HIV/AIDS, Substance Abuse, and Hepatitis Prevention Needs of Native Americans Living in Baltimore: In Their Own Words

 

 

 

 

 

Jeannette L. Johnson, Ph.D.

 

Friends Research Institute

1040 Park Ave. Suite 103

Baltimore, MD 21201

410-837-3977 x255

jjohnson@frisrc.org

 

Jan Gryczynski, M.A.

 

Friends Research Institute

1040 Park Ave. Suite 103

Baltimore, MD 21201

410-837-3977 x246

jgryczynski@frisrc.org

 

 

Shelly A. Wiechelt, Ph.D.

 

University of Maryland Baltimore County

Department of Social Work

1000 Hilltop Circle

Baltimore, MD 21250

410-455-2137

swiechelt@umbc.edu

 

 

 

 

 

 

 

 

 

Accepted for publication in AIDS EDUCATION & PREVENTION.

Please do not cite without the author’s permission.

Acknowledgements

 

We would like to acknowledge the Native American Community in Baltimore, MD as well as the helpful support of Susan Roth.

 

This project was supported by a grant from the Substance Abuse and Mental Health Services Administration, Center for Substance Abuse Prevention, SP13321.

 

 


Abstract

 

 

A needs assessment funded by the Center of Substance Abuse Prevention was conducted in 2005-2006 to determine the HIV/AIDS, substance abuse, and hepatitis prevention needs of Native Americans living in Baltimore, MD. We used a community-based participatory approach to gain an in-depth understanding of local Native American health service needs. Community stakeholders and key informants embedded in the local Native American population were consulted at each stage of the research planning process. Two complementary methodologies (focus groups and surveys) produced a holistic assessment of the population’s needs, risks, and strengths, and uncovered the social and cultural contexts in which health risk behaviors unfold. The use of these methods within a participatory framework produced a more complete portrait of the service needs of the Native American population in Baltimore. Findings from this study support the necessity for future HIV/AIDS, substance abuse, and hepatitis prevention programming for urban Native Americans.

 

 

 

Key Words: Native Americans, HIV/AIDS, substance abuse, hepatitis, prevention, needs assessment

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

            Now, and for many decades, drug and alcohol abuse problems have continued to occur in Native American communities, and more recently, HIV/AIDS and hepatitis have appeared. Over 4 million Americans (1.5 percent of the U.S. population) identify as American Indian or Alaska Native (Ogunwole, 2006). Far from a homogeneous population, the many Native American subpopulations are culturally diverse and complex, with over 500 distinct tribal entities recognized by the U.S. federal government and many more that are not officially recognized (Federal Register, 2002). While Native Americans are often thought of as being isolated on reservations, this is no longer the case in the modern United States (Ogunwole, 2006). Most Native Americans live outside of reservation lands, with large numbers residing in urban environments (Ogunwole, 2006; Hirschfelder & Montano, 1993; Snipp, 1992).

            Since first contact with European peoples, Native Americans have faced persistent health disparities for a range of conditions (Jones, 2006). In recent years, HIV/AIDS diagnoses have continued to rise among the Native American population (CDC, 2006a). Over the last decade, AIDS rates for Native Americans have surpassed those of whites, and the population has also displayed extremely high rates of sexually transmitted infections (Bertolli et al., 2004). Thus, HIV/AIDS is a growing problem for Native Americans, and the group represents unique challenges to prevention (see Vernon & Jumper-Thurman, 2005).

            The State of Maryland does not have any federally recognized tribe. Nevertheless, according to the 2005 American Community Survey from the Census Bureau, there are approximately 43,594 sole- and mixed-race Native Americans living in Maryland, with over 20,000 in the Baltimore Metropolitan Area, and over 5,000 in Baltimore City alone. The proportion of Native Americans indicating a single race is 3 times greater in Baltimore City than in the state of Maryland as a whole (U.S. Census, 2005).

            Baltimore City has been an epicenter of HIV since the beginning of the epidemic. The Baltimore Metropolitan Area had the 2nd highest AIDS case rate in the nation (40.4/100,000) in 2005 (CDC, 2006b). Nearly 14,000 people in Baltimore City were living with HIV/AIDS as of July 2004 (Baltimore City Commission on HIV/AIDS, 2005). It is difficult to estimate the full burden of HIV/AIDS on small urban Native American communities, and Baltimore is no exception. First, prevalence and incidence statistics reflect reported cases, and do not include those who do not get tested or come into contact with the health care system. Second, Maryland offers anonymous HIV testing in conjunction with confidential name-based testing, which makes tracking epidemiological data on small populations problematic. Third, Native Americans may be included in statistics of other racial categories either through misclassification by providers or an unwillingness to self-identify as Native American, especially for sensitive information associated with deviant or stigmatized behavior.

