients/patients in your survey practice community would have been stigmatized by other people in that community over the past year if it were known that they experienced HIV positive status?” and (b) “Please rate how much clients/patients in your survey practice community would have been stigmatized by other people in that community over the past year if it were known that they experienced AIDS”. Both items were rated on an 11-point rating scale ranging from 0 (not at all stigmatized) to 10 (highly stigmatized).

An additional 36 items were rated using the same 11-point scale to assess respondents' perceptions of stigma associated with each of the items. These items included various infectious diseases (common cold, flu, pneumonia, tuberculosis, hepatitis B, hepatitis C, other sexually transmitted diseases), cancers (skin, lung, liver, brain, breast, prostrate), abuse or addictions (prescription drugs, marijuana, cocaine, heroin, amphetamine, alcohol, heroin), chronic diseases (diabetes, heart disease or stroke, liver diseases, lung diseases, seizure disorder), mental disorders (dementia, anxiety, depression, schizophrenia, bipolar, personality disorder, learning disorder), and societal problems (adult sexual abuse or rape, family violence, child sexual abuse, and injuries due to accident). These 36 additional ratings were used to compute an Overall Stigma rating for each community that also ranged from 0 (not at all stigmatizing) to 10 (highly stigmatizing).

Study Population

Based on addresses provided in licensee lists, eight groups of physical and behavioral health care providers in Alaska and New Mexico were first stratified as providing services in either rural or urban settings. This stratification was based on standards for metropolitan and micropolitan statistical areas developed and used by the U.S. Office of Management and Budget (1999). OMB simply differentiated metropolitan statistical areas (city core of at least 50,000 area residents or urbanized area with at 100,000) versus nonmetropolitan areas. Next, 125 urban and 125 rural providers from each state were randomly selected. For groups in which there were fewer than 125 providers (e.g., rural psychologists), the entire group was sampled and the complementary group (e.g., urban psychologists) was oversampled to reach the goal of 250 providers in each state from each group of providers. With many groups having fewer than a total of 250 providers, particularly in Alaska, the final sample size was 3,695.

Data Collection

After receiving approval from the institutional review boards at the University of New Mexico School of Medicine and University of Alaska Anchorage, survey procedures were implemented following the general recommendations of Dillman (Citation2000). Specifically, the survey process began with a preletter notifying potential participants that they would soon receive the survey. This was followed 2 weeks later by the survey itself, payment form, nonresponse form, and self-addressed stamped envelope. Reminder postcards were sent 4 weeks later to nonrespondents; a second survey packet was delivered 2 weeks after this, followed by a final reminder letter 2 weeks later. After returning a completed survey, study volunteers received $50 compensation. All data were collected in 2004.

Data Analyses

Given criticisms regarding the simplicity and overgeneralization of established rural-urban dichotomies (Ciarlo & Zelarney, Citation2000; Rost, Fortney, Fischer, & Smith, Citation2002), for the community size represented by the actual participants, we differentiated rural and urban communities using a different approach. In this approach, using cluster analysis, participants were categorized based on the population size of their practice community. This analysis used population numbers of the community itself if it was geographically isolated from a metropolitan area or based on the population numbers of the community and other contiguous communities if they bordered each other. Four distinct community sizes were identified: urban was defined as communities having 35,000 or more residents; small urban as having 15,000 to 34,999 residents; rural as having 3,500 to 14,999 residents; and small rural as having fewer than 3,500 residents. Participants were also conceptually categorized based on physical (primary care physicians, nurse practitioners, physician assistants, and registered nurses) versus behavioral health (psychiatrists, psychologists, social workers, and mental health counselors) care disciplines.

For all analyses, independent variables were Community Size (small rural, rural, small urban, urban), Provider Discipline (physical health care, behavioral health care) and State (Alaska, New Mexico); dependent variables were stigma ratings given for HIV+, AIDS, and Overall Stigma. Data analysis included multivariate analysis of variance (MANOVA) tests to examine if there were significant differences in stigma ratings across the community sizes, provider disciplines, and states. All significant MANOVA results were followed by univariate ANOVAs and Duncan's multiple range test to determine which group(s) differed significantly from each other.

RESULTS

Across all participants, pairwise t-tests revealed ratings for AIDS (M = 8.24; SD = 2.28) and HIV+ (M = 7.82; SD = 2.34) stigma were significantly higher than Overall Stigma ratings (M = 4.22; 1.53), t(1543) = 84.88, p < .001; t(1543) = 76.35, p < .001, respectively, and that AIDS ratings were significantly higher than HIV+ ratings t(1543) = 19.57, p < .001.

