HUS312

O R I G I N A L P A P E R

A Mental Health Needs Assessment of Urban American Indian Youth and Families

Amy E. West • Ellen Williams • Eli Suzukovich •

Kathlene Strangeman • Douglas Novins

Published online: 5 October 2011

� Society for Community Research and Action 2011

Abstract American Indian (AI) youth experience sig-

nificant mental health disparities. The majority of AI youth

live in urban areas, yet urban AI youth are underserved and

unstudied. This manuscript describes a qualitative study of

community mental health needs in an urban population of

AI youth, conducted as part of the planning process for a

system of care (SOC). Participants included 107 urban AI

youth and families that participated in one of 16 focus

groups assessing mental health needs and services. Forty-

one percent of participants were youth or young adults.

Data were coded and analyzed using qualitative software

and then further analyzed and interpreted in partnership

with a community research workgroup. Results indicated

various community characteristics, mental health and

wellness needs, and service system needs relevant to

developing a system of care in this community. Key

community, cultural, and social processes also emerged,

reinforcing the importance of broader system changes to

promote a sustainable SOC. These systems/policy changes

are reviewed in the context of previous literature proposing

necessary systems change to support behavioral health care

in AI communities as well as to ensure that SOC imple-

mentation is consistent with core values and philosophy

across all communities.

Keywords American Indian � Urban � Children and adolescents � Mental health � System of care � Qualitative

Introduction

American Indian (AI) 1

youth are among the most vulner-

able children and adolescents in the United States with

rates of poverty, exposure to violence, mental health issues,

and suicide/death rates that are staggering (Sarche and

Spicer 2008; U.S. DHHS 2001). Extant research indicates

that AIs are at higher risk than any other ethnic group for

mental health problems (Costello et al. 1998; Moncher

et al. 1997). AI youth experience exceedingly high rates of

depression, anxiety, trauma, substance abuse, and suicide

(Stiffman et al. 2003) and are at high risk for a variety of

poor outcomes, including teen pregnancy, school drop out,

out of home placement, and accidental death (Witko 2006).

Statistics illuminate tragic and disturbing behavioral and

mental health disparities experienced by AIs, and espe-

cially AI youth. These disparities have emerged in the

context of social, political, cultural, and historical dynam-

ics since colonization. AI people were subject to one of the

most significant and systematic genocides in world history

(D’Andrea 1994), and have endured prolonged exploita-

tion, unimaginable loss, and profound suffering during the

past 500 years. A legacy of trauma, poverty, disenfran-

chisement, discrimination, and failed US policies aimed at

annihilation and then assimilation is compounded by cul-

tural differences compared to mainstream Western culture,

a lack of adequate epidemiological and health-related data,

and competition for scarce resources, which together

A. E. West (&) � E. Williams � E. Suzukovich Institute for Juvenile Research, Department of Psychiatry,

University of Illinois at Chicago, 1747 W. Roosevelt Rd.

Rm 155, Chicago, IL 60608, USA

e-mail: [email protected]

K. Strangeman

American Indian Center of Chicago, Chicago, IL, USA

D. Novins

University of Colorado Denver, Denver, CO, USA

1 American Indian, or AI, is used throughout this manuscript to refer

to people of American Indian or Alaska Native descent.

123

Am J Community Psychol (2012) 49:441–453

DOI 10.1007/s10464-011-9474-6

contribute to the current physical, behavioral and mental

health crisis for AIs. While the majority of AI youth now

live in urban settings (Witko 2006), urban AI youth rep-

resent an almost completely unstudied, and essentially

invisible group of vulnerable children and adolescents with

regard to mental health (or any other) issues. Substantial

need exists for research examining the unique experience

of urban AI youth in order to inform models of mental

health promotion and intervention development.

The system of care (SOC) philosophy for mental health

service delivery proposes a coordinated network of com-

munity-based services and supports that are organized to

meet the challenges of youth with serious mental health

needs and their families. In recognition of the unique and

specific needs of AI communities in planning to implement

SOCs, the Substance Abuse and Mental Health Services

Administration (SAMHSA) launched the Circles of Care

(COC) grant program in 1998. This program provides

resources for community-based infrastructure development

and planning for SOCs in AI communities. The commu-

nity-based focus of COC is particularly important as pre-

vious research in AI communities has demonstrated that

methodological approaches must be culturally-driven and

leverage AI cultural strengths, belief systems, and

competencies (Poupart et al. 2009). Such research is best

pursued when communities and researchers form authentic

partnerships, which are embodied in the principles and

practice of community-based participatory research

(CBPR) (Green and Mercer 2001; Israel et al. 1998).

Authentic partnerships are ones in which partners exhibit

respect, collaboration, equal authority in decision-making,

and open communication. Founded in CBPR principles, the

purpose of a COC grant is to provide tribal and urban AI

communities with resources to design holistic, community-

based systems of care to support mental health and well-

ness for their youth and families.

The first step in developing a system of care is to assess

the needs of the specific community that the SOC is

expected to serve. This manuscript describes a qualitative

study of community mental health and wellness needs in an

urban population of AI youth that was conducted as part of

a COC grant awarded to the American Indian Center of

Chicago (AIC). The AIC is the oldest urban Indian center

in the country and the primary community agency serving

the large Chicago AI community. The current study had the

following primary objectives: (1) to actively involve the AI

community in Chicago in a community-based participatory

research project, and (2) to determine the mental health and

service needs of AI youth and families in the Chicago

community in order to develop culturally-appropriate ser-

vices to meet these needs. The purpose of collecting these

data was to inform the conceptualization, development, and

implementation of an SOC for this community. Key study

findings indicated a range of important community needs,

but also highlighted various systemic challenges and

broader social and conceptual shifts that may need to occur

in SOC policy in order to develop a successful SOC in this

community. Therefore, a third objective of this study

became to (3) recognize community, cultural, and social

processes (e.g. historical trauma, political divides, stigma

and distrust, cultural relevance, and community readiness

for change) that are critical in developing an effective

system of care in this community, as well as indicate

broader systemic changes needed to support diverse fami-

lies and communities.