            Given the scarcity of data on local Native Americans in general, and their health needs in specific, we used a community-based participatory approach (Caldwell, Davis, Du Bois et al., 2005) to examine the HIV/AIDS, substance abuse, and hepatitis health service needs of Native Americans living in Baltimore. Institutional partners for this project included a community-based service provider and a local church with a large Native American congregation. Community stakeholders and key informants embedded in the local Native American population were consulted at each stage of the research planning process, including recruitment strategies, questionnaire and focus group discussion development, and fieldwork methods. We used an array of complementary methodologies to produce a holistic assessment of the population’s needs, risks, and strengths with regards to HIV/AIDS, substance abuse, and hepatitis. In this paper, we report results from focus groups and community surveys. The needs assessment was conducted in order to inform the design of a culturally-specific prevention intervention.

METHODS

OVERVIEW

            The health service needs of Native Americans in Baltimore were assessed using two sources of data, each with separate methodologies. These two sources included focus groups and intercept surveys. IRB approval was obtained for all data collection procedures involving human subjects. Informed consent was obtained for all participants in the focus group component. A waiver of signed consent was obtained from the IRB for the surveys, and all respondents were given an information sheet describing the study, risks and benefits, and IRB contact information.

FOCUS GROUPS

Subjects

            A total of six focus groups were conducted with male (n=16) and female (n=23) adults living in the Baltimore area who self-identified as Native American (total N= 39). Group size varied from 4-11 participants. Participant ages ranged from 18-75, and over half were in their 40’s. Individuals were given the opportunity to identify multiple tribal origins. Those identifying as Lumbee numbered at 19, and 11 identified Cherokee as their primary tribe. Other tribes included Sioux, Chickasaw, Blackfoot, and Croatan. Five of the focus groups were held with members of the target population, and one other was held with community stakeholders (Native American business owners and professionals).

Recruitment

            For five of the focus groups, participants were recruited from clients of the community-based service provider. All participants were told at recruitment and during the informed consent process that their participation or refusal would have no bearing on their receipt of services or standing with the program. A ten dollar incentive was provided for participation. The community stakeholder group was recruited through key informant networks and from the partnering church.

Procedure

            Focus groups lasted between 1.5 and 2 hours. All focus group discussions were recorded with the consent of all parties present. Each group was attended by two members of the research staff, with one acting as the facilitator and one taking notes. The discussion followed a semi-structured moderator’s guide, with questions presented in four domains: 1) alcohol and drug abuse [nine questions]; 2) HIV/AIDS [11 questions]; 3) hepatitis [six questions] and; 4) community needs [five questions]. Questions were designed to uncover risk and protective factors for Native Americans in Baltimore for each domain. In addition to the structured questions, the facilitator used extensive follow-up probing in order to gain more information and develop a more precise contextual portrait of the ideas conveyed by participants. Examples of questions include:

o       What kinds of things put a Native American person in your community at risk for HIV/AIDS (or substance abuse, or hepatitis)?

 

o       Do you think that any of the Native American people in your community have HIV/AIDS?

 

o       What types of HIV/AIDS services are needed for Native American people in your community?

 

o       How are healthcare professionals viewed in your community?

 

            The five focus groups were conducted in a well-equipped and private conference room at the participating service agency. The additional stakeholder focus group was held with local Native American business owners and professionals at the nearby church and followed the same procedure. This group’s input was sought to elicit representation of Native Americans from diverse socioeconomic backgrounds.

Analysis           

            The recorded focus group discussions were transcribed, and three members of the research staff also listened to the tapes. Notes and transcripts of recorded discussions were coded for themes and concepts emerging from the data by three raters. The coding process was multi-layered and began with open coding of specific themes, then moving towards general patterns (Miles & Huberman, 1994). Data from each focus group was first analyzed separately, after which a merged document of themes and their corresponding text was created and analyzed following the same procedures. Raters discussed commonalities among their codes and reached consensus on the major themes found in the data.

INTERCEPT SURVEYS

Subjects

            The community health intercept survey (n=99) was administered to adults in several city locations. Respondents were 57.6% female and 38.4% were male; 4% left the item blank. The sample ranged from 18 to 87 years of age. Of the entire sample, 52.5% self-identified as Native American. The most prevalent tribal affiliation was Lumbee (30%), followed by Cherokee (10%). The sample included 18.2% of respondents who identified as white and 17.2% who identified as black or African American.

Recruitment

            A multi-site recruitment strategy was used for this component of the needs assessment. Subjects were recruited at a health fair held at the collaborating church, where the research team staffed a table with flyers and descriptions of the study. Subjects were also recruited at the participating community-based service provider, and as part of fieldwork in neighborhoods with high concentrations of Native Americans, where people were approached in public places and asked if they would like to participate. Surveys were anonymous and respondents were paid one dollar for completion.

Measures

            Two similar but slightly different versions of the survey were used, a pilot version (n=45) and a revised version (n=54) that was created to better address the core issues of interest. On identical items, data from the pilot version is pooled with the revised survey. The revised community health intercept survey inquired about the respondent’s awareness of substance abuse, HIV/AIDS, and hepatitis services in their community, asking separate yes/no questions for prevention and treatment. For those indicating they were aware of services in a particular domain, the survey asked another yes/no question on whether the respondent felt the services were effective. Both survey versions captured data on race or tribe, sex, age, and community, as well as whether respondents were satisfied with the services available in their community. Respondents were also given the opportunity to list the biggest issues facing their community in a final open-ended question.

