Experiences with, and perceptions of, barriers to substance abuse and hiv services among african ame

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Experiences with, and Perceptions of, Barriers to Substance Abuse and HIV Services Among African American Women Who Use Crack Cocaine Samuel A. Macmaster PhD

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University of Tennessee, College of Social Work , USA Published online: 25 Sep 2008.

To cite this article: Samuel A. Macmaster PhD (2005) Experiences with, and Perceptions of, Barriers to Substance Abuse and HIV Services Among African American Women Who Use Crack Cocaine, Journal of Ethnicity in Substance Abuse, 4:1, 53-75, DOI: 10.1300/J233v04n01_05 To link to this article: http://dx.doi.org/10.1300/J233v04n01_05

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Experiences with, and Perceptions of, Barriers to Substance Abuse and HIV Services Among African American Women Who Use Crack Cocaine Samuel A. MacMaster, PhD

ABSTRACT. Significant health disparities in the rates of HIV infection exist that primarily impact African American women. While research has demonstrated that HIV is preventable through changes in high-risk behaviors facilitated by substance abuse treatment, an individual must first be able to access and engage with treatment to derive any benefit from these services. While there is some research that identifies barriers to treatment access and engagement for African American women who use crack cocaine, these barriers require further examination. Current literature has focused primarily on internal motivation and treatment readiness without placing these concepts within the unique environmental context of social stressors for crack cocaine-using African American women. This study presents the results of eleven focus groups with eighty-nine African American women in which respondents document the HIV risk behaviors of crack cocaine users, present their experiences

Samuel A. MacMaster is Assistant Professor at the University of Tennessee, College of Social Work.

Address correspondence to: Samuel A. MacMaster, College of Social Work, University of Tennessee, 193E Polk Avenue, Nashville, TN 37210 (E-mail: smacmast@ utk.edu).

This project was supported by funds from a Professional Development Award funded by University of Tennessee’s Provost’s Office.

Journal of Ethnicity in Substance Abuse, Vol. 4(1) 2005 Available online at http://www.haworthpress.com/web/JESA © 2005 by The Haworth Press, Inc. All rights reserved.

Digital Object Identifier: 10.1300/J233v04n01_05

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in accessing substance abuse and HIV services, and documents their perceptions of barriers and services needs. The results of this study may further develop an understanding of the means by which individual service users experience their relationships with service providers and the factors that affect these relationships in order to better target potential interventions to reduce the spread of HIV. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-HAWORTH. E-mail address: <docdelivery@haworthpress.com> Website: <http://www.HaworthPress. com> Š 2005 by The Haworth Press, Inc. All rights reserved.]

KEYWORDS. Substance abuse, HIV risk, crack cocaine

INTRODUCTION There is a growing awareness of general racial and gender disparities in access to health care that disproportionately affects African Americans (Institute of Medicine, 2003). While these disparities are important to the larger community, there appear to be further disparities that primarily affect African American women who use crack cocaine. These women are subject to a unique environmental context with specific stressors that has a direct and dramatic effect on health outcomes, specifically related to HIV/AIDS. Gender and Racial Disparities in Access to Substance Abuse Treatment Services Each year, only a small percentage (18.2%) of the individuals who identify a need for substance abuse treatment are able to access it, and there is a definitive gender disparity in rates of treatment admissions (National Survey on Drug Use and Health, 2004). Although women use illicit drugs less frequently than men (6.4 versus 10.3 percent of the population) (NSDUH, 2004); analyses of the Treatment Episode Data Set found that from 1992 to 1998 women represented only about thirty percent of all admissions. Importantly, women are also more likely than men to designate cocaine as their drug of choice (DASIS, 2001). Racial disparities also exist, but are less definitive. African-Americans experience substance dependence and abuse at rates slightly higher, but generally comparable to Caucasians, 9.5% versus 9.3% (NSDUH, 2004).

Despite these comparable rates, African Americans enter treatment at

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disproportionately higher rates, as African Americans account for 12% of the population, but 24% of treatment admissions (TEDS, 2004).

