Engaging Depressed African American Adolescents in Treatment: Lessons From The AAKOMA PROJECT

Abstract

The authors describe and illustrate means of engaging depressed African American adolescents in treatment. Twenty-eight youth participated in focus groups or individual interviews. Using grounded theory and transcript based analysis, they derived 5 themes describing African American adolescents’ experience of depression and suggested mechanisms for improving African American youth treatment engagement. Practitioners can educate African American youth about depression as a medical disorder, build trust, and apply innovative approaches to recognizing differential manifestations of depression in African American youth.

Depression has long been recognized as a mental health concern of great consequence to individual physical health and emotional well-being. Among adolescents specifically, depression is linked to multiple health problems (like obesity and high blood pressure) and is recognized as a contributing factor to suicide. The connection between depression and suicide is of particular import, given the recognition of suicide as one of the top three causes of death among 10–19-year-olds and 15–44-year-olds (Hamilton et al., 2007; World Health Organization, 2009). In addition, recent epidemiologic estimates place U.S. adolescent unipolar depression prevalence at approximately 5.2% (National Research Council & Institute of Medicine, 2009).

Little research exists to describe the adolescent experience of depression and its impact on families, with some notable exceptions (Domino et al., 2008). What little we do know about the adolescent experience of depression comes primarily from data drawn from White youth. If one goal is to better understand adolescent depression and its impact, it is imperative that we gain a better understanding of the diagnosis, impact, and treatment of depression for all youth (including African Americans and other youth of color).

The literature is equivocal regarding Black-White differences in depression prevalence, with some researchers (e.g., Angold et al., 2002) reporting higher prevalence in White youth (4.6% vs. 1.4%), while other researchers (e.g., Roberts, Roberts, & Chen, 1997), report higher prevalence in African American youth. One thing, however, appears certain: African American and other youth of color face significant unmet need regarding depression treatment (Joe, Baser, Neighbors, Caldwell, & Jackson, 2009; Yeh et al., 2005).

We know not only little about African American adolescent depression prevalence but less still about how these youth experience depression. If practitioners are to develop better approaches to the identification and treatment of depression across diverse youth, including African Americans, then we must first gain a clear sense of how African American youth and families identify depression and, second, determine what youth and families do once they recognize that a problem exists. In this article, we focus on the African American adolescent experience of depression and on culturally relevant methods for engaging this population in treatment.

The African American Knowledge Optimized for Mindfully Healthy Adolescents Project

The African American Knowledge Optimized for Mindfully Healthy Adolescents (AAKOMA) Project is a two-phase clinical treatment development trial. We are developing a motivational interviewing (MI) intervention to improve treatment engagement of depressed African American youth and their families (Breland-Noble, Bell, & Nicolas, 2006). Phase 1 entailed qualitative data collection from a community sample of African American adolescents and adults regarding their perspectives on adolescent depression perceptions, youth underutilization of depression treatment, and lower participation rates in research. Phase 2 is focused on the development and testing of a manualized treatment (built on motivational interviewing and the data collected in phase 1) to improve depressed African American adolescent readiness to participate in depression treatment.

African American youth between the ages of 11 and 17 years who self-identify as Black/African American (non-Latino) participated in phase 1 of this study. Youth were recruited from a southeastern state in the United States in a regional area approximately 38% African American. Teens were included in this study if they: (a) met criteria for depression (i.e., received a T-score of 65 or higher on the Children’s Depression Rating Scale); (b) were at risk for depression (i.e., received a score of 55–64 on the Children’s Depression Rating Scale); (c) received a summary score subthreshold rating for the mood disorders screen section of the Schedule for Affective Disorders and Schizophrenia, Present Episode Version (K-SADS-PL); or (d) indicated recent suicidal ideation on the Suicidal Ideation Questionnaire, Jr. (SIQ-Jr.).

We conducted focus groups and individual interviews. Adolescent focus groups were separated by age into groups that comprised only older youth or only younger youth to reduce the potential for iatrogenic effects. All focus groups were co-led by two trained facilitators and always included the Principal Investigator (PI). The following qualitative data are from the 28 youth who completed phase 1 of the study. Twenty-one of the youth participated in focus groups and seven elected to participate in individual interviews.

Five Themes

The research team identified five themes regarding African American adolescent depression and treatment, including the following: adolescent pluralism in depression management, triggers and outcomes, impressions of treatment, trust and frustration, and recommendations. To protect confidentiality, teens’ names are coded as cars. We derived the car names from the teens’ responses to the statement, “Name the car that best reflects your personality.” We then used the car name to identify them. Following, we present the themes along with specific examples taken from the data.

