EXAMINING THE PSYCHOSOCIAL ADJUSTMENT AND SCHOOL PERFORMACE OF UGANDAN CHILDREN WITH HIV/AIDS By Rachelle A. Busman A DISSERTATION Submitted to Michigan State University in partial fulfillment of the requirements for the degree of DOCTOR OF PHILOSOPHY Counseling, Educational Psychology and Special Education 2010 ABSTRACT EXAMINING THE PSYCHOSOCIAL ADJUSTMENT AND SCHOOL PERFORMANCE OF UGANDAN CHILDREN WITH HIV/AIDS By Rachelle A. Busman Human immunodeficiency virus (HIV) has had a devastating impact on the children of Africa. In Uganda, over 100,000 children are infected, mostly through vertical transmission of the disease from their mother. With recent improvements in medical treatment, children are now surviving longer and reaching school age, but there is limited research examining the quality of life of these children. The current study investigated the psychosocial adjustment and school achievement of 60 Ugandan children with vertically transmitted HIV. Specific attention was given to the caregiving context and illness parameters surrounding this at-risk group of children. Results showed that being cared for by a grandmother may be a protective factor related to fewer externalizing behaviors. Cognitive functioning may also be protective, with higher scores associated with increased school performance. These findings are a first step toward understanding the protective factors associated with psychosocial adjustment and better school performance. Furthermore, these findings can serve as a basis for developing interventions that promote a better quality of life in children afflicted with HIV/AIDS in Uganda. ACKNOWLEDGEMENTS I would like to acknowledge several individuals who have been instrumental in my development as a researcher and who have played an integral role in facilitating the completion of my dissertation. First, I would like to thank my advisor Dr. Evelyn Oka, who also served as dissertation committee co-chair for her unwavering devotion in the execution of this research project. I would also like to thank Dr. Michael Boivin, committee co-chair, for aiding in the development of this project and making it possible for me to travel to Uganda to collect the data. This project was truly life changing. I am grateful to both of my committee chairs for their guidance and encouragement throughout the entire process. I would also like to thank the members of my dissertation committee, Drs. John Carlson and Jodene Fine for their time, flexibility, careful readings of my writing, and insightful contributions to this project. Appreciation is given to my colleagues in Uganda for their dedication to this project and their willingness to work under less than ideal conditions to complete this work. Finally, I would like to thank my family, and friends for their support and gracious tolerance of the demands associated with graduate education/training and dissertation research. This research project was partially funded by the Michigan State University Predissertation International Travel Fellowship. Additional support was provided by the Leadership Training Grant Fellowship from the U.S. Department of Education, Office of Special Education Programs. iii TABLE OF CONTENTS LIST OF TABLES ………………………………………………………………………. vi LIST OF FIGURES……………………………………………………………………… vii CHAPTER 1 INTRODUCTION……………………………………………………………………....... Resilience in the Face of HIV……………………………………………………. The Purpose of this Study………………………………………………………... Proposal Content………………………………………………………………….. 1 3 5 6 CHAPTER 2 LITERATURE REVIEW………………………………………………………………….. 7 What is HIV?............................................................................................................. 7 Disease Progression……………………………………………………… 8 Measuring Disease Progression………………………………………….. 10 Treatment (HAART Medication)…………………………………………. 10 Developmental Implications……………………..……………………………….. 11 Cognitive Development……………………………………………………. 11 Cross-Cultural Consistency……………………………………………….. 13 Impact of Environment on Cognitive Development……………………… 14 Psychosocial Development……………………………………………….. 14 Resiliency in the face of childhood HIV………………………………………….. 17 Stress and Coping Model for Predicting Psychological Adjustment in HIV-Infected Children……………………………….......... 19 Understanding Psychosocial Adjustment…………………………………………. 23 Psychosocial Adjustment and Caregiving Context………………………... 24 Primary caregiver………………………………………………….. 24 Socioeconomic factors…………………………………………….. 26 Psychosocial Adjustment and Child Variables……………………………. 27 Age ……………………………………………………………….. 27 Gender…………………………………………………………….. 28 Academic Achievement of School Children with HIV/AIDS……………………. 29 Schooling within Uganda…………………………………………………. 31 Addressing the Needs of Children with HIV/AIDS in Uganda…………………… 32 Conclusions……………………………………………………………………….. 33 Research Questions……………………………………………………………….. 36 CHAPTER 3 METHODS………………………………………………………………………………... 39 Research partnering with Child Health Advocacy International: The Larger Study………………………………………………………………….. 39 The Current Study…………………………………………………………………. 40 iv Participants………………………………………………………………… 40 Variables and Instruments………………………………………………... 41 Child Behavior Checklist (CBCL)……………………………………….. 42 Kaufman Assessment Battery for ChildrenSecond Edition…………………………………………………………… 43 Adaption of assessment batter into local languages and test administration…………………………………………………… 45 Socioeconomic Status (SES)…………………………………………….. 45 Disease Progression………………………………………………............ 46 School Performance…………………………………………….... 47 Procedures………………………………………………………………………… 47 CHAPTER 4 RESULTS………………………………………………………………………………… Research Question 1, Caregiving Context………………………………………… Research Question 2, Child Illness Parameters…………………………………… Research Question 3, Psychosocail Adjustment and School Performnace……………………………………………………………….. Research Question 4, Factors Contributing to Psychosocial Adjustment and School Performance…………………………......... Psychosocial Adjustment………………………………………………… School Performance……………………………………………………..... CHAPTER 5 DISCUSSION…………………………………………………………………………….. Research Question 1: Caregiving Context……………………..…………………. Research Question 2: Child Illness Parameters…………………………………… Research Question 3: Psychosocial Adjustment and School Performance……………………………………………………………… Research Question 4: Factors Contributing to Psychosocial Adjustment and School Performance……………………………… Psychosocial Adjustment…………………………………………………. School Performance………………………………………………………. Conclusions……………………………………………………………………….. Future Research…………………………………………………………………… Limitations………………………………………………………………………… 49 49 50 52 54 54 55 57 59 60 62 64 64 65 65 67 68 APPENDICES……………………………………………………………………………. 94 REFERENECES…………………………………………………………………………. 116 v LIST OF TABLES Table 1. Description of KABC-II Subtests Administered………………. 71 Table 2. Demographic Characteristics…………………………………… 73 Table 3. Logistic Regression Predicting Likelihood of being Cared for by Mother……………………………………… 75 Table 4. Means and Standard Deciations of KABC-II scores by Medication Status………..…………………………………. 76 Table 5. Test of Between-Subjects to Assess Psychosocial Adjustment And School Performance by Gender and Age………………….. 78 Table 6. Behavior Concerns by Age and Gender………………………… 79 Table 7. Nominal Regression to Assess Variables Contributing to Externalizing Behaviors………………………………………… 80 Table 8. Nominal Regression to Assess Variables Contributing to Internalizing Behaviors…………………………………………. 81 Table 9. Parameter Estimates of Variables Contributing to School Performance……………………………………………. 82 vi LIST OF FIGURES Figure 1. Stress and Coping Model for Predicting Psychosocial Adjustment in HIV-infected Children………................................... 83 Figure 2. Immunologic Category Definitions Based on the CD4 Count and/or Percentage…………………………………………… 84 Figure 3. Histogram of the Number of Children by Gender and Age……....... 85 Figure 4. Histogram of the Number of Children by Caregiver and Age……… 86 Figure 5. Mean Externalizing Behavior Scores by School Performance and Gender…………………………………………………………. 87 Figure 5.1 Scatter Plot of Externalizing Behaviors by School Performance and Gender………………………………………………………….. 88 Figure 5.2 Boxplot of Externalizing Behaviors by School Performance and Gender………………………………………………………….. 89 Figure 6. Mean Internalizing Behavior Scores by School Performance and Gender…………………………………………..…………….... 90 Figure 6.1 Scatter Plot of Internalizing Behaviors by School Performance and Gender………………………………………………………….. 91 Figure 6.2 Boxplot of Internalizing Behaviors by School Performance and Gender…………………………………………………………... 92 Figure 7. Results: Connecting Caregiving Context, Child Illness Paramenters and Child Outcomes………………………………………………… 93 vii CHAPTER 1 Introduction Every day, 1,100 children around the world are infected with human immunodeficiency virus (HIV), most as a result of mother-to-child transmission (MTCT) of the virus (United Nations Program on HIV/AIDS (UNAIDS), 2007). In 2007 alone, an estimated 420,000 children worldwide were newly infected almost exclusively through MTCT (UNICEF, 2008). Despite the increasing availability of medical interventions to decrease the incidence of MTCT, UNAIDS found the total number of children living with HIV had reached 2.5 million in 2007, 1 million more than was estimated in 2005. Children now make up approximately 7.5% of the 33.2 million people worldwide living with HIV/AIDS (UNAIDS, 2007). Many of these cases are in sub-Saharan Africa where the problem is compounded by the lack of resources and the presence of many other life-threatening diseases. In fact, this region of the world is responsible for 63% of the world’s HIV/AIDS cases, although only 11% of the population of the world resides there (Bing & Cheng, 2008). The percentages of people with HIV/AIDS vary across the different countries that make up Sub-Saharan Africa. In urban areas of Sub-Saharan Africa rates of HIV/AIDS can be as high as 33% where 1 in 3 individuals are infected (Bing & Cheng, 2008). Although this is the extreme, many countries including Botswana, Cameroon, Lesotho, and Swaziland, Namibia, South Africa, Zambia and Zimbabwe, in sub-Saharan Africa have a HIV prevalence rate of more than 14% or approximately 1 in 7 individuals (Hodge, 2008). In particular, HIV/AIDS has had a widespread impact on the children of Uganda, where about 1 million children are orphaned and a new child is orphaned every 14 seconds due to the AIDS epidemic (Ronald & Sande, 2005). Furthermore, over 100,000 children in Uganda are infected with HIV/AIDS (UNAIDS, 2007). There is no known cure for the virus, and being 1 infected means increased medical needs and decreased life-span. Thus, there is a need for research in this region of the world hardest hit by the epidemic, and the least equipped economically to take on the challenge. Fortunately, there are ways that children are beginning to receive care. The devastating AIDS epidemic is receiving global attention and support, which has led to better pharmacological treatments that are implemented early-on in conjunction with other vital care addressing nutrition. The Ugandan government has been responsive to the epidemic by making the problem a priority and allowing for the implementation of new medical interventions and public campaigns to curb the devastation (Kirumira, 2008; Ruzindaza, 2001). Within Uganda, non-governmental organizations (NGOs) such as Child Health Advocacy International (CAI) have pioneered social programs targeted at helping to improve the lives of children and families living with HIV/AIDS. NGOs such as this have been instrumental in providing care around the world and delivering more aid to developing regions than all United Nations organizations combined (Chaplowe & Engo-Tjega, 2008). These new interventions have been successful at identifying children with the virus and prolonging life, but much more is needed to understand and ultimately improve the quality of life of children living with HIV/AIDS. A Luganda Proverb from a tribe within Ugandan, “Akakyama anamera tekagololekeka”, is translated as, “That which is bent at the outset of its growth is almost impossible to straighten at the later age” (Kilbride & Kilbride, 1990). This proverb aptly describes the harmful effects of HIV/AIDS on the lives of children infected at birth. The developmental effects can be seen in children’s cognitive ability and psychosocial adjustment. Children may exhibit global cognitive impairments or specific deficits in attention, and/or visual-spatial functioning (Smith et al., 2 2006). Numerous studies have reported the psychosocial consequences suffered by children diagnosed with HIV including externalizing and internalizing problems such as major depression, attention concerns, and anxiety disorders (Bachanas et al. 2001; Franklin, Lim & Havens, 2007; Misdrahi, et al., 2004). However, there has recently been a shift in the literature from a focus on cognitive and emotional dysfunction exhibited by children infected with HIV, to a focus on the positive outcomes demonstrated by many of these children. For example, children with HIV/AIDS have been found to exhibit normal cognitive functioning if they do not have an AIDS-defining illness such as an opportunistic infection, a disease affecting the central and peripheral nervous system, malignancies, and/or wasting syndrome (Smith et al., 2006) or if they do not experience high environmental stress (Hochhauser et al., 2008). Although children with HIV can exhibit levels of maladjustment that are elevated relative to a non-infected population, the majority of these children do not. In a study by Bachanas (2001), 75% of the infected children did not show signs of externalizing or internalizing problems suggesting an emotional resiliency despite being born with HIV/AIDS. In addition to cognitive and psychosocial resiliency, some children are also demonstrating academic success, being able to attend school and benefit from education in spite of the many barriers related to HIV/AIDS. Further research is needed to better understand the characteristics of children who face HIV/AIDS. Resilience in the face of HIV Resilience refers to an individual’s ability to recover from, adapt, and remain strong in the face of adversity (Boyden & Mann, 2005, p. 6). Focusing on the resiliency of children amidst diverse risks and life circumstances is beneficial because it can lead to and inform action (Ungar, 2008). However, there is limited information guiding the conceptualization of risk and resiliency within resource poor regions of the world dealing with a chronic illness such as HIV. 3 Liebenberg and Ungar (2008) point out that the challenge of resilience researchers is that positive outcomes vary according to context and culture. This study addresses the need for more research within different cultural contexts to understand the factors associated with psychosocial adjustment. To better understand the response to HIV in particular cultural contexts, a model of stress and coping has been useful in conceptualizing psychological adjustment in children with HIV and in identifying factors that may buffer the negative impact of the disease (Bachanas, et al., 2001). The model includes key ecological factors that contribute to the child’s adjustment including: illness parameters, caregiver characteristics, demographic parameters, and child characteristics (See Figure 1). Although this model has not been used in Sub-Saharan Africa it can serve as a guide to better understand children inflicted with HIV around the world and to investigate the factors that contribute to psychosocial adjustment. Psychosocial adjustment is a multifaceted construct that refers to an individual’s mental health. According to the U.S. Surgeon General (U.S. Department of Health and Human Services, 1999) mental health can be thought of on a continuum. On one end of the continuum is mental health defined as “a state of successful performance of mental function, resulting in productive activities, fulfilling relationships with other people, and the ability to adapt to change and to cope with adversity. Mental health is indispensable to personal well-being, family and interpersonal relationships, and contribution to community or society…” (p.4). At the other end of the continuum is mental illness or maladjustment, characterized by, “alterations in thinking, mood, or behavior (or some combination thereof) associated with distress and/or impaired functioning…” (p.5). Psychosocial adjustment has been used to describe the adaptive functioning of individuals. 4 A person would be well adjusted if he or she demonstrated positive social skills, normal psychological functioning, and was able to adaptively meet the demands of the environment (Achenbach, et al., 2008). One way to conceptualize the psychosocial adjustment of children is in terms of the presence or absence of internalizing and externalizing behavioral problems. Internalizing disorders reflect “problems within the self, such as anxiety, depression, somatic complaints without know medical cause, and withdrawal from social contacts” (Achenbach & Rescorla, 2001, p.93). Externalizing behaviors on the other hand, involve conflicts with others and violations of expected behavior (Achenbach & Rescorla, 2001). This is a helpful way to identify children at risk for psychosocial maladjustment, but can be a narrow approach to mental health when examined in isolation. The stress and coping model provides a way of understanding internalizing and externalizing behaviors in context, in relation to children’s unique environmental circumstances and characteristics. It illustrates how the caregiver and the socioeconomic context in which children live play an important role in their adjustment. Children’s physical and psychological characteristics, such as their disease state and cognitive abilities, can also play a role in the development of psychosocial adjustment. There are limited data on how children’s psychosocial development within the resource poor region of Uganda are affected by the caregiving context and their psychological and physical functioning signaling the need for more research in this area. The Purpose of this Study The purpose of this study is to examine the psychosocial adjustment and education of Ugandan school children living with HIV/AIDS in relation to the social and cultural contextual factors that promote their resiliency. Having HIV/AIDS is associated with a plethora of negative outcomes, thus, it is important to identify the protective factors associated with 5 resiliency in the face of HIV. This study seeks to explore some of these protective factors related to positive developmental outcomes, guided by a model of stress and coping for children with HIV/AIDS. Although appropriate and relevant, the model has not been applied to a resource poor region, where the epidemic of HIV has had far reaching effects. Furthermore, the focus on positive outcomes and resiliency promotion is unique within the literature from resource poor regions that tend to focus on pathology and identifying dysfunction. These data can be used to identify the kinds of internalizing and externalizing behavior problems that children with HIV/AIDS experience and identify the characteristics of children who show resilience to the devastating disease in a resource poor region of Sub-Saharan Africa. Furthermore, these data can inform the development of interventions that promote the factors that contribute to resiliency. The current research seeks to: (a) to explore the caregiving context and illness parameters of children with vertically transmitted HIV/AIDS within Uganda and (b) to identify the factors that may be linked to psychosocial functioning, and school performance of these children within their unique context. 