However, the rates for substance abuse treatment admissions for African Americans steadily declined fifteen percent between 1994 and 1999, while rates for admissions for the total population increased three percent (DASIS, 2002). This issue is skewed by higher rates of involvement in the criminal justice system, as criminal justice referrals were the most frequent referral source for African Americans, accounting for 37% of all admissions (DASIS, 2002).

Gender and Racial Disparities in HIV/AIDS Prevalence While representing 12.3% of the US population, African Americans represent 39% of all AIDS cases (CDC, 2003). For African-American women this disparity is significantly increased, as African Americans represent 72% of all female cases nationally and experience rates at 23 times greater than Caucasian women (CDC, 2003). In Tennessee the gap is further widened as African Americans represent 16% of Tennesseeâ&#x20AC;&#x2122;s population, but account for 81% of AIDS cases among women. Of greater concern, AIDS rates were 28 times greater for African American women compared to Caucasian women, and 3.5 times greater than other women of color (Tennessee Department of Health, 2002). Currently AIDS is the leading cause of death of young (25-34 years old) African American women in this country (NCHS, 2002).

Substance Abuse Treatment Reduces HIV Risk Behaviors for Users of Crack Cocaine Drug use represents a well-established risk behavior for HIV and Hepatitis-C infections, primarily as it relates to injection drug use.

Other drug users are increasingly at high risk for contracting HIV as the awareness of the relationship of non-injection drug use to HIV risk has grown. Specifically, crack cocaine smokers have been found to be three times more likely to be infected with HIV than non-smokers (Friedman et al.). Use of crack cocaine can contribute to the spread of the epidemic when users trade sex for drugs or money, when they engage in risky sexual behaviors that they might not engage in when not under the influence, or when their use affects access to health care services (Ross et al., 1999; Marx et al., 1991; Cottler et al., 1998). Importantly, substance

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abuse treatment can be effective in reducing HIV risk among crack cocaine users (Hoffman et al., 1998).

Significance of Treatment Access and Engagement However, before an individual can benefit from substance abuse treatment services they must first gain access to, and become engaged with these services. Without such an opportunity many women are unable to overcome barriers to treatment access and engagement, continue to use, contract HIV, and die.

Based on analyses of data from the Drug Abuse Treatment Outcome Study (DATOS) Joe, Simpson and others (1998, 2002) developed the TCU Treatment Process Model. The model suggests that engagement in the treatment process is linked to treatment motivation, which consists of the individually based concepts of the desire for help and treatment readiness. Further analysis of the DATOS data utilizing a structural equation model found that motivation (treatment readiness) at intake was a strong predictor of therapeutic involvement and was more significant than other individual level variables (demographics and drug use measures) in predicting treatment engagement (Joe, Simpson, and Broome, 1999).

The model suggests that the ability to engage with treatment is primarily an internal process. However, this may not be an appropriate fit for the target population. Analyses of the same data found that crack cocaine users have lower 90-day retention rates (the majority [51%] dropped out of treatment) than other drug users when adjusting for demographic variables (Rowan-Szal, Joe, and Simpson, 1997). Wechsberg and colleagues (2004) ran similar analyses of the impact of treatment motivation on treatment engagement with data from a group of crack cocaine-using African American women and did not find it to have the impact that it did in the general population. Thus, for crack cocaine users, the inclusion of environmental barriers in the model may help to explain the lower retention rates, and ultimately assist in the further development of specialized engagement strategies and better outcomes.

Barriers to Treatment Access Barriers to treatment access exist that can be conceptualized as either individually or environmentally based. Individually based barriers to treatment access, including the lack of a desire for treatment, are often

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conceptualized in terms of treatment readiness or treatment motivation (Zule, Lam, and Wechsberg, 2003; Joe, Simpson, and Boome, 1998), but may also include income, insurance status, cultural or peer norms.

Additional environmentally based structural barriers exist that prevent access to treatment (Wechsberg, 2001), despite a willingness to enter treatment (MacMaster and Vail, 2002). For African American crack cocaine users documented barriers have included a lack of transportation, childcare needs, and/or the ability to self-pay for services (Wechsberg et al., 2003).