Adolescent Pluralism in Depression Management

Youth indicated that they employ multiple methods of self-care when depressed. In some respects, the methods seemed counter-intuitive and created the impression that the teens were conflicted about what specific help they needed and how best to obtain said help as the following example illustrates.

Honda is a 16-year-old girl:

Sometimes you get to a stage in depression where you feel like, okay, you think about it every day, you think about what would happen if this person knew me, or what would happen if this person noticed me. And then you start thinking about, you know, what would it be like if I was popular? And then when you start getting some attention, you don’t know what to do with it and you feel like you need it all the time, and when you don’t get it all the time, then you’re just upset when you don’t get it. And I noticed that with myself … and it’s just a, it’s just a struggle for attention when you get to a certain stage of depression.

In this example, Honda describes wanting to be alone initially, then wondering how her life would be different if she received more peer attention, followed by her desire and efforts to obtain the attention, which she then finds overwhelming and a contributing factor to her depression. Other teens demonstrated ambivalence about how they wanted the adults in their lives to support them with their depression. One teen, Altima, best described this sentiment by indicating that when she is depressed, she can turn to her mother or godmother. However, even though she felt confident that both of them would provide a listening ear for her, she stated that she was considerably less likely to talk with her mom because she was a poor listener and usually provided outdated advice. Two other teens, Cadillac and Concept, echoed the ambivalence expressed by Honda and Altima by indicating that although they would recommend to adults the importance of making genuine efforts to relate to teens as a key to supporting them with depression, they themselves would not seek help from adults, opting instead to manage alone and turning only to adults as a last resort.

Cadillac is a 15-year-old boy; Concept is a 14-year-old boy.

Cadillac: But my problem was I didn’t want to talk to anybody.

I just felt as though I could handle it on my own.

Concept: I don’t, I don’t go to that. I don’t go to anybody.

Group facilitator: Mmm-hmm. And what do they do that lets you know they want to help you?

Concept: They actually, they, instead of them coming to me, they like, well, I come to them first and then they try to see if I need anything else or anything like that. Instead of just, well, “How does it make you feel?” and stuff like that.

Group facilitator: Okay. So, that sounds like that’s important. For people to kind of back off and let you come when you’re ready to talk to them instead of constantly being in your face, “What’s wrong? What’s wrong? Can I help you?” So, that does not help? People being in your face all the time? No.

Concept: It makes you feel worse.

Group facilitator: Okay. Okay. Now, why does it make you feel worse?

Concept: Cause it’s putting pressure on you to, like, just throw things out there, and then when you start, you can’t really stop and then you end up telling something you don’t want everybody to know.

Consistently, the teens indicated that they wished for one of two extremes: to be left completely alone or for loved ones to reach out to them in very specific ways.

Triggers and Outcomes

Youth shared what they believed to be the primary triggers for depression, including romantic relationship problems, academic problems, bereavement, and stress.

Mustang is a 13-year-old girl; Honda is a 16-year-old girl.

Mustang: Um, yeah, I’ve been diagnosed with depression.

Group facilitator: Okay.

Mustang: Um, I don’t know how it happened. Probably from what happened, like all the stress in my life and me not knowing how to handle it.

Group facilitator: Mmm-hmm.

Mustang: And maybe in the age that I am, I do certain things, and I have to like, so much pressure is put on me at my age … because you know, school and everything, trying to get myself together.

Honda: And they [other teens] go [through] some of the things that I used to go through. Like being picked on, being told that, you know, they should go kill themselves … or being told that, you know, you know, people are going to kill them….

The teens also expressed how their depression manifested, a discussion within which we identified a gender difference. Specifically, girls described internalizing behaviors (becoming withdrawn, exhibiting visible sadness), while boys described externalizing behaviors, with a primary focus on anger and acting out.

Cutlass is a 17-year-old boy.

Interviewer: I want to ask you a little bit about differences between males and females, teenagers. What males and females do you think there’s anything different between how teenage males and teenage females deal with their problems or feeling depressed or anything like that?

Cutlass: Like, I mean, like, I mean, I’m not for sure but I know, like, the female might cry more. And the male probably fight more than anything else if anything wrong.

The following is a response to a question in which the research team asked a study youth male to create a hypothetical depressed African American teen.

Lamborghini is a 15-year-old boy.

Interviewer: So, if you were going to create somebody, let’s say an African American youth. So, what age should we make them? Well, first, boy or a girl?

Lamborghini: Boy.