The Need for Systems of Care in Urban AI

Communities

According to the U.S. Census Bureau (2008), there are 4.5

million people who identify themselves as AI in the United

States, of which approximately 30% are under the age of

18. There are over 500 federally recognized tribes and over

100 state recognized tribes, each of which has unique

social and cultural systems. In addition, approximately

67% of the AI population in the United States lives in

urban areas rather than on reservations (U.S. Census

Bureau 2000). Chicago has one of the largest urban AI

populations: 20,898 in Cook County and up to 50,000 in

the larger metropolitan area (U.S. Census Bureau 2000).

Mental Health Disparities in American Indian Youth

AIs are at higher risk than any other cultural group for

mental illness and AI youth may be at high risk for various

psychiatric disorders, including substance abuse, depres-

sion, anxiety, attention deficit hyperactivity disorder

(ADHD), conduct disorder, and suicide (Beals et al. 1997,

2005; Costello et al. 1997, 1998; Moncher et al. 1997;

Whitbeck et al. 2008; Zvolensky et al. 2001). Evidence

suggests a rapid increase in the prevalence of psychiatric

disorders over the course of adolescence in AI youth.

Whitbeck et al. (2008) reported an increase in the preva-

lence of a single lifetime disorder from 25.6% at ages 10–12

to 44.8% at ages 13–15 in their longitudinal study of AI

youth on four reservations. In addition, AI people have the

highest suicide rates of any ethnic group in the United

States; data from the Indian Health Service (2003) indicate

that suicide is the 2nd leading cause of death for AI youth

aged 15–24 and is 3.5 times higher than the national aver-

age. As a whole, AI youth are more likely to: die before they

reach adulthood, die an accidental death, die as the result of

homicide, commit suicide, be in court-ordered foster care,

be in federal custody, experience violent victimization, and

drop out of school when compared to youth in any other

ethnic group (Sarche and Spicer 2008; Witko 2006).

442 Am J Community Psychol (2012) 49:441–453

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American Indian Youth in Urban Communities

Consistent with efforts to assimilate AIs into mainstream

society, federal legislation was enacted in the 1950s and 60s

to relocate AIs to urban settings, where inter-tribal diversity

and integration would dilute AI culture and force assimi-

lation to the mainstream. AIs were promised economic

opportunity and job training, which stimulated a migration

of AIs to cities. However, once these AIs arrived they were

met with little governmental support, leading to unem-

ployment, poverty, and social and cultural isolation (Witko

2006). Separated from their tribal homeland, urban AI

families found themselves facing these problems, including

oppression and racism, with limited coping skills, no eco-

nomic security, and the absence of the tight-knit social

support of their tribal communities (Clark and Witko 2006).

These factors contributed to feelings of alienation, disem-

powerment, and hopelessness (Clark and Witko 2006).

We know very little regarding the current psychosocial

contexts of urban AI communities. The few studies spe-

cifically focused on urban AIs have found high rates of

substance abuse, depression, anxiety, suicidality, and

trauma, compounded by poverty, unemployment, family

and community violence, and low rates of service utiliza-

tion (Evaneshko 1999). Indeed, a recent report on urban AI

health documented that urban AIs experience extreme

poverty, demonstrate significant health and mental health

disparities, face numerous challenges trying to access

quality health care services, and are largely ignored by

the American health care system (UIHC 2007). AI youth in

urban settings, who are likely the children or grandchildren

of those relocated, may be affected by historical trauma

and accumulated stress, and they may experience loss of

traditional cultural heritage, stress over negotiating their

ethnic and cultural identity, racism, and oppression. They

must also deal with the multiple stresses of urban living,

including their disadvantaged economic status. Data from

the Youth Risk Behavior Survey (CDC 1996) indicate that

urban AI youth are more likely to engage in a variety of

high risk behaviors than their European American coun-

terparts, including illegal drug use, early initiation of sex-

ual intercourse, use of tobacco, alcohol, and marijuana,

carrying weapons, physical fights at school, and school

avoidance (Rutman et al. 2008).

The Chicago American Indian Community

Although there is limited epidemiological data specific to

Chicago, previous efforts suggest that this AI community

suffers from the same problems (disadvantaged

socioeconomic status, high-risk status of youth, and

behavioral and mental health disparities) that have been

documented in other urban AI communities (UIHI 2009;

U.S. Census Bureau 2008). A general health needs

assessment conducted in Chicago by the Urban Indian

Health Institute/Seattle Indian Health Board (2009) indi-

cated that substance abuse, anxiety/stress, depression, sui-

cide, financial problems, unemployment, accidents, teen

pregnancy, community violence, domestic violence, hous-

ing issues, legal problems, and insurance and health care

access issues were significant problems, and concluded that

the Chicago community had substantial health needs as

well as social and economic factors that put community

members at risk for not receiving needed services. The

study described in this manuscript comprised a qualitative

needs assessment study to further assess the specific needs

of youth in the Chicago AI community in order to plan for

an SOC. In addition, our CBPR and qualitative methods

facilitated the examination of important community, cul-

tural, and social processes that may affect the development

and implementation of an SOC in urban AI communities

and have implications for broader system changes needed

to sustain an effective SOC in other communities.

Methods

This study was conducted using a CBPR approach and

utilized a culturally-informed methodology. To develop

our focus group guide, we adapted the Community Story

Framework, a culturally-informed qualitative methodology

developed for use with AI communities (The Four Worlds

Centre for Development Learning 2000). The Community

Story Framework was developed as a tool for participatory

analysis in AI communities and brings people together in

small groups to discuss important issues in community life,

such as the well-being of youth and families, in the context

of such domains as family life, social life, emotional life,

and cultural/spiritual life. Our structured focus group guide

included additional questions assessing three main

domains: (1) the mental health/positive development needs

of urban AI youth in Chicago, (2) the available support

systems, mental health services, and service utilization, and

(3) potential cultural and historical parameters that might

drive the development of innovative service approaches to

meet community needs. Sample questions from the focus

group guide include: ‘‘What are some of the problems that

youth in our community face today?’’, ‘‘What do you hear

about mental health services in our community?’’, and

‘‘What would life be like for youth in a healthy family and

Am J Community Psychol (2012) 49:441–453 443

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community?’’ A community workgroup actively partici-

pated in the development of the focus group guide.