Analysis

            Data from the community health intercept survey was analyzed using the SPSS 12.0 data analysis software package. The open-ended question was coded for content by the researchers, with numeric codes assigned to each content area. 

RESULTS

FOCUS GROUPS

            Seven major themes were identified: 1) The scope of the problem; 2) Holistic conceptualizations of risk; 3) Pride, shame, & stigma; 4) Socioeconomic disadvantage; 5) Youth & reentry populations; 6) The city lifestyle and peer influences; and 7) Community disintegration.

Theme 1: Scope of the Problem

            Focus group data revealed that substance abuse, HIV, and hepatitis are all perceived to be serious problems for Native Americans in Baltimore. Participants described the drug problem as “Huge”, “Overwhelming”, and “A big problem”. Many of the participants had either personal or familial experience with substance abuse, and reported knowing many Native Americans in the city who use drugs. The major problematic substances for Native Americans in Baltimore resemble those seen for the city’s population (MADAA, 2005), with the greatest number of treatment admissions for heroin, followed by cocaine/crack, alcohol, and marijuana. Participants were aware of the HIV and hepatitis risk associated with injection drug use, and believed that these diseases were formidable problems throughout Baltimore, and in the fragmented Native American population in particular. Participants reported that HIV risk behaviors are extremely prevalent within Baltimore’s Native American population. Unprotected sexual activity with multiple partners was seen as commonplace, along with injection drug use and syringe sharing.

Infection with the hepatitis C virus (HCV) has become a growing problem among drug users in Baltimore. HCV was seen as an emerging issue of great importance, particularly because participants knew less about the specifics of the disease (i.e. transmission, prevention, and treatment) than HIV, and several participants in the group reported having HCV themselves. Finally, it is worth noting that sexually transmitted infections other than HIV were also mentioned in several instances as deleterious health issues facing Native Americans in the city.

Theme 2: Holistic Conceptualizations of Risk

            Focus group participants viewed risk for substance abuse, HIV, and hepatitis from an interrelated and holistic standpoint, focusing on the breakdown of vital socio-cultural systems rather than solely on specific risk behaviors. Equal emphasis was placed on the impact of systemic inequalities and resource disparities, barriers to health service access, community fragmentation, and loss of cultural cohesion and identity among Native Americans in Baltimore as on the direct behaviors leading to HIV transmission. Prevention strategies addressing immediate risk behaviors in conjunction with these larger issues were seen as having the greatest potential for success.

Theme 3: Pride, Shame, and Stigma

            Several important culturally-rooted risk factors emerged through the focus group data. One factor which prevents Native Americans from seeking health services is pride and, in cases where the health issue is associated with socially unaccepted behavior (i.e. substance abuse, HIV/AIDS, hepatitis), shame. Individual behaviors such as gang involvement, drug use and needle sharing, and promiscuous sexual activity were seen as common among Native Americans in Baltimore, but they were also seen as being shrouded in secrecy. These forces can stifle an individual’s willingness to get tested for HIV and hepatitis, and can also discourage participation in prevention and harm reduction programs.

There’s not a lot of help in the community for Native Americans. Our people... I don’t know if it’s pride, or shame or whatever, but a lot of them just don’t take a chance to get the help. A lot of them just don’t reach out for it.

 

Mainstream health services were viewed with skepticism, demonstrating an attitude towards help seeking that is reflective of pride and the generational tendency to avoid contact with health providers, as the quotes from three different groups show below.

I grew up in North Carolina. The old people in Carolina, when they got sick, they had a lot of home remedies. They didn’t run to the doctor when they smashed their finger or caught a cold. I’ve seen my aunts and uncles go down to the woods, get roots and stuff and boil them and drink it. A lot of them got mindsets like that. Why go to the doctor unless there’s something really wrong with you?

 

Facilitator:             How are healthcare providers viewed in the Native American community?

Participant:            Try not to go! [laughs] Don’t go to doctors.

 

A lot of them [Native Americans in Baltimore] don’t go to the doctor’s. They don’t know they got it [HIV] because they don’t have the [health] insurance.

 

            An excerpt of a discussion below illustrates the effects of fear, stigma, pride, and shame on willingness to seek testing, prevention, and treatment services for HIV/AIDS. Additionally, it shows the perception that HIV/AIDS is a serious issue for Native Americans in Baltimore.

Facilitator:             Do you know of any Native American people in your community who have HIV or AIDS?

Speaker 1:              Yeah, plenty!

Speaker 2:              They’re secretive too. I’ve seen that a lot of times, when people find out that they have HIV, they go to Carolina.

Facilitator:             Why?

Speaker 2:              Because I guess they’re ashamed.

Speaker 3:              I know I have seen many Native Americans die from AIDS.

Facilitator:             How many Native Americans have you seen die from AIDS?

Speaker 3:              Like six or seven. A couple of them died up here and a couple died in North Carolina.