6 CHAPTER 2 Literature Review This literature review aims to: (1) Provide a definition of HIV, and describe how it progresses to more advanced stages, (2) Discuss the developmental implications associated with HIV including cognitive factors and psychosocial adjustment; (3) Provide a theoretical framework for understanding the psychosocial adjustment of HIV infected children; (4) Examine the research on factors related to the psychosocial adjustment of children with HIV; (5) Discuss the academic implications for school age children with HIV/AIDS in Uganda. What is HIV? Being “HIV positive” indicates infection with the human immunodeficiency virus, regardless of the overt physical manifestations of disease. The virus attacks the immune system, mainly targeting the Cluster of Differentiation 4 (CD4) receptor positive cells such as CD4+ T lymphocyte (T helper cells) resulting in their eventual destruction through various mechanisms. Through this destruction the immune system is compromised, making the infected person highly susceptible to a variety of opportunistic diseases of the lungs, mouth, liver, brain, colon, genitals, and eyes (Mangione, Landau, & Pryor, 1998). An individual is classified as having AIDS when their blood reveals T helper cells/uL below 200 and/or develop an AIDS-defining illness such as an opportunistic infection, a disease affecting the central nervous system, malignancies, and/or wasting syndrome (Castro et al., 1993). Diagnosing HIV/AIDS in children is more complex than in adults. HIV infection in children is characterized by a latency period in which the virus incubates. This period of time in which the child is asymptomatic may be shorter than in adults, however that is not always the case (Gershon, Hotez, & Katz, 2004). The CDC laid out guidelines for diagnosing children by 7 immunologic category based on the CD4 count and/or percentage. The categories are: No evidence of suppression, evidence of moderate suppression, and severe suppression. Placement into each category is also dependent on age, groups being: children less than 1 year, 1-5 years, and 6-12 years (See Figure 2). There are three modes by which HIV is typically transmitted to children: perinatally from an infected mother, exposure to infected blood, and via unprotected sex with an infected person (Landau & Pryor, 1995). Nearly 90 percent of children acquire HIV through perinatal transmission (Speigel & Bonwit, 2002). Such transmission may occur in utero, intrapartum, or postnatally through breast feeding (John & Kreiss, 1996). Once infected there are two general patterns of disease progression in children. Approximately 20% develop serious disease in the first year of life with most dying by age 4, while the remaining 80% develop a slower progression of disease and do not experience serious consequences of AIDS until school age or adolescence (NIAID, 2004). The inevitable result of HIV infection is the profound immunosuppression that leaves children vulnerable to infections and neoplasms (Gershon, Hotez, & Katz, 2004). Furthermore, HIV infected children are frequently delayed in reaching important milestones in motor skills and mental development and many children develop neurological problems such as difficulty walking, poor school performance, seizures, and other symptoms of HIV encephalopathy (NIAID, 2004). Disease Progression Disease progression in children is complex with no clear course of the disease. For example, not all children exposed to HIV contract it and for those who do become infected, it is unclear how quickly the disease will compromise the immune system or how one’s cognitive, and psychosocial functioning will be affected (Little et al. 2007). The lack of a systematic 8 pattern of disease progression once infected makes it difficult to predict the needs and appropriate interventions and supports. An understanding of disease progression and mortality of children with vertically transmitted HIV is vital in developing effective treatments. Unfortunately there is limited information that can speak to this, with the least amount of information in resource poor settings even though this is where the most cases of HIV/AIDS are found (Little et al., 2007). The understanding of disease progression for children with vertically transmitted HIV is in large part based on European studies. The European Collaborative Study (2001) has contributed a great deal of knowledge about survival rates of children living with HIV and impact of treatment on survival. The study followed 170 infants born between 1984 and 1999 who were identified as HIV positive as infants. Of those infants more than 15% progressed to category C or death by the age of 1 year. By 10 years of age 50% had reached the same fate (The European Collaborative Study, 2001). Other studies have reported similar results in untreated populations in which 20% of children with vertically transmitted HIV develop AIDS or die by their first birthday and 40% in advanced stages by age 6 (Gray, McIntyre, & Newell, 2000). One of the factors that seems to be correlated with a child’s disease progression and death is the death of the child’s mother. In southwest Uganda, child mortality risk was higher for children with mothers who died than for those with surviving mothers. This protective role of mothers was found for both children with and without vertically transmitted HIV. For those children whose mothers have died and have HIV, there is a greater risk of childhood mortality (Nakiyingi, et al., 2003). In fact pediatric HIV infection results in a mortality rate four times greater than that of the uninfected population by age 2 (Little et al., 2007). However, more research is needed to understand how the psychosocial adjustment and school performance of surviving children is affected. 9 Measuring Disease Progression As seen from longitudinal studies, age is not an accurate predictor of mortality. Thus, other methods for measuring disease progression need to be used in order to get a clear picture of the impact the virus has on the child with vertically transmitted HIV. Research in this area supports the use of two different measures as predictors of mortality in developed countries as well as Sub-Saharan Africa: CD4 cell count and Viral Load. In Malawi 155 children with vertically transmitted HIV were followed from birth to understand the relationship between CD4 cell count, viral load and mortality. Researchers discovered that if the child lived past his/her first birthday, viral load or CD4 cell percentage at any age could be directly predictive of future survival (Taha et al., 2000; Rouet et al, 2003). Thus, these measures are accurate and useful indicators of disease progression in school age children. Disease progression is important to monitor because of the implications for drug therapy. When children’s disease progresses to a certain level, medications are prescribed to slow the advancement of HIV into AIDS (Rouet et al., 2003). Treatment (HAART medication) Although a cure for HIV/AIDS remains elusive, continued advances in treatments including Highly Active Antiretroviral Therapy (HAART) have given new hope to those suffering from the virus. HAART has been found to slow the progression of HIV to AIDS and decrease mortality in HIV infected children and adolescents (Patel et al., 2008). In fact, children born after 1994 who were given treatment earlier and more intensively then children born before that time, showed a slowed pattern of disease progression (Gray et al., 2000). Furthermore, HAART reduces the incidence of infections and hospitalizations and some organ-specific complications of HIV (Puthanakit et al., 2007). Within Sub-Saharan Africa HAART has been 10 correlated with increased neurocognitive performance of individuals with HIV suggesting that medication should be provided for patients with HIV associated cognitive impairment (Sacktor et al., 2006). In Uganda where 31% of adults with HIV exhibit dementia, HAART medications were associated with improved performance on a test of executive function. However, the same medication was also associated with peripheral neurotoxicity suggesting the need for a less toxic therapy (Sacktor et al., 2009). Less, however, is known about the impact of treatment on the cognitive functioning of children. The increasing availability of HAART along with the ability to treat associated infections, has made improved long-term survival a reality for many children with HIV/AIDS. These children, however, are now entering their school years and are exhibiting a higher incidence of neurological abnormalities than their peers (Wachsler-Felder & Golden, 2002). Given these neurologic and cognitive deficits, continued research is needed to identify the deficits and protective factors that can ensure a new generation of cognitively resilient survivors. Developmental Implications Cognitive Development Children with HIV are at increased risk for developmental disabilities (Speigel & Bonwit, 2002). This is especially true for children infected via mother-to-child-transmission (MTCT), given that their central nervous systems are not fully developed when they contract the virus. Depending on the severity and progression of central nervous system involvement, children with HIV may present with impairments that are diffuse and pervasive, or impairments that are specific in nature (Armstrong, Seidel, & Swales, 1993; Knight, Mellings, Levenson, & Arpadi, 2000). Therefore, when assessing the cognitive functioning of children with HIV, it is imperative to examine both global (e.g., intelligence quotient) and specific (e.g., processing 11 speed, visual-spatial) domains of functioning. In terms of language development, children with HIV tend to have difficulty with expressive language, although problems with both expressive and receptive language abilities may be present (Woodrich, Swerdlik, Chenneville, & Landau, 1999). Affected children may have decreased spontaneous and responsive vocalizations (Wachsler-Felder & Golden, 2002). More generalized language impairments center on limited verbal, emotional, and motor expression. In general, pediatric HIV compromises the acquisition of language and development of milestones. In school this may translate into the need for speech and language therapy in order to participate in and benefit from the educational setting (Papola, Alvarex, & Cohen, 1994). Further investigation is needed to identify consistent impairments that should be the target of early intervention. Research on the cognitive functioning and academic achievement of school age children with vertically transmitted HIV has produced inconsistent results. Some studies report that by school age, IQ scores of children with HIV are in the low-average range compared to uninfected peers (Speigel & Bonwit, 2002). Papola, Alvarez, and Cohen (1994) found that over half of the school age children that they tested were in the borderline cognitively impaired range of intelligence. Furthermore, children with HIV experiencing neurological impairment and associated cognitive delays are believed to experience continued neurological deterioration into adolescence. Continued deterioration has been exhibited by the children with HIV/AIDS who have lost previously attained motor milestones (Landau & Pryor, 1995). Smith and colleagues (2006) collected data from 569 children across several demographic locations including sites within Massachusetts, New York, Texas, Puerto Rico, and Illinois. These researchers found results consistent with the previous studies reporting that children aged 3-7 years with HIV 12 infection scored significantly lower in all domains of cognitive development. This was only true, however, if the children had also exhibited an AIDS-defining illness. This data suggests that children are only at increased risk for poor cognitive outcomes if they have also had a severe illness associated with advanced stages of AIDS (Smith et al., 2006). By medically treating and preventing rapid disease progression for children with vertically transmitted HIV, school age children may no longer exhibit cognitive deficits. There is still much to be learned about the resilient children with HIV who survive into school age without cognitive complications. Most of all it is important to understand cognitive functioning because of its association with quality of life and ultimately survival. In fact, cognitive impairment can substantially affect survival, with about a three-fold increased risk of death among children who are cognitively impaired (Zickler, 2009). Cross-Cultural Consistency. To understand the cultural and contextual impact of HIV on cognitive development some cross-cultural studies have been conducted. These studies provide important information on the cross-cultural consistency of neurocognitive development of individuals with HIV/AIDS. Similar impairments in abstraction/executive function, information processing speed, and learning have been found in China and the United States (Cysique et al., 2007). Yet in other studies including Nigerians with HIV infection, the patients exhibited a wide variety of neurological manifestations including cognitive impairment, peripheral neuropathy, and lower motor neuron facial palsy (Imam, 2007). This suggests that there are some similarities across cultures, but interestingly there are also differences. These differences in cognitive impairment may be due to other contextual factors and require further investigation. Identifying these contextual factors will allow for the appropriate supports for individuals with HIV/AIDS within 13 each unique cultural context. Impact of Environmental Factors on Cognitive Development The presence of the disease may not automatically lead to negative cognitive outcomes. Other environmental factors may play a role in the expressed cognitive ability of children with HIV/AIDS. Hochhauser and colleagues (2008), tested the hypothesis that children in conditions of high environmental risk would be at greater risk for the cognitive complications related to immunosuppression. They found that children in highly stressful environments are at particular risk for HIV-associated cognitive decline. Highly stressful environments are thought to negatively impact adherence to medication and conversely reduced environmental stressors may be neuroprotective (Hochhauser et al. 2008). Thus it is imperative to examine the cognitive abilities of school age children with HIV, and to do so in light of other environmental and contextual factors. Furthermore, identifying environmental factors that play a role in cognitive development provides a logical place to intervene. Although the ultimate goal is to prevent and eradicate HIV, when a child is infected one must also know how to intervene to prevent associated cognitive impairments through altering relevant and malleable environmental factors. Psychosocial Development Psychosocial adjustment is a multifaceted construct that refers to the mental health, or “a state of successful performance of mental function, resulting in productive activities, fulfilling relationships with other people, and the ability to adapt to change and to cope with adversity...” (U.S. Department of Health and Human Services, p.4, 1999). This construct has been used to understand the adaptive functioning of children. Children with HIV face many psychosocial consequences that are often exacerbated by frequent hospitalizations, poor social support, and poor performance in school. Some of the challenges faced by children with HIV include: the 14 loss of abilities, physical impairments, social rejection and isolation, and the fear of death (Landau & Pryor, 1995). Furthermore, there may be a connection between psychosocial adjustment and cognitive impairments. Carter et al. (2003) found that adults with HIV/AIDS who exhibited depression and medical symptoms also presented with increased cognitive complaints. Children with HIV/AIDS may exhibit this same relationship between depressive symptoms and cognitive deficits, although more research is needed to make this connection. One reason that it is important to understand this relationship is because the unique social stigma related to the disease may also lead to depression. Given that the transmission of HIV is frequently associated with socially taboo behaviors, the disease carries a significant social stigma that evokes fear and discrimination towards these children. In Uganda where there has been an open HIV/AIDS awareness policy for over 20 years, the stigma is still high (Bateganya, Kyomuhendo, Jagwe-Wadda, & Opesen, 2008). Children and families must also deal with issues centering on disclosure of the medical condition, which can further perpetuate discrimination secondary to the disease (Wiener, Battles, & Heilman, 2000). The cognitive, physical and social effects of HIV can contribute to infected children experiencing more subjective distress than uninfected children. This distress can manifest as dysphoria, hopelessness, preoccupation with the illness, and poor body image (Brown, Lourie, & Pao, 2000). These children can be prone to more anxiety and depression than uninfected children. Parents have also reported conduct and hyperactivity problems among infected children. In addition, children with HIV may also suffer from disruption in attention and concentration, and severe social withdrawal (Armstrong, Seidel, & Swales, 1993). In one study looking at the service needs of school-age children with HIV within the Bronx, 42% of children 15 were found to exhibit formal psychiatric diagnoses which included mood disorders (depression and anxiety), attention deficit hyperactivity disorder, and adjustment disorder (Papola, Alvarex, & Cohen, 1994). The authors of this study also found that as children grew older they tended to exhibit more problematic emotions and behaviors (Papola, Alvarex, & Cohen, 1994). However, these findings are not consistent throughout the literature, with many of the discrepancies explained by the population being studied. For example, one study conducted within the United States reported that children with HIV were found to be within normal limits for behavioral concerns when looked at over time, with behavior problems decreasing as the child aged (Franklin et al., 2007). Another study conducted within the United States that used care-giver reports of psychological adjustment concluded that there were no differences between the HIV and control groups with the exception of internalizing behavior problems that were actually exhibited by the control group (Bachanas et al. 2001). Within this study the variables that did make a difference when considering the psychosocial wellbeing of children with HIV/AIDS were stress, age, and coping strategies employed. Similarly, Melllins and colleagues (2003) in their study of 307 children with vertically transmitted HIV from several different geographical locations (Boston, New York, Chicago, San Juan (Puerto Rico), and Houston), did not find a link between HIV status and behavior problems. Demographic location was important in understanding behavioral problems however (Mellins et al., 2003). This finding highlights the need to consider behavior of children with HIV within the geographical context. As evidence of the emotional impact of HIV on the Ugandan child, a study of Ugandan AIDS orphans in a rural district had higher levels of anxiety, depression, and anger than their non-orphan counterparts. Symptoms exhibited by the AIDS orphans that were indicative of clinical depressive disorder included: vegetative symptoms, feelings of hopelessness, and 16 suicidal ideation (Atwine, Cantor-Graae, & Bajunirwe, 2005). Resiliency in the face of childhood HIV The sociocultural context provides the framework for how children learn to think, speak, and behave. Thus, psychological adjustment originates through interpersonal interaction (Boyden & Mann, 2005). Boys’ and girls’ development can also be affected by the negative interactions that they have with their environment. Children’s ability to recover in spite of these negative life circumstances has been described as “resiliency.” The term resiliency was coined in the health sciences from applied physics and engineering where it was used to simply describe the ability of materials to bounce back from stress to resume original shape and functioning. Applied in psychology it is understood to indicate an individual’s ability to recover from, adapt, and remain strong in the face of adversity (Boyden & Mann, 2005, p. 6). Resiliency is a concept that changes the focus from dysfunction and disorder to a host of other contextual variables including exposure to stressful environments, individual characteristics, and social processes associated with psychosocial development (Ungar, 2008). Joseph (1994) eloquently described resilience as, “ the glue that keeps