Significance of Culturally Relevant Services Issues of race and gender that impact the target population may further impact treatment access and engagement. Traditional approaches to substance abuse and HIV prevention and treatment may be problematic among African Americans given unfavorable views of available treatments (Longshore, Hsieh, and Anglin, 1993) and distrust of mainstream social services (Aponte and Barnes, 1995). Further traditional middleclass Euro-American intervention and treatment models may be inconsistent with those of many African Americans (Cochran and Mays, 1993) at risk as these models assume that people have the necessary resources and do not consider the barriers to prevention and intervention.

Significance of Gender Specific Services Traditional HIV and substance abuse services have not met the needs of many women. Despite the increasing rate of HIV infection among women, interventions aimed at reducing the spread of HIV have not always been tailored to be gender specific. Historically, most HIV education and prevention programs have focused primarily on gay or bi-sexual male individuals or injection drug users with a resultant lag in the development and identification of successful programs addressing the needs and concerns of women (Amaro, 1995). Similarly, crack cocaine-using men are also more likely to enter substance abuse treatment than women (Wechsberg et al., in press), and men are also more likely to seek treatment services (Copeland, 1997).

Theoretical Perspectives Underlying the Study Two major conceptual perspectives underlie the study. First, treatment access and engagement are approached from the social work Ecological Perspective, emphasizing the person in the environment and the

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ensuing dynamic interactions between biological, psychological, social and cultural elements serves as the unit of the analysis, rather than utilizing a focus on either individual or environmental factors alone (Germain and Bloom, 2000). Thus, the subsequent conceptual frameworks are understood to provide descriptions of the interactions between individual and environmental factors that affect the access to substance abuse treatment services for African American women who use crack cocaine. This is in contrast to the existing paradigm that views the phenomena of substance abuse treatment access and engagement as primarily an internal process occurring on an individual basis. The second fundamental perspective utilized here is the Institute of Medicine (2003) Health Disparities Perspective. Health disparities occur within a larger context of historical and contemporary inequalities with respect to social and economic realities, and provide a more focused framework from which the ecological perspective of this project is developed. The Institute of Medicine (2003) has developed a provider level model describing the complex interactions between service recipients, health care providers, and system level factors that lead to these disparities.

These factors include social, economic, and cultural influences; stereotyping and prejudice by clinicians, and the interactions between clinicians and service recipients (that may be subject to ambiguity and misunderstanding). From this perspective, these factors lead to racially disparate clinical decisions and resulting outcomes. Due to the documented significance of access to, and engagement with, substance abuse treatment services, and the disparities in service access for African American women who use crack cocaine, documenting the perceptions of possible barriers to service receipt within the population is a necessary first step to any investigation of the phenomena.

METHODOLOGY This exploratory study was designed to discern the perceptions of barriers to service access among a population of African American women who use crack cocaine. This was measured using the qualitative methodology of focus group interviews. The following research question was developed to further define the area of concern and interest, what have been the experiences of African American women in accessing substance abuse and HIV-related services?

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Design This exploratory study utilized a non-experimental design that incorporates qualitative components consisting of semi-structured focus group interviews of African American women who use crack cocaine. The interviews provided the perceptions, impressions and insights of current and former crack cocaine users from the Nashville area. Snowball sampling techniques were utilized to access the population, who were often initially identified by their response to a flyer distributed to known crack cocaine users in the community. Participants were offered a $20 gift certificate as an incentive to participate in the focus group interview. No children (under eighteen) were interviewed as part of data collection. Informed consent to participate was obtained from all participants and strict confidentiality of information was assured. All interviews were conducted in the late spring of 2004.

Procedures Project research staff contacted individuals who consented to participate in a focus group interview. Trained research assistants with indigenous knowledge of the specific neighborhoods conducted all interviews in a location convenient for the participants, a private room within a dropin center located within a public housing project. A brief questionnaire was administered to gather demographic characteristics and background/ control variables. The interviewer posed several broad questions designed to elicit data rich in detail. These questions encompassed service needs, barriers and facilitators to service receipt, the manner in which these barriers were overcome, and the manner in which individuals would prefer to receive services. Interviewers used planned probes, when necessary. All interviews were completed in one session lasting approximately 60-90 minutes.