Participants for this study were recruited through com-

munity announcements, networking at events and pow-

wows, posted flyers, and word-of-mouth. Sixteen focus

groups were completed with a total of 107 youth and

families participating. Informed consent, parental permis-

sion for youth under 18, and youth assent was obtained

prior to participation. One hundred percent of participants

identified as AI. Forty-one percent of participants were

under the age of 25, and 14% were under age 18. Eighteen

percent of participants were community elders (a commu-

nity elder is generally defined as a senior community

member with cultural wisdom and a commitment to shar-

ing and teaching). Sixty-six percent of participants were

female. Each group had 6-12 participants and lasted

2 hours. Groups were organized by age group (e.g., teens,

young adults, adults, elders) and generally included a mix

of genders. Groups were facilitated by two of the authors of

this manuscript (AW and KS), who are in leadership roles

on the COC grant and have working relationships with the

AIC (one is an AIC staff member, the other is on the AIC

Board) and experience working in this community. The

structure of the groups was standardized; facilitators asked

questions in the same manner and sequence across all 16

groups. The research protocol was approved by the Uni-

versity of Illinois at Chicago IRB.

Each focus group was audio recorded and professionally

transcribed. A coding structure was developed based on

eight core domains of interest that represented areas of

interest for analysis. The eight codes were: (1) community

characteristics; (2) community demographics; (3) indica-

tors of health and mental health; (4) risk and protective

factors; (5) definitions of mental illness; (6) service system

needs; (7) barriers to accessing services; and (8) accept-

ability of existing services. Two authors (EW and ES), who

also have relationships with AIC and are from the Chicago

AI community, served as coders on the project. They

established reliability by double coding three transcripts,

and completed the analysis of the transcripts using AtlasTi

software. Data analysis involved coding text, producing

text reports by code, and identifying and counting themes

from text through an iterative process of reviewing code

reports. After initial coding by the research team, code

reports were reviewed by our community research work-

group, a committee of community members who volun-

teered to assist with study design and data analyses.

Community workgroup members reviewed the code reports

and discussed findings with project staff in bi-weekly

committee meetings. This process served to validate coding

completed by initial coders as well as facilitating discus-

sion to ensure that codes were adequately discussed in

depth and considered in context when interpreting themes.

Results

Data were coded to determine the primary themes emerg-

ing for each of the codes. The themes for each code are

listed in Table 1. While all identified themes are listed in

the table, results discussed below were limited to those that

may be most pertinent to developing SOC components.

These themes were identified by the research team and

agreed upon by the community research committee during

analysis and consensus meetings.

Community Characteristics

The first two codes were developed to assess community

demographics as well as specific community, cultural, or

social factors that characterize the Chicago AI community.

Specifically, the community characteristics code was used

to capture characteristics such as historical influences,

identity issues, politics, relocation effects, dynamics in

community, aspects of urban AI culture, and traditions/

practices in community. Participants reported (1) increased

dispersion of the AI population across the Chicago metro-

politan area over the past 20–30 years. Gentrification has

forced the AI community out of its original geographical

location and families are now located across the expansive

city and suburbs. Participants associated this phenomenon

with a perceived invisibility of AI people in the larger

Chicago community as well as with other aspects of cultural

dispersion, such as mixed heritage due to inter-race coupling,

decreased knowledge of language and participation in cul-

tural traditions, and the stresses of trying to ‘‘live between

two worlds.’’ For example, one participant noted the effect of

dispersion and integration within the urban community as

contributing to a potential loss of cultural knowledge:

I believe there needs to be some working on that

particular issue in that living on the reservation and

then leaving as a product of Indian relocation- the

only way I would get a lot of the cultural things was

to go back to my reservation and spend summers

there. A lot of things became a void and I had to

relearn those as an adult because I found importance

in those things. And so living in an urban environ-

ment you lose those things, unless there is a concerted

effort to take that cultural information and impart that

to the youth because they are living in their own

world. They go play basketball after school and they

get integrated with other races and stuff, there is a

pan racial, ethnic thing in an urban area.

Second, participants highlighted (2) a sense of division in

the AI community. They noted physical dispersion, inter-

tribal diversity, tensions between community leaders and

organizations, and the diminished interdependence that

444 Am J Community Psychol (2012) 49:441–453

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Table 1 Needs assessment themes

General themes Themes from youth groups

Community

characteristics

Historic nostalgia

Dispersion of population

Division within community

Importance of tribal identity

Need for community cohesion

Importance of cultural practice

Community demographics Violence

Financial instability

Single and teen parenting

Alcohol/drug use

Invisibility as ethnic population

Gangs

Violence

Peer pressure

Mental health indicators Positive:

Healthy lifestyle

Spiritual strength and

practice

Balance

Coping skills

Happiness

Positive relationships

Negative:

Alcohol and drug use

Violence

Gangs

Negative lifestyle

behavior

Stress and anxiety

Poverty

Positive:

Cultural and spiritual health

Connection with elders

Good relationship with school,

teachers

Negative:

Peer pressure

Lack of adult role models

Factors of risk and/or

protection

Protection:

Sense of belonging

Extended family

Extended family

Involved community

Risk:

Negative coping skills

Lack of structure and

guidance

Chronic stress

Community division

Lack of connection

Poor communication

Sense of loss

Apathy

Protection:

Positive reinforcement from

adults

Sense of community

Accountability from adults

Pride in culture

Risk:

Poor communication,

gossip

Lack of accountability

from adults

Hopelessness, alienation

Lack of support and trust

Definitions of mental

illness

Achieving balance Balance

Stigma of mental illness Lack of support and caring from adults

Need for culturally-relevant definition Alienation and isolation

Alienation from family and community Lack of expression and communication

Trauma

Service system needs Funding for programs Funding

Improvements in infrastructure Need for health services

Specific services for youth mental health Lack of support

Cultural relevance

Promotion of general wellness

Lack of education, behavioral health, and recreational

activities

Barriers to accessing

services

Poor communication/lack of knowledge Shame, embarrassment

Practical barriers Mistrust, fear

Stigma Need to be proud and strong

Lack of trust Lack of adults modeling help-seeking

Preference for community supports Lack of culturally-sensitive providers

Acceptability of existing

services

Need for perceptive clinicians Need for cultural sensitivity

A trusting clinical relationships Need for perceptive clinicians

Absence of quality services Traditional healing

Community politics

Am J Community Psychol (2012) 49:441–453 445

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once existed, as contributing to feelings of disconnection

and division between community members. One partici-

pant stated:

Well, one thing I see about a lot of Natives is that

they are separate. My tribe is this and your tribe is

this. And we talk about each other. And we don’t

really come together as Native people. If you are a

Native, you are a Native. I don’t care whether you are

from north, south, east or west, because we should

love each other being Native, Native people.

The community demographics code was used to capture

sociodemographic characteristics such as housing, employ-

ment rate, poverty, neighborhood issues, school drop-out, and

family structure. One prominent theme was (1) violence in

community, most notably violence associated with aspects of

inner city living such as gangs, drugs, and dangerous neigh-

borhoods. One participant illustrated this theme, stating:

And my big concern is, the kids in this neighborhood-

you know, we saw three shootings out here about

6 months ago. One young man died on that doorstep

over there. That makes an impact on you, you know. So

it is like gangs and drugs are eating our children up and

spitting them out and putting them into incarceration.

They do not belong there. What I see is, it takes a whole

village to raise a child. And I think we try to do that.

In addition, participants noted (2) financial instability,

including lack of employment, relying on public assistance,

housing problems, and youth having to contribute to family

finances. Finally, participants discussed the (3) challenges

related to parenting, including the prevalence of single par-

ents, extended family raising children, and teen parenting.

Mental Health and Wellness

The next set of codes was designed to capture themes

associated with conceptualizations and experience of

mental health and wellness in the AI community in Chi-

cago. First, the mental health indicators code was used to

capture indicators of community health or mental health

such as arrest rates, substance abuse, gang violence, foster

care placements, HIV, and chronic illnesses. We chose to

focus on both indicators of positive mental health in

addition to negative mental health. Indicators of positive

mental health and wellness included (1) healthy lifestyle

behaviors, such as healthy eating and youth/family par-

ticipation in sports activities and athletics; (2) spiritual

strength, which participants described as having the spiri-

tual grounding to weather life’s challenges; (3) regular

spiritual practice, which included prayer, participation in

ceremony, and teaching youth spiritual traditions; and (4)

positive and healthy coping skills. Indicators of negative

mental health noted by participants included (1) alcohol

and drug usage; (2) violence; (3) gangs; (4) unhealthy

lifestyle behaviors, such as poor diet, lack of exercise, and

mismanagement of chronic illnesses; (5) stress and anxi-

ety; and (6) the negative impact of poverty. In general,

participants noted the high prevalence of indicators of

negative mental health, such as violence (both community

violence as well as violence occurring within families),

poverty, substance abuse, and high stress levels, and the

need for more focus on promoting indicators of positive

mental health and wellness, such as using spirituality to

promote a sense of purpose and balance, the development

of good coping skills, and fostering healthy relationships.

The risk and protection codes were used to capture

community strengths (e.g. use of Native language, tradi-

tional practices, close-knit families, programs for youth,

academic achievement, positive role models) and risks (e.g.

spiritual problems, stressful life events, poverty, trauma and

historical trauma, racism). Themes emerging related to

community protective factors included: (1) the importance

of a sense of belonging—to family, to community, and to

society; (2) having a strong connection to extended family

members who provide nurturing relationships for youth; and

(3) having a supportive, involved community that prioritizes

the healthy development of youth and maintenance of

healthy families. Themes related to community risk included

(1) negative coping skills, such as alcohol and anger/

violence; (2) a lack of structure and guidance for youth;

(3) chronic stress; (4) community division; (5) a lack of

connection to community; and (5) poor communication.

Although some of these themes (e.g. negative coping skills,

stress) may appear to be individual-level risk factors, the

focus of this discussion was on how these factors were per-

vasive enough throughout community that they represented

community-level risk factors influencing overall youth and

family wellness. In general, participants noted that many of

the core aspects of protection from risk, such as a strong

sense of family and the importance of community life, exist

but are diminished by exposure to risk factors such as chronic

stressors, lack of good communication, and a sense of loss. In

particular, participants noted that compounded risk factors

contribute to a lack of sense of purpose and direction for

many community youth. One young adult stated:

I think lack of direction is always just at the root of so

many struggles with youth, period. Especially in this

community, I’ve been in this community my entire life.

And I just think maybe, for many different reasons,

family or just lack of resources, lack of a place to even

just go…But there’s no sense of direction of what a person wants to do, or where to go, or what to do with

their time constructively. I think there’s maybe not

enough encouragement. I think there are in certain

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arenas. Everyone says ‘‘go to school, go to school.’’ But

then for a lot of people, you don’t have the money to go

to school… So then what do you do then? So I think that causes a lot of despair and then you kind of give up.

The definition of mental illness code was used to

capture any discussion relevant to local definitions of

wellness, mental health, or emotional health. There was not

much explicit discussion of mental illness by participants

in this study. When asked to describe the meaning of

mental or emotional health, the predominant response was

(1) achieving balance, with the predominant description of

a lack of mental health as being out of balance. Other

discussion coded in this domain indicated (2) stigma and

distrust related to mainstream mental illness diagnoses.