 

Cyclical migration between Baltimore and the Lumbee-populated regions of North Carolina (e.g. Robeson County), particularly in times of illness, is a practice which may complicate the capture of accurate epidemiological data on this population. Many participants believed that there are more Native Americans in the city infected with HIV than are reported; all perceived the population to be at risk. The potential impact of racial misclassification on epidemiological, criminal justice, and population statistics should not be minimized. Several participants in the focus groups described personal experiences of misclassification.

Participant 1:         When I went [to jail], they had me as black.

Participant 2:         They marked me as Hispanic when I was locked up.

Participant 3:         When I was born, my mother put white [on the birth certificate]. She didn’t put Native                                        American. But I am Native American.

 

Theme 4: Socioeconomic Disadvantage

 

            Themes of disadvantage, lack of opportunity, and the pervasiveness of poverty for Native Americans in the city were prevalent throughout the analysis. In considering the issue of disadvantage more closely, lack of education was seen as a significant risk factor in that it limited an individual’s opportunity to succeed in mainstream society. Moreover, poverty and disadvantage were seen as major barriers to accessing health services, as many people cannot afford private health insurance and may have only marginal or transitory employment, if any at all.

I’m unemployed, and I can’t even buy my medicine. Because it costs like a hundred dollars. I don’t have a hundred dollars to give up for my medicine.

 

My grandpa is 63 years old and can’t get healthcare. He cannot get healthcare. He has to wait until he’s 65.

 

There’s people out here that want help, but if they don’t have insurance they can’t get it.

 

There’s free [healthcare] centers right here, but the waiting list is like years long.

            Participants noted that competing responsibilities for financially struggling families, particularly single parent households, typically result in people neglecting their individual health. A number of participants described taking what could be considered extreme measures to access healthcare. Many Native Americans reportedly utilize hospital emergency rooms when they get sick, and then owe substantial debt for the services provided. With the difficulty of accessing substance abuse treatment, one participant described feigning the desire to commit suicide in order to access medical and mental health services through the psychiatric ward.

And I know a lot of people that, to get help, go to the hospital and tell them that they’re going to kill themselves, just to get hooked up in one of them wards. I’ve done it.

 

Theme 5: Special Populations: Youth and Reentry

            Great concern was conveyed for Native American youth growing up in the urban environment. Offspring of working poor, single parents in general were seen as being at high risk of developing deviant peer networks (and subsequent drug use, criminal involvement, and health risking behavior), as these parents worked long hours and could not offer the supervision and involvement that would shield youth from negative influences. Drug and alcohol abuse among family members and a lack of positive role models for youth were seen as directly related to disillusionment, criminal involvement, substance use, and related behaviors which may lead to increased risk for HIV and hepatitis. Youth were seen as an extremely vulnerable segment of the population, particularly within the context of a dysfunctional family atmosphere in which substance use and violence were modeled by parents or other authority figures.

When I was little I thought it was normal. My mom woke up with a beer. And I thought, that’s what you did. I didn’t know. So maybe we need to show kids that they don’t need to do that.

 

For me, my father was an alcoholic. And he used to just come home at all hours of the night, beating us up. I ran away one day, and the people I joined with, everybody was getting high. So I was just being a follower, I joined right on in with them. I liked the way it made me feel. I’m 38 now and started using when I was 15.

 

Culturally-responsive community-based programs which offer sustained engagement with youth through positive role models and direct mentorship were suggested as promising early intervention strategies.

That’s about the best thing to do [to keep youth from using drugs], to have a club or even a sponsor and a mentor.

 

We need something for the kids to do after school, that’s probably the biggest thing. Because parents are at work, kids are running the street. There’s nothing for them to do.

 

            Many of the participants from the target population explained complex personal, family, and peer experiences with the criminal justice system. A major issue was cyclical detention and incarceration, with people becoming “Institutionalized” over time, unable to adjust to life in the community.

I have a girlfriend who’s… been in jail for eight years, got out, spent a month out on the streets, and did something just so she could get back… She’s accustomed to it. That’s her way of life. She’s not used to living on the streets. She’d rather be in prison than living on the streets.

 

I’ve got a brother who has spent most of his life in jail, and he’s 48 years old. And when he gets out on the street, I think the longest he’s ever stayed out was a year. He said, ‘Well, I’ve had my vacation, it’s time to go home’. He’ll do something to get back into prison. Being on the streets is a vacation to him. His home is in jail.

 

Those Native Americans reentering communities from the criminal justice system were seen as needing additional specialized services, such as transitional housing, job training, substance abuse treatment, and in many cases medical care.

I have a son who has been in prison for three and a half years, and he’s getting ready to come out soon. And he said, ‘Dad, I just don’t want to come out and go right back on the street. Please try to help me find somewhere I can go, like a recovery house so I could go there, be able to stay, find me some work, and then when I do get back on the street I would have money in my pocket and I would be adjusted to the street.

 

I also would love to see, if I had a wish list this would be on top of the list, some kind of program for the Native Americans that are in prisons getting ready to get out. To have some kind of program to ease them back on the streets. Give them a place to stay until they’re able to find a job, or some kind of training. Instead of just taking them out of the prison and throwing them right back on the streets, right back where they came from. I just don’t see where that helps at all.

