|Home | About | Journals | Submit | Contact Us | Français|
To examine perceived barriers to mental health service use among male and female juvenile detainees.
The sample included 1829 juveniles newly detained in Chicago, IL. The Diagnostic Interview Schedule for Children and Child Global Assessment Scale were used to determine need for services. Service use and barriers to services were assessed with the Service Utilization and Risk Factors interview.
Approximately 85% of youth with psychiatric disorders reported at least 1 perceived barrier to services. Most common was the belief that problems would go away without help. Generally, the attitudes towards services were remarkably similar across gender and race. Among females, significantly more youth with past service use or referral to services reported this barrier than did youth who had never received or been referred to services. Among males, significantly more youth who had been referred, but never received, services were unsure about where to go for help than youth with past service use. Significantly more youth with no past service use or referrals were concerned about the cost of services than youth with past service use.
Despite pervasive need for mental health services, findings from this study suggest that detained youth do not perceive the mental health system as an important or accessible resource. Youth who believe their problems can be solved without assistance are unlikely to cooperate with referrals or to independently seek mental health services. Service providers must be sensitive to clients' perceived barriers to mental health services and work to reduce negative perceptions of services.
Over 2 million juveniles are arrested each year1 and nearly 100,000 juveniles are in custody on any given day.2 Of the many youth involved in the juvenile justice system, the majority meet criteria for psychiatric disorders that warrant mental health treatment.3-5 Recent estimates indicate that nearly 70% of female detainees and 60% of male detainees have a psychiatric disorder other than conduct disorder;4 approximately half have 2 or more disorders.6 Rates of psychiatric disorder among youth in the juvenile justice system are substantially higher than rates in the general population.
Jails are required to provide a minimum of psychiatric care to inmates,7 yet recent reports issued by the Surgeon General8 and the President's New Freedom Commission on Mental Health9 suggest that youth in custody are profoundly underserved. Although over 70% of detention centers now screen for mental disorders,10 one study found that only 15.4% of detainees with major mental disorders received treatment.11 Males, older youth, and racial/ethnic minorities with major mental disorders were significantly less likely to receive treatment than were females, younger detainees, and non-Hispanic whites with major mental disorders.11
Even with increased attention to the mental health needs of juvenile detainees,10 barriers to service use remain. Youth in the juvenile justice system have many of the characteristics associated with lower rates of service use: poverty and poor education,12-14 inadequate health insurance and ineligibility for Medicaid,15-17 racial/ethnic minority status,14, 18 a history of arrest,4, 19 and small social networks.20, 21
Although much is known about these external barriers to mental health service use, less is known about youths' perceived barriers and attitudes toward service use. How youth perceive or think about service use may be as important, if not more important, in determining whether or not youth cooperate with referrals or remain in treatment. To date, 3 studies have examined perceived barriers to substance abuse treatment among detained youth.22-24 Kim and Fendrich22 and Lopez23 found that seeking services for substance abuse was determined by the perceived need for treatment, regardless of race/ethnicity. Johnson and colleagues24 found that beliefs that one could handle one’s own problems or that problems would simply go away were associated with lower rates of service use among juvenile detainees. However, these studies examined only services for substance abuse. To our knowledge, no study has investigated perceived barriers to mental health service use among juvenile detainees.
The current study is designed to address this omission in the literature. It has a stratified random sample of 1829 juvenile detainees; sample of sufficient size and diversity to examine differences in rates of and barriers to mental health service use among key sociodemographic subgroups. We examined the following questions:
Participants were sampled from the Cook County Juvenile Temporary Detention Center (CCJTDC) in Chicago, IL, from November 1995 through June 1998. The sample of 1829 male and female detainees (aged 10-18 years) was randomly selected and stratified by gender, race/ethnicity (African American, non-Hispanic white, Hispanic), age (10-13 years or 14 years and older), and legal status (processed as a juvenile or as an adult). Stratification ensured that we had enough participants in key subgroups (e.g., females, Hispanics, younger children) to make comparisons between and within the subgroups. The sample is composed of 1172 males (64.1%) and 657 females (35.9%), 1005 African Americans (54.9%), 296 non-Hispanic whites (16.2%), 524 Hispanics (28.6%), and 4 who self-identified as “other” (0.2 %). The mean age of participants was 14.9 years (median age, 15.0 years).
