The local terms identified by participants reveal a rich understanding of emotional and behavioral problems common among children in rural Rwanda. While considered particularly pervasive among HIV/AIDS-affected youth, almost all of the mental health problems reported were described as relevant to other populations of Rwandan youth. Of the local syndromes our study explored, umushiha (persistent irritability/anger) emerged as the most heavily influenced by repeated experiences of loss and stigma due to HIV/AIDS.
While these syndromes are specific to the cultural context of this rural region of Rwanda, many share similarities with disorders outlined by other diagnostic systems of mental illness. For example, several core symptoms found in agahinda kenshi (persistent sorrow) and kwiheba (severe hopelessness) are captured by DSM-IV criteria for dysthymia [300.4] (e.g., poor concentration, feelings of hopelessness) and major depressive disorder [296.3] (e.g., depressed mood, recurrent thoughts of suicide, somatic complaints without medical cause). The syndromes guhangayika (anxiety/depression) and ihahamuka (trauma/anxiety) share similarities with DSM-IV criteria of generalized anxiety disorder [300.02] (e.g., excessive anxiety and worry, constant fear). Ihahamuka also bears some resemblance to post-traumatic stress disorder [309.81], whose symptoms include intense fear, irritability, hypervigilance, feelings of detachment, and recurrent distressing recollections of a traumatic event.
Uburara (bad/delinquent behavior) shares some similarities with Western conduct (CD [312.89]) and oppositional defiant disorders (ODD [313.81]) (e.g. rule breaking behavior, refusing to comply with requests or rules of adults), but describes manifestations of behavioral problems shaped by the cultural context in Rwanda. For instance, “roaming about without purpose” may be typical of teens in wealthier countries, but was seen as problematic in the Rwandan context.
As indicated earlier, umushiha
(persistent irritability/anger) appears to be the most specific to the context of HIV/AIDS and to the culture of our study population. While the DSM and ICD systems discuss irritability as an indicator of mood disorders (rather than as a discrete syndrome), our research on umushiha
supports recent international literature in favor of categorizing irritability as its own disorder (Donovan, et al., 2003
; Safer, 2009
; Snaith, Constantopoulos, Jardine, & McGuffin, 1978
; Snaith & Taylor, 1985
Our findings echo previous research in Rwanda on mental health problems in adults, but also reveal distinct differences between adult and child expressions of mental health problems. For example, Bolton's study of adult Rwandan genocide survivors (2001) identified many symptoms of agahinda
(a depression-like problem), and a recent study on survivors of collective sexual violence observed ihahamuka
in adult participants (Zraly, et al., In press
). However, while the symptoms outlined by these studies are similar to many of those observed among HIV/AIDS-affected youth, the present study highlighted additional indicators specifically relevant to children and adolescents (e,g, performing poorly in school, and not playing with others). These data have informed our ongoing efforts to select, translate and adapt existing mental health measures for use with Rwandan children and, as in the case of umushiha
, to develop new scales where needed.
These findings are further informative in developing interventions to address mental health problems among HIV/AIDS-affected Rwandan children and adolescents. For instance, syndromes described as resulting from or being exacerbated by HIV-related stigma may be best addressed by group treatment models that deal with isolation, expand peer support networks and build interpersonal and coping skills. In addition, it is important to consider prevention-focused models which identify at-risk HIV/AIDS-affected youth before they develop psychopathology and utilize a strengths-based approach to build resilience. As access to HIV testing and treatment increases in SSA, preventive programs have the potential to be systematically integrated into routine care of HIV/AIDS-affected families (Bell, et al., 2008
; Biddlecom, Awusabo-Asare, & Bankole, 2009
; Denison, McCauley, Dunnett-Dagg, Lungu, & Sweat, 2009
; Messam, McKay, Kalogerogiannis, Alicea, & Hope Committee Champ Collaborative Board
). Regardless of the specific intervention model, culturally-sensitive prevention and intervention services that address locally-meaningful problems and build on local strengths will likely be more acceptable, sustainable (Bernal, 2006
; Hohmann & Shear, 2002
), and have longer lasting treatment effects (Wiley-Exley, 2007
Some study limitations should be noted. First, the findings presented here are primarily qualitative data. The intention of this study was to lay the groundwork for future quantitative assessments. The diversity of backgrounds, perspectives, and knowledge levels among KIs also raises a question about the expertise of these lay individuals for evaluating syndromes. While several mechanisms were utilized to ensure information quality (e.g. clinician interviews were used to refine information gathered from KIs), one should not interpret our classifications as a formal nosology or diagnostic system, but rather as locally-relevant composites of syndromes and their associated symptoms.
As noted earlier, we adopted a collaborative approach to translation. As such, our translations may differ from versions generated by a single professional translator. In addition, our data indicate significant overlap of symptoms among the six reported syndromes. Numerous studies in Western populations have also found significant comorbidity of mental health problems (de Mesquita & Gilliam, 1994
; Kessler, et al., 2009
; Kessler, Merikangas, & Wang, 2007
). For Western clinicians, symptom overlap between disorders and widespread “true” comorbidity among syndromes contributes to “clouding” of diagnostic differentiation (de Mesquita & Gilliam, 1994
). Further research is needed to determine how much of this overlap is due to sharing of symptoms among two or more syndromes as opposed to comorbidity.
In future stages of this project, we intend to build on these data by exploring protective processes related to resilience in HIV/AIDS-affected youth and families. This data collection will inform the development of locally-appropriate assessment measures and preventive interventions to build on local strengths and reduce risks for common mental health problems in HIV/AIDS-affected children and adolescents.