 

Theme 6: The City Lifestyle and Peer Influences

            Peer norms were seen as an important influence on risk behavior for Native Americans. Several participants described the apparent incompatibility of the ‘city lifestyle’ with upbringing on the reservation or in areas where individuals were immersed in their culture. One participant described the effect of new peers on her siblings’ alcohol consumption when they moved to Baltimore City from Robeson County, North Carolina.

Well, you do whatever you see somebody else do. When I was a child growing up back home, you never seen no drinking in the house, I mean there were occasions when you’d see people drink alcohol… But my two brothers came up here and they weren’t up here 3 months before, every weekend they were in the bar getting drunk. When you move, you go in with your culture, whatever they’re doing around you that’s what you’re going to do… I was amazed.

 

            The difficulty of reconciling the ‘city lifestyle’ with Native American culture and tradition was seen as an underlying factor fueling health and social problems. The following exchange between focus group participants illustrates the effects of the city for Native Americans who come into a new urban environment without an established Native American cultural presence, contrasted with experiences on the reservation where they were surrounded by their own culture.

Speaker 1:              It’s hard [for Native Americans in the city]. It’s a fast movement, and it’s a fast pace —

 

Speaker 2:              — It’s a big difference [from the reservation] —

 

Speaker 3:              — It’s a huge difference, you’ve got people all around you when you’re used to just your family, people you know. Here you see strangers.

 

When participants who relocated to Baltimore were asked why they decided to move to the city, the most common response was that they came to find work. While some participants acknowledged that Baltimore continues to have more ample economic opportunities than where they had come from, others expressed disappointment with the experience – both for leaving behind family, friends, and familiar surroundings, and because relocation to the city did not offer a real escape from destitute conditions, only changed their context from a rural to an urban one.

Theme 7: Community Disintegration

            The fragmentation of the Native American community was a recurring theme in the focus groups, and was seen as intricately linked to the problems facing the population. Having a strong community orientation and cultural frame-of-reference were believed to be key protective and resilience-building factors which were in a state of perpetual jeopardy for Native Americans in Baltimore. Members of the target population and the business owners and professionals alike described the difficulty of maintaining cohesion among Baltimore’s Native Americans. Some participants even questioned the existence of a viable Native American community, comparing the close-knit communities of the 1970’s and 1980’s to the current situation of collapsed community support systems, a vacuum of leadership, and widespread estrangement from Native American cultural values, traditions, and history.

We don’t have Indian communities like we did in the ‘70s and ‘80s. Everything’s mixed all around now.

 

They used to call it the Lumbee Reservation: From Central Avenue to Patterson Park, along Baltimore Street. And from Baltimore, north over to McEldery Street. And south was from Baltimore to Fleet Street. All that was Indian. More Indian than anything else. You might find old Polish people or something, but it was mostly Indians.

 

We’ve got the so-called Indian community. But there are many other people that live in it as we do. I mean, it’s scattered now. Back in the fifties, within like four or five blocks, most of the people there were the Indians from Robeson County. But now, they [Native Americans] are in the counties, the surrounding counties…You don’t find the Indian community like you used to.

 

            Some participants described feelings of collective disempowerment due to their small constituency (both nationally, but especially in the local context) and tears in the cultural fabric of the community. While participants throughout the focus groups conveyed the deteriorating status of Native Americans in Baltimore as a unified community, many also expressed the desire for reestablishing a strong community. These participants noted that approaches to prevention for HIV, hepatitis, and substance abuse should be sustained efforts that try to organize and rebuild some of the support systems inherent to thriving communities that have been lost in recent decades. Participants stressed the value of bringing different Native Americans together towards common goals.

Sometimes we need to look outside of the box. How can we get things working? What can you do? As a community – What can we do?

 

That’s what we need up here in Maryland. Facilities for Native Americans, to get the race together. Learn about their heritage and all that stuff. That’s what we really need.

 

Others, however, described how differences based on tribal origin, socioeconomic standing, and religious denomination further contributed to deep divisions in this small population. In this sense, the attitudes and actions of some Native Americans in Baltimore, particularly in the misappropriation of available resources to only select groups of people, were seen as major obstacles to overcome in the drive towards a sustainable and supportive community which promotes healthy behaviors and help-seeking norms among its members.

Our race of people are like crickets. You put crickets in a bowl, you got one trying to get to the top, the other one’s going to pull him back down before he gets out. And so that’s mainly the way our race of people is. They don’t want to see the other ones get ahead…

 

Individuals also described a lack of culturally-specific programs which address the needs of the Native American population. Many expressed the view that they have nowhere to go as a people, and that the services which are available are at times simultaneously difficult to access and viewed as unacceptable or inappropriate (that is, incompatible with Native American culture). Participants stressed the value of sensitive health providers that are respectful and cognizant of the difficulties and struggles of Native Americans in poverty, criticizing ‘assembly line’ style health services as impersonal and discouraging of help-seeking.