Interviewer: Boy. What age?

Lamborghini: Twelve.

Interviewer: Twelve. Okay and let’s say he’s depressed. Give him some, what would he look like?

Lamborghini: Mad.

Interviewer: Mad. Okay. What else?

Lamborghini: Um … I don’t know. That’s the only thing I can think of, mad.

Interviewer: You had thought, you had put together some, um, other things … that made somebody look like they were depressed. Uh….

Lamborghini: Sleepy.

Interviewer: You think he might be sleepy. Okay. Like, sleepy all the time or sleepy just at night time or sleepy during the day?

Lamborghini: All the time or day.

In one focus group, a female described her depression as follows:

Honda: Um, I’m depressed. I was diagnosed with depression about 4 or 5 years ago, and it’s really something that hurts other people as well as yourself … it can cause you to hurt yourself … and it can cause you to hurt other people by closing them out … building barriers and things like that….

Study youth presented consistent types of triggers for African American adolescent depression and used gendered descriptions of the outcomes associated with the disorder.

Impressions of Treatment

Teens held an overall unfavorable impression of depression treatment, with some exceptions. In particular, they described clinicians who did not understand them, made futile efforts to relate to them, and wanted to prescribe medications for them without explaining the purpose or utility of medications. The following quotes aptly characterize the teens’ sentiments.

Honda: Um, I talked to my friend, and she—I asked her if she got therapy—and she said, “Yes, I’ve had therapy, but, um, they don’t help at all.” And I was asking, you know, like, “Why in the world is therapy not helping, because I’m in therapy and it helps me a lot.” And she was just like, “Um, well, they just tell me stuff that I already know.”

Mercedes is a 15-year-old girl.

Interviewer: Um, so… you know, that talk therapy is basically when you sit down in the room and talk with a therapist and all of thaty….

Mercedes: I hated it.

Interviewer: You rolled your eyes up in your head. You hated it? Mercedes It didn’t help me.

Interviewer: Why?

Mercedes: It’s too much. I don’t like to talk.

Interviewer: You don’t like to talk?

Mercedes: No, unless I’m interested in it.

Interviewer: Okay and it wasn’t interesting.

Mercedes: Uh-uh. [no]

Later in interview, referring to a friend’s experience with treatment:

Mercedes: It, it was just, like, “So, I didn’t know you had counseling,” and she was, like, “Yeah, I got counseling and it’s boring. It’s all right. I got to deal with it, you know and move on.”

Interviewer: Why wasn’t it?

Mercedes: Cause it was about me.

Interviewer: Okay. Did you find it difficult to talk about yourself?

Mercedes: Mmm-hmm. [yes]

Finally, Mustang, the 13-year-old girl, shared her sentiments regarding antidepressants.

Mustang: Everybody gets sad once in a while, you don’t need to be medicated for being sad….

They’re putting them on drugs. But, like, and then when they get sad, they want to put them on drugs for depression.

Trust and Frustration

Teens expressed significant frustration with and distrust of peers, adults and clinicians whom they believed failed to help or in some cases exacerbated their depressive symptoms. They described a general lack of willingness to trust adults and peers whom they felt had betrayed their trust in the past by sharing their secrets with others or whom they believed would not or could not make a genuine effort to listen to them and demonstrate care.

Crossfire is a 14-year-old girl.

Interviewer: Really, what I want to know is … what are some of the challenges to seeking help from parents?

Crossfire: They, they just sometimes, just, they don’t how to deal with situations themselves, so just, I guess they, like, “What? Not my child,” or something like that. They might think that you’re all right or whatever but really you’re not.

Mustang is a 13-year-old girl.

Interviewer: Okay. In your experience… what made you feel like you couldn’t trust the person that you were sitting down to talk with?

Mustang: The fact that I didn’t know them. And, I had just been introduced to them. So, yeah.

Interviewer: Do you think that trust could have been developed over time?

Mustang: No.

Interviewer: No? Okay.

Mustang: It takes a very long time for me to trust a person.

Interviewer: Okay. Is it just time or is it, are there other things too that they might need to do or not do for you to be able to trust them?

Mustang: Just time.

Later in the interview:

Mustang: Then, with my family, no ‘cause I just, like, don’t trust them. They always have big, they tell, like, there’s a lot of things I tell them and I’m meaning for them to keep it to themselves, but apparently they it’s like they don’t know how to. They just have to go tell somebody else, so that’s why I just don’t trust my family at all.

Interviewer: Okay. Would you think that a counselor or therapist might do the same thing?