Data Entry and Analysis During the focus group, a research assistant transcribed the interview into a word processing database using a laptop computer. Immediately after the interview, the content of each of the focus group transcripts was reviewed for accuracy and ambiguities, and summarized, creating data at the group level. Data at the group level was grouped by question and condensed by a second research assistant who again reviewed the transcripts for ambiguities and thoroughness and then summarized the

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data. Data was then compared across the eleven groups for emerging themes. All quotes were compared with the original transcription. In addition, the interviewers scrutinized drafts of the manuscript and the final document to ensure that the authentic voice of the participants is developed in the outputs.

Sample Analyses in this paper are based on summaries of eleven focus groups consisting of eighty-nine (89) individuals. Demographic information is summarized in Table 1. Focus group participants all identified themselves as both female and African American and ranged in age from twenty-one to fifty-eight. The majority (77.7%) of respondents reported household incomes of less than $10,000, and only approximately TABLE 1. Participant Demographics Demographic

Categories

Age (Years) Sexual Orientation

Total Sample (n = 89) 37.8 (SD = 8.4)

Heterosexual Homosexual Bisexual

Education (Years)

84.7% 8.3% 6.9% 11.79 (SD = 1.9)

Employment Status

Working Full-time Working Part-time Not Working

24.7% 16.9% 57.3%

Marital Status

Never Married Living with Partner Separated Married Widowed Divorced

48.3% 13.5% 12.4% 11.2 % 7.9% 6.7%

Less than $10,000 Between $10,000 and $29,999 Between $30,000 and $49,999 Between $50,000 and $69,999 Between $70,000 and $99,999 More than $100,000

77.7% 14.8% 6.1% 1.2% 0.0% 1.2%

Household Income

Number of People in Household Tennessee Native Length of Time in Residence (Years)

3.09 (SD = 1.8) 85.4% 6.03 (SD = 2.9)

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one-quarter (24.7%) reported being employed full-time. Only one-fifth (20.2%) of the women reported that they were living alone, however, the majority (75.3%) of women reported that they were single (i.e., Never Married, Separated, Widowed, or Divorced). As a group, participants were native to Tennessee (85.4%) and long-term residents of the specific community in which they currently resided (m = 6.03 years).

RESULTS The results section is organized around questions developed to further explore the research question.

Experiences in Accessing Substance Abuse Treatment Services Women in each group were asked about their experiences in accessing substance abuse treatment services. Many of the women had prior experiences with receiving services, and some of the women were continuing to receive these services at the time of their participation in the group. The following sections are organized around emerging themes found in the analyses of the data.

Fear For many of the groups of women, fear during the transition to treatment was the primary emerging theme. One woman recounted her own story, stating, “I didn’t know what to expect, I was scared. I started hollerin’ and cryin’ until I realized that there was a bunch of people that had the same problem as me.” Another woman stated, “I was scared that my body wasn’t going to know how to act without drugs in it.” Another woman stated, “It was scary. That first night when I knew when I couldn’t get high I got really scared. I was convinced I was not a crack head.” For some women, this fear subsided, as one woman stated, “I was worried about what was going on outside. It was hard for me to get focused until I really got focused. I really wanted to make sure that I was there for treatment and not thinking about all that other stuff.”

Other women in the groups reported that they had experienced fear of what treatment entailed and fear of judgment when they transitioned to substance abuse services. One participant did not realize that she was going to a program that specialized in treatment, instead thinking that she was going to be “institutionalized” with “crazy folks.” That partici-

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pant noted that she thought she would be “locked up [and] put . . . in a straightjacket.”

Importance of Social Support Access to social support was an important issue for many of the women throughout their interactions with the treatment system. This was an important issue when entering treatment, as one woman stated, “Even when I went to treatment I was worried about who my friends were gonna be when I got out. I had to learn some new friends.” It was also important during treatment, as another woman stated, “I felt good when I went in, my body and my mind. My family was there for me.” It was also a marker of change post-treatment, “I associate with my sisters and brothers now and before they just didn’t want to have anything to do with me. My family trusts me now and they are not ashamed of me anymore, especially my kids. I used to wake up every day wantin’ to get high and go to bed wantin’to get high. I don’t want to do that anymore.”