INTERCEPT SURVEYS

            Table 1 shows the percentage of respondents reporting awareness of prevention and treatment services for substance abuse, HIV/AIDS, and hepatitis, along with the percentage indicating services were not effective (a questioned asked only to those who were aware of services). Except in the case of HIV/AIDS, respondents were less aware of prevention services than they were of treatment services. Perceived effectiveness of prevention services was lower than that of treatment services for substance abuse and hepatitis. While awareness of services was low across all domains, the most striking results are those for hepatitis. Nearly 70% of those surveyed indicated they were not aware of hepatitis prevention or treatment services. The greatest discrepancy between prevention and treatment occurred for substance abuse, with significantly lower levels of awareness and perceived effectiveness of prevention as compared to treatment. Limited awareness of services or a low perceived effectiveness for available services is a concern, as this may have an adverse effect on service utilization and willingness to seek care.

<TABLE 1 HERE>

 

            Nearly 60% of respondents indicated that they were not satisfied with the services in their community. In the open-ended section where respondents were asked to identify the biggest issues in their community, over 45% wrote in substance abuse-related material. The most prevalent categories of responses are provided in Table 2, along with the percentage of those indicating the particular concern. Health-related concerns were the most prevalent, though these open-ended responses may have been influenced by the orientation of the survey towards health. Due to the open-ended nature of this item, even small percentages indicate important patterns.

<TABLE 2 HERE>

            The sheer number that indicated substance abuse as a major issue reflects the pervasiveness of the drug problem in Baltimore. Following healthcare-related issues, social welfare/poverty concerns (such as housing, employment, and education) represent the next greatest area of need, with crime-related issues also frequently mentioned. The issues of concern indicated by respondents are not exclusive, nor do they occur within a vacuum of one another. Rather, they are all interrelated and represent the range of intersecting factors which contribute to and exacerbate the unmet needs of the population.

            Bivariate analysis revealed some patterns in awareness and perceived effectiveness of services based on respondent’s sex and identification as Native American (Table 3). Significantly more women viewed substance abuse treatment as not effective. Significantly more Native Americans viewed HIV prevention, hepatitis prevention, and hepatitis treatment as not effective. Native Americans were also less aware of hepatitis treatment in their community compared to non-Native Americans.

<TABLE 3 HERE>

DISCUSSION

 

            Native Americans in Baltimore represent a group whose health needs are not addressed by the service system for Native Americans in the United States. Specifically, most are not eligible for specialized health or social services for two reasons: 1) They live in an urban, off-reservation area, and 2) Many are from a tribe that is not federally recognized, and whose membership is thus not eligible for federal services. Another issue that compounds this situation is the inescapable fact that the Native American populations in Baltimore and Maryland are comparatively small. Nevertheless, as the original people of the United States, they are as deserving of treatment and prevention services as any other minority group. Furthermore, through various treaties with the United States government, they were guaranteed health services in exchange for their land.

            The need for these health services is vital. The Native American population in many urban areas, and especially in Baltimore, faces a number of challenges which may increase risk for HIV/AIDS. Risk behaviors such as injection drug use and having multiple sex partners exist within the context of challenges such as widespread poverty and the collapse of traditional culture and support systems. Thus, our findings suggest that Native Americans in Baltimore are in need of specialized prevention services for HIV/AIDS, substance abuse, and hepatitis. The possible reasons for undercounting HIV/AIDS cases among Native Americans are varied and include: 1) racial misclassification by health officials, agencies, and interviewers, especially for people of mixed race; 2) hesitation to identify as Native American due to fears of discrimination and the stigma associated with HIV/AIDS and socially unacceptable behavior; 3) hesitation to get tested for HIV/AIDS (or seek medical services in general) due to shame, stigma, or pride; 4) absence of, or lack of access to medical care/testing services; and 5) lack of awareness regarding free testing sites.

            When medical services are available, there are several barriers that can interfere with service delivery. Significant sociocultural issues keep Native Americans from getting tested or seeking care, and in communities that are often small and close-knit, stigma and (real or perceived) lack of confidentiality prevail. While many of our participants stressed the high need for services for Native Americans in the community, strong resistance to seeking any kind of care was a recurring idea in focus group discussions. The rationale of this contrast comes into focus only when viewed against the backdrop of a long history of maltreatment and neglect of Native American people. After generations of discrimination and acculturation, many Native Americans officially self-identify as White or Hispanic, or are misclassified as such by providers who make decisions based solely on appearances or names. Garret and Menke (2001a; 2001b) show that Maryland has one of the worst records of all states for misclassifying Native Americans on Medicare and death certificates. Many other factors contribute to lower utilization of mental and behavioral health services. The combination of limited access to healthcare services, widespread absence of health insurance, values of personal self-reliance, and unwillingness to seek assistance for stigma-laden, behaviorally-driven diseases presents unique and complex challenges for engaging at-risk populations at any point in the service continuum.