The demographic make-up of CCJTDC is similar to other juvenile detention centers nationwide in that almost 90% of detainees are male and most are racial/ethnic minorities. The population of CCJTDC is 77.9% African American, 5.6% non-Hispanic white, 16.0% Hispanic, and 0.5% other racial/ethnic group. Age and offense distribution at CCJTDC are similar to other detention centers in the nation. The CCJTDC is used for pretrial detention and for offenders sentenced to less than 30 days. Youth younger than 18 years are held at CCJTDC, as are youth processed as adults. Additionally, youth as old as 21 years may be held at CCJTDC if they are being prosecuted for an arrest that occurred before they were 17 years old.
We chose CCJTDC in Cook County for 3 reasons: (1) most juvenile detainees live in and are detained in urban areas, (2) Cook County is ethnically diverse and has the third largest concentration of Hispanics in the nation, and (3) the detention center's size (daily census of approximately 650 youth and intake of 20 youth per day) guaranteed enough participants for our study. The demographic similarity of CCJTDC to other detention centers in the nation suggests that our results will be generalizable to other large cities in the United States.
Studying detained youth requires special procedures because they are minors, they are detained, and many do not have a parent or guardian who can provide appropriate consent. Project staff approached participants on their units, explained the project, and assured them that anything they told us (except comments implying imminent danger to self or others) would remain confidential. Detainees who agreed to participate signed an assent form (if they were younger than 18 years) or consent form (if they were older than 18 years). Federal regulations allow parental consent to be waived if the research involves minimal risk (45 CFR 46.116(c), 45 CFR 46.116(d), and 45 CFR 46.408(c)). The Northwestern University Institutional Review Board, the Centers for Disease Control and Prevention Institutional Review Board, and the US Office of Protection from Research Risks waived parental consent. However, as ethicists recommend, we nevertheless tried to contact parents to provide them an opportunity to decline participation and to offer them additional information (45 CFR46.116(d)). Despite repeated attempts to contact the parent or guardian, none could be found for 43.8% of participants. In lieu of parental consent, youth assent was overseen by a Participant Advocate representing the interests of the participants. Federal regulations allow for a Participant Advocate when parental consent is not feasible (45 CFR 46.116[d]).
Detainees were eligible to be sampled for the study regardless of their psychiatric morbidity, state of drug or alcohol intoxication, or fitness to stand trial. Of the 2275 names selected, 4.2% (34 youth and 62 parents or guardians) refused to participate. There were no significant differences in refusal rates by gender, race/ethnicity, or age. Of youth processed as adults, 7.1% (26 of 368) refused participation. Twenty-seven youth left the detention center before we could schedule an interview; 312 were not interviewed because they left while we were locating their caretaker for consent. Nine participants were excluded because they were too ill to complete the interview, 1 participant was excluded due to extreme cognitive impairment, and 1 participant was excluded for suspected untruthfulness during the interview. Our final sample included 1829 detained youth, a sample large enough to reliably detect disorders (i.e., distinguish them from zero) that have a base rate in the general population of 1.0% or greater with a power of .80.
Participants were administered a face-to-face structured interview in a private area lasting approximately 2 to 3 hours, depending on the number of symptoms endorsed. Interviews took place usually within 2 days of intake. Every interviewer was trained for over 1 month, had a master's degree in psychology or a related field, and had experience with high-risk youth. Over 30% of the interviewers were fluent in Spanish. Interviewers were both male and female; all female participants were interviewed by a female interviewer. Additional information on our methods is published elsewhere.4
We used the Diagnostic Interview Schedule for Children, version 2.3 (DISC 2.3), to measure alcohol, drug, and mental (ADM) disorders,26, 27 the most recent versions then available. The DISC 2.3 assesses the presence of disorders in the past 6 months. It is a highly structured interview with detailed probes. It requires brief training and yields acceptably reliable and valid results.26, 28, 29 We measured affective disorders (major depression, dysthymia, mania, hypomania), anxiety disorders (panic, generalized anxiety, separation anxiety, obsessive-compulsive, over-anxious), behavior disorders (conduct disorder, attention-deficit/hyperactivity, oppositional defiant disorder), psychosis (including schizophrenia), and substance use disorders (alcohol, marijuana, and other substance disorders).