Participants also emphasized a preference for (3) more

culturally-relevant definitions, such as balance and holistic

wellness. One participant illustrated this theme by stating:

People have a tendency these days to identify you by

your sicknesses, so you become a collection of sick-

nesses that people are managing…I think the idea should be that good wellness should look at sickness as

disease, but not disease as in a thing, but disease as in

disease. The disease is you have gotten out of balance.

There is something that is not making your life work

the way it should be and we are going to move you from

that uneasy place again to a healthy place.

In addition, participants tended to focus on root causes of

behavioral or emotional difficulties, such as (4) feelings of

alienation and disconnection from family and community.

Finally, (5) the experience of trauma, both individually and

collectively as a community, emerged as a major theme related

to emotional and behavioral difficulties experienced by youth.

The discussion of trauma ranged from community violence,

such as gangs and drug violence, to sexual abuse within

families, to the collective historical trauma experienced by the

urban AI community in Chicago and AI peoples as a whole.

Service Needs

The final group of codes was designed to assess perspec-

tives about the current service system and what community

members perceive to be the gaps and unmet service needs.

The first code, service system needs, was used to capture

what kinds of services are (or are not) available in the

community and to assess gaps in services, unavailability of

services or programs, and problems with available services.

Participants noted a significant need for (1) funding for

programs and (2) improvements in infrastructure. Partici-

pants described lack of funding and infrastructure chal-

lenges such as lack of staffing and/or expertise needed as

contributing to a sparse and constantly changing menu of

available health and mental health services within com-

munity. Participants also discussed (3) the need for specific

services aimed at mental and behavioral wellness for

youth; (4) the need for services that are culturally-relevant

(e.g. that incorporate traditional medicine or spiritual

practices) and based within their community; and (5) the

need for more services and programs that facilitate healthy

social interaction and promote general wellness. Speaking

specifically about what is needed in terms of services, one

participant stated:

Creating more opportunities for the healing process

and exposure to all of those things [traditional prac-

tices]. Spirituality, there’s a lot of connections with

medicine men and women in the community now.

There are more opportunities for other clinical work.

And finding a balance that works for families that is

culturally appropriate helps a lot.

The barriers to accessing services code was used to

assess any difficulties accessing current services. The themes

emerging under this code included (1) poor communication

and lack of knowledge about accessing mental and behav-

ioral health services; (2) practical barriers such as insur-

ance, financial issues, and transportation; (3) stigma related

to accessing services; and (4) impact of barriers such as lack

of trust. In particular, participants reported not accessing

services for fear of being called crazy or being the subject of

gossip, as well as having concerns about confidentiality,

especially when utilizing local community agencies where

others might see them arriving for appointments or where

other community members might be employed. Participants

also discussed not trusting non-AI practitioners or providers

not familiar with AI culture to understand their unique needs

and value systems. Finally, participants discussed (5) a

preference for utilizing community supports and family

members or peers when in distress, rather than accessing

mainstream mental health services. One participant descri-

bed this phenomenon by saying:

I think that the mental health services that we used to

have came from everybody else’s community. And if

you wanted something the chances are there was

someone else in the community you were going to

run into when you were waiting…that was going through the same thing or had the same thing and

they helped you out with it…family meant a lot more. And you had family wherever you looked. And that

was your mental health services. It was either your

peers or your age group or someone else that was

walking around the streets, just the way you were.

The final code in this group, acceptability of existing

services assessed the acceptability of existing services,

including the cultural appropriateness and quality of

Am J Community Psychol (2012) 49:441–453 447

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available services. Participants highlighted the importance of

having providers that are (1) perceptive to their unique needs;

and (2) with whom they can build a trusting relationship.

Participants agreed on (3) the general absence of quality

services available for youth and also discussed (4) the com-

munity politics (e.g. relationship dynamics and history

between community leaders and agencies) driving the utili-

zation of different programs and services within community.

Youth-Specific Findings

As 41% of the sample was under the age of 25, the findings

discussed above generally characterize the findings of youth

and young adults that were sampled in this study. However,

when youth data were analyzed separately, a few additional

youth-specific themes emerged. Youth-specific themes

included (1) developing skills to cope with stress and neg-

ative situations; and (2) the need for positive role models

within family and community. Within the community

characteristics codes, youth identified (1) tribal identity as

important because it provides a sense of community and

belonging and enhances knowledge of language and tradi-

tions. Youth also discussed (2) the interplay between com-

munity cohesion and maintaining cultural ties, while also

maintaining individual identities and being free to have their

own ideas and perspectives as an important characteristic of

community life. Finally, youth identified (3) peer pressure

as underlying many of the other community characteristics

identified, such as substance use, gangs, violence, and teen

pregnancy. Peer pressure was also a prominent theme within

the mental health and wellness codes, where it was

identified to impede wellness and healthy coping through

serving as a mechanism through which youth become

involved in abusing substances, violent behavior, and join-

ing gangs. In addition, youth participants discussed the need

for (1) role models to demonstrate healthy coping and

healthy lifestyle behaviors, and who were interested in being

involved in youth’s lives and teaching culture. Many youth

identified the importance of (2) cultural and spiritual health

and their desire to connect or re-connect with cultural and

spiritual traditions. For example, one youth stated:

Having a culture, having traditions kind of gives you,

maybe, a purpose or something, to take care of or

something to hold. And, having something like that,

you know, a form of responsibility, kind of makes

you stronger. You know, having responsibility to

carry traditions and to uphold the culture, you know,

it gives you something to do, to care about, you know

what I mean, an outlet in itself.

Finally, youth stressed the need for (3) positive reinforce-

ment from adults and teachers; (4) accountability from adults

and organizations; and (5) the need for individuals and

institutions in their lives to promote a sense of cultural pride.

All these things were identified as coping mechanisms or

buffers that would help them manage the intense risk factors

and stressors in their daily lives. Within the service needs

codes, one interesting additional theme that emerged specific

to youth responses was the barrier presented by (1) the

message that youth need to be strong and proud (particularly

males), which causes shame and embarrassment and

prevents youth from seeking help when they need it.