Means and standard deviations for the three dependent variables are shown in Table , presented separately by Community Size, Provider Discipline, and State. Results of a 4 × 2 × 2 MANOVA revealed several significant main effects for Community Size, Provider Discipline, and State [F(9,3711) = 4.25, p < .0001, F(3,1525) = 10.32, p < .0001; F(3,1525) = 4.28, p < .005, respectively], a significant Provider Discipline × State interaction [F(3,1525) = 5.26, p < .001], and a significant Provider Discipline × State × Community Size interaction [F(3,3712) = 2.69, p < .005]. Univariate analyses for Community Size revealed significant differences only for Overall Stigma, F(3,1527) = 3.72, p < .01. Post hoc analyses using Duncan multiple range tests revealed that ratings were lowest among small rural providers; urban, small urban, and rural providers did not differ from each other. Post hoc results for HIV+ and AIDS approached statistical significance, F(3,1527) = 2.29, p = .08; F(1,1527) = 1.90, p < .13, respectively. On both HIV+ and AIDS, rural providers provided the highest stigma ratings. Interestingly, rural providers did not provide the highest Overall Stigma ratings, suggesting that the elevated stigma ratings are unique to HIV+ and AIDS. Figure provides a graphic representation of this pattern.

FIGURE 1 Stigma ratings for HIV+ status and AIDS separated by community size.

FIGURE 1 Stigma ratings for HIV+ status and AIDS separated by community size.

TABLE 2 Means and Standard Deviations for the HIV/AIDS Stigma Questions and for Stigma Overall by Community Size, Health Care Discipline, and State

Univariate analyses for Provider Discipline revealed significant differences on HIV+. AIDS, and Overall Stigma [F(1,1527) = 4.60, p < .03; F(1,1527) = 14.02, p < .0002; F(1,1527) = 7.36, p < .007, respectively]. Post hoc analyses indicated that ratings were consistently higher among behavioral health care providers compared to physical health care providers. In other words, behavioral health care providers perceived their communities as placing more stigma in general and more stigma vis-à-vis HIV+ and AIDS in particular (Table ).

TABLE 3 Means and Standard Deviations for the HIV/AIDS Stigma Questions and for Stigma Overall by Community Size, Health Care Discipline, and State

Univariate analyses for State revealed significant differences only on Overall Stigma, F(1,1527) = 8.47, p < .004. Post hoc analyses indicated that ratings were higher in New Mexico than in Alaska. No significant differences were found between the two states on HIV+ or AIDS. The Provider Discipline × State interaction was significant only for Overall Stigma, F(1,1527) = 3.95, p < .05, and the Provider Discipline × State × Community Size interaction was significant only for HIV+, F(3,1527) = 3.64, p < .05. However, both of these interactions were only marginally significant and were not explored further (see Table ).

DISCUSSION

This study produced several profoundly important results about the degree to which providers in Alaska and New Mexico perceive people living with HIV and AIDS as being stigmatized. In both of these rural states, HIV infection and AIDS were perceived as being highly stigmatized, regardless of state, community size, or provider discipline. The fact that perceptions of stigma associated with HIV infection and AIDS in small rural areas differ significantly from perceptions in larger rural and urban areas has important implication for the care of people living with HIV/AIDS. Given that such stigma clearly and profoundly affects health care options and choices, greater degrees of stigma in relatively larger rural areas serves to perpetuate health care disparities for affected residents of such areas and places such communities as heightened risk for the spread of disease. Differences in perceptions about stigma associated with HIV/AIDS across disciplines are likely to affect patient behavior and can thus have profound effects on health care choices and perceived health care options.

Stigma Relative to Community Sizes

Prior research with small samples of patients has established the negative and persistent presence of stigma associated with people living with HIV and AIDS. Our work adds to this literature by clarifying that community size may affect the degree of stigma. Based on responses from over 1,500 providers from two states with large rural populations, we found that health care providers in small rural areas perceive significantly less stigma associated with various illnesses in their communities than providers in larger rural communities. Indeed, Overall Stigma ratings in small rural communities were significantly lower than in any other type of community. Although ratings with regard to stigma related to HIV+ and AIDS were not statistically significant, the trends suggest that providers in small rural communities perceive less stigma associated with HIV+ and AIDS than providers in larger rural communities, although they do not differ from urban areas. Larger rural communities may be more representative of the communities addressed in prior research. The small rural communities in New Mexico and Alaska are unique in many ways and often differ from larger rural communities in substantive ways (cf, Brems, Johnson, Warner, & Roberts, Citation2007; see Figure ).

Stigma Relative to Healthcare Discipline

An additional important and unanticipated finding from this study was the significant difference between stigma ratings provided by behavioral health care providers compared to physical health care providers. On all three dependent variables (Overall Stigma, HIV+, and AIDS), behavioral providers provided ratings that were significantly higher than their physical health care colleagues. Behavioral health care providers may have greater sensitivity or awareness of stigma for several reasons. First, these providers are more likely to have had courses during their training that made them aware of stigma and, as a result, may be more attuned to its presence than are physical care providers (Brems, Boschma-Wynn, Dewane, Edwards, & Robinson, 2010, in press). Second, physical health care providers focus primarily on the physical sequelae of an illness, whereas behavioral health care providers focus more on the psychological or behavioral sequelae (Brems, Citation2001). As a result, behavioral providers may be more likely to hear from their patients about experiences of stigmatization. Third, behavioral providers may be more aware of stigma due to the fact that more of their clients are likely to be living with stigmatized illnesses (i.e., mental illnesses). On the other hand, physical health care providers deal with a much wider array of disorders, most of which are not stigmatized (e.g., common cold).