Social support was also available from treatment centers and fellow participants in programs. Several participants reported that it was good to know that others were in the same situation when they entered treatment. Another woman stated that having support from the program was important: “The Sisters program [case managers] really helped me. If it wasn’t for . . . them I don’t know what would have happened to me. They went to court with me, all the times when I relapsed they was with me.”

Children Caring for children was a common theme for some participants.

When discussing their experiences when receiving substance abuse related services, several women stated that they had been able to access treatment through involvement with the Department of Children’s Services. One woman stated, “[I] would have loved to have gotten in some other way before this,” adding “this is my first time in treatment, and hopefully my last.” Another woman stated, “This is my third time in treatment. It took me a month and a half to get in. I needed to go to a place where my kids could go too. I lost my kids. Now that I have them back I know it will be harder.” Another participant reported that she had to give up childcare duties in order to access services, “From the streets to get to treatment, that was an experience. I had been out there a long time; you know what I’m sayin’? I had to leave my home, my children, everything to go into a program, but it was something I needed.”

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Physical Health Issues Several of the women reported that they developed an awareness of the physical toll that crack cocaine use causes when experiencing the abstinence facilitated by substance abuse treatment. One woman stated that when entering treatment, “I hurt and started aching. Everything hurts.” Other women stated that the physical recovery was an important component of the treatment experience. One woman summed this up stating; “You could sleep, coming from a place where you might be up for five days, that was good. Then you get an appetite. My jaws got sore when I would chew my food because I wasn’t in the habit of eating. I gained a lot of weight. I didn’t know . . . how much I was supposed to weigh!”

Expectations and Motivation When asked about their experiences with receiving services related to substance abuse, several participants stated that when they first began to access service the services did not initially meet their expectations, but that they were learning to accept treatment as provided and to deal with it, as part of “life on life’s terms.” Several women reported that motivation could overcome this disappointment. One woman stated that if “you want help, you can get it if you want it bad enough” noting that there are treatment programs available. Similarly, another woman stated, “it was great because at the time [she] wanted to do it.” Another woman reported that accessing treatment alone was not enough, stating, “That’s just the first step [accessing treatment]; you have to admit you are powerless.” Another stated, “Once I realized I don’t have to use was a bit of a turning point for me, once I started working the step[s], I learned more about me and that gave me strength to want something different. Now in life as I go through it and live life on life’s terms.”

Relapse Many of the women reported multiple treatment episodes, and/or attempts at abstinence. One woman, who had been in two treatment programs, noted that they had “made [her] stronger,” but that after she left both programs, she started to use again. Another stated, I had reached a point where I was tired and wanted to kill myself. I wanted to go to treatment and tell them that I wanted some help,

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but I kept getting high. I needed to get my mind together and I didn’t want to be where I was anymore. I did get some help . . . I stayed clean for about nine months, but I went back in. I got in trouble with the law and they asked me if I wanted to go to treatment while I was in jail. There was [Narcotics Anonymous] people coming and talking to me while I was in jail.

Another woman stated that she was clean for six or seven months before she started using again. Another summed up her experience like this, “At first they say go to outpatient if they ain’t a lot of alcohol involved. I smoked every day and I didn’t think I could stay clean. I didn’t realize that I was going to have to give up all drugs and not just crack. It took me a couple of times reaching out for help before I could get some help.”

Several women were continuing to use at the time of the focus group and rather than reporting that they relapsed after being abstinent in treatment, they conceptualized treatment as a break or vacation from use.

When asked about their experiences receiving substance abuse services, two women stated that entering treatment was a needed break. Another woman in a separate group stated, “When I went to treatment it was like a break. I was like, I needed a break.” A member of a third group reported that treatment “was a long rest, a . . . break.”

Concerns About Substance Abuse Services Women in several groups compared outpatient and residential services, suggesting a preference for residential or inpatient services; one woman summed this up stating, “I first done outpatient treatment. But there’s a lot of time when that ain’t gonna do it for you ‘cause you’re trying to get away from drugs. Inpatient is better.” This was not a universal opinion; one woman rebutted this stating that, “I carry myself with me, ya know? It don’t matter where it is, you can go to Timbuktu if you wanted drugs, you can find them.”