us functioning when we are confronted with life’s misfortunes or challenges. It is the attitudes, coping behaviors, and personal strength that you see in people who manage adversity and adjust well to the changes demanded of them by their life circumstances. Resilience is the ability to bounce back from a bad or difficult situation (p. 25).” Resiliency is thought of in terms of risk and protective factors. Risk refers to the variables encountered by or endured by the individual child that are associated with negative developmental outcomes and/or psychosocial maladjustment. Protective factors are the positive influences in a child’s life that can come from within the individual or from the family, group, or society to which the child belongs. Risk and resilience are not constructed the same within all 17 societies. However, it is widely accepted that the development of boys and girls is dependent on the dynamic interplay between the risk and protective factors within their lives (Boyden, & Mann, 2005). It is this view of resiliency that transcends cultural and contextual differences when defining psychosocial adjustment of children living in adverse situations. Another reason the theory is useful is the natural connection that it has with intervention. Focusing on the resiliency of children in diverse life circumstances can lead to and inform action (Ungar, 2008). The ability to identify and mitigate risk and promote protective factors in the life of a child is key to meaningful intervention (Boyden & Mann, 2005). There is a wealth of information on resilience and specifically the factors that protect children from the risks that they face. There is less information however guiding the conceptualization of children within resource poor regions of the world dealing with a chronic illness such as HIV. Liebenberg and Ungar (2008) point out that one challenge of resilience research is that positive outcomes change according to context and culture. Psychosocial adjustment in the face of an adverse condition such as HIV/AIDS can thus be thought of as the result of a “dynamic interplay of individual and social forces” (Liebenberg & Ungar, p.7, 2008). Fortunately, there has been international attention on interventions focused on the protection of children exposed to adversity (Boyden & Mann, 2005). However, there is still a need for research that carefully considers the reality of children’s lives in order to inform policy, and ultimately improve the effectiveness of interventions designed to assist them (Boyden & Mann, 2005). Some theoretical models have been developed to draw attention to important environmental factors and individual characteristics important in the conceptualization of resiliency in the face of HIV/AIDS. Bachanas and colleagues (2001) used a model of stress and coping for predicting psychological adjustment in children with HIV. Their model was derived from the theory-driven 18 conceptual models developed by Thompson (1987), to guide research on children with chronic illnesses. The literature on chronic illness has recognized that increased technological ability to save lives through medical interventions has lead to an increase in children living with chronic conditions (Thomas, 1987). Living with a chronic condition could have a negative impact on their psychosocial functioning, because prolonging life does not automatically mean that individuals are able to live quality lives. In fact, chronic illness can be conceptualized as a risk factor for psychological adjustment. Consequently there is a need to confront the quality of life issues faced by people living with chronic disease (Thompson & Gustafson, 1996). Ultimately we are called to better understand psychosocial adjustment and all of the dynamic factors contributing to it in order to promote resilience among children who are living with a chronic illness such as HIV/AIDS. Stress and Coping Model for Predicting Psychological Adjustment in HIV-Infected Children This stress and coping model was developed by Bachanas and colleagues (2001) to guide research in predicting the psychological adjustment in school-age children with HIV. The model seeks to understand all of the ecological factors that would contribute to the child’s adjustment including: demographic parameters, caregiver characteristics, illness parameters, and child characteristics (See Figure 1). The demographic parameters within Bachanas and colleagues’ (2001) model of stress and coping include the child’s age, gender, and family socioeconomic status. All of these measures have a direct impact on the child’s adaptation process, which, in turn, influences the adjustment of the child. The importance of these parameters are set forth in the work of Bronfenbrenner (1979) and have had demonstrated continued importance within the developmental psychopathology conceptual framework (Masten, 2006). According to the framework, 19 demographic parameters are important to consider because throughout development children, as living systems, are continually interacting with the contexts in which they are a part. In this way typical development, and transversely, psychopathology, is due to the complex interactions between the systems that the child is a part of as well as between the child and the contexts in which the child is embedded (Masten, 2006). Consistent with Bachanas and colleagues’ (2001) model, the contextual features that may play a role in the child’s adjustment according to the developmental psychopathology literature include the child’s age, gender, and family socioeconomic status. The child’s age may determine the responsibilities and day-to-day tasks of that child, thus impacting expectations for typical development. The gender of the child, being male or female, is also a contextual variable that carries different expectations for behavior and typical adjustment. Living with a disease such as HIV/AIDS can thus have differing effects on children depending on gender. The family’s resources and ability to meet the needs of the child as well as all of the family members is also important to consider as a factor impacting psychosocial adjustment. Any one of these demographic variables can serve as a risk or protective factor when considering child adjustment, and are all thought of as important pieces to consider within the larger model of stress and coping as it applies to children living with HIV. Another variable considered important in the model of child adjustment is the caregiver. Caregiver characteristics are of key importance to the adjustment of the child. In their model of stress and coping Bachanas and colleagues (2001) focus on the caregiver adaptational process which consists of stress, coping strategies, and family functioning. These measures are important in conceptualizing the caregiver’s adjustment which is thought to influence the child. The developmental psychopathology literature also stresses the importance of the caregiver. It also provides a framework for understanding how the child’s adjustment is influenced by the 20 caregiver. According to the ‘systems principal’ within the developmental psychopathology literature children are thought of as social beings who are continually interacting with their families, peer groups, schools, and larger systems (Masten, 2006). Children are thought to be part of a co-dependent relationship in which they influence the regulation of others’ behavior while at the same time being regulated by their relationships with others. This core principal of development also discusses the tendency to strive for consistency and the need to reorganize and transform as a result of changes to the status quo (Masten, 2006). The main point to derive from this theory is that children can influence a caregiver and then subsequently be influenced by his/her reactive behavior. Thus, the caregiver is an important variable to consider when examining child adjustment. Within Uganda the AIDS epidemic has significantly affected the traditional caregiving system. Many children are orphaned and are then put in the care of a grandparent or alternative caregiver, which has been found to vary in quality. Research has clearly shown that positive outcomes are associated with the care of the biological mother. Thus, one important variable to consider is who the primary caregiver of the child is when trying to understand the protective qualities it can have on psychosocial adjustment. The illness parameter is specified as the HIV status of the child. This can be defined as the presence or absence of the virus, and can also be extrapolated to mean the progression of the disease within the body. As the disease progresses there are more symptoms and difficulties experienced by the child. In fact by definition the category of disease is associated with the symptoms experienced by the child, with children in later stages presenting with more medical complications. Research on the best ways to measure disease progression supports the use of two different factors: CD4 cell count and Viral Load. These measures have been found to be the 21 best predictors of mortality in developed countries as well as Sub-Saharan Africa (Rouet et al., 2003). The illness is included in the model because it is thought of as a risk factor that is associated with negative outcomes. Children living with HIV, specifically those who are in advanced stages of the infection are thought to be at greatest risk for negative outcomes. Illness parameters, according to this model, are factors that may have a large impact on the overall adjustment of the child. The final piece of the stress and coping model of child adjustment to consider is the characteristics of the child, or the personal qualities that he or she has. Child characteristics that are evaluated within Bachanas and colleagues’ (2001) model are the adaptational processes including expectations and coping strategies. Expectations can be thought of as the health locus of control. This is the child’s generalized expectations concerning where control over their health resides. The important coping strategies evaluated within the model are those that are palliative or adaptive. These characteristics may be dependent on the child’s cognitive ability. Thus, an important child variable to consider when understanding the child’s adaptational process is the child’s cognitive functioning. Strong cognitive skills would aid in the coping process and be thought of as a protective factor whereas deficits in cognitive ability may be a risk for psychosocial maladjustment. This variable is an important part of the stress and coping model (Bachanas et al., 2001) and, conceptualized from the developmental psychopathology literature, exemplifies a core principal of developmental psychopathology labeled ‘agency’ (Masten, 2006). According to this principle, the child is an active agent in development who shows increasing independence with brain development and learning. Thus, understanding the child’s ability to think and learn as they navigate their environment will be important in understanding the factors contributing to the overall psychosocial adjustment of the child. 22 Ultimately all of these variables feed into the outcome variable that the stress and coping model (Bachanas et al., 2001) strives to explain: child adjustment. The importance of each factor in the model is explained within the developmental psychopathology theoretical framework. Together they make clear the need to understand the psychosocial adjustment of children according to the context of which they are a part. The main components of Bachanas and colleagues’ model fit into two systems of influence: the caregiving context composed of the caregiver and socioeconomic status, and child illness parameters composed of characteristics such as the disease progression and cognitive ability. These systems of influence can be used to identify contexts of psychosocial adjustment and ultimately promoting resiliency in the face of risks such and HIV/AIDS. Understanding Psychosoical Adjustment A child who is able to demonstrate positive social skills, psychological functioning, and is able to change to meet the demands of the environment would be considered well adjusted (Achenbach et al., 2008). Put another way, the absence of negative behaviors that are associated with negative outcomes, along with the presence of positive behaviors associated with positive outcomes would suggest psychosocial adjustment. Therefore, by understanding the child’s behaviors and symptoms, one can make a judgment as to whether or not the child is well adjusted. One way to categorize the behaviors is by identifying those that would be considered internalizing versus those considered externalizing problems. Internalizing disorders reflect “problems within the self, such as anxiety, depression, somatic complaints without known medical cause, and withdrawal from social contacts” (Achenbach & Rescorla, 2007, p.93). Externalizing behaviors on the other hand are exemplified by conflicts with others and violations of expected behavior (Achenbach & Rescorla). This is a helpful way to identify children at high 23 risk for psychosocial maladjustment. However, understanding psychosocial adjustment according to internalizing and externalizing behaviors becomes even more meaningful when it is expressed as part of the unique environmental circumstances of the child. Buchanas and colleagues’ (2001) model of stress and coping, makes evident that child psychosocial adjustment can only be understood through the relationship that it has with other contextual/environmental factors in the child’s life. There is limited data on how children within the resource poor region of Uganda are affected by all of these factors. The main contextual variables that lend themselves to be investigated in this unique context are the caregiving context and the child illness parameters. Examining these factors may provide insight on the role they play in the psychosocial development of schoolchildren in Uganda with HIV/AIDS. Psychosocial Adjustment and The Caregiving Context Primary caregiver. There is evidence to suggest that children infected with HIV who are living with a caregiver other than their biological mother demonstrate elevated internalizing behavior problems, presumably because of the mother’s illness/death (Bachanas et al., 2001). In fact, researchers who failed to show internalizing behavior concerns or somatic complaints when using the CBCL as a measure of psychosocial well-being of children with HIV/AIDS speculated that this could be due to the fact that the children were all cared for by their biological parents (Franklin, Lim, & Havens, 2007). In other words none of the sample had lost their primary caregiver to the disease as is common in other resource poor regions such as Uganda. In a study conducted by Pelton and Forehand (2005) of 105 African American children from New Orleans age 6 to 11 years, the behavior of children whose parents were either living with HIV or had died of AIDS was observed. Relative to children who still had their parents, those who were orphaned exhibited significantly more Internalizing and Externalizing problems lasting more 24 than 2 years (Pelton & Forehand, 2005). Many children with HIV within the African context live with caregivers other than their parents. Within Uganda it is not uncommon for households to be headed by grandparents who have traditionally been the recipients of financial support from their adult children (Nyesigomwe, 2006). Though these alternative caregivers largely value their role in child rearing, they may not understand the importance of continued stringent medical care for the HIV infected children they are looking after (Jones, Sherman, & Varga, 2005) or may be unable to meet their needs because of advanced age and frail condition (Nyesigomwe, 2006). Caregiving takes place within a social context and thus it cannot be appropriately studied without attention paid to the conditions of poverty that may compromise child outcomes (Dawes, Bray, & Van Der Merwe, 2007). The death of parents with HIV/AIDS and the subsequent taking-in of their children, often by grandparents, have exacerbated household poverty (Hodge, 2008) In South Africa, where the HIV/AIDS epidemic has been an ongoing struggle, caregiving has been recognized as a determining factor in psychosocial adjustment. If children receive quality care they are more likely to exhibit social and behavioral adjustment as well as intellectual achievement (Richter, Manegold, & Pather, 2004). No matter who the primary caregiver of the child is, he/she has a role in the development and proper adjustment exhibited by the child. For example, psychological distress exhibited by the caregiver has a negative impact on the adjustment of the child, with the child exhibiting more internalizing behavior problems (Bachanas et al., 2001). This is a very important relationship to understand because, “despite real success in the fight against HIV infection, driven primarily by behavior change rather than treatment, (which remains only minimally accessible), the number of children orphaned by HIV/AIDS in Uganda is unlikely to decline until 15-20 years after the decline in HIV infections” (Hodge, 2008, p. 19). Therefore, continued examination of the 25 impact of the caregiver on the psychosocial resiliency of children living with HIV/AIDS is paramount. Socioeconomic factors. One of the contextual variables that can have a large impact on the psychosocial wellbeing of children is Socioeconomic Status (SES). Researchers use SES in order to account for differences in resources between families. The measure is used to understand how people within a community compare in terms of monetary income, the ability to meet the basic needs of the family members, and the level of education. This measure is important because it is a contextual variable that has been shown to account for differences in performance, health, and overall well-being. Poverty has been established as a risk factor, associated with negative child outcomes especially for children under the age of 5 years, and those in extreme and enduring poverty (Owens & Shaw, 2003). Poverty has also been identified as one of the barriers preventing mothers from following through with care for their HIVexposed infants in South Africa (Jones, Sherman, & Varga, 2005). Moreover, poverty has been found to impact adherence to daily drug regimens among HIV-infected children in Uganda (Bikaako-Kajura et al., 2006). Non Governmental Organizations (NGOs) in Uganda have put substantial effort into helping families improve their economic situation in the hopes that it will lead to benefits in other aspects of life. For example, loans are given to families to start farms and other businesses that can then sustain an improved quality of life. Although the benefits seem to be apparent, it is not clear what impact family SES has on the psychosocial adjustment and subsequent quality of life of a child living with HIV/AIDS. Thus, it is important to understand the SES differences within the population and how it impacts the psychosocial adjustment of children with HIV/AIDS. 26 Psychosocial Adjustment and Child Variables Age. Studies looking at the correlation between age and the psychosocial wellbeing of children infected with HIV/AIDS have produced interesting results. Bachanas et al. (2001) collected measures of psychological adjustment of school age children infected with HIV through caregiver report and child-self report. In their study they found that age was a significant predictor of the children’s self-reported psychological adjustment. Younger children were shown to exhibit poorer psychological adjustment, but even when the data were analyzed without the youngest children (6 and 7 years of age), age was still significantly correlated with scores of psychological adjustment (Bachanas et al., 2001). Another study focusing on caregiver report of maladjustment found that children with vertically transmitted HIV exhibited significantly more behavioral concerns than would be expected. However, when considered over time there was a statistically significant decrease in aggressive behavior as the children grew older (Franklin, Lim, & Havens, 2005). Some hypotheses to explain this finding include: age may be a reflection of adjustment to the diagnosis of HIV, caregiver adjustment or the death of a parent, and entry into school (Franklin et al., 2005). Another hypothesis for differences in psychosocial adjustment based on age is the child’s cognitive ability to cope with the stressor. Coping strategies can be seen as a function of age because as the child ages and develops more sophisticated cognitive abilities he/she is able to also employ more sophisticated forms of coping (Engel & Melamed, 2002). For example, older children are better able to mange their emotions using cognitive mediational control (Wertlieb et al., 1987). This is thought to be true because younger children are often less aware and unable to label internal emotional states. Younger children may not understand that they can regulate their 27 emotions and are unable to see this process modeled by others because of the internal nature of emotional regulation (Compas, Banez, Malcarne, & Worsham, 1991). Thus the experience that comes with age could lead to better coping and ultimately better psychosocial adjustment. However, further exploration is needed to understand the psychosocial adjustment of children with vertically transmitted HIV/AIDS at different ages, especially in resource poor areas. Gender. There is limited research investigating the potential impact of gender on quality of life for individuals living with HIV/AIDS. Most of the research to date has been conducted with adults. The limited data points toward differences in quality of life between men and women with men reporting more positive feelings about their future (Chandra et al., 2008). Furthermore, men were more likely to report feeling content and having positive experiences (Chandra et al., 2008). Women living with HIV have been found to be more vulnerable to depressive symptomatology (Cook et al., 2002), show patterns of sleep impairment, and symptoms of anxiety (Junqueira, Bellucci, Rossini, & Reimao, 2008). In one large-scale study based in the United States differences in Health Related Quality of Life scores were collected throughout the course of treatment for HIV/AIDS of males and females. Females reported lower Health Related Quality of Life scores than males in all domains except social functioning at baseline, and had lower scores in all domains except overall health at 40 weeks of treatment (Mrus, Williams, Tsevat, Cohen, & Wu, 2005). However, men and women showed equivocal improvements over the course of treatment. Although it appears that men are able to adapt to the disease more readily than women, some studies have identified strengths that women demonstrate over their male counterparts when coping with HIV/AIDS. For example women have been reported to show strength in social functioning (Mrus et al., 2005), and score significantly higher than males on forgiveness scales, spirituality/religion, and personal beliefs domain (Chandra et al., 2008). 