Community, Cultural, and Social Processes

There were several subtle yet powerful themes that emerged in

our analyses that did not fit neatly into our coding domains, or

were so consistent throughout many coding domains that they

were deemed to represent pervasive and significant processes

within community experience that may relate to youth and

family mental health and community needs. These themes

were either discussed explicitly during focus groups or

emerged through the integration of data and discussion with

community research workgroup members. They included (1)

the impact of historical trauma (i.e. the collective emotional

and psychological injury, both over the life course and across

generations, resulting from catastrophic history of genocide);

(2) political divisiveness within community and community

organizations; (3) the need for a sense of belonging; (4)

challenges in the cultural connection between youth and

adults/elders; (5) stigma about mental and behavioral health,

(6) internalized oppression (i.e. accepting the oppressor’s

perception of you), (7) strained interactions with outside

systems (e.g. public schools, health care); and (8) fear of loss of

culture and tradition. The examination of these community,

cultural, and social processes was identified to be critical in

developing meaningful, sustainable, and effective interven-

tions or systems of services to promote mental health and well-

being for urban AI youth and families in Chicago. Of these, the

most significant and overarching theme discussed by partici-

pants and by research team and workgroup members analyz-

ing data was the impact of trauma on community life in the

Chicago AI community. It was proposed that historical trauma

is a powerful psychological, social, and structural phenome-

non that contributes to community dynamics, including:

divisiveness and disconnection within community; self-

focused and parallel oppression (i.e. oppressing one’s own

people); the loss of culture through dispersion, forgetting or

assimilation; a sense of inferiority and different-ness that

separates youth from their non-AI peers and society; tension

between AI communities and outside systems; and a pervasive

sense of alienation, anxiety, and depression that characterizes

a typical trauma response. One participant stated:

There is so much grief and it is not expressed. It is

acted out. And grief sometimes turns into anger. And

448 Am J Community Psychol (2012) 49:441–453

123

then you’ve got anger, and these kids growing up

[thinking] ‘I don’t want to be around here. These

people are mad at me.’ And they [youth] don’t know

that they are not causing it.

It was also noteworthy that, although discussion often

centered on challenges, needs, and barriers, as this was an

important objective of this study, participants and work-

group members also emphasized the capacity for resiliency,

adaptation, and cultural renewal evidenced by AI peoples.

There was a sense conveyed by participants that AI cultural

strengths and resources could heal the community, shape

positive youth development, and enhance relationships

between the Chicago AI community and the broader system

if properly understood and leveraged. One participant

illustrated the importance of leveraging community

strengths, beliefs, and values to heal by saying: ‘‘And it’s the

people that will heal each other from the inside…it’s the people who will heal other people from the inside’’.

Discussion

Our discussion is organized around four prominent themes

emerging from this study that we believe are relevant to

systems change for this and other AI communities: (1) the

need to address the role of historical trauma and internalized

oppression in shaping divisions within community and

affecting a community’s readiness for change, (2) the

importance of extensive community mobilization efforts to

address community politics, factions of the community, and

organizational alliances, (3) the need to honor locally-

meaningful conceptualizations of mental health and

wellness, and (4) the need for community-based and cul-

turally-relevant clinical services and programs. We address

the broader implications of these findings in our conclusions.

Addressing Historical Trauma and Internalized

Oppression

Throughout the implementation of this study, participants

acknowledged that the collective trauma experienced by AI

people over the life course and across generations related to

genocide has contributed to the social, political, cultural,

and historical dynamics within Indian country (and

between Indian country and mainstream society) since

colonization. In addition, internalized oppression was rec-

ognized to contribute to the politics, divisions, disconnec-

tion, perceived loss of culture, invisibility and strained

interactions with outside systems. Participants in this study

perceived that historical trauma may directly relate to

community risk factors, mental health issues, environ-

mental stressors, and stigma about mental health. In

addition, participants perceived that a legacy of trauma and

oppression may contribute to the tendency for community

members to sometimes divide and work against rather than

with each other, even when shared commitment and pas-

sion is evident, or to become disconnected and burned out.

To address the impact of historical trauma, an SOC could

include education, training, and opportunities for open dia-

logue. This could take the form of outreach, trainings for

community leaders, program directors and community

members on historical trauma, its impact on AI communities

and organizations, and methods for addressing and healing

from its effects. There are national models for community

building and healing from historical trauma (for exam-

ples, see http://historicaltrauma.com/interventions.html) that

could be incorporated into the planning and program devel-

opment phases of an SOC. An SOC could also incorporate

culturally-based training in methods of effective communi-

cation and relationship-building to help address the divi-

siveness and burn-out associated with effects of historical

trauma. Such programs exist; for example, the Healthy

Native Communities Fellowship (http://www.hncpartners.

org) brings teams of AI community members from around the

country together for intensive training to become change

agents creating wellness strategies for their communities

grounded in AI cultural and spiritual teachings. Finally, an

SOC may include regular community talking circles or group

sessions conducted by trained community facilitators to

bring community members together to discuss sensitive

topics, such as trauma, racism, and oppression, as well as

empower them to problem-solve and plan for the future in a

safe and structured setting. The incorporation of these SOC

components would constitute a focus on community devel-

opment and empowerment, prevention, and a reliance on

indigenous ways of knowing and supports in order to heal.

Mobilizing Community to Heal Relationships

and Division

There was a sense from study participants that the trauma

of relocation, combined with the stresses of urban living,

the dispersion of the community throughout the metro-

politan area, and divisions between AI-serving organiza-

tions competing for constituents and resources has led

some community members to feel disconnected, uncertain

of their place within community, or simply too over-

whelmed and stressed to participant in community life in

the way they would like. The data also indicated that

promoting a sense of belonging to community was a key

component in achieving family mental health and wellness.