We used the Children's Global Assessment Scale (CGAS) to measure functional impairment. The CGAS is widely used and has excellent reliability and validity.30 The CGAS measures a child's lowest level of functioning within a specified time period, the past 6 months for this study. This instrument summarized the interviewer's impression of the lowest level of the subject's functioning at home, at school and/or work, and in other social environments. Scores range from 1 (most impaired) to 100 (healthiest). Bird and colleagues31 suggest that CGAS scores below 61 in conjunction with presence of a diagnosis should be used to identify those children in need of services; therefore, we used the cutoff of 61 to determine functional impairment.31
To assess service use and barriers to services, we used the National Institute of Mental Health Epidemiology of Child and Adolescent Mental Disorders Service Utilization and Risk Factors (SURF) interview.32 Items query services received in school for educational, behavioral, emotional, or substance use problems, non-school services received for emotional, behavior, or substance use problems, type of service received (inpatient, outpatient, residential), treatment provider, length of treatment, and satisfaction with services.
The SURF assesses potential barriers to services and asks participants to suggest additional barriers. Those currently in treatment or with a history of using mental health services were asked why they had stopped treatment or whether various factors had made them think about stopping treatment. Those who had been referred but had never received treatment were asked why they had not gone for help when it was suggested. Finally, those who had never been referred for services nor received services were asked what factors might impede them from getting help if they needed help. Questions probed barriers to non-school services only.
Because selected strata were oversampled, we used sample weights, based on the CCJTDC population, to estimate descriptive statistics and model parameters that reflect the CCJTDC population. All statistical estimates (e.g. prevalences, odds ratios) were subsequently adjusted by the sample weights to represent the detention center population.33 Weighted analyses were conducted using Stata, version 9.0. Taylor series linearization was used to estimate associated standard errors.34, 35 Logistic regression was used to assess demographic differences in perceived barriers to service use. The dependent variables were past service use (yes, referral only, no) and type of perceived barrier to services. The independent variables were gender and race/ethnicity. Comparisons were made only among participants who had a diagnosable mental disorder.
Table 1 shows that among participants with any mental disorder, most reported at least one barrier to services received outside of school; the most common was the belief that the problem would go away or that it could be solved on one's own. The second most common barrier was uncertainty of the appropriate person or place to get help. Nearly one-fifth of the sample reported that it was too difficult to obtain help. There were no significant racial/ethnic or gender differences in the prevalence of these barriers.
Over one-fourth (27%) of the sample with ADM disorders volunteered “other” barriers. Denial that a problem exists, disinterest in treatment, and dissatisfaction with their therapist or treatment were the most common barriers volunteered by youth with any ADM disorder. The prevalence of these “other” barriers varied by gender and race/ethnicity. Significantly more males than females volunteered that they did not have a problem (31.8% vs. 19.1%) (Odds Ratio [OR] = 1.98, 95% Confidence Interval [CI] = 1.03 - 3.80). Significantly more females than males were afraid of labeling or other negative consequences of treatment (17.3% vs. 3.8%) (OR = 5.26, CI = 1.28 – 21.60). Significantly more African American (OR = 3.56, CI = 1.45 - 8.72) and Hispanic youth (OR = 4.24, CI = 1.61 – 11.19) than non-Hispanic white youth volunteered that they did not have a problem (31.9% and 35.9% vs. 11.7%). Significantly more non-Hispanic white youth than Hispanic youth reported that they feared labeling or other consequences of treatment (7.7% vs. 1.5%) (OR = 5.53, CI = 1.60 - 19.10).