28 The way that males and females experience HIV infection can have implications for intervening to improve quality of life. Moreover, inequalities in social capital in men and women may be important to consider. It is thought that social capital may influence the ability to access treatment for HIV. For example, a study in Nambia that investigated the relationship between social support networks and health found a link between social capital and greater HIV-related treatment efficacies (Smith, & Rimal, 2009). Further research is needed to see if girls and boys within resource poor nations living with HIV/AIDS are able to adjust in similar ways to their circumstances. If there are differences, they may help to identify gender as a protective factor and inform ways in which to intervene. Academic Achievement of School Children with HIV/AIDS One concern is that children with HIV would be too sick to attend school. This was not the case according to the research conducted by Cohen et al. (1997) in which only 3% of children with HIV/AIDS were unable to attend school due to illness. In a cohort of children from Philadelphia, two thirds of the children studied did not need to be hospitalized during the school year, however 23.5% had repeated at least one grade. (Mialky, Vegnoni, & Rutstein, 2001). This may indicate that even when children are able to attend school there are other reasons that they are having difficulty staying on track and achieving. Another way to investigate children’s performance within school is to look at cognitive and academic achievement scores. Within the United States studies have been conducted to understand if children with HIV have access to education and how they perform academically relative to their cognitive ability. Loveland et al. (2000) found that children with HIV had academic achievement scores below what would be expected based on their cognitive assessment scores. Blanchette et al. (2002) 29 found similar results, reporting that children with HIV had IQ scores within the average range but academic achievement scores in the low average range. More recently however Franklin et al. (2007) found that the sample of children they were working with exhibited academic achievement consistent with their cognitive ability scores. The authors hypothesized that their success could have been due to their sample of children who received antiretroviral medication and medical care in the context of their HIV program. The children in their study might have also exhibited these encouraging results due to positive parenting, the extra services that they received within school, and the focus placed on attendance and performance within school. Though encouraging, it is difficult to know if these same results can be found within the African context where resources are limited. Furthermore, it is important to try to identify some of the factors that were important in producing positive outcomes in order to provide them for more children with HIV/AIDS. In order to better understand the deficits exhibited by HIV positive Ugandan school children, Bagenda and colleagues (2006) evaluated 28 HIV-infected children at about 8 years of age, and compared them to 37 HIV-negative children born to uninfected mothers (control children). Children were evaluated with cognitive and academic achievement tests, including the Kaufman Assessment Battery for Children (K-ABC) and the Wide Range Achievement TestThird Edition (WRAT-3) along with measures of physical health (Bagenda et al., 2006). Results from this study showed that children with HIV had lower scores on health measures, more infections as a result of immuno-deficiency, and a greater incidence of developmental delay than unaffected children. Furthermore, the HIV positive Ugandan schoolchildren performed significantly worse on a sequential motor memory task (K-ABC Hand Movements), and had lower scores on spatial memory, though not significantly so. Finally, the HIV positive Ugandan 30 school-age children had significantly lower WRAT-3 reading ability scores than uninfected peers. These results though discouraging demand further investigation into the reasons for lower cognitive and reading ability scores. It could be possible that the lower scores are due to a mediating variable such as low socioeconomic status or psychosocial maladjustment. Schooling within Uganda Access to education and school performance can have a large influence on a child’s developmental trajectory. Within Westernized societies and Uganda alike, there is a great deal of importance placed on education and school performance as a foundation for future success. Most people would agree that investing in the education of children would benefit their future, their well-being, and the success of the society as a whole. From a developmental perspective primary education is viewed as a tool that guides children’s developmental trajectories toward higher education, higher paying jobs, and a higher quality of life. Within Uganda 82% of children are enrolled in primary school, making it the norm for children to receive an education (UNICEF, 2008). Unfortunately, there are some children who are unable to attend school. For many rural families, school fees, which cost around $12 US dollars, are prohibitive (Whyte, 1998). Children with HIV/AIDS who are being raised by a caregiver other than their parent may face these same barriers to receiving an education. Many are denied education because the families that take in children/orphans cannot pay the school fees that would allow them to attend school in conjunction with the fees for their own children (Nyesigomwe, 2006). When students are able to attend school their performance is generally very important to parents and caregivers who are frequently sent reports by the classroom teacher and head master of the school. Students’ performance is numerically represented in each subject and as class rank (Whyte, 1998). The importance in Uganda placed on class rank is an example of the highly 31 competitive nature of their schools. Teachers believe that competition is essential in motivating students to perform, pushing intelligent and hard working students to be among the top of their class (Whyte, 1998). Thus, the teacher’s appraisal of student performance in comparison to other students in the class is an important measure to look at when trying to understand if a child is participating and benefiting from education. Furthermore, this measure can logically be extrapolated to be a picture of how the child and caregiver view the student as a learner, and as a barometer of future school success. Addressing the Needs of Children with HIV/AIDS in Uganda In Uganda, about 1 million children are orphans with one or both parents dead due to HIV/AIDS. In fact, a new child is orphaned every 14 seconds in Uganda (Ronald & Sande, 2005). The number of children who are themselves infected with HIV is 110,000, most likely though MTCT (UNICEF, 2008). Fortunately, within Uganda the government has recognized pediatric HIV as a problem, and has allowed researchers and Non-Governmental Organizations (NGOs) to implement new programs addressing the needs of children inflicted with the disease. NGOs have been instrumental in providing care to resource poor regions such as Uganda. Globally, $5 billion has been channeled through NGOs annually to areas of need including Uganda, which is more than all United Nations organizations combined have contributed (Chaplowe & Engo-Tjega, 2008). One organization that embodies a public health, ecological approach to providing services to children with HIV/AIDS is Childhealth Advocacy International. Children with HIV/AIDS and their families are provided a range of services to improve their well-being. They are provided with food if necessary, and are visited in their home once a month by a team that includes a nurse qualified in HIV counseling and trained in managing opportunistic infections in children with HIV/AIDS. The team also consists of a 32 medical doctor who provides medical advice, a social worker, and a nutritionist. During these monthly visits children are given treatment to prevent and treat infections, are given their antiretroviral medications (ARVs), and are counseled on adherence to the drug regiment. Counseling and Education is also provided to the caregivers (O’Hare et al., 2005), and appropriate household items like mattresses and mosquito nets are provided. Another important aspect of this organization is the importance they place on schooling for children with HIV/AIDS. All of the children enrolled in the program have their school fees paid for, and are also provided with school uniforms and books (Childhealth Advocacy International, 2008). Evidence to date has strongly endorsed the need for this type of multidisciplinary treatment in order to facilitate comprehensive management of the medical, psychological and social needs of infected children and adolescents (Earls, Raviola, & Carlson, 2008). However, further research is needed to investigate how and if children who are being served by these organizations are exhibiting the expected positive effects. Furthermore there is a need for diligent data collection to examine the social and emotional needs of the specific population of children with HIV/AIDS. This information can inform the implementation of programs to target the risk and protective factors that promote psychosocial resilience. Conclusions Uganda has been hard hit by the AIDS epidemic that has spread throughout Sub-Saharan Africa. However, the heightened global awareness of the AIDS epidemic along with the willingness of the Ugandan government to openly talk about and tackle the problem has led to better medical treatment for the nearly one million inflicted individuals. NGOs have played a large role in providing medications for patients with HIV/AIDS and other accompanying illnesses (Chaplowe & Engo-Tjega, 2008). With the aid of new medications, children with 33 vertically transmitted HIV/AIDS are living longer. However with children surviving into the school years, the quality of life issues that they face must be examined. Theoretical models can aid in that examination. Bachanas and colleagues (2001) provide a model of stress and coping for children with vertically transmitted HIV/AIDS that helps to organize all the dynamic environmental and personal factors contributing to psychosocial adjustment. These factors fit into two systems of influence: caregiving context (the caregiver and socioeconomic conditions), and child illness parameters (the progression of the disease and the cognitive functioning of the child). Children with HIV/AIDS may be affected by the caregiving context, and socioeconomic status of their caregiver. The caregiver’s health in the first year of life can significantly predict the child’s well-being (Nakiyingi et al., 2003). However, there is no research to date investigating the caregiver and socioeconomic conditions of children with HIV/AIDS within Uganda. This information is important to understanding the changing needs of children as they live longer with HIV/AIDS, and providing appropriate, time sensitive interventions. Mixed results have been obtained on the cognitive functioning of children with vertically transmitted HIV/AIDS. Some researchers have found global and specific (ie., attention, and visual-spatial memory) cognitive deficits while others have reported typical cognitive development (Smith et al., 2006; Papola, Alvarez, & Cohen, 1994). These discrepancies seem to be the result of the populations studied, and the environmental risk factors that they face. More research is needed to understand how the cognitive functioning of children in Uganda is impacted by HIV/AIDS, and if there are factors such as socioeconomic status that are neuroprotective. Research on the psychosocial adjustment of children with HIV/AIDS has shown that 34 having HIV/AIDS can be devastating, but there is also a potential for children to be well adjusted. Although some children experience major depression, attention deficit, and anxiety disorders (Misdrahi et al., 2004), other children exhibit normal psychological and social skills (Mellins et al., 2003). It is the resiliency of these children that necessitates further investigation in accord with the dynamic environmental and personal factors that may contribute. More specifically, these factors include the caregiving context (caregiver and socioeconomic status), and child illness parameters (disease progression and cognitive skills). This is as especially pertinent question in Uganda where over 100,000 children are inflicted with HIV/AIDS (UNAIDS, 2007), yet there is a lack of research to address the quality of life issues important to developing interventions. Another variable important to quality of life is school achievement or the ability of the child to perform in school. School achievement in Uganda is thought to be essential in attaining success in later life. Teachers and caregivers place a great deal of importance on school rank, which is thought to be motivating to the students to compete for top spots in the class (Whyte, 1998). However, it is unknown how children with HIV will be able to perform in school. Some studies suggest that children may do poorly due to absence, illness, associated cognitive deficits, and attentional concerns (Mialky, Vegnoni, & Rutstein, 2001). However, it is unclear if these variables impact all children with HIV/AIDS or if there are some children who are able to overcome the barriers that they face to achieve school success. The investigation of psychosocial adjustment and school performance will provide vital information in developing interventions to promote resiliency in the school-age children living with vertically transmitted HIV/AIDS within Uganda. In order to understand these child outcomes, the factors linked to them need to be investigated as well. Thus, in order to inform 35 research questions focusing on the factors contributing to psychosocial adjustment and school performance there first needs to be a better understanding of the caregiving context and child illness parameters. Thus, the following research questions are organized to first get a better understanding of the caregiving context, child illness parameters, psychosocial adjustment and school achievement, within the unique sample of Ugandan school children living with HIV/AIDS in Uganda. The answers to those research questions will then be used to inform analyses that investigate the link between the contextual factors and child outcomes. Research Questions 1) Caregiving Context Who is caring for children with HIV/AIDS at different ages and does SES matter? It was hypothesized that children living with a caregiver other than their biological mother will be older and exhibit lower SES scores. 2) Child Illness Parameters What is the effect of the illness on cognitive functioning and does SES matter? It was hypothesized that as the disease progresses there are more cognitive deficits, so that children on medication would have significantly lower cognitive scores in all four areas (Sequential Processing, Simultaneous Processing, Learning, Planning) than children not yet taking medication. Medication status was used as a measure of disease progression with children who are on medication in the more advanced stages of the disease and children not yet on medication in a less advanced disease state. It was also hypothesized that SES played a role so that children with lower SES would exhibit lower cognitive scores. 36 3) Psychosocial Adjustment and School Achievement 3.1) Are there differences in psychosocial adjustment and school performance by gender or age? It was hypothesized that female children would be less likely to have externalizing problems and that older children would be less likely to exhibit internalizing and externalizing problems than younger children. 3.2) Is there a relationship between psychosocial adjustment and school performance? It was hypothesized that children who are better adjusted (exhibiting less internalizing and externalizing behavior concerns) would have higher school performance scores. 4) Factors contributing to Psychosocial Adjustment and School Performance 4.1) Psychosocial Adjustment. Do the Caregiving context and Child Illness Parameters predict psychosocial adjustment (Internalizing and Externalizing Behavior Problems) in school children with HIV/AIDS in Uganda? It was hypothesized that both Caregiving context and Child Illness Parameters would predict psychosocial adjustment. Both Caregiver and Cognitive Scores were thought to play a role in Internalizing and Externalizing behaviors exhibited by the school children with HIV/AIDS in Uganda. It was thought that being cared for by a biological mother would be correlated with fewer Internalizing and Externalizing behaviors. It was also predicted that higher Cognitive Socres would be associated with less Internalizing and Externalizing behaviors. 4.2) School Achievement. Do the Caregiving context and Child Illness Parameters predict school performance in school children with HIV/AIDS in Uganda? It was also hypothesized that both Caregiving context and Child Illness Parameters would 37 predict school performance. Better Cognitive Scores were hypothesized to be indicative of better school performance. Furthermore, the caregiver was also expected to be a strong predictor of how the child was performing in school. Being cared for by the biological mother was hypothesized to be correlated with higher school performance. 