Mustang: Um, no. I just think it’s the fact to get what they want. They dig … it seems they dig too deep and it’s kind of annoying. So, yeah.

Blue Mustang is a 14-year-old girl.

Blue Mustang: Yeah, because I know they’d be like, “You aren’t crazy, ain’t nothing wrong with you, you just need to toughen up.” Or something like that.

Group facilitator: Okay, okay, okay. So the things we hear from adults are, “We’re just not being tough enough?”

Blue Mustang: Yeah.

Group facilitator: So, if you feel bad … for these adults, it’s not for any other reason other than you not trying hard enough? Does that sound right?

Blue Mustang: Mmm-hmm. [yes]

Treatment Recommendations

Study teens had many ideas regarding how best to engage African American teens in depression treatment. Teens indicated that protections of privacy and an open door policy by clinicians should be encouraged. In other words, clinicians should have readily available and easily accessible or even “drop in” appointments and teens should not be treated conspicuously by being taken out of class or removed from school in a public manner for depression treatment.

Mustang is a 13-year-old girl; Honda is a 16-year-old girl.

Mustang: [Regarding depression treatment] I mean, don’t take them out of, like, their school. Why would you take it out of their school time?

Another teen: Yeah, don’t take it out of their school time.

Mustang: Do it after school, not on the weekends so we can have like, you know, our weekend time. Like….

Honda: Do it in the afternoon.

Honda: Because school is, school is important first of all.

Honda: It’s important socially and academically.

Hummer is a 13-year-old girl.

Hummer: They [school administrators] should have a more discreet way of calling you to the guidance office. And then when you’re in the office, they make sure they’ve got that little thing covered up where you can look inside … and then they should have, like, a little “Don’t Disturb” sign and close the door ‘cause that’s embarrassing, too.

Lamborghini: [Referring to the study focus group] We need more of these.

Group: [Laughter]

Lamborghini: We just have a time when we can talk about everything.

Comment on Themes

The African American youth in this study were extremely forthcoming regarding their personal experiences and the experiences of their peers, families, and acquaintances. Youth described feelings of ambivalence about the disorder, a limited interest in seeking professional support for the disorder, and serious concerns about the utility of medications. These themes reflect prior research in the area specifically as it relates to self-diagnosis of the disorder and help-seeking behaviors. Although the teens could describe the symptoms of depression and indicate that they had experienced feeling sad, down, or stressed, they were unable, in most instances, to label the feelings they themselves had encountered as depression.

Additionally, these teens seemed hesitant to label other African American peers as depressed. An excellent example of this was seen across focus groups and individual interviews in response to the prompt, “Can you think of a teen TV character or a celebrity who seems like he or she is depressed to you?” In almost every instance, the study participants consistently identified White teens, even when asked to consider African Americans who might fit the description of a depressed teen. In only one instance did a study participant name an African American, the young actress Raven-Symone (from the Disney Channel show “That’s So Raven”), with the sole explanation that she must be depressed because of her public struggles with her weight. The lack of willingness to label depression as an illness for them is consistent with similar research conducted with community samples of African American youth (Kendrick, Anderson, & Moore, 2007; Lindsey et al., 2006).

Youth also indicated that their peers exhibit significant gender differences in the manifestation of depression, with boys favoring acting out and girls favoring internalized behaviors. Other research indicates this to be the perception of clinicians, other adults, and, of greatest significance, the youth themselves, regarding depression-associated behaviors (Kendrick et al., 2007). Research (McLaughlin, Hilt, & Nolen-Hoeksema, 2007) using self-report from middle school-aged youth indicated a trend among African American boys toward reporting higher comorbidity in emotional and behavioral disorders coupled with higher self-reports of “overtly aggressive” behaviors. This is of great concern given that researchers have not yet begun to fully understand African males’ self-perceptions as it relates to the relationship between depressive symptomatology and self-reported “acting-out” behaviors.

Clinical Practices and Summary

It is important for clinicians to note the ambivalence that African American youth report regarding acceptance of depression as a medical disease. We believe this ambivalence is related to the pluralism that the youth expressed about depression management. Previous research supports this notion by indicating that (a) African American youth do not recognize depression as a medical disease and (b) they view it as a concern that can be controlled through strong will and religious faith (Jacobs et al., 2008; Kendrick et al., 2007; Lindsey et al., 2006; Molock et al., 2007).

