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In assessing the mental health of HIV/AIDS-affected children and adolescents in Sub-Saharan Africa, researchers often employ mental health measures developed in other settings. However, measures derived from standard Western psychiatric criteria are frequently based on conceptual models of illness or terminology that may or may not be an appropriate for diverse populations. Understanding local perceptions of mental health problems can aid in the selection or creation of appropriate measures. This study used qualitative methodologies (Free Listing [FL], Key Informant [KI] interviews, and Clinician Interviews [C-KIs]) to understand local perceptions of mental health problems facing HIV/AIDS-affected youth in Rwinkwavu, Rwanda. Several syndrome terms were identified by participants: agahinda kenshi, kwiheba, guhangayika, ihahamuka, umushiha and uburara. While these local syndromes share some similarities with Western mood, anxiety, and conduct disorders, they also contain important culture-specific features and gradations of severity. Our findings underscore the importance of understanding local manifestations of mental health syndromes when conducting mental health assessments and when planning interventions for HIV/AIDS-affected children and adolescents in diverse settings.
In Rwanda, the dual vectors of HIV/AIDS and the legacy of the Rwandan genocide of 1994 have had devastating consequences for families (D. N. Smith, 1998; UNAIDS, 2007; UNICEF, 2006). While available data from as early as the mid-1980s show that Rwanda's HIV prevalence has dropped from 12.8% in 1998 to 3% in 2005 (Institut National de la Statistique du Rwanda & U.S.A.: INSR and ORC Macro, 2006), parental death due to AIDS and the aftereffects of the genocide have contributed to Rwanda's having one of Africa's highest rates of orphanhood (Kayirangwa, Hanson, Munyakazi, & Kabeja, 2006; UNGASS, 2008). Though studies have documented that genocide survivors are at increased risk for mental health problems including depression and post-traumatic stress disorder (Bagilishya, 2000; Dyregrov, Gupta, Gjestad, & Mukanoheli, 2000; Pham, Weinstein, & Longman, 2004; UNGASS, 2008; USAID Rwanda, 2004), little research attends to the numerous ways in which HIV and family loss have affected child development and mental health.
Research shows that HIV/AIDS-affected families are at increased risk of conflict, community stigma, threats to educational attainment, economic insecurity (Bauman, et al., 2006; Boris, Thurman, Snider, Spencer, & Brown, 2006; Doku, 2009; Lester, et al., 2006; Murphy, Greenwell, Mouttapa, Brecht, & Schuster, 2006) and that HIV/AIDS-affected children are at higher risk for developing a range of psychosocial problems (Atwine, Cantor-Graae, & Bajunirwe, 2005; Makame, Ani, & Grantham-McGregor, 2002). However, these mental health needs of children often receive little attention as families struggle to address immediate medical concerns and the economic and social consequences of HIV/AIDS (Bachmann & Booysen, 2003; Brouwer, Lok, Wolffers, & Sebagalls, 2000; Nampanya-Serpell; Seeley & Russell). Few programs exist to prevent or treat mental health problems in HIV/AIDS-affected children in Sub-Saharan Africa (SSA) despite the region's high HIV prevalence.
It is critical that researchers and service providers respond to the psychosocial needs of children and families affected by compounded adversity. In order for interventions to achieve maximum effectiveness and sustainability, research must be informed by an understanding of how mental health issues are understood locally. Most studies of HIV/AIDS-affected youth in developing countries use instruments based on mental health concepts developed in other cultures or populations such as those defined in the DSM-IV-TR (American Psychiatric Association, 2000). However, research in a number of African settings has underscored the limitations associated with uncritical applications of such an approach. For instance, Carta et al. (1997) demonstrated good sensitivity but poor specificity in their adaptation of the WHO Self-Reporting Questionnaire (SRQ) for studying of mental disorders in Mali. In Tanzania, Kaaya and colleagues found that, while the Hopkins Symptom Checklist (HSCL) served as a useful screening tool for DSM-IV criteria of depression, additional qualitative research would be necessary to identify and integrate additional symptoms relevant to the local context (Kaaya, et al., 2002).
To improve cross-cultural assessment of mental health constructs, researchers have increasingly used qualitative methods to understand local expressions of emotional and behavioral distress. Patel, Simunyu, and Gwanzura (1997) used ethnographic studies to develop a psychometrically strong instrument, the Shona Symptom Questionnaire, for use in epidemiological and clinical research in Zimbabwe. Bolton (2001) used qualitative data on local expressions of grief and depression problems to validate the depression subscales of the HSCL for use among adults in post-genocide Rwanda. Betancourt and colleagues (2009) used a similar approach to construct a scale of locally-recognized depression-like problems that was employed in a trial of interventions for war-affected adolescents in Northern Uganda (Betancourt & Bolton, 2005; Bolton, et al., 2007). Such mixed-methods practices have yet to be applied to the situation of HIV/AIDS-affected children and adolescents in SSA.