38 CHAPTER 3 Methods This study was conducted as part of a larger research project conducted with Childhealth Advocacy International: Cognitive Rehabilitation Training Intervention for HIV-infected Ugandan School Children. Research Partnering with Child Health Advocacy International: The Larger Study The Cognitive Rehabilitation Training is an innovative program being piloted by Michael Boivin, Ph.D., from Michigan State University, and Paul Bangirana from Makerere University in Uganda, along with Dr. Bruno Giordani from the University of Michigan, and Opika Opoka and Margaret Nakakeeto who both work at Mulago Hospital in Kampala, Uganda. The intervention attempted to directly treat cognitive deficits resulting from HIV infection in the children of sub-Saharan Africa, using computers, a technology that is becoming increasingly available. School age children with HIV are receiving cognitive rehabilitation training for an hour each week using Captain’s Log® Cognitive Rehabilitation Training Program (CCRT) provided on laptop computers. CCRT is a comprehensive set of computerized programs which targets attention skills, visual motor skills, conceptual skills, and numeric concepts with memory skills (Captiain’s Log Brain Train, 2007). There were 60 children enrolled in the study, 30 of whom were randomly assigned to receive the treatment. The Cognitive Rehabilitation Training Intervention in Uganda was in its piloting phase of the project and researchers monitored the effects using pre and post measures of cognitive ability. Specifically, the Kaufman Assessment Battery for Children-Second Edition (KABC-II), the CogState, and the visual and auditory versions of the Test of Variables of Attention (TOVA) were administered before the training, and at the conclusion of the 10-week training period. 39 Additionally, information on the socioeconomic status of the family, the child’s school rank, and social emotional development were collected to examine the role of these variables. The neuropsychological and cognitive tests provide researchers with information on many different aspects of development including attention, memory, and language skills. If the children receiving the intervention make significantly more gains than their control counterparts it would enable CCRT to become an evidence-based treatment option to meet the educational needs of school-age HIV-affected children throughout Sub-Sahara Africa. The Current Study Participants All of the children in the larger project were included in the current study. All data was collected prior to the implementation of the cognitive intervention. Children were recruited through Child Health Advocacy International (CAI), a non governmental organization (NGO) presently serving children with HIV and families in Kayunga District, a poor rural district about 80 km northeast of Kampala, Uganda. CAI was active in Kayunga for about 2 years before the beginning of the larger project. Recruitment in the CAI home healthcare program is done through the voluntary counseling and testing (VCT) outreach program to the communities throughout Kayunga District. CAI and the Kayunga District Hospital sponsor this free HIV testing service. School-age children with a CD4 percentage of less than 15%, or in Stage 3 with an HIV associated life-threatening illness, are eligible for HAART treatment through the HIV clinic at Kayunga Hospital. The care, however, is contingent on a caregiver who is willing to have the child commence ARV treatment and is committed to adherence to the strict regimen. Within the study 23 of the 60 children were receiving this medical support. Children six to sixteen years of age with HIV/AIDS and enrolled in the CAI program 40 were eligible with parent or caregiver consent to participate in the study (See Appendix A and B). Only children who had been diagnosed in early childhood (i.e., prior to achieving sexual maturity) were eligible for enrollment, to ensure only the inclusion of children who contracted the virus from their parents. Children were excluded if they exhibited a medical history of serious birth complications, severe malnutrition, bacterial meningitis, encephalitis, cerebral malaria, or other known brain injury or disorder requiring hospitalization or continued evidence of seizure or other neurological disability. This was screened using a brief medical history questionnaire (See Appendix C), and CAI medical chart review. None of the children recruited for the study were excluded due to these criteria. The participants consisted of 60 children (36 female and 24 male) ranging in age from 6 to 16, median age = 9.8 years. The primary caregivers varied with 17 (28%) of the children being raised by the biological mother, 24 (40%) by a grandmother, and 19 children (32%) were raised by someone else including uncles, sisters, and other distant relatives. About 40% of children 6 years and older in the CAI home healthcare program are on Antiretroviral Therapy (ART). In the study sample, 37 children (61.7%) were not on ART while 23 children (38.3%) were on the medication. Treatment was provided by the CAI home healthcare program and free medications were supplied by the Makerere University-Walter Reed Project (MUWRP) in Kayunga through support from the US-AID PEPFAR initiative (President’s Emergency Plan for AIDS Relief). CAI also provides school fees for children who are enrolled in the program, but only 45 of the 60 children participating in this study were attending school. Variables and Instruments Measures collected include: Child Behavior Checklist (CBCL), Kaufman Assessment Battery for Children-Second Edition (KABC-2), Socioeconomic Status, Disease Progression, 41 School Rank, and Caregiver Information. Child Behavior Checklist for children 6-18 years (CBCL). Social emotional wellness was measured using the CBCL 6-18 years. The Child Behavior Checklist (CBCL) is a tool by which parents/caregivers rate a child's problem behaviors and competencies. This instrument was administered through an interview format in the local language. The CBCL probes eight specific areas of functioning in order to identify syndromes including: Anxious/Depressed, Withdrawn/Depressed, Somatic Complaints, Social Problems, Thought Problems, Attention Problems, Rule-Breaking Behavior, and Aggressive Behavior. Three of these syndrome scales are combined to yield a composite score for a child’s internalizing behaviors compared to same age peers. This internalizing score is composed of the Anxious/Depressed, Withdrawn/Depressed, and Somatic Complaints scales. Two scales are combined to yield a composite score for a child’s Externalizing behaviors. The Externalizing score is composed of Aggressive Behavior and Rule-Breaking Behavior scales. An overall score for Total Behaviors combines scores for Internalizing, Externalizing, the other three syndromes (Social Behavior Problems, Thought Problems, and Attention Problems), and the other problems that are not on any of the scales. This score provides an indication of the overall functioning of a child compared to his or her age-mates within the standardization sample. Extensive research on this tool has shown inter-interviewer and test-retest reliabilities to be high, with correlations of .93 to 1.00 (Achenbach & Rescorla, 2007a). Internal consistency for the empirically based problem scales raged from alphas of .78 to .97 on the CBCL. This tool is thought to be appropriate due to the multicultural nature of the standardization, and the ability to use it with reliability across cultures (Achenbach et al., 2008). The Achenbach assessments have been translated into more than 75 languages and have been used in thousands of published 42 studies in over 65 societies (Berube & Achenbach, 2007). These data have been used to develop a multicultural supplement which allows users to compare children’s scale scores with normative samples from various societies (Achenbach, & Rescorla, 2007b). For this study the normative data from Ethiopia (sub-Saharan Africa) is used to derive standard scores and determine if the children are in the clinical range. The CBCL has also been used in the research of medical conditions, specifically being used in HIV research (Berube & Achenbach, 2007). For this study the CBCL was translated and back-translated with the assistance of a child psychologist from Mulago Hospital in Kampala, Uganda (See Appendix D). The questions were typed for the caregiver to read along in both Luganda (Appendix B) and English (Appendix A) which was the preferred written language because English is taught within the education system in Uganda. Thus, most caregivers were more comfortable reading English than Luganda. Kaufman Assessment Battery for Children – Second Edition (Kaufman & Kaufman, 2004). The Kaufman Assessment Battery for Children- Second Edition (KABC-2) is based on both the Cattell-Horn-Carroll (CHC) psychometric model of broad and narrow abilities and Luria’s neuropsychological theory of processing. For this study Luria’s neuropsychological approach was used in order to look at Sequential Processing, Simultaneous Processing, Learning and Planning. This approach also allows for more interpretable results than the CHC approach when trying to assess brain injury from infectious disease (John, et al., 2009; Boivin et al., 1995). Furthermore, Luria’s theory focuses on mental processing and deemphasizes acquired knowledge. In fact the theory considers acquired knowledge (language proficiency or deneral information) to lie outside the realm of mental processing (Kaufman, &Kaufman, 2004). The CHC approach was not used because Crystalized Intelligence could not easily be interpreted with the population studied and the Fluid Intelligence construct is controversial in cross-cultural 43 intelligence research. Kaufman and Kaufman (2004) provide a vast amount of information on the reliability and validity of their test. Internal consistency for the core subtests ranged from .60 to .95 across age groups. Reliability coefficients for factor indexes ranged from .81 to .95. Test-retest reliability for subsets varied by age, ranging from .53 (Block Counting) to .88 (Expressive Vocabulary) for 7-12 year olds, and ranging from .60 (Hand Movements) to .92 (Expressive Vocabulary) for 1316 year olds (Bain & Gray, 2008). The KABC-2 was chosen for this study because it is a comprehensive assessment of cognitive ability that has been adapted and validated in other studies in diverse populations to assess the effects of infectious diseases on cognition (i.e., Bagenda et al., 2006; Boivin, 2002; Boivin et al., 1995, Boivin et al., 2007; Boivin, & Giorani, 1993). The measure has demonstrated good construct and predictive validity in these applications (Giordani et al., 1996). A recent study of 65 Ugandan children aged 7 to 16 years with a history of Cerebral Malaria was carried out to determine the construct validity of the KABC-2 in this population (Bangirana et al., 2009). The study found that the KABC-2 subtests designed to measure Learning, Simultaneous Processing, Sequential Processing and Planning did in fact measure these abilities (Bangirana et al., 2009). The authors concluded that the KABC-2 can be a valid tool for assessing cognitive function in at risk children in sub-Saharan Africa (Bangiriana et al., 2009). For this study there were 9 subtests of the KABC-2 administered to all participants. These subtests were used to look at four areas of cognitive functioning: Sequential Processing, Simultaneous Processing, Planning and Learning. Subtests used to measure sequential processing include: Number Recall, and Word Order. Simultaneous Processing was assessed using Block Counting, Rover, and Triangles. The Planning score was made up of scores from 44 Pattern Reasoning, and Story Completion. Finally Learning was derived from two different subtests: Atlantis, and Rebus. For a description of each subtest administered and the facet of cognitive ability that it measures please see Table 1. For this study all four of the areas of cognitive functioning were used in the analysis because SES and gender may have differing effects on Sequential Learning, Simultaneous Learning, Planning and Learning. The KABC-2 data does not have normative data for the population studied, thus it is being used as a comparative within-group measure and not a normative measure of intellectual functioning. Adaptation of assessment battery into local languages and test administration. All assessment instructions and items were adapted to the local language with the assistance of Paul Bangirana. He was educated in Kampala and is familiar with the various groups and language we encountered in project recruitment and assessments. Tests were administered by two native Luganda speakers, one trained as a counselor and the other trained as a school teacher, who are also fluent in English. Each test administrator received intensive training in the administration of the KABC-II at Mulago Hospital as part of a research project on Cerebral Malaria, observing test administration, practicing question scoring, and becoming familiar with the manual. Before the study began test administrators completed a practice test with a child from Kayunga district that was observed and critiqued. During the research study test administration was supervised by a school psychology doctoral candidate trained in standardized test administration. Test protocols were checked over by the administrator of the test, then by the colleague not administering the test and finally by the doctoral candidate to check for accuracy and consistency of administration. Socioeconomic Status (SES). SES takes into account an individual or family’s economic and social position within a society relative to others. The measure used for this study was 45 developed by researchers at Mulago hospital in Kampala, Uganda who are familiar with the quality of home environments in Kayunga. The questionnaire was developed to get an idea of the resources available within the home for the child living with HIV/AIDS (see Appendix E). Specifically, the measure focused on the access to resources and asked questions to assess what type of home they live in, if they have year round access to food and if so what type, and finally what possessions, that are seen as status symbols with the district, the family owns. There are numerical values assigned to the answer for each question. The values are assigned so that possessions, ways of living, and food eaten that represent higher SES status are numerically higher. The measure allows SES to be quantified so that the higher the number a family receives (based on caregiver response to each question), the more possessions, better quality of food and everyday quality of life they would experience. The mean SES score for this population is 8.82 with a Standard Deviation of 3.4. In this sample the range is between 5 and 20. Disease Progression. All children that were part of the study underwent a 5 ml blood draw at the local hospital, within one week of testing, in order to evaluate the child’s HIV status as well as the progression of the disease. The blood draw was conducted once, at Mulago Hospital Walter Reed Project Viral Research Unit in Kampala according to previously published procedures (Kiwanuka, Laeyendecker, Robb, Kigozi, Arroyo, & McCutchan, et al., 2008). Within this study, children who are in advanced stages of the disease are on HAART, children in earlier stages according to their blood draws are not yet taking medication. Thus, in this sample of children one of the best ways to understand disease progression is by their medication status. Furthermore, children can be easily separated into two groups based on their medication status, which has been decided by doctors at Mulago Hospital based on their CD4 T-cell counts and viral load. Within the sample there were 23 children on medication (38.3%), while the other 37 46 children (61.9%) are not yet on the treatment. School Performance. All of the children within the study had access to schooling because CAI paid for their school fees, uniforms and books. In Uganda, all of the children attending school are given a class rank, a number that compares their performance to the performance of their classmates as assessed by the classroom teacher. Using class rank allows researchers to see how the children are doing in school as compared to their classmates without HIV/AIDS. For the purposes of this study children were put into 4 categories of school performance based on their class rank: 1) Not attending school, 2) Below average, 3) average, 4) above average. Procedures Children were recruited during monthly home visits by the Childhealth Advocacy International team in Kayunga district. Caregivers who agreed to participate in the study were given a day and time to bring their child to the branch office of CAI in Kayunga. The branch office was seen as an ideal place because of the community’s view of the office as a safe place to receive services and support. The office was not seen as a place where only people with HIV visited thus it did not carry the same stigma as the hospital and would not prevent families from participating. Once arriving at the office caregivers completed a consent form (see Appendix A) before assessments were completed with the child. Once consent was obtained the child was taken into a separate room to begin testing while the caregiver completed the CBCL and Socioeconomic Status form with an interviewer/test administrator. Children were seated at a table and accompanied the entire time by a test administrator. Before beginning the tests with the children they were asked if they wanted to participate in the research study by completing the testing (See Appendix F). The computerized cognitive training offered as part of the larger study was incentive for children to participate. Children were also given a questionnaire to assess if 47 the child was healthy enough to complete the testing, or if they needed any type of medical care at the time. If the child gave assent by signing or giving their thumb print, and was deemed healthy enough for testing, the testing procedure began. During testing children were given breaks if they appeared to be fatiguing. All of the children were also given juice and biscuits during breaks in testing or at the completion of testing. At the end of testing children were given a small toy and returned to their caregiver. The caregiver and child were reimbursed for transportation costs to and from the office in the amount of 5,000 Ugandan Shillings (approximately $2.50 in U.S. currency), which was assessed by the CAI team to be the average cost of public transportation from most places within the district to the branch office. 