Therefore, an SOC would need to include innovative

methods to mobilize community and address barriers such

as geographical dispersion, divisions among community

members and agencies, and the invisibility of the AI

Am J Community Psychol (2012) 49:441–453 449

123

population within the larger urban service system. To

address geographic dispersion and disconnection, commu-

nity members indicated that recreational activities planned

and sponsored by multiple organizations would help to

bring people together, build community, create a sense of

belonging and empowerment, and enable the sharing of

information. To address divisions between community

agencies, an SOC might include the creation of a cross-

agency collaborative working committee to develop a plan

for outreach, education, and coordinated efforts to deliver

services. To address the issue of AI invisibility within the

larger political and social service system landscape, an

SOC would include structures (e.g., the creation of a

stakeholder network) to facilitate community mobilization

and organizing in order to more effectively advocate about

the needs of the community to policy makers at the city and

state level. Consistent with Cook and Kilmer’s (2010a)

work emphasizing the importance of an ecological

approach to SOC delivery, such community building and

coordination efforts would require that an SOC take an

ecological perspective on mental health, one that honored

the holistic impact of family and community factors, and

allowed for the promotion of healthy systems in addition to

healthy individuals.

Honoring Local Definitions of Mental Health

and Wellness

Participants noted that a sense of belonging to community,

a strong and stable connection to family and extended

family, and youth’s belief that community members were

supportive and involved in their lives did or could lead to

helping youth and families achieve a sense of balance,

healthy lifestyle practices, spiritual health, positive coping

skills, and feelings of purpose and happiness. Participants

discussed the need to promote wellness and prevention, to

address the powerful stigma associated with mental illness,

and to embrace culturally-relevant conceptualizations of

mental health and wellness from a holistic worldview.

To address these needs, an SOC may need to be framed

more from a wellness promotion/prevention perspective,

rather than as a method to address youth with severe dis-

orders or difficulties. SOCs are traditionally focused on

coordinating services for youth with severe emotional

and behavioral disorders (‘‘SEBD’’). This deficit-based

approach may need to be eliminated and replaced with one

that promotes a strength-based approach, prevention, and a

holistic wellness perspective. A focus on promoting well-

ness, balance, support and strengthening of the entire family

system within the community context is far more consistent

with AI values of interdependence, spiritual strength, and

holistic well-being than a traditional mental health model

focused on identifying a ‘‘patient’’ and creating a plan for

clinical services to address deficits and illness in that indi-

vidual. For example, an SOC that was consistent with AI

values might identify a child/family in need of services

based on a constellation of risk factors and engage the

family in wrap-around services and supports embedded

within community and mainstream systems (e.g. school,

community agencies). Children/families who already

demonstrate emotional or behavioral difficulties could have

additional clinical services added to their wrap-around plan.

This shift would be consistent with what has been proposed

by Kilmer et al. (2010) in order to address the disconnect

between principles and practice and bring SOCs more in

line with their family-centered philosophy. In addition, this

approach would decrease stigma by promoting the notion

that all children and families need supports and services for

healthy development and by embedding most services in

systems that were mainstream and familiar to families. On

the whole, our data suggest that in order for an SOC to be

embraced by AI youth and families, it may require a shift

from the more traditional systems of deficit-based clinical

care and case management services to encompass a broader

range of community-based programs and practices that are

empowering, health promoting, and holistic.

Implementing Community-Based

and Culturally-Relevant Clinical Services

The most common service need discussed was funding for

programs and services. The perception was that programs

and services within community are fleeting, coming and

going with different grants or individuals, but not sustain-

able due to precarious funding streams and lack of con-

sistent infrastructure. Participants noted barriers such as

poor communication between service providers, frag-

mented services that do not address multiple important

contributors to mental health problems (e.g., family stress,

community violence, poverty, and unemployment), stigma

about mental health services, a lack of trust in providers,

and the absence of quality, culturally-informed mental

health services for youth. Notably, despite identifying

service needs and barriers regarding clinical services, the

prevailing notion among participants was that people in

community, including youth, prefer to draw on community

supports and indigenous relationships (peers, family, and

community members) in times of need rather than seeking

out mainstream clinical services. This finding is consistent

with previous literature summarizing the lack of informal

and everyday supports reported by a range of families

participating in SOCs despite the importance attributed to

these factors by families (Cook and Kilmer 2010b).

Findings from this study indicate that a successful SOC

for urban AIs would have secure funding, sufficient infra-

structure, coordinated and collaborative high-quality

450 Am J Community Psychol (2012) 49:441–453

123

services with providers and agencies that work together,

well-disseminated information about available programs

and services, clinicians who were sensitive to the unique

needs of this community and knowledgeable about AI

culture (if not AI themselves), and components to address

barriers such as lack of insurance and transportation.

However, the tendency to rely on indigenous community

supports versus the health care system to address mental

health issues suggests that programs that build capacity

within community, address the various stressors that chal-

lenge family wellness (e.g. economic distress, unemploy-

ment) and empower community members to take leadership

roles in promoting health and wellness through informal

support systems would be effective. Services typically

incorporated into SOC wrap-around models (but not usually

considered traditional mental health services), might

emphasize prevention and wellness promotion components

such as job preparation and financial literacy programs,

violence prevention, youth mentorship programs, educa-

tion/school support, parent training, and culture-based

interventions (e.g. drumming, arts, Native games, story-

telling, ceremony) that promote cultural identity and pride.

Such an approach would require that SOCs take a family-

centered preventative approach to mental health, allowing

for services to be provided to entire families and to youth at-

risk (vs. only to an ‘‘identified patient’’) and to provide

funding to strengthen indigenous resources and supports.

Systems and Policy Changes

These findings also highlight several system/policy chan-

ges specific (or at least particularly warranted) in AI

communities. First, the expansion of mechanisms of

reimbursement to include traditional healers would allow

SOCs serving AI communities to formally incorporate

traditional ceremony and spiritual practices into their array

of behavioral health services, a need consistently identified

by AI communities (Gone 2007). Second, the training and

reimbursement of paraprofessionals to deliver services

would enable capacity-building within communities so that

community members knowledgeable about community and

cultural issues were able to serve their own communities.

