HIV/AIDS, Substance
Abuse, and Hepatitis Prevention Needs of Native Americans Living in
Jeannette L. Johnson, Ph.D.
Friends Research Institute
410-837-3977 x255
jjohnson@frisrc.org
Jan Gryczynski, M.A.
Friends Research Institute
410-837-3977 x246
Shelly A. Wiechelt, Ph.D.
University of
Department of Social Work
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Please do not cite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
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
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
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
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
FOCUS GROUPS
Subjects
A total
of six focus groups were conducted with male (n=16) and female (n=23) adults
living in the
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
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
Infection with the
hepatitis C virus (HCV) has become a growing problem among drug users in
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
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
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
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
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
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
Cyclical migration between
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
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
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
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
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
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
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
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
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
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
The
need for these health services is vital. The Native American population in many
urban areas, and especially in
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
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
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
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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.