48 Chapter 4 RESULTS The data for the current study were collected as part of a larger project implementing a computer based program to address cognitive deficits for children with HIV/AIDS in Uganda. This study focused specifically on the quality of life issues for these children, and examined the Caregiving Context as well as the Child Illness Parameters leading to better outcomes. The demographic characteristics (age, gender, SES, and Primary caregiver) of the 60 children who participated in the study are displayed in Table 2. The number of children in the study by gender and age are represented in Figure 3 by a histogram. Sixty percent of the participants in the study were female. Most particpants across the entire sample were 11 years or younger. There was a disproportionate number of females younger than 8 years of age, with far more females than males. There were similar numbers of males and females with average and higher SES, however, there were more females than males in the lower SES group. Children with average SES were equally distributed among all types of caregivers. Among children with lower SES, the largest number were being cared for by a grandmother. Children in the highest SES group lived with a caregiver other than their mother or grandmother. Most children performing Below Average or Not Attending School exhibited lower SES. Research Question 1, Caregiving Context: Who is caring for children with HIV/AIDS at different ages and does SES matter? As shown in Table 2, 28% of the children are cared for by their biological mother. Most children are cared for by a grandmother (40%), followed by a relative other than their mother (32%). A similar pattern of caregivers was found for girls and boys. The caregivers for children 49 at different ages varied however, with children more likely to be cared for by their biological mothers at younger ages and by a grandmother or other relatives at older ages (See Figure 4). To examine if the child’s age and SES predicted the likelihood of children living with either their mother or another caregiver, a direct logistic regression was employed. The full model containing both Age and SES as independent variables was not statistically significant, χ2 (2, N=59)= 5.06, p=.079, indicating that the model could not distinguish between children who were cared for by their biological mother versus another caregiver (See Table 2). Research Question 2, Child Illness Parameters: What is the effect of the illness on cognitive functioning and does SES matter? Child Illness Parameters were investigated using a multivariate analysis of covariance (MANCOVA). It was hypothesized that as the disease progresses there are more cognitive deficits, so that children on medication would have significantly lower cognitive scores in all four areas (Sequential Processing, Simultaneous Processing, Learning, Planning) than children not yet taking medication. Medication status was used as a measure of disease progression with children who are on medication in the more advanced stages of the disease and children not yet on medication in a less advanced disease state. It was also hypothesized that SES played a role so that children with lower SES would exhibit lower cognitive scores. The Socioeconomic status of children was entered into the MANCOVA as a covariate to examine the influence of this variable on cognitive scores. KABC-II scores in all four areas of functioning were used as the continuous dependent variables within the equation. Instead of using United States norms, the raw scores for each KABC-II subtest were adjusted to account for differences in age of the participants. Specifically, raw scores were checked for normal distribution to make sure all of the assumptions in regression models were satisfied. The linear relationship between age and 50 each subtest was then established in order to fit a linear regression, and obtain Studentized residuals. The Studentized residuals were used because they are scaled and therefore follow a standard normal distribution when linear regression model assumptions are roughly met, and are often preferred to ordinary residuals (Kutner, Nachtsheim, Neter, Li, 2004). The resulting Studentized residuals were used to calculate the four KABC-II scale scores (Sequential Processing, Simultaneous Processing, Learning, and Planning). The Studentized residuals for the subtest that make up the scale score were added together, and the sum was then divided by the square root of the number of subtests added. Each subtest contributed equally to the scale score. Sequential Processing= (Studentized Residual of Number Recall + Studentized Residual of Word Order) / √ 2 Simultaneous Processing= (Studentized Residual of Block Counting + Studentized Residual of Rover + Studentized Residual of Triangles) / √ 3 Learning= (Studentized Residual of Atlantis + Studentized Residual of Rebus) / √ 2 Planning= (Studentized Residual of Pattern Reasoning + Studentized Residual of Story Completion )/ √ 2 For each scale score a higher score indicated higher cognitive functioning. Table 3 shows the means and standard deviations for each scale score (Sequential Processing, Simultaneous Processing, Learning, and Planning). This MANCOVA provides information on the effect of Disease Progression, and SES on Cognitive scores, and also provides information about the relationship between the independent variables. As predicted, there was a statistically significant multivariate effect for SES, F(4,53)=4.88, p=.002; Wilks Lamda= .73; Partial eta squared=.27. Follow-up univariate tests 51 revealed a significant main effect for SES on Learning (p<.001), and Planning (p=.002), indicating that SES had an effect on children’s Learning and Planning ability scales as measured with the KABC-II. However, SES did not have the same effect on Simultaneous (p=.031) and Sequential Processing (p=.107). Contrary to prediction, the multivariate main effect for medication group was not significant, F(4,53)=.461, p=.764; Wilks Lamda=.97; Partial eta squared=.034. There was no difference in cognitive scores based on the child’s disease progression as measured by medication use. Research Question 3, Psychosocial Adjustment and School Performance: Are there differences in psychosocial adjustment and school performance by gender or age, and is there a relationship between psychosocial adjustment and school performance? The psychosocial adjustment was calculated using the Ethiopian (sub-Saharan) norms provided within the multicultural supplement to the Manual for the Child Behavior Checklist (Achenbach & Resocorla, 2007b). A MANCOVA was used to assess the differences in internalizing, and externalizing problems from the Child Behavior Checklist (checking first for multicolinearity of these variables) and school performance by gender and age, and to understand the relationship between psychosocial adjustment and school performance. Gender (2) and School Performance (4) were entered in the model as factors. Age was a covariate in the model. The dependent variables were internalizing and externalizing behavior problems. Preliminary checks were conducted to ensure that there was no violation of the assumptions of normality, linearity, homogeneity of variance, homogeneity of regression of slopes, and reliable measurement of the covariate. 52 There were no notable differences in respondents across the School Performance groups. There were equal numbers of grandmothers across groups. Mothers made up half of the caregivers within the below average group. There were only 2 mothers reporting in the group of children not attending school, and in the above average group. Within the group of children not attending school the largest group of reporters were Other Caregivers. Other Caregivers were represented in all other School Performance Groups. None of the main effects for externalizing behaviors were significant with the following results: School Performance: F(3,49)=1.59, p=.204; Gender: F(1,49)= .105, p=.747. As seen in Table 4, after adjusting for age there was a significant interaction effect (School performance and Gender) for externalizing behaviors: F(1,49)= 4.38, p=.008, using a Bonferroni adjusted alpha level of .017, (partial eta squared=.21). These results suggest that males and females have different externalizing behavior scores based on their school performance (see Figure 5, Figure 5.1, and Figure 5.2). Males who are not in school tend to have higher externalizing problems than those who are performing in the below average or average range. For males attending school, there is a trend for externalizing behavior problems to be higher than those performing at lower levels in school. Males with above average school performance had the highest average externalizing behavior problems, which was in the borderline range. Conversely, externalizing behavior problems among females tended to decrease with higher levels of performance in school. Females in the above average performance group had the lowest average externalizing behavior concerns. Contrary to predictions, none of the main effects for internalizing behaviors were significant, School Performance: F(3,49)=1.67, p=.185; Gender: F(1.49)=2.815,p=.1; Age: F(1,49)=.045, p=.833. The interaction effect for internalizing behaviors did not reach 53 significance using a Bonferroni adjusted alpha level of .017, F(3,49)= 2.978, p=.04 (See Figure 6, Figure 6.1, and Figure 6.2). Research Question 4, Factors Contributing to Psychosocial Adjustment and School Performance: Do Caregiving context and Child Illness Parameters predict Psychosocial Adjustment (Internalizing and Externalizing Behavior Problems) and School Performance in school children with HIV/AIDS in Uganda? Psychosocial Adjustment. The CBCL was completed for 58 children in the study. Data were missing for two children, but appeared to be random. Using the CBCL multicultural norms for sub-Saharan Africa resulted in eight children (14%) scoring in the borderline range for Internalizing behaviors, 5 males and 3 females. Eleven (19%) of the children, 5 males and 6 females, scored in the clinical range for Internalizing behaviors (See Table 4). Four children (7%), equal numbers of boys and girls, were in the borderline range, for Externalizing behaviors. Eleven children (19%) were in the clinical range, including 4 males and 7 females. As seen in Table 5, on the Total Behavior Problems Scale, 14% of the children obtained scores in the borderline range (2 males and 6 females) and 14% in the clinical range (3 males and 5 females). In order to understand what factors were contributing to psychosocial adjustment 2 separate multiple regressions were conducted, one for internalizing behaviors and another for externalizing behaviors. Cognitive functioning was deemed an important factor to include as a predictor variable from the analyses on child illness parameters. It is thought to be an important indicator of the child’s disease state, and was more sensitive than medication in previous analyses. A total cognitive score served as the predictor variable representing an important aspect of child illness parameters. The other predictor variable is the Caregiver, representing an important aspect of the caregiving context. Age was not added into the equation because it was 54 found to be the strongest predictor of caregiver. Similarly, SES was not included due to its relationship with cognitive outcomes as found in the analyses on child illness parameters. Using these variables (cognitive score and caregiver) preliminary checks for multicollinearity revealed that the assumption was met, and there were no other violations in assumptions detected using the Normal Probability of the Regression Standardized Residual and a Scatter plot of the data. Mahalanobis distance was checked using a critical value based on the number of independent variables, and did not detect outliers within the data. The multiple regression for externalizing behaviors revealed that the overall model was not statistically significant: F (2, 55) = 2.85, p = .067(See Table 6). The model for internalizing behaviors was significant (2,55) F = 3.12, p = .048. Caregiver and Cognitive Score explained 10% of the variance in internalizing behaviors. Cognitive score explained the largest amount of variance, ß = .318, p= .016. Using the semipartial correlation coefficients almost all (10%) of the total variance in internalizing behaviors was uniquely explained by cognitive score. Caregiver only accounted for .4% of the variance in the model (See Table 7). Thus, the child’s cognitive score had a significant unique contribution to the prediction of internalizing behaviors. Children with higher cognitive functioning had fewer internalizing behavior problems. School Performance. School Performance was first examined by transforming class rank into a percentile rank. Percentile rank was then split into four categories of analysis: 1) not attending school (n=15); 2) below average, a percentile rank of 1 to 40 (n=18); 3) average, a percentile rank of 41 to 60 (n=14); 4) above average, a percentile rank of 61 to 100 (n=13). The four categories were formed in order to include the group of children who are not attending school. Most children who were not attending school were less than 8 years of age. Children 55 ages 9-14 were more likely to be attending school than their younger or older counterparts. Only 50% of the 15 and 16 year olds were attending school. A logistic regression with a multinomial set of procedures was then used. The dependent variable was School Rank, and the predictor variables were Caregiver and Cognitive Scores. The model was significant, χ2 (9, n=60) = 22.63, p=.007, thus the null hypothesis was rejected and at least one of the predictors was significantly related to the school performance. The model as a whole explained between 31.4% (Cox and Snell) and 33.6% (Nagelkerke R squared) of the variance in School Performance. The likelihood ratio test of individual parameters show that Caregiver was not a significant factor in the model, χ2 (6, n=60)=7.68, p=.263, however, Cognitive Score was a significant factor, χ2 (3, n=60)= 14.75, p=.002. Using children in the ‘above average’ group as a reference, Cognitive Scores were significant for the group of children not attending school (p=.002), and for those in the below average performance group (p = .015). The odds ratio for cognitive scores of children not attending school is .427 (See Table 7). This indicates that as the Cognitive Score of children decreases by one, the odds of being in the not attending school group increases by a factor of .427. Similarly, for children in the below average group, as the Cognitive Score decreases by 1 point the odds of being in the below average group rather than in the above average group changes by a factor of .542 (See Table 8). Thus, as cognitive scores increase the probability of not attending school or being in the below average performance group decreased. 56 Chapter 5 DISCUSSION The purpose of this study was to examine the nature and predictors of the quality of life of children with vertically transmitted HIV/AIDS in Uganda. It is important to first understand the characteristics and developmental context of children with HIV/AIDS. Of note is the resilience of children who are surviving well beyond the point of transmission. In this sample of children 6–16 years of age there was a decrease in children 12 years and older participating in the research with the fewest participants in the 14-16 year age range. These data are challenging to interpret because length of life may not reflect disease progression, but instead reflect the quality of care they have received in the community throughout their lives. At the time of the study CAI had been involved in the region for about 2 years, meaning that none of the children in the study had received care in the critical first few years of their lives. Thus, this group of children may be a robust group of survivors. Furthermore, the numbers of children in each age group may reflect access to and enrollment in CAI (where they would receive medical care and emotional support) rather than being indicative of the age to which children are surviving. Although there is not a clear reason for the disparity in gender, the majority of children in the study were female. It may be that more females were identified to participate or more females survive to age 6 than males. The discrepancy may just be representative of the children within the region studied, and may mean that there is an imbalance in children who have contracted the disease. More research is needed to confirm these hypotheses. In order to understand the population studied, progression of the virus was also examined. The child disease progression revealed that the disease had not progressed to critical levels in most of the children. The majority, 62% of the children within the sample were not yet 57 on medication due to sufficient CD4 cell count and low Viral Load. This is a surprising finding as these children are at least 6 years old and have had the HIV virus since birth. These results suggest a certain degree of resilience characterizing these children, who are literally, survivors, successfully living with HIV/AIDS and sufficiently healthy to not require medication. Though medically resilient, a psychosocial measure was also administered to understand adjustment. Using the sub-Saharan norms on the CBCL (Achenbach, & Rescorla, 2007b) one third of children in the sample demonstrated internalizing behavior problems (either in the borderline or clinical range as compared to same age peers). These findings were consistent with a study of Ugandan AIDS orphans in a rural district that also exhibited high levels of anxiety, depression, and anger (Atwine, Cantor-Graae, & Bajunirwe, 2005). Over a quarter (26%) of children exhibited problematic externalizing behavior concerns. Total behavior problems were of concern in 28% of the population. These finding are lower than the 42% of children with psychiatric dysfunction found by Papola, Alvarex, and Cohen (1994) in a study of children with HIV in the Bronx, however, these findings also demonstrate that a large portion of children were exhibiting behaviors of concern that confirms the need for further investigation. Schooling also plays an important role in childhood quality of life, and thus this aspect of the developmental context was investigated further. The majority of children with HIV/AIDS in the study attended school. Although school fees were paid for, 25% of children did not attend school. Previously it was thought that cost was one of the largest barriers to attending school for children with HIV/AIDS in Uganda (Nyesigomwe, 2006; Whyte, 1998). This substantial proportion of children not attending school without the burden of school fees suggests that there are other reasons why they are unable to benefit from an education. Of the students who attend 58 school, 45% are performing in the average to above average range. Outside of school, the caregiving context also affects the child. An examination of the caregiving context revealed that the large majority of children (72%) were cared for by a relative other than their mother. There were only 17 children (28%) who were cared for by their biological mother. Most of the children with HIV in this region of Uganda were cared for by a grandmother (40%). Within the African context it has become common for households to be headed by grandparents (Nyesigomwe, 2006). None of the children within the sample were without a caregiver during the data collection. The results of the logistical regression provided partial support for the hypothesis that the younger the children were, the more likely they were to be living with their biological mother, controlling for SES. As they grew older, they were more likely to be living with another relative. Contrary to the hypothesis, SES was not significantly related to the caretaker. This change in caregiver may be due to the length of time their mother has lived with HIV/AIDS, with those who have had the disease the longest succumbing to the virus. The older children will have been more likely to have lost their mother to the disease and will thus need to be taken in and cared for my another caregiver. Including younger children (prior to age 6) may have made this trend more apparent. Research Question 1: Caregiving Context In trying to understand the caregiving context it was hypothesized that children would be older and have lower SES when living with a caregiver besides their biological mother. This was only partially substantiated with the data. There was not a difference between those children being cared for by their mother or another caregiver (grandmother or other). However, within the model, age was the strongest predictor of caregiver. The older children were, the longer their mother has had HIV/AIDS and thus the likelihood of her passing away or being too ill to care for 59 her children is increased. Contrary to prediction SES did not decrease as children aged. These socioeconomic results are reassuring because they demonstrate that children within the sample were not worse off financially once their mother is no longer able to take care of them. It has long been documented that the taking-in of children has exacerbated household poverty (Hodge, 2008), and that poverty has been found to impact adherence to daily drug regimens among HIVinfected children in Uganda (Bikaako-Kajura, et al., 2006). Within our sample children are not facing worse financial hardship once they are placed with another caretaker. The financial stability of families in the study may also be due to the involvement of CAI. The extra assistance that the program is