Several women had received services for individuals who were dually diagnosed with co-occurring mental health disorders. Several women reported that they were surprised to be receiving mental health treatment; one woman in particular stated, “I only been in one [treatment program], they put you in, maybe I had a misperception, but they was giving me drugs while I was in there, I refused to take them. I stayed the twenty-eight days but I didn’t take the drugs. I went to the groups but I didn’t fit in.”

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Barriers to Receiving Substance Abuse Treatment Services When asked about barriers that they faced when attempting to access substance abuse services, participants recounted many obstacles they faced. The process of accessing services was difficult for many of the women. The groups were made up of women who had both successfully accessed services and those who had not been successful at their attempts. Only a very few of the women in all of the groups reported that they had never attempted to access substance abuse services. One woman stated that the process was one in which she “had been let down,” another described the process as “hell.” Some of these barriers can be conceptualized as structural barriers within the system of care: waiting lists, insurance and financial issues, childcare, the need to access services through other systems of care, loss of entitlements, transportation, and availability of drugs. Other barriers are individual level barriers, including: a lack of desire, fear and shame, and homelessness.

Waiting Lists The most consistent theme was the issue of the time lag between the time that the individual made a decision to enter treatment and when treatment entry was possible. Several women reported that not being able to get into treatment when one is ready to go was the biggest barrier, and/or that the waiting was the most difficult part of the process. In one group, most of the women stated that they had to wait anywhere from overnight to six weeks to get into a treatment program. One participant stated that long wait lists had consistently prevented her from accessing services at local programs when she was in need. Another woman shared her own experience of having to wait a week before a bed opened up at the treatment program. She continued by stating “I heard the only way to get in quick was to go in high. I kept getting high the whole time I was waiting to get in.” Several of the participants discussed continuing to use while waiting, often losing the desire to access services in the process. Another participant shared her own experiences of having to apply to programs all over Tennessee, only to be continuously rejected. Another participant recounted a story of the obstacles she faced, stating, “I called one outpatient treatment program and they told me that I had to go to three meetings [Alcoholics Anonymous or Narcotics Anonymous] before they would even talk to me. I wasn’t going to meetings. I didn’t even know what they was talkin’ about.”

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Finances-Insurance Lack of finances and/or not having adequate insurance coverage was a frequently cited barrier to service access. When asked about barriers to receiving substance abuse services, one woman stated that, while she herself had insurance, she could “see how that would be a problem for someone who didn’t.” Another woman discussed the financial aspects of treatment programs, “Since I have been in treatment, I had good insurance, you move on in. You got to have some money; I have seen people that could not get in because they didn’t have insurance. No green, no clean. It’s like it’s for profit business.” While lack of insurance was consistently cited as a barrier in the groups, participants who stated that they had insurance reported that they must often wait for approval from their insurance companies before they can enroll in treatment programs.

Other participants also stated that the type of insurance you have determines what programs you will have access to.

The Need to Access Services Through Other Systems of Care When confronted with the inability to access services through the substance abuse treatment system, women in most of the groups discussed accessing services through other systems of care. Several women reported gaining access to treatment services through physical health services. For some of the women, physical illness was often related to substance abuse treatment access. One woman reported that her physician was able to access services for her; another stated, “Your situation has a lot to do with it. I was about to have a stroke, I was in the emergency room and I was gonna go to treatment whether I wanted it or not. I was sick.”

Other women reported accessing substance abuse services through mental health services. One participant stated that through her battle with obstacles to treatment access, she found that she had to report that she had become suicidal before she could access services. Another participant stated that she had mental health issues and that the medicine she was receiving through her mental health provider was not helping her, so substance abuse treatment was accessed for her.

While part of the substance abuse treatment system, alcohol treatment services became a conduit for many of the women who were seeking services specific to their cocaine use. Women in all groups reported that treatment was more available if they reported that they had used alcohol. Several participants stated that they had experiences in which

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they had to say that they were using alcohol, or in some cases use alcohol prior to being admitted, in order to access treatment. Others stated that when they had tried to access services, some programs would not accept them because they were not abusing alcohol as well as cocaine.