The approach of using paraprofessionals has proven a

successful method of service delivery in AI communities

(Walkup et al. 2009) and also helps address the issue of a

lack of trained providers in rural or remote AI communi-

ties. Third, policies could be enacted that facilitate the

incorporation of mental health services within existing

structures and build on informal supports already available

in the community, such as primary care facilities, schools,

cultural/community centers, and families. This will foster a

more integrated approach and help address barriers related

to the serious stigma associated with seeking traditional

Western mental health services in many AI communities.

Fourth, the alteration of policy to further support preven-

tion services as a primary focus of SOCs will support the

incorporation of mechanisms to address historical trauma,

institutionalized racism, and the current realities of many

AI communities, including poverty and unemployment, so

that these issues can be addressed before they manifest in

emotional or behavioral difficulties, or diagnosable mental

health problems. Finally, policies could be established that

require those funded to plan and implement SOCs to

include formal, articulated methods of ensuring that their

work is consistent with an authentic community-based

participatory process, empowering families and commu-

nities to support and promote their own indigenous prac-

tices, and helping communities to develop an evidence

base to support their culturally-based methods of healing

and wellness promotion (i.e. a practice-based evidence vs.

evidence-based practice approach). These recommended

system/policy changes are supported by our data, but also

consistent with previous recommendations for systemic

policy changes to behavioral health systems based on a

comprehensive review of behavioral health and healthcare

in AI communities nationwide (Goodkind et al. 2010).

Strengths of this study include its focus on a unique and

underserved population and use of an innovative qualita-

tive methodology to assess community needs. However,

there are limitations in that study design and data analysis

that are worthy of note. First, this study relied on partici-

pants to self-select their participation and the sample rep-

resents only a fraction of the total community. Thus, the

study sample may not be representative of the entire urban

AI population in Chicago. In addition, though the use of

focus groups stimulated discussion, relationship-building,

and consensus, some participants may have been uncom-

fortable discussing more sensitive topics in a group format

and thus, may have limited what they shared. Finally, as

with all qualitative analysis, though we used a structured

coding system and data analytic software to enhance the

rigor of the study, coding was completed by two commu-

nity research assistants and is therefore subjective based on

their perceptions of how the text fit with different codes.

This bias was alleviated somewhat by the use of a com-

munity research workgroup who also reviewed transcripts

and completed their own process of identifying themes,

which was then compared to what the original coders had

identified.

Conclusions

Taken together, findings from this study indicate that an

effective SOC for the AI community in Chicago would

incorporate methods to strengthen community and family

Am J Community Psychol (2012) 49:441–453 451

123

ties, heal relationships within community, re-connect

families to traditional ways, focus on prevention, empower

community members to drive program development, and

enhance community-based supports. These findings are

consistent with community psychology theory, which

emphasizes the importance of ecology, community devel-

opment, diversity, context, collaboration, empowerment,

prevention, and participatory action (Rappaport and Seid-

man 2000) in affecting individual and social change. Also

evident in these findings is the importance of promoting a

psychological sense of community (Sarason 1974). These

findings are consistent with SOC values that emphasize

diverse and coordinated community-based services and

supports, families as important decision-makers, and the

conceptualization of the child from within an ecological

perspective (Cook and Kilmer 2010a; Kilmer et al. 2010).

However, it has been consistently demonstrated that there

is a substantial gap between SOC philosophy and values

and actual practice and that this gap may at least partially

explain the mixed outcomes in SOC research (Kilmer et al.

2010). In particular, it has been noted that the family-

centered care philosophy of SOC is not supported by

current policy (Kilmer et al. 2010); SOC implementation

does not always take into account the ecological perspec-

tive, especially as related to the incorporation of preven-

tion and informal supports for families (Cook and Kilmer

2010a, b); that most current behavioral health systems and

policies do not support the implementation of a compre-

hensive wrap-around model (Bruns et al. 2010); and that

SOCs are not always developed and implemented using an

authentic community-based participatory process (Pullman

2009).

In the context of this previous research, the current study

adds support to the notion that systems/policy changes

need to occur in order to support the implementation of

SOCs that meet the needs of diverse communities and

reflect core values of SOC philosophy. Specifically, con-

sistent with previous literature that has proposed specific

system/policy changes in SOC delivery (Cook and Kilmer

2010a; Kilmer et al. 2010), the findings of this study sug-

gest: (1) support for an ecological focus—a shift away

from a sole or primary focus on clinical services for an

identified patient, to address a broader range of programs

and services for at-risk youth and families, (e.g., commu-

nity stressors, poverty, unemployment) with funding to

support prevention and the strengthening of informal sup-

ports for families; and (2) support for a community-based,

family-centered care approach—an emphasis on family-

centered care and family-based decision-making supported

by funding for services to parents, siblings and other family

care-takers, an authentic involvement of family members

in care-planning, and funding to support community

development practices that support a sense of community

belonging and well-being. The translation of these values,

which already define SOC philosophy, into actual policy

changes would support the sustainability of SOCs such as

the one desired by AI community members—one that is

holistic, focused on wellness and prevention, provides

services to address broader community stressors, such as

poverty and unemployment, and supports the entire family

system.

Given the resonance of these findings with both com-

munity psychology theory and work on the implementation

of SOC in diverse communities, it is likely that these

system and policy recommendations have considerable

relevance beyond AI communities. Indeed, they may rep-

resent critical next steps for transforming behavioral health

systems of care so that they meet the needs of diverse

communities, fully reflect the philosophies and values by

which SOCs were originally conceptualized, and promote

effective and sustainable SOCs that produce consistent

positive outcomes for youth and families.

Acknowledgments The authors would like to acknowledge fol- lowing members of the community research workgroup that assisted

with data analyses and interpretation: Bobbie Bellinger, Megan

Bang, and Shannon Cobe. We would like to express our gratitude to

youth, families, and elders who participated in this study and to all the

community members who provided input throughout its implemen-

tation. We would also like to acknowledge sponsors who provided

funding to support this study: the Substance Abuse and Mental Health

Services Administration (SAMHSA) and the Great Cities Institute at

the University of Illinois at Chicago.

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