able to provide may boost the family’s SES and thus there is not a disparity as was expected. Research Question 2: Child Illness Parameters It is important to understand the effect of SES and disease progression on the cognitive functioning of children within the sample. In the sample of children studied those who were on medication, and in a more advanced disease state did not exhibit lower cognitive functioning in any of the domains examined (Sequential Processing, Simultaneous Processing, Planning and Learning). These results support the importance of medications, and the potentially neuroprotective role that they may play in children. Several adult studies within sub-Saharan Africa found that the use of medications was correlated with increased neurocognitive performance, and improved performance on a test of executive function (Sacktor et al., 2006; Sacktor et al., 2009). The results from this sample of children demonstrate that medications may contribute to cognitive resiliency, as well as their medical well-being. However, many studies gauging the neuropsychological benefit of medications found that medication alone is not sufficient to reverse the inevitable neurocognitive decline that accompanies HIV/AIDS 60 (Koekkoek, de Sonneville, Wolfs, Licht, & Greelen, 2008; Shanbhag et al., 2005). Thus, another explanation for the cognitive resilience of children in more advanced disease states is that they are a robust survivor group. Because medical intervention was only provided through CAI within the two years before the collection of this data, the children studied may also represent those with a less aggressive form of the disease. Another explanation for the stability in cognitive function may be the measure used for disease progression. Although being on medication represents a CD4 count and Viral Load that is more advanced, using the actual numbers from the blood draws may have produced more accurate results. As hypothesized, SES did have an effect on the cognitive functioning (Planning, Learning, Simultaneous processing, and Sequential processing) of children, accounting for 27% of the variance. Children with HIV are at increased risk for developmental disabilities (Speigel & Bonwit, 2002), and those who have fewer resources (lower SES) may be in even greater jeopardy of exhibiting cognitive deficits. These results are consistent with the research of Hochhauser and colleagues (2008), in which they found that children in highly stressful environments are at particular risk for HIV-associated cognitive decline. Conversely, focusing on the children with the highest cognitive functioning revealed that higher SES may contribute to their cognitive resiliency. Of the domains examined, there were two domains of cognitive functioning significantly associated with SES: Learning and Planning. Learning was measured with the Atlantis and Rebus subtests on the KABC-2. These subtests assess the ability to learn new information. The learning construct emphasizes attention and concentration, the coding and storage of information and requires participants to generate strategies to learn and retain new information (Kaufman, & Kaufman, 2004). The Planning construct was measured using Pattern Reasoning and Story 61 Completion. These subtests look at nonverbal reasoning and planning skills as well as hypothesis testing. As a domain Planning is thought to assess high-level decision making and executive functioning processes (Kaufman, & Kaufman, 2004). Both Learning and Planning are extremely important to the children’s everyday functioning, and children who have higher SES are performing better than their peers who have fewer resources. As all of the children within the study were involved with Child Health Advocacy International and were receiving some resources, the effect of SES may be even more profound within the general population. Thus, interventions need to be focused on improving children’s access to resources. Research Question 3: Psychosocial Adjustment and School Achievement The results show that there is not a clear relationship between internalizing behavior problems, externalizing behavior problems and School Performance, Gender or Age. Thus, females are not less likely to have externalizing problems nor are older children less likely to exhibit internalizing and externalizing problems, as was hypothesized, but this was qualified by an interaction between School Performance and Gender as noted below. This is departs from the results found by Bachanas et al. (2001) in which age was a significant predictor of the children’s self-reported psychological adjustment. These results also disconfirms the hypothesis that age may be a reflection of adjustment to the diagnosis of HIV, caregiver adjustment or the death of a parent, and entry into school (Franklin, Lim, & Havens, 2005). According to these results the hypothesis that differences in psychosocial adjustment correspond to age was not supported. It has been postulated that with increased age comes increased cognitive ability which allows children to employ more sophisticated forms of coping as he or she ages (Engel & Melamed, 2002; Franklin et al., 2005). Instead there may be a more complicated relationship between psychosocial adjustment and within child factors. Although 62 age is not correlated with internalizing or externalizing behaviors, perhaps cognitive ability is the mediating variable that needs to be looked at in closer detail. The results do not support previous conclusions that females with HIV are more vulnerable to depressive symptomatology (Cook et al., 2002), or show symptoms of anxiety (Junqueira, Bellucci, Roccini, & Reimao, 2008). In fact, there was no significant difference between males and females in internalizing or externalizing behaviors. These results may suggest that males and females are equally capable of coping with the disease. The data also exemplifies the complexity of the relationship between these factors, showing that males and females have different externalizing behavior scores based on their school performance. More specifically, males who are not in school tended to have higher externalizing behavior problems than those who are performing in the below average or average range at school. It is unclear why these males are not attending school, however it could be related to the behavior difficulties that they are exhibiting or the lack of socialization may exacerbate negative behaviors. Surprisingly, there is a trend for the externalizing behaviors of males to increase with their performance in school. Males who performed in the above average group exhibited more problems than any other group. In fact males in the above average performance group were in the borderline range for externalizing behavior problems. Females showed a much different pattern of externalizing behavior problems. There was very little difference in the externalizing behavior concerns of females not attending school, those in the lowest performance group and those in the average performance group, however, females in the highest performance group exhibited the least externalizing behavior concerns. The differences in externalizing behaviors for males and females may be due to gender expectations. It may be more socially acceptable for males to exhibit externalizing behaviors, with the smartest and perhaps most popular boys exhibiting the 63 most behaviors. The opposite trend may be true for females, and those that are the performing well in school also know that socially it would be unacceptable for them to exhibit the kind of externalizing behaviors measured by the CBCL. Research Question 4: Factors Contributing to Psychosocial Adjustment and School Achievement Psychosocial Adjustment. Externalizing and Internalizing behaviors were considered separately in the analyses and revealed differing results. Cognitive Scores did not significantly contribute to the externalizing behaviors exhibited by the children with HIV/AIDS in Uganda. However, the caregiver did make a statistically significant unique contribution to the equation. Thus, children who were being cared for by their mothers versus a grandmother or other caregiver had different externalizing behavior scores. Children being raised by someone other than a grandmother or mother had the highest externalizing behavior scores, followed by those being cared for by their mother. Children being cared for by their grandmothers had the lowest average externalizing behavior concerns. These results were unexpected and show the complexity of the caregiving context. Children who were still with their biological mother had been predicted to show the fewest externalizing behavioral concerns, however if their mother was sick and unable to provide adequate care, the children may be acting out more. Furthermore, the group of children with their grandmothers exhibited the fewest behavior concerns. This may be due to the grandmother’s involvement from the time the child was young, leading to a more secure attachment with their caregiver. It will take further investigation to understand the benefits of having a grandmother as the primary caregiver, but it can be thought of as a protective factor leading to desirable outcomes. 64 The model for understanding predictors of internalizing behavior revealed that caregiver and cognitive scores were associated with these problems. Children’s cognitive scores were the best predictor of internalizing behavior problems. These results may be showing that when children have the ability to employ more sophisticated coping strategies based on their cognitive capabilities, they demonstrate fewer internalizing behavior concerns. These results are consistent with theorists who postulate that psychosocial adjustment is based on the child’s cognitive ability to cope with the stressor (Engel, & Melamed, 2002; Wertlieb et al., 1987). School Performance. The school performance of children within the sample of children with HIV living in Uganda was correlated with their cognitive scores as measured by the KABC2. Children with higher cognitive scores were more likely to be doing well in school. Conversely, there was a distinct difference in the cognitive ability of those children who were not attending school and those in the lowest performance group as compared to those children in the above average performance group. Regardless of who was caring for the child, the child’s cognitive ability score was the greatest predictor of school performance. These results are consistent with those found by Franklin et al. (2007) in which children with HIV/AIDS exhibited academic achievement in line with their cognitive ability scores. Conclusions In Uganda the AIDS epidemic has infected over 100,000 children (UNAIDS, 2007), yet there is a lack of research studying their quality of life and factors important in the development of meaningful interventions. The aim of this study was to examine the psychosocial and academic outcomes of those children with vertically transmitted HIV/AIDS surviving into the school years within Uganda. Bachanas and colleagues (2001) model of stress and coping for children with HIV/AIDS helped to organize the dynamic environmental and personal factors 65 contributing to child outcomes. Specifically the Caregiving Context and Child Illness Parameters were examined to better understand internalizing and externalizing behavior problems, as well as school performance. Prior to this study, there was no research investigating the caregiver and socioeconomic conditions of children with HIV/AIDS in Uganda. This study revealed that there was not a clear relationship between age, SES and Caregiver. When looking at the child illness parameters, it was discovered that as children’s SES increased so did their cognitive scores regardless of whether or not their infection had progressed to a stage where they needed to take medication. Although more investigation is necessary, socioeconomic status may be neuroprotective, or a protective factor for children with HIV/AIDS in Uganda. Furthermore, because there was no difference in cognitive performance for children on medication and those not yet in need of medication. The medication itself may be playing an important role in curbing the detrimental effects of the virus on the brain. Another explanation however is that this sample of children are robust survivors who may have a less aggressive form of the disease. The majority of children exhibited positive psychosocial adjustment with about half performing in the average to above average range in school as compared to their same age typically developing peers. Cognitive functioning was found to be related to Internalizing behaviors and School Performance, with higher cognitive functioning associated with fewer internalizing behaviors and higher school performance. Socioeconomic status was found to be associated with Cognitive functioning. Thus, there is an intricate interweaving of factors from the caregiving context and child illness parameters contributing to these outcomes. Socioeconomic status is correlated with Cognitive Functioning, and higher Cognitive Functioning is related to fewer internalizing behavior problems and better school outcomes. 66 School performance, externalizing behaviors and gender have a complex relationship in which gender may mediate the relationship between Externalizing behaviors and School Performance. The caregiving context may influence externalizing behaviors. Although only a trend within the data, caregiver was the strongest predictor of externalizing behavior problems. All of the outcome variables researched are influenced by both the caregiving context and child illness parameters. Specifically, SES was found to have an effect on cognitive functioning. Cognitive functioning as well as caregiver had an effect on the outcome variables: child psychosocial adjustment and school performance (See Figure 7.). In planning for meaningful intervention for children with HIV/AIDS within Uganda, both caregiving context (SES and Caregiver) and child illness parameters (cognitive functioning) need to be taken into consideration. Medication has long been the focus of intervention, and results show that there may be some benefit to taking medication once CD4 Cell Count and Viral Load indicate their use. However more focus needs to be given to cognitive performance, which played a large role in the child outcome measures of interest. Thus, when targeting the well-being of children in Uganda living with HIV/AIDS organizations need to look beyond medical intervention and include social programs that focus on the Caregiver and Cognitive Functioning of the child. Future Research Results from this study support the evidence to date which strongly endorses multidisciplinary treatment to facilitate comprehensive management of the medical, psychological and social needs of infected children and adolescents (Earls, Raviola, & Carlson, 2008). However, more research is needed to understand the relationships found in this study. Research using path analyses to understand the intricate connections found in this research will be important to clarify the causal relationships between these variables. Future research should 67 also aim to collect more information about the wellbeing and health of the primary caregiver, the coping strategies used by caregivers, and the quality of the relationship with the caregiver. In this research, although it is clear that the primary caregiver is important to the child’s well-being it is not clear why there are differences among caregivers. Understanding these caregiver characteristics may inform the intervention, as most of the time placement of the child is beyond the control of the helping organization. Future research should also focus on developing cognitive skills, like the research being done by Boivin and colleagues (2010), that seeks to produce neuropsycological benefits for Ugandan children with HIV using a computerized cognitive rehabilitation. Because of the effect that cognitive skills have shown to have on important outcome measures such as internalizing behaviors and school performance, interventions that are feasible and beneficial to children’s cognition need to be one focus of future research and intervention. Limitations One of the most important limitations of the study is the recognition that these findings reflect a particular cultural context in Uganda and this research was conducted from a Western perspective. The research questions and methods for answering them were developed by a student who is not part of Ugandan culture. To address this, individuals who were a part of the culture were involved in the design of the study. Although cultural awareness was an important aspect of study design, there is a risk that the results will not be accurate due to different cultural expectations and interpretations. Another limitation of this study is the number of children for whom data were collected. A larger sample of children would provide more statistical power, and allow for more robust conclusions. Furthermore the study would have been stronger if there had been a control group. 68 Children matched for demographic characteristics, perhaps a sibling from the same home environment without HIV/AIDS would allow for the identification of characteristics unique to the population of school age children with HIV/AIDS. Without having a control group of typically developing children within the region, it is not possible to draw conclusions about the effects of HIV/AIDS. It may be that all children in the region are exhibiting the same difficulties due to other contextual factors. Furthermore, because the same children may have been a robust sample of survivors it is difficult to understand if and how the virus was impacting their lives. One other limitation of the assessment measures was the use of only the CBCL to measure psychosocial adjustment. Although used in many different cultures, the CBCL has not been standardized with the unique population of children from Kayunga, Uganda for which it is being utilized in this study. Another limitation is that it relied on the caregiver’s perception of the child’s behavior, which may be different from the child’s perception. The caregiver may also have a different perception of the child based on the relationship with the child. Future studies should aim to collect data from multiple informants including the child, and the classroom teacher. Another limitation to recognize is the potential difference in treatment throughout the life of the child. The oldest children would have needed care before Child Health Advocacy International was present in Kayunga. Thus, some children may have received excellent medical treatment, whereas others who could not afford to go to the hospital would have gone without treatment. For the past few years that the NGO has operated out of Kayunga the care that children received has been consistent and equitable. However, there most likely has been some variation in medical treatment between children at earlier stages in their life. The study is limited because researchers are unable to control for differences in medical interventions from 69 the time of birth, which may have had an impact on the overall health of the child. This study is also limited in that the data are from one point in time. Data from one time point can provide a good snapshot of child adjustment and cognitive functioning, however it is just a static and single picture. Future longitudinal studies, collecting data over multiple points of time will be important to truly understand the developmental trajectories of schoolchildren with vertically transmitted HIV/AIDS within Uganda. Research such as this on the quality of life of schoolchildren with HIV/AIDS will continue to be important. Identifying the risk and protective factors is just the first step in helping to improve the care provided to thousands of children in this resource poor region of sub-Saharan Africa. Focusing on the caregiving context has the potential to drastically improve the adjustment of children living with HIV/AIDS. Furthermore, cognitive resiliency should also be a goal of intervention for nations and organizations that continue to address this epidemic. 70 Table 1. Description of KABC-II subtests administered Scale