Childcare Childcare responsibilities were a factor reported in most of the focus groups. For many of the women the issue was simply care for dependent children while they were engaged in substance abuse treatment. For women in most of the groups the issue was not childcare, but the fear that they would lose custody of their children if they accessed services.

One participant stated that having children created obstacles for her when she attempted to seek treatment. She had hoped to enter a program where she could take her children with her, but her caseworker found a program for her that did not allow children. She did not enter the program. Ironically, she reported that she initially sought treatment because she had not wanted to repeat the experiences of her friends who lost custody of their children due to their substance use. A participant in another group reported that she had to relinquish custody of her children before she could access services, and how incredibly frightening it was to do this, as she was unsure if she would ever regain custody.

Loss of Entitlements In addition to the fear of losing custody of children, several participants reported that the fear of losing entitlements kept, or had kept, them from accessing services. Women in several of the groups reported the fear of losing public housing as a barrier to service access. Women in another group reported that they had not tried to access services due to the fear that they would have their food stamps cancelled without being able to access them again.

Transportation A lack of transportation was consistently cited in almost all of the groups as a barrier that had been encountered when trying to access services. This appeared to be particularly true for outpatient services, as reliable transportation was needed on a daily basis to access both the treatment meetings and the required support group meetings.

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Availability of Drugs One participant noted that having to return to the same environment was a barrier for her, stating that it was hard to “know you have to go home to the same old stuff afterwards, somebody there waitin’ for you to get high with.” Another woman in a separate group added, “people start getting’ high again after they’ve been to treatment. The drugs are the worst barrier.”

Lack of Desire One of the most consistently cited barriers was a lack of desire for treatment and/or to stop using. One participant reported that the major barrier she faced was her own apathy towards her situation. She stated that when she was using substances, she didn’t care about anything, but her use. She reported that she had used any excuse she could to not stop using, including using her children as an excuse for why she couldn’t access services. She stated that at the time she didn’t care about her own children, but used them to justify why she was not able to enter treatment. Another woman stated that her inability to stop using was the biggest obstacle to getting treatment, stating, “I was my biggest barrier a lot of days. I thought I could handle it and that it wasn’t that bad. The reality was that I didn’t have any control. The two weeks I waited to get into treatment I told myself I just did not have a problem when I really did.” Another woman in the group stated that, “if somebody knows that you really wanna get help, you’re gonna get help. People make up all kinds of excuses like their children, stuff like that, but those are just excuses.” For several women the lack of desire continued even after being able to access treatment, as several reported continuing to use substance after they had accessed treatment services. One participant reported that she was in an outpatient treatment program, so she was able to still use while she was in the program. The barrier for her was, “the dope itself, and not wanting to stop using drugs.”

Fear and Shame Related to a lack of desire was a fear of change. One participant recounted how she wanted to stop using substances, but that she loved many of the aspects of the life that went along with using. She also stated that at the time she did not feel hopeful and she was unsure about how to start her life over again once she stopped using substances. An-

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other participant stated that an obstacle she faced was shame about her relapse. She shared her own experiences of relapsing after nine months of being clean. When she relapsed, she lost all of her clothes and her car.

Her ordeal led to a great deal of fatigue, but she was eventually able to gain access to services again only through an arrest.

Homelessness A lack of a stable residence was an issue for many of the participants in their attempts to access services. Several participants stated that being homeless added to the barriers they faced. For some women this meant that contacting programs was more difficult. Others stated that finding a drug-free environment was difficult when homeless. One of these participants stated, “Being homeless made it even harder. There was no place for me to go where I could stay clean while I was waiting to get into treatment.” Another woman reported that she had been homeless and that she had to have herself arrested in order to access needed services.

Experiences in Accessing HIV Services When asked about experiences related to receiving HIV services, participants had less to report, usually due to a lack of interaction with HIV services. Those who had accessed services usually had most remarks about the quality of the services and their experiences. In most of the groups, some of the participants reported that they had been tested for HIV, usually while they were incarcerated, or pregnant. Participants in several groups reported that HIV tests often coincided with arrests for prostitution. Several participants also reported receiving prevention materials while incarcerated and/or in substance abuse treatment programs. A few participants felt that there were too many services, for instance a woman who stated that she had “received more HIV services than [she] needed” and that “every time [she] turns around somebody’s giving out condoms, testing, whatever.” When asked about experiences receiving HIV services, one woman in the group discussed the lack of program she felt, stating, I only know of one program. Even when I was in college, there was nobody giving out condoms. It’s not just people on crack it’s everywhere. I have family members that have it. I’ve been educated about it so I know. You have to deal with it. There is global awareness, but not local awareness.