Stigma Relative to Alaska Versus New Mexico

Despite their profoundly different geographic settings and highly disparate psychosocial circumstances, Alaska and New Mexico were remarkably congruent with regard to stigma ratings, especially relative to ratings of stigma associated with HIV+ status and AIDS. State differences were minimal, with only Overall Stigma ratings differing across the two states. Although providers in New Mexico perceived more Overall Stigma in their communities than did providers in Alaska, ratings of stigma associated with HIV+ and AIDS did not differ across states.

Limitations

Despite the importance of these findings, it must be acknowledged that this study has at least four limitations that must be considered. First, our findings are based on providers' perceptions of enacted stigma within their practice communities and, as such, may not precisely reflect the level of stigma that actually exists. Second, with a response rate of 52.2%, nearly half of the potential participants declined to complete the survey. However, given the fact that the individuals targeted were busy professionals and that the survey took up to an hour to complete, the response rate is adequate; this is particularly true given the fact that response rates to surveys in general have been declining for at least two decades (Tourangeau, Citation2004). Third, as with most large surveys, we have no data that permit comparisons between respondents and nonrespondents. Thus, we are unable to address the possibility of a selection bias. Fourth, this study was completed in only two states and generalizability to other states and countries other than the United States needs to be confirmed.

Conclusions

This study revealed several important issues about perceptions of stigma as associated with HIV and AIDS. First and foremost, findings indicate that health care providers perceive HIV/AIDS as being highly stigmatized across rural and urban Alaska and New Mexico, with ratings that are significantly higher than ratings of stigma for other illnesses. Another important finding is that rural communities are not all equal when it comes to perceived levels of stigma associated with illnesses. Providers in small rural communities reported lower levels of perceived stigma than did providers in larger rural communities. However, despite this rurality difference, it must be kept in mind that even in small rural communities, health care providers perceived people living with HIV/AIDS stigma as being very highly stigmatized. Any differences across community sizes are outweighed by the high ratings given to HIV/AIDS in general. If the actual level of stigma associated with HIV/AIDS is as high as perceived by participants, such stigma is very likely to impede access to care and to have grave psychological consequences for the individual. These consequences are no doubt more complex and complicated for individuals living in rural areas, where anonymity is limited and access to care is already compromised due to existing health care disparities. Thus, reducing stigma associated HIV/AIDS is essential in all areas of the United States, but particular emphasis must be placed on dealing with the consequences of such stigma in rural areas. Social services providers can play a key role in addressing stigma in their communities. Foremost, given that social service providers serve as role models in communities, particularly small communities, they are in a position to become social change agents through their own behavior and actions. Thus, gaining insights into the degree to which they themselves stigmatize HIV/AIDS is a crucial first step. Providers can also take more active roles in reducing stigma in their communities through a range of interventions demonstrated to be effective (Brown et al., Citation2003). For example, to counter misinformation, providers can provide factual information about the disease, transmission vectors, and methods of risk reduction.

This information dissemination can be accomplished through various avenues including lectures and classes at community settings, schools, and churches; advertisements, brochures, and leaflets distributed through various venues; and online sources including web pages, weblinks, and podcasts. As feasible, such information dissemination incorporates people living with HIV/AIDS. Personal contact increases the likelihood of dispelling misinformation and increasing empathy, all of which serves to decrease stigma. Further, providers can provide support groups for family members and friends of individuals living with HIV/AIDS to assist them in addressing their own negative perceptions of HIV/AIDS and to supply them with information and tools that they can use to reduce others' stigma.

When developing these interventions, it is likely to be most effective to use local resources and examples. This local approach makes the information more immediate and relevant. As feasible, it includes using community residents living with HIV/AIDS as speakers; integrating relevant cultural considerations into all materials; working closely with community leaders to develop and promote the intervention; and choosing a venue or venues through which a wide range of individuals can be reached.

In conclusion, as has been demonstrated within any number of health care arenas, stigmatization of a disease or disorder has adverse effects on affected individuals' ability to access appropriate care. The ethics and practicalities of not dealing effectively and proactively with stigma in rural and underserved areas has serious implications for patients, providers, and communities alike, and must continue to be explored and addressed in future research, prevention efforts, and intervention plans.

This research was supported by grant 1RO1DA13139 from the National Institute on Drug Abuse. Dr. Roberts also acknowledges the support of a Career Development Award (1KO2MH01918) from the National Institute of Mental Health.

Notes

Means and standard deviations are based on an 10-point scale, ranging from never (0) to all the time (10).

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