This study had two purposes. The first purpose was to test a qualitative research methodology for use among children. On reviewing the literature we could find no record of the use of the combination of methods described here among children and adolescents. We did find one study that used free listing in combination with focused group interviews to study attitudes about reproductive health in teenage boys in the United States (Marcell et. al, 2003
), but we could not find studies that used free listing among children and adolescents in developing countries. Yet this approach appeared to work well among children aged 10-17 years of age in this particular population, as well as with their caretakers. The interviewing methods were well accepted by the respondents in that interviewers reported little difficulty in engaging respondents. Records of child interviews using this methodology were of comparable detail and length to those among adults; both the caretakers interviewed in this study and in previous studies of adults using the same approach (Bolton, 2001
; Wilk and Bolton, 2002
Our second purpose was to explore local concepts of mental illness. This study identified seven psychosocial syndromes among children aged 10-17 years living in displaced persons camps in northern Uganda. Of these, we explored five syndromes in detail because these five appeared to be common, severe, reflective of mental health problems (rather than appropriate responses to a difficult situation) and potentially treatable using resources available to existing service providers. The types of problems revealed are not surprising in this population of children exposed to displacement, loss due to war as well and the day-to-day adversity that characterizes life in the overcrowded IDP camps of Gulu District.. In Western terms, these five syndromes can be divided into two broad categories: anxiety/depression-like disorders (two tam, kumu and par which have more depression-like features, and ma lwor which has more anxiety features) and conduct problems (kwo maraco/gin lugero). Many of the symptoms of these local syndromes are identical to those of Western disorders of mood, anxiety and conduct problems. For mood disorders, symptoms shared with Western diagnoses included depressed mood, diminished interest in activities, fatigue, feelings of worthlessness or excessive guilt, inability to diminished ability to think/concentrate, and recurrent thoughts of death or suicide. For anxiety problems, shared symptoms included increased arousal and restlessness including having a fast heart rate and constantly running around. For conduct problems similar symptoms included aggressive behavior that causes or threatens physical harm to others such as fighting as well as associated symptoms of deceitfulness, using bad language, drinking alcohol and using drugs. Culturally specific symptoms also emerged. For example, “sitting kumu” (sitting while holding one's cheek in their hand) and not greeting people were described as symptoms of the locally derived mood disorder kumu. Not greeting people was also an important sign of both par and ma lwor. In the Acholi culture, to not extend a kind greeting to others you encounter is offensive and an important indicator of psychopathology. Such important local idioms of distress would not be captured without investigating these issues using qualitative methods. Yet these symptoms may well be important manifestations of mental health symptoms. In Western terms, cheek in palm is a likely idiom for sadness and perhaps lack of hope or energy, whereas not greeting people may reflect preoccupation or withdrawal.
Although the locally-described syndromes of two tam, kumu and par are similar, there are significant differences. For example, suicidal ideation or feeling that life is not worth living is a feature of two tam. Par contains the symptom of thinking of suicide, but has more antisocial features such as disobedience, drinking alcohol and not greeting people. Kumu in comparison consists of less severe items, bearing more similarity to dysthymia characterized by persistent depressed mood than to Major Depression.
While mood and anxiety problems emerged as important issues in the study, conduct problems were equally salient. Conduct problems were frequently mentioned in the free list interviews and included sexual violence or high risk of sexual activity (20%), dropping out of school, (15%) being stubborn (15%), rude or spoiled (13%) and fighting (13%). These conduct problems deserve attention in that they also represent risky behaviors. They should also be seen in the context of a larger social breakdown which was vividly described in the free list and key informant interviews: adults struggling with their own despair, loss and subsequent mental health problems as well as alcohol abuse and extreme poverty. As a result, young people in the camp are not monitored closely and there is a great deal of opportunity for young people to be involved in more negative survival strategies such as trading sex for food, shelter or protection as well as antisocial behavior representing the other side of this exploitative equation such as sexual violence.
Our intent subsequent to this study was to use the resulting data to develop and test instruments to quantitatively assess the problems identified here. While there are many similarities between the local syndromes that emerged from this study and Western mood, anxiety and conduct disorders, we also found enough differences in terms of how symptoms are expressed to suggest that simply translating existing Western instruments to assess emotional and behavioral problems in this population would be insufficient. As a result, we later used the qualitative data to develop and validate a locally-relevant scale of emotional and behavioral problems reflecting these five syndromes. This same instrument was eventually used to screen young people into a trial of mental health interventions for the problems that emerged from the qualitative study. A description of these subsequent activities, culminating in an effectiveness study, are available from the authors on request.