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Barriers to Receiving HIV Services When asked about experiences with barriers to the receipt of HIV services, the response in almost all focus groups was that many of the women stated that they had not used, or tried to access, these services.

Several groups discussed the relative easy access to educational pamphlets and condoms, but there was some concern about barriers to access to HIV testing. Several individuals cited the cost of HIV testing to be a prohibitive barrier. However, the more frequently discussed barrier was the fear of testing positive. Throughout all of the groups, the most frequently discussed barriers related to the stigma attached to HIV, either that the assumption that if one is using crack cocaine that he or she is HIV positive, and the assumption that if someone observes you visit an AIDS service organization that you are HIV positive. The other frequently cited barrier was continued use of substances, which lead to procrastination and/or apathy regarding HIV-related issues.

DISCUSSION The results of this study clearly document the existence of structural and individual level barriers to the receipt of substance abuse services, and to a lesser degree HIV-related services among African American women who use crack cocaine in the southeast. While numerous studies have measured the risk behaviors of female crack cocaine users and the outcome of treatment services, there are few that have looked at barriers to the receipt of services. The present analyses are only descriptive in nature and only report the perceptions of these women, rather than focusing on answering a more specific research question, i.e., what factors predict treatment access, or even establishing a prevalence rate within the population. Given this limitation the findings, as such, are important as they establish the existence of these phenomena and provide the qualitative perceptions of the women who experience these phenomena.

Perhaps the most interesting findings presented here involve several themes that cut across the participantsâ&#x20AC;&#x2122; responses. Fear became an emerging theme, related to accessing services due to fear of losing custody of their children, fear of losing entitlements, fear of change, fear of what the treatment experience will consist of, fear of being assumed to be HIV positive, etc. Similarly, responses also provide the experiences of interacting with an overloaded and non-responsive service system from a relatively powerless perspective. Respondents had to overcome

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structural barriers while under the influence and lacking resources to access a system that they in some instances assumed could remove their children, their homes, and their food. Of course, this data is only suggestive of similarly high prevalence rates, but they are consistent with the notion that African American women who use crack cocaine have to overcome barriers to access needed services. These women are therefore also at particularly high risk for contracting HIV and other blood borne diseases given the incidence of these barriers coupled with a lack of substance abuse and other services. The present study does not allow formal testing of this notion, though further study is clearly warranted.

There are several additional points that can be drawn from this data.

First, the data both on the demographic characteristics of respondents as well as their relationship to substance abuse treatment is in sharp contrast to assumptions often made about crack cocaine users, i.e., they are consumed by their use to the extent that they are not employed or able to maintain a residence, do not care about themselves or others and thus do not make changes, and/or lack a willingness to consider stopping their drug use. Secondly, with the majority of the sample expressing experiences in attempting to access substance abuse treatment services, the lack of involvement in such programs may be due to a lack of availability of appropriate drug treatment services for crack cocaine users or in barriers to access to such programs and not a lack of desire.

There are some obvious limitations to the data presented here. First, as the data is primarily qualitative in nature and based on snowball sampling procedures, the responses in this study may not be representative of all individuals who use crack cocaine. Second, the sample size (n = 89) clearly limits our ability to draw reliable conclusions. However, given the descriptive focus of the analyses presented, the sample size may be adequate to the study purpose. Additionally, the reliability of self-report data from drug users may be questioned, particularly with the studyâ&#x20AC;&#x2122;s use of focus group interviews. Given the social nature of a focus group interview the expressed interest in substance abuse and HIV services and the existence of barriers to these services may simply be a measure of the perceived social desirability of this response and not the true desire of the participants. This descriptive paper has sought to provide information about the existence of barriers to service access.

Actual prevalence rates and relationships to other variables are outside of the scope of this study. Future research efforts may want to test such questions in a more scientific manner.

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