            However, Native American cultural values can be viewed as having inherent protective properties from the development of health risk behavior (Coyhis, 1999). Specifically, traditional Native American belief systems focus on relationships between the individual, family, tribe (community), and physical environment (Fixico, 2003). Many Native American cultures emphasize the importance of place, respect for elders, and the concept of community. This traditional worldview can be an important asset to community-building and facilitating a sense of participation and cultural identification among Native Americans. However, the fragmentation and loss of cohesion within the Native American population in Baltimore has inoculated many from this protection, rendering it stunted. Our respondents, both in the focus groups and health surveys, voiced unanimous concern over the lack of culturally competent delivery of local HIV/AIDS or hepatitis prevention programming. Underlying cultural competence is the conviction that services tailored to culture would be more inviting, would encourage minorities to get treatment and participate in prevention, and would improve their outcomes. Cultural competence represents a fundamental shift in ethnic and race relations (Sue, Kurasaki, & Srinivasan, 1998). Culturally competent service delivery provides a self-evident rationale for receiving prevention services that support urban Native Americans within their contemporary, non-reservation lives.

            The project used a community-based participatory research (CBPR) model, which is an active process engaging both the researcher and the community in a common goal that contends that the people will benefit from the research conducted in their communities (Davis and Keemer, 2002). In the current project, local interest in partnering would not have occurred if the Native American community perceived that the researchers: a) thought that Indian communities were at higher risk than elsewhere in the US; b) had a paternalistic agenda; c) were acting on a stereotypical perception of an Indian community; or d) valued research data more than preventive human services.

            Data from our needs assessment was instrumental in the development of a culturally competent substance abuse, HIV, and hepatitis prevention program which is currently being implemented. This intervention was designed to deliver prevention information within a framework of reacquainting participants with Native American cultures and history. Traditional Native American concepts such as holistic health and the medicine wheel are used to highlight relationships between the community, individual behavior, and risk for HIV infection. We have overcome the challenges of CBPR described by Caldwell et al. (2005), Lindenberg et al. (2001), and Davis and Reid (1999) by: 1) Building research-community partnerships; 2) Implementing culturally relevant and acceptable interventions; 3) Developing a diverse, cohesive, and committed team that is both community and research based; and 4) Involving representatives of the community in every stage of the process.

Limitations

            Several limitations of the study should be noted. One obvious limitation is the use of non-random sampling. Random participant sampling was not feasible for this study due to the fragmented and dispersed nature of the population. Since focus group participants from the target population had some degree of contact with the service system, it is unknown whether their views are representative of those Native Americans who are more isolated. Given the unique history and characteristics of the Native American population in Baltimore, the results of this study are likely not generalizable to Native Americans in other urban areas. Yet, with these limitations in mind, the context-specific nature of this study is arguably one of its key strengths. The use of a multi-pronged participatory research model with multiple key informants and partner institutions helped to establish the legitimacy of the project in the eyes of the community. This approach was also very useful in accessing segments of the community which would have otherwise been hidden. Because Native Americans are among the smallest minority groups in Baltimore, they have received little attention from researchers and service providers. The results of this study confirm that HIV risk can have complex dimensions for small minority populations. Research on the strengths, challenges, and needs of distinctive target populations is of vital importance in developing services which are grounded within the local context and culturally appropriate, inviting, and responsive.

REFERENCES

 

Baltimore Commission on HIV/AIDS Treatment and Prevention. (2005). HIV/AIDS in Baltimore City: An ongoing emergency. Interim Report. Accessed on July 12, 2006 at http://www.baltimorecitycouncil.com/2005_HIVCommission_Report.pdf

Bertolli, J., McNaghten, A. D., Campsmith, M., Lee, L. M., Leman, R., Bryan, R. T., & Beuhler, J. W. (2004). Surveillance systems monitoring HIV/AIDS and HIV risk behaviors among American Indians and Alaska Natives. AIDS Education and Prevention, 16(3), 218-237.

Centers for Disease Control and Prevention [CDC]. (2006a). HIV/AIDS among American Indians and Alaska Natives. CDC HIV/AIDS Factsheet. Accessed September, 12, 2006 at http://www.cdc.gov/hiv/resources/factsheets/aian.htm

Centers for Disease Control and Prevention [CDC]. (2006b). HIV/AIDS Surveillance Report, 2005. Vol. 17. Atlanta: U.S. Department of Health and Human Services.

Caldwell, J. Y., Davis, J. D., Du Bois, B., Echo-Hawk, H., Erickson, J. S., Turner Goins, R., et al. (2005). Culturally competent research with American Indians and Alaska Natives: Findings and recommendations of the first symposium of the work group on American Indian research and program evaluation methodology. American Indian & Alaska Native Mental Health Research, 12(1), 1-21.

Coyhis, D. (1999). Understanding Native American Culture. Colorado Springs, CO: Coyhis Publishing.

Davis, J.D., & Keemer, K. (2002). A brief history of and future considerations for research in Native American and Alaska Native communities. In: Davis, J.D., Erickson, J.S., Johnson, S.R., Marshall, C.A., Running Wolf, P., & Santiago, R. L. (Eds.) Work Group on Native American Research and Program Evaluation Methodology (AIRPEM), Symposium on Research and Evaluation Methodology: Lifespan Issues Related to Native Americans/Alaska Natives with Disabilities. Flagstaff: Northern Arizona University, Institute for Human Development, Arizona University Center on Disabilities, Native American Rehabilitation Research and Training Center (pp. 9-18).