The present study sought to identify and explore common mental health problems and their indicators or symptoms among HIV/AIDS-affected youth in Rwanda. While previous research has identified locally relevant terms for some mental health problems among Rwandan adults (Bolton, 2001; Hagengimana & Hinton, 2009; Zraly, Betancourt, & Rubin-Smith, In press), such issues have not been investigated in children and adolescents. To this end, exploration of common mental health problems in Rwandan children is both lacking and warranted, and of particular importance to HIV/AIDS-affected children.
This study resulted from collaboration between the Harvard School of Public Health (HSPH), Partners In Health (PIH) and Inshuti Mu Buzima, PIH's sister organization in Rwanda. Interviews were conducted in the Kinyarwanda language by Rwandan interviewers in December 2007. Interviews to investigate one additional local mental health problem (ihahamuka) took place in February 2009. Staff members were trained in interviewing techniques and research ethics and received supervision from study authors. Qualitative methods comprised Free Listing (FL), Key Informant (KI) and Clinician Interviews (C-KIs). All study procedures were approved by the Human Subjects Committee of the Harvard School of Public Health and the Rwanda National Ethics Committee. All interviewees provided informed consent (and/or child assent for those under age 18).
FL interviews began with the question: “What are the problems of HIV/AIDS-affected children in this community?” Interviewers probed for as many problems as possible, asking for a brief description of each. As in prior applications of this approach (Betancourt, et al., 2009), interviews were followed by a review of problem names and descriptions for their relevance to issues of thinking, feeling, or relationships. These “problem themes” were regarded as potential entry points for exploring mental health and psychosocial issues in children.
“Problem themes” were further explored via in-depth community key informant (KI) interviews. For example, the problem of agahinda kenshi (sorrow or sadness) was mentioned by several participants during FL interviews. This problem term was then selected for further probing whereby KIs were asked open-ended questions such as, “Tell me more about the problem of agahinda kenshi among HIV/AIDS-affected children in this community”. A series of probes were used to explore the term more fully; examples included: “How does a child with agahinda kenshi feel?” “How does a child with agahinda kenshi behave?” “How does a child with agahinda kenshi think about themselves or others?” Probing sought to identify commonly-recognized “cover terms” that described conditions where several distinct symptoms co-occurred. When similar constellations of symptoms were defined by discrepant cover terms, interviewers probed to understand how these terms were similar or different. When described as interchangeable, the most commonly-used cover term was retained. When local syndrome terms were seen as related, but not the same, we investigated how the two syndrome terms differed.
To ensure quality control, all KI interviewing was done in pairs, with one person serving as lead interviewer and the second person serving as a note taker. To arrive at accurate translations, all Kinyarwanda syndrome terms were projected on a screen and discussed by both the authors and the nine local RAs. English translations were not finalized until a consensus was reached.
C-KIs were conducted to review the findings of the lay KI interviews and to refine distinctions between syndromes from a clinical perspective. Probing during C-KIs focused on identifying the most distinctive symptoms associated with each cover term and determining where comorbidity among syndromes may have led to incorrect symptom categorization.
Thirty-one adults (42% female) and forty-three children ages 10–17 (47% female) living in seven villages in southeastern Rwanda's southern Kayonza District participated in free list (FL) interviews. For the FL exercise, these study participants were selected based on the principle of “maximum variation” (Guba & Lincoln, 1989) to capture a range of age and gender, as well as HIV serostatus. Most HIV/AIDS-affected individuals were sampled from the waiting area of the Rwinkwavu District Hospital infectious disease clinic.
FL informants were asked to identify local individuals perceived as particularly knowledgeable about psychosocial issues facing HIV/AIDS-affected children and adolescents. These potential key informants (KIs) were then approached by study interviewers. Additional KIs were identified via snowball sampling: KIs who completed an interview recommended others who were also knowledgeable about the relevant topics. In total, 36 adults (31% female) and 38 children (34% female) participated in the 2007 KI interviews; 44 additional participants (41% female) were interviewed in 2009. C-KIs (N=10) were interviewed in 2010, and comprised Rwandan mental health professionals, pediatricians and social work staff (60% women) from two different sites (PIH Rwinkwavu and FXB International in Kigali).
All analyses of FL interviews were conducted by local staff in Kinyarwanda according to Thematic Content Analysis (TCA) (C. P. Smith, 1992). FL interview responses were sorted by theme and reviewed for conceptually identical responses. Such items were combined and the number of responses tallied along with the corresponding Kinyarwanda terms. When numerous descriptors were used, the most representative terms were selected (See results in Table 1).
TCA of KI interviews focused on local syndromes described by multiple KIs as “common” among HIV/AIDS-affected youth. The research team counted the number of times each symptom was mentioned in association with its corresponding syndrome (counting only the first occurrence of a symptom if mentioned more than once by a KI). In this way a composite description of each syndrome was developed.
TCA of clinician data was cross-referenced with the KI findings. Items with low clinician agreement (less than 50% of clinicians) were dropped from descriptions unless consultation with our Rwandan study team psychologist (Mr. Fayida) indicated that a symptom should be retained for clinical reasons. CIs also reviewed the syndromes for their relationship to true psychopathology rather than to contextual factors. Additionally, they refined and clarified the language used to describe cover terms and symptoms in order to best capture psychopathology in children and adolescents (versus fleeting emotional states). Although the focus of initial data collection was on children affected by HIV/AIDS, clinicians indicated that the syndrome terms identified have a broader applicability to Rwandan children in general.