We next examined whether a history of service use influenced perceived barriers to services among detainees with any ADM disorder. History of service use varied by gender and race/ethnicity. Significantly more females (70.0%) than males (49.1%) had received services outside of school (e.g., medication, residential treatment, and professional outpatient services) prior to detention (OR = 2.42, CI = 1.76 - 3.34). Most non-Hispanic white males had received out of school services prior to detention (83.1%), contrasted with fewer than half of African American (48.4%; OR = 5.24, CI = 3.10 - 8.85) and Hispanic (40.0%; OR = 7.35, CI = 4.20 - 12.87) males. Among females, significantly more non-Hispanic whites received services outside of school (87.0%) than African Americans (64.7%; OR= 3.65, CI = 1.73 - 7.70).
Table 1 shows that although the most common barrier reported was the belief that problems would go away or be solved on one's own, significantly more females who had received services prior to detention (OR = 2.79, CI = 1.62 - 4.80) or who had been referred for services but had never received (OR = 2.34, CI = 1.14 - 4.80) them endorsed this belief than females who had neither been referred nor received services. Compared with males who had received services, significantly more males who had never received services worried about cost (OR = 4.54, CI = 2.12 - 9.74). Similarly, compared with females who had received services, significantly more females who had never received services (OR = 6.29, CI = 3.16 - 12.50) or who had been referred but had never received services (OR = 4.41, CI = 2.00 - 9.69) worried about cost. Significantly more males who had never received services reported concern about what others might think than males who had received services (OR = 3.57, CI = 1.77 - 7.21). Significantly more males who had been referred but never received services reported uncertainty about the appropriate person or place to get help than males who had received services (OR = 2.81, CI = 1.39 - 5.66).
We also examined the prevalence of “other” barriers by history of service use among those with any ADM disorder. Among youth with an ADM disorder who volunteered an “other” barrier to treatment, significantly more youth who had never received services prior to detention (both those who had never been referred and those who had) denied having a problem than those who had received past services (never referred, never received: 53.7% (OR = 5.24, CI = 1.04 - 26.31); referred, never received: 71.2%; received: 18.1%) (OR = 11.16, CI = 3.31 - 37.66).
There are many reasons why a young person might not seek services for mental health problems. Our study shows that most detained youth with mental disorders report at least 1 perceived barrier to mental health services. The belief that problems would go away without outside help was the most common barrier, regardless of gender, race/ethnicity, or (among females) prior experience with mental health services. This perception is also common among youth in the general population with self-identified mental health needs36 and among youth receiving substance use services.24 Parents of children with mental illness also frequently report this barrier,37 indicating the possibility of an intergenerational pathway for this belief.
Despite meeting criteria for a mental disorder, many youth stated that they did not have a mental health problem. Detained youth who do not recognize their mental health problems or feel that they can solve such problems independently are unlikely to cooperate with referrals. Perceiving a need for mental health services is fundamental to both seeking services22, 23 and staying in treatment.38
The common barriers reported by juvenile detainees in this study may reflect perceptions about the state of the mental health service system in the United States. It is encouraging that the majority of youth did not express concern about how to access services; however, a substantial minority was uncertain. Nearly 1 of every 3 detained youth with ADM disorders in our study reported uncertainty about where to get help, and nearly 1 of 5 felt that it was too difficult to access services. Recent national reports and research support the belief that services are, indeed, too difficult to access.8, 39 Fragmented systems of care (e.g., child welfare, juvenile justice, school sectors) likely contribute to confusion about where to seek needed services.10, 39
African American and Hispanic detainees had received significantly fewer past services than non-Hispanic white youth, similar to patterns among youth in the general population and public sectors of care.40-44 Compared with females, male detainees also had received significantly fewer past services.
Yet, despite disparities in service utilization, attitudes toward services were remarkably similar across gender and race. These findings suggest that individual perceptions and attitudes toward mental health services do not explain disparities in service use among juvenile detainees. Racial and ethnic disparities in service use more likely stem from external factors, such as poverty, lack of sufficient minority service providers, and socio-cultural barriers.45 Gender disparities may be due to greater help-seeking behaviors among females than males46 and the higher likelihood of females being be referred to mental health services.44
Nearly three-fourths of youth had received services (including school services) prior to being detained, rates significantly higher than among youth in the community47-49 and comparable to rates of service use among youth receiving services in public service sectors.42, 43, 50, 51 Past service use was associated with attitudes toward services. Compared with detained youth who had received services, those who had never received services were, in general, more likely to be concerned about what others might think about them, to be uncertain about where to seek services, and to be unsure if they could afford services. These barriers are also common among untreated youth37 and adults52 with mental health disorders in the general population. We also found, however, that females who had received services in the past were more likely to be skeptical about using services in the future than those who had never received services. Those who received services prior to detention were more likely than untreated youth to believe that problems would go away on their own without treatment. There was a similar trend among males. Any attempt to increase mental health service delivery to detained youth must address how past experiences influence youths' receptivity to referrals.