Davis, S. M., & Reid, R. (1999). Practicing participatory research in American Indian communities. American Journal of Clinical Nutrition, 69(supp), 755S-759S.

Federal Register (July 12, 2002). Indian entities recognized and eligible to receive services from the United States Bureau of Indian Affairs. Federal Register, 67(134), 46327-46333.

Fixico, D. L. (2003). The American Indian mind in a linear world. New York, NY: Routledge.

Garrett, M. D., & Menke, K. A. (2001a). Indians no more: Inconsistent classification of American Indians and Alaska Natives in Medicare. National Indian Council on Aging Monograph, 2(2), 1-10.

Garrett, M. D., & Menke, K. A. (2001b). The continued disappearance of American Indians and Alaska Natives. National Indian Council on Aging Monograph, 4(1), 66-75.

Hirschfelder, A., & Montano, M. (1993). The Native American almanac. New Jersey: Prentice Hall.

Jones, D. S. (2006). The persistence of American Indian health disparities. American Journal of Public Health, 96(12), 2122-2134.

Lindenberg, C. S., Solorzano, R. M., Vilaro, F. M., & Westbrook, L. O. (2001). Challenges and strategies for conducting intervention research with culturally diverse populations. Journal of Transcultural Nursing, 12(2), 132-139.

Maryland Alcohol and Drug Abuse Administration [MADAA] (2005). Outlook and outcomes: 2005 annual report. Maryland Department of Health and Mental Hygiene.

Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis, 2nd Edition. Thousand Oaks, California: Sage.

Ogunwole, S. (2006). We the people: American Indians and Alaska Natives in the United States. Census 2000 Special Reports (CENSR-28). U.S. Department of Commerce, Economics and Statistics Administration.

Snipp, C. M. (1992). Sociological perspectives on American Indians. Annual Review of Sociology, 18, 351-371.

Sue, S., Kurasaki, K.S., & Srinivasan, S. (1998).  Ethnicity, gender, and cross-cultural issues in research. In P.C. Kendall, J.N. Butcher, & G.N. Holmbeck (Eds.) Handbook of research methods in clinical psychology (2nd ed., pp. 51-71). New York, NY: Wiley.

U.S. Census Bureau. (2005). 2005 American Community Survey data profiles analysis tables (analyzed for Maryland, Baltimore Metropolitan Statistical Area, and Baltimore City). Accessed November 29, 2006 at http://factfinder.census.gov/servlet/ADPGeoSearchByListServlet?ds_name=ACS_2005_EST_G00_&_lang=en&_ts=186499181157

Vernon, I., & Jumper-Thurman, P. (2005). The changing face of HIV/AIDS among Native populations. Journal of Psychoactive Drugs, 37(3), 247-255.

 


 

 

 

 

 

Table 1. Awareness and perceived effectiveness of services among survey respondents.

 

Prevention Services

Aware of services (%)

Thought services effective (%) 1

Substance Abuse

40.8  [n=98]

44.4

HIV/AIDS

51.9  [n=54]

77.8

Hepatitis

30.6  [n=98]

61.1

Treatment Services

Aware of services (%)

Thought services effective (%) 1

Substance Abuse

68.4  [n=98]

75.0

HIV/AIDS

48.1  [n=54]

80.0

Hepatitis

33.0  [n=54]

71.4

1 Perceived effectiveness was asked only of those who were aware of services in a given area.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Table 2. Identification of greatest issues/concerns1 in the community (n=99).

Issue

Percent Mentioning

Issue

Percent Mentioning

Health

 

 

Crime and Safety

 

 

Healthcare2

17.2

 

Crime (general)

8.1

 

Dental Services

4.0

 

Violence

2.0

 

HIV/AIDS

11.1

 

Security/Safety

3.0

 

Hepatitis

2.0

 

 

 

 

Substance abuse

45.5

 

 

 

 

 

 

 

 

 

 

Poverty

 

 

Other

 

 

Homeless services

5.1

 

Prostitution

4.0

 

Hunger

1.0

 

Prevention

2.0

 

Housing

13.1

 

Education

5.1

 

Employment

8.1

 

Not Enough Services

3.0

 

 

1 Participants could identify multiple issues.

2 The healthcare category indicates mention of health or healthcare as a general concern, and is conceptually separate from the other items in the health category.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Table 3. Significant bivariate associations for awareness and perceived effectiveness of services by sex and Native American identification.

 

Variable 1

Phi Statistic

Valid N

Sex û Substance abuse treatment effective?

 

-.269*

56

Native American û HIV prevention effective?

 

-.378+

27

Native American û hepatitis prevention effective?

 

-.327*

36

Native American û hepatitis treatment effective?

 

-.767***

21

Native American û aware of hepatitis treatment?

 

-.301*

50

+ p=.050, * p<.05, *** p<.001.

                           1All variables are dichotomous (e.g. Native American vs. non-Native American; participant perceives services as effective vs. participant perceives services as not effective). Sex was coded as 0=male, 1=female. All other variables were coded as 0=no, 1=yes. Perceived effectiveness was asked only of those who were aware of services in a given area.