The FL exercise revealed a wide range of problems faced by HIV/AIDS-affected children in rural Rwanda, including lack of school fees, hunger, poverty, loneliness, loss of hope, and aggressive behavior. A number of “problem themes” related to mental health arose immediately; for instance, agahinda (sadness or sorrow) was mentioned as a problem by 14% of FL participants.
Local lay and clinician KIs demonstrated considerable agreement over commonly-used local syndrome terms and their associated symptoms. Analysis of the combined lay and clinician KI interview data resulted in the identification of six local syndrome terms (problem clusters) and their associated symptoms: guhangayika, agahinda kenshi, kwiheba, ihahamuka, uburara, and umushiha.
Clinician KIs indicated that a “natural” progression of the first three syndromes can be observed in children, such that a mild case of guhangayika, when left untreated, may develop into agahinda kenshi, which can eventually lead to kwiheba. Guhangayika was described as a state of constant worry or “stress” that comprises both anxiety-like and depression-like symptoms. Both lay and clinician KIs (42% and 80%, respectively) identified “thinking too much”-- frequent rumination without being able to arrive at a solution to problems-- as one of the most distinguishing features of guhangayika. KIs reported that children with guhangayika are never at ease, don't talk or play with others, cry without reason and isolate themselves (See results in Table 2).
Agahinda kenshi, was generally considered more severe than guhangayika, and was described as a problem of “persistent sadness or sorrow” by more than 80% of lay and clinician KIs. Key features of agahinda kenshi include loneliness, unhappiness, crying and low morale. Agahinda kenshi was described as common among children and families affected by HIV/AIDS, loss, or situations of adversity. KIs reported that the more severe syndrome kwiheba is often preceded by agahinda kenshi (See results in Table 3).
The majority of lay and clinician KIs (88% and 90% respectively) associated kwiheba with severe hopelessness. Eighty percent of C-KIs identified suicidal ideation as a crucial indicator of kwiheba. Symptoms such as “wishing to die” and “feeling that life is meaningless” were described as distinguishing features. The large majority of C-KIs reported that children with kwiheba feel pessimistic or hopeless about life and their future prospects, and that they are often uninterested in interacting with peers or adults (See results in Table 4).
KIs described how similar depression-like symptoms may also be observed in children suffering from ihahamuka, a distinct problem cluster that emerges following a traumatic event. Respondents identified ihahamuka as a state of shock commonly attributed to acute events such as genocide-related violence or the disclosure of HIV-positive status. Ihahamuka was frequently associated with “losing one's mind” or “behaving like a mad person” (35% of lay KIs; 70% of clinicians). Anxiety-like symptoms such as “constantly being afraid” and “thinking a lot” were also considered indicators of ihahamuka. Other important indicators included depression-like symptoms including self-hatred, sadness, loneliness, and hopelessness, as well as symptoms such as crying, fighting, and screaming (See results in Table 5).
Persistent irritability or anger was commonly mentioned to describe umushiha. Ninety percent of clinicians and 49% of lay KIs observed that children with umushiha “talk rudely”; other symptoms included being consistently “annoyed” or “grouchy”, “not appreciating anything”, “quarreling” and “being unkind”. The origins of umushiha were linked to stigma and community rejection. Several KIs explained that children who are HIV-positive, or whose caregivers have been affected by HIV/AIDS, must contend with social isolation, mistrust and maltreatment from others. KIs observed that children who experience community rejection can develop intense negative feelings about themselves and others; when internalized, these feelings may lead to umushiha (See results in Table 6).
KIs associated the sixth syndrome, uburara, with bad or delinquent behavior, including being unruly, roaming about (without purpose), and taking drugs. A majority reported that children with uburara “play dangerously” and “roam without purpose”. Uburara in children was also described as associated with high-risk behavior such as fighting or precocious sexual activity (See results in Table 7).
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.
An outstanding team of collaborators made this work possible. We are endlessly grateful to all the local research assistants who carried out these interviews: Morris Munyanah, Kenneth Ruzindana, Mary Tengera, Claire Gasamagera Tuyishime, Theotime Rutaremerara, Yvonne Asiimwe Murebwayire, Françoise Murebwayire, Fredrick Kanyanganzi, and Anatole Manzi. We are also grateful to Partners In Health/Inshuti Mu Buzima for their collaboration and dedication, and to the Peter C. Alderman Foundation, the Harvard University Research Enabling Grants Program and the Julie Henry Family Development Fund for their support of this field research. This publication was also made possible by Grant #1K01MH077246-01A2 from the National Institute of Mental Health and by the François-Xavier Bagnoud Center for Health and Human Rights. Additional thanks go to Jim Yong Kim, Maggie Alegria, Elizabeth Barrera, Glenn Saxe, Brandi Harless, Laura Khan, Pamela Scorza, Sarah Meyers-Ohki, Ryan McBain, Natalie Stahl, Christina Mushashi, Ali Solange Nyirasafari, Jacqueline Umugwaneza and Robert Gakwaya for their input on the project and/or their review of the data.