Given this notion of “depression is not a disease” and its seeming prevalence among African American youth and families, how might clinicians respond? We propose a multifaceted strategy. First, actively engage communities by providing culturally relevant psychoeducational opportunities regarding adolescent depression. Events might take the form of public forums, seminars, school events and trainings with community-based organizations to “spread the word” about depression and its impact on African American youth. Second, involve other African American individuals who have experienced depression and are willing to share their stories in psychoeducational venues. In this way, adolescent depression gains a “face” that other youth can identify as a means of culturally validating the existence of depression within their ethnic group. Additionally, such venues could provide the opportunity for youth to learn more about the triggers and outcomes associated with depression. Such outcomes might include things like self-medication via substance abuse or recognizing that something as simple as a negative change in academic performance might be indicative of a larger problem. Third, develop mechanisms to reduce the stigma associated with identifying and seeking treatment for depression. Approaches to stigma reduction might include describing what happens in therapy, teaching youth and families about the different treatment modalities, and describing culturally relevant and efficacious treatments for depression specifically.

One innovative strategy for engendering trust among African American youth who might be ambivalent about seeking treatment is talking with them about famous African Americans who have publically acknowledged bouts with depression and successful treatment seeking. One resource that The AAKOMA PROJECT team found helpful in this regard was the Web site www.halfofus.com. On this Web site, youth and young adults from diverse backgrounds describe their experiences with depression, mood disorder and suicide, other mental illnesses, and their steps toward treatment seeking. Our research team has found it quite helpful to illustrate the symptoms of depression by comparing and contrasting celebrity behavior preclinical and postclinical treatment for issues like depression and substance abuse.

A recurrent theme across both the adult and the youth focus groups associated with The AAKOMA PROJECT was the idea that African American youth do not experience depression and instead they “have issues” or experience periods of “just going through a lot.” Indeed although approximately half of the sample youth in this study met criteria for depression, based on the Children’s Depression Rating Scale (CDRS), many of our youth participants did not readily acknowledge that they themselves were depressed. The youth participants in our study described their own experiences of depression in very nonclinical terms using descriptors like an occasional period of feeling “sleepy,” “angry a lot,” or feeling that something is wrong yet being unable to identify the feeling or give it a label. This particular phenomenon is of great consequence to clinicians as it may help to explain the nonfinancial barriers that contribute to the unmet need in African American youth. Indeed, the characterization of depression as a mild experience of somatic complaints and changes in general behavior makes it much less likely that a youth or his or her family might seek depression treatment of their own volition. This finding is supported by work that suggests that among African American and Black Caribbean youth, many of the youth reporting an experience of multiple symptoms of depression and other mood disorders, had not previously been diagnosed with either (Joe et al., 2009).

One mechanism for addressing the manner in which youth label their depression is to engage youth using their terminology. In other words, instead of labeling depression in the initial clinical sessions, it might be more helpful to allow for discussion about how they would describe their concerns. Such an approach might include talking with youth and their parents about specific goals for working together and how the clinician can serve as an expert consultant to the teen to support him or her in managing whatever concerns are deemed primary (as opposed to focusing on treating the depression per se). This might be yet another mechanism for reducing the stigma associated with mental health treatment seeking and empowering the adolescent patient to engage in his or her own treatment.

As for the teen’s recommendations for engaging youth in depression treatment, there is precedence for the utility of “drop-in” clinics for adolescent mental health concerns (Gilleard & Lobo, 1998; Natasha, Min Ju, Amy, & Jillian, 2008). We believe that community clinicians might consider collaborating with churches, community-based agencies, or adolescent-focused programs to provide a limited number of weekly “drop-in” appointments. This approach might also help to reduce stigma as it is a nontraditional approach to treatment provision and might feel less clinical to youth.

Finally, the gender difference in the experience of depression merits clinical attention. As it relates to gender differences in depression manifestation, it has been reported that the adults in African American youth’s lives may not readily distinguish depression from disruptive behavioral problems. This notion of lack of differentiation was echoed by our study youth, who suggested that African American depressed boys are more likely to negatively externalize their depressed feelings than girls. Given these beliefs, we recommend the following strategies for clinicians to support them in distinguishing between depression and negative acting out related to behavioral disorders. First, for school mental health professionals, our findings speak to the importance of regular depression screenings for youth as soon as negative, acting-out behaviors are noticed. For community clinicians, we recommend longer, more in-depth depression screenings for youth referred from juvenile justice or other punitive types of programs. Finally, for African American youth of both genders, it might be helpful for depression screenings to be offered as a part of annual exams by physicians and allied health professionals, with strategies for directly linking youth and families to mental health practitioners if depression is suspected (H.K. Poole, personal communication, November 3, 2009).