Several limitations to the study are noteworthy. Because our findings are drawn from a single site, they may pertain only to youth in urban detention centers with a similar demographic composition. Prevalence rates of service need may differ if diagnoses were based on DSM-IV instead of DSM-III-R criteria. Because it was not feasible to interview caretakers (few would have been available), our data are subject to the reliability and validity of the youth's self-report. Although our self-report instrument may have included services not captured by official records (e.g., non-reimbursed and informal services), our rates of service use may be affected by the turmoil of a recent detention, memory loss, differing rates of service use over time, or omissions.53 Adolescents who had not received services in the past and who did not perceive themselves as having problems were asked to “imagine” perceived barriers if they did have a problem. Such abstraction may not correspond to how the adolescent would behave if confronted with an actual problem. In addition, the SURF probes only 5 barriers to services; many of our participants reported an “other” barrier to treatment. Finally, we were not able to assess the quality or appropriateness of services; it is unknown if past treatment was appropriate for participants' needs.
We recommend three areas for future research:
Our findings have implications for clinical services. First, we must engage youth in the referral process. Findings from this study underscore the importance of understanding youths' past experiences with mental health services before referring them to new services. Experiences with past services may contribute to negative perceptions of future services and decrease the willingness of youth to seek services in the future. Candid exploration of past experiences offers youth an opportunity to express negative perceptions and choose service options that will maximize their likelihood of engaging in treatment.
Second, we must provide educational outreach. To close the gap between service need and service delivery, the mental health and correctional systems must collaborate to educate high-risk youth and their families. Educational outreach programs should provide information about the nature of mental health problems and available treatment options, as well as address myths and stigma of mental health problems. Furthermore, education is needed to improve juvenile detainees' understanding of how best to navigate the complex and fragmented mental health system in the United States.
Despite pervasive need for mental health services, findings from this study suggest that detained youth do not see the mental health system as an important or accessible resource. Improving service delivery to these high-risk youth must include finding ways to inspire their confidence.
This work was supported by National Institute of Mental Health grants R01MH54197 and R01MH59463 (Division of Services and Intervention Research and Center for Mental Health Research on AIDS) and grants 1999-JE-FX-1001 and 2005-JL-FX-0288 from the Office of Juvenile Justice and Delinquency Prevention. Major funding was also provided by the National Institute on Drug Abuse, the Substance Abuse and Mental Health Services Administration (Center for Mental Health Services, Center for Substance Abuse Prevention, Center for Substance Abuse Treatment), the NIH Center on Minority Health and Health Disparities, the Centers for Disease Control and Prevention (National Center on Injury Prevention and Control and National Center for HIV, STD and TB Prevention), the National Institute on Alcohol Abuse and Alcoholism, the NIH Office of Research on Women's Health, the NIH Office on Rare Diseases, Department of Labor, The William T. Grant Foundation, and The Robert Wood Johnson Foundation. Additional funds were provided by The John D. and Catherine T. MacArthur Foundation, The Open Society Institute, and The Chicago Community Trust.
Thank you to Ann Hohmann, Ph.D., Kimberly Hoagwood, Ph.D., and Heather Ringeisen, Ph.D., for indispensable advice, and Grayson Norquist, M.D., and Delores Parron, Ph.D., for their support. Celia Fisher, Ph.D., guided our human subject procedures. We thank project staff, especially Amy Mericle, Ph.D., Lynda Carey, M.A., and our field interviewers. Without the cooperation of the Cook County and State of Illinois systems, this study would not have been possible. Finally, we thank the participants for their time and willingness to participate.