 Subtest
 Description
/What
it
measures
 Sequential
 Number
Recall

 Processing
 
 Child
repeats
a
series
of
numbers
in
the
same
 sequence
the
examiner
said
them.

Measures
 sequential
processing
and
short‐term
memory.
 Word
Order
 
 
 The
child
touches
a
series
of
silhouettes
of
common
 objects
in
the
same
order
as
the
examiner
said
the
 names
of
the
objects.

Measures
sequential
 processing
and
short‐term
memory.
 
 Simultaneous
 Block
Counting
 Processing

 
 
 
 The
child
counts
the
exact
number
of
blocks
in
 various
pictures
of
stacks
of
blocks.
The
stacks
are
 configured
such
that
one
of
more
blocks
is
hidden
or
 partially
hidden
from
view.

Measures
visualization
 of
objects
in
3‐dimensions.
 Rover
 Planning
 The
child
moves
a
toy
dog
to
a
bone
on
a
 checkerboard‐like
grid
that
contains
obstacles
 
 (rocks
and
weeds)
and
tries
to
find
the
quickest
path
 i.e.
the
one
that
takes
the
fewest
moves.

Measures
 visual
processing
 Triangles
 For
most
items,
the
child
assembles
several
identical
 foam
triangles
(blue
on
one
side,
yellow
on
the
 
 other)
to
match
a
picture
of
an
abstract
design.
For
 easier
items,
the
child
assembles
a
set
of
colorful
 plastic
shapes
to
match
a
model
constructed
by
the
 examiner
or
shown
on
the
easel.

Measures
visual
 ability
and
spatial
relationships.
 Pattern
Reasoning
 The
child
is
shown
a
series
of
stimuli
that
form
a
 logical,
linear
pattern,
but
one
stimulus
is
missing.
 
 The
child
completes
the
pattern
by
selecting
the
 correct
stimulus
from
an
array
of
4
to
6
options
at
 the
bottom
of
the
page.

Measures
nonverbal
 reasoning
skills
and
hypothesis
testing.
 Story
Completion
 The
child
is
shown
a
row
of
pictures
that
tell
a
story,
 but
some
of
the
pictures
are
missing.
The
child
is
 
 given
a
set
of
pictures,
selects
only
the
ones
that
are
 needed
to
complete
the
story
and
places
the
missing
 pictures
in
their
correct
locations.


Measures
 nonverbal
planning
or
reasoning
skills.
 
 71 Table
1
(Cont’d). Description of KABC-II subtests administered
 
 Learning
 Atlantis
 The
examiner
teaches
the
child
nonsense
names
for
 fanciful
pictures
of
fish,
plants
and
shells.
The
child
 
 demonstrates
learning
by
pointing
to
each
picture
 (out
of
an
array
of
pictures)
when
it
is
named.

 Measures
the
ability
to
learn
new
information,
 specifically
the
association
between
pictures
and
 nonsense
names.
 Rebus
 The
examiner
teaches
the
child
the
word
or
concept
 associated
with
each
particular
rebus
(drawing)
and
 
 the
child
then
“reads”
aloud
phrases
and
sentences
 composed
of
these
rebuses.

Measures
ability
to
 learn
new
information.
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 72 Table
2.

Demographic
Characteristics

 
 
 Age
in
 Years
 
 6­8
 
 9­11
 
 12­14
 
 15­16
 
 Total(60)
 SES
 Groups
 
 Low
 
 Med
 
 High
 
 Total(59)
 Gender
 
 Male

 Disease
 Progression
 On
ART
 Not
on
 ART
 Caregiver
 Female
 Other
 Mother
 Grand­ mother
 5
 17
 8
 14
 7
 9
 6
 11
 10
 8
 13
 4
 6
 11
 6
 7
 5
 8
 6
 2
 5
 2
 2
 2
 2
 2
 0
 2
 24(40%)
 36(60%)
 23(38%)
 37(62%)
 19(32%)
 17(28%)
 24
(40%)
 
 
 
 
 
 
 
 14
 24
 13
 25
 9
 12
 17
 9
 9
 7
 11
 6
 5
 7
 1
 2
 3
 0
 3
 0
 0
 24(40%)
 35(60%)
 23(38%)
 36(62%)
 18(30%)
 17(29%)
 24(41%)
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 73 Table
2
(cont’d).

Demographic
Characteristics

 
 
 Age
in
 Years
 
 6­8
 
 9­11
 
 12­14
 
 15­16
 
 Total(60)
 SES
 Groups
 
 Low
 
 Med
 
 High
 
 Total(59)
 School
Performance
 Above
 Average
 Below
 Average
 Not
 Attending
 2
 3
 6
 11
 6
 8
 6
 1
 4
 3
 5
 1
 1
 0
 1
 2
 13(22%)
 14(23%)
 18(30%)
 15
(25%)
 
 
 
 
 9
 5
 13
 11
 2
 8
 5
 3
 2
 1
 0
 0
 13(22%)
 14(24%)
 18(30%)
 14(24%)
 Represented
in
Number
of
Children
per
Group
 
 
 
 
 
 
 74 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 Table
3.

Logistic
Regression
Predicting
Likelihood
of
being
Cared
for
by
Mother
 
 
 
 
 
 
 
 
 
 95%
C.I.
for
EXP(B)
 
 B
 S.E
 Wald
 Df
 Sig.
 Exp(B)
 Lower
 Upper
 
 Age
 ‐.246
 .123
 3.967
 1
 .046
 .782
 .614
 .996
 
 SES

 ‐.004
 .102
 .002
 1
 .966
 .996
 .815
 1.216
 
 Constant
 1.465
 1.229
 1.421
 1
 .233
 4.328
 
 
 
 
 
 
 
 

 75 Table
4.

Means
and
Standard
Deviations
of
KABC­II
scores
by
Medication
Status
 
 Medication
Status
 Statistic Learning
 Not
on
Medication
 Mean
 .0092
 Std.
Deviation
 1.25767
 Minimum
 ‐3.30
 Maximum
 3.72
 Range
 7.02
 On
Medication
 Mean
 ‐.0226
 Std.
Deviation
 1.43201
 Minimum
 ‐2.01
 Maximum
 3.00
 Planning
 Not
on
Medication
 On
Medication
 Sequential
 Processing
 Not
on
Medication
 On
Medication
 Range
 Mean
 Std.
Deviation
 Minimum
 Maximum
 Range
 Mean
 Std.
Deviation
 Minimum
 Maximum
 Range
 Mean
 Std.
Deviation
 Minimum
 Maximum
 Range
 Mean
 Std.
Deviation
 Minimum
 Maximum
 Range
 76 5.02
 .0538
 1.29297
 ‐2.46
 5.08
 7.54
 ‐.0872
 1.00917
 ‐1.56
 2.16
 3.71
 ‐.0515
 1.34146
 ‐3.97
 3.15
 7.12
 .0738
 1.04730
 ‐2.43
 1.64
 4.07
 Table
4
(cont’d).

Means
and
Standard
Deviations
of
KABC­II
scores
by
Medication
Status
 
 Simultaneous
 Not
on
Medication
 Mean
 ‐.0205
 Processing
 Std.
Deviation
 1.49412
 Minimum
 ‐4.54
 Maximum
 3.85
 Range
 8.39
 On
Medication
 Mean
 .0238
 Std.
Deviation
 1.55540
 Minimum
 ‐3.18
 Maximum
 3.21
 Range
 6.39
 77 

 Table
5.

Test
of
Between­Subjects
Effects
to
assess
psychosocial
adjustment
and
school
 performance
by
gender
and
age
 
 
 Dependent
 Type
III
Sum
 df
 Mean
 F
 Sig.
 Partial
 Variable
 of
Squares
 Square
 Eta
 Squared
 Corrected
 Internal
 1211.36
 8
 151.42
 2.23
 .041
 .267
 Model
 External
 960.35
 8
 120.04
 2.06
 .058
 .252
 Intercept
 Internal
 11023.58
 1
 11023.58
 162.4
 .000
 .768
 External
 10778.47
 1
 10778.47
 184.97
 .000
 .791
 Age
 Internal
 3.05
 1
 3.05
 .045
 .833
 .001
 External
 4.58
 1
 4.58
 .079
 .780
 .002
 School
Group
 Internal
 340.68
 3
 113.56
 1.63
 .185
 .093
 External
 277.89
 3
 92.63
 1.59
 .204
 .089
 Gender
 Internal
 191.09
 1
 191.09
 2.82
 .100
 .054
 External
 6.11
 1
 6.11
 .105
 .747
 .002
 SchoolPerform
 Internal
 606.17
 3
 202.06
 2.98
 .040
 .154
 *
Gender
 External
 765.6
 3
 255.2
 4.38
 .008
 .211
 Error
 Internal
 3326.23
 49
 67.88
 
 
 
 External
 2855.05
 49
 58.27
 
 
 
 Total
 Internal
 181752
 58
 
 
 
 
 External
 176963
 58
 
 
 
 
 Corrected
 Internal
 4537.57
 57
 
 
 
 
 Total
 External
 3815.4
 57
 
 
 
 
 
 78 Table
6.
Behavior
Concerns
by
Age
and
Gender
 
 
 Internalizing
Behaviors
 Externalizing
Behaviors
 
 
 AGE
 
 6­8
 9­11
 12­14
 15­16
 
 
 Gender
 
 Male
 Female
 Normal
 Borderline
 Clinical
 Normal
 Borderline
 Clinical
 16
 10
 10
 3
 2
 5
 1
 0
 2
 6
 2
 1
 13
 17
 10
 3
 1
 1
 1
 1
 6
 3
 2
 0
 
 
 
 
 
 
 14
 25
 5
 3
 5
 6
 17
 26
 2
 2
 4
 7
 
 Total Problem Behaviors Normal Borderline Clinical AGE 6-8 9-11 12-14 15-16 15 14 10 3 3 3 2 0 2 4 1 1 18 24 2 6 3 5 Gender Male Female 79 Table
7.

Nominal
Regression
to
Assess
Variables
Contributing
to
Externalizing
Behaviors
 
 Model
 Standardized
 
 
 t
 Sig.
 Coefficients
 Beta
 Constant
 
 34.078
 .000
 Caregiver
 ‐.305
 ‐2.372
 .021
 SRTotalCog1
 ‐.027
 ‐.207
 .837
 
 80 Table
8.

Nominal
Regression
to
Assess
Variables
Contributing
to
Internalizing
Behaviors
 
 Model
 Standardized
 
 
 t
 Sig.
 Coefficients
 Beta
 Constant
 
 30.462
 .000
 Caregiver
 ‐.066
 ‐.520
 .605
 Cognitive
 .318
 2.488
 .016
 Score
 
 81 Table
9.


Parameter
Estimates
of
Variables
Contributing
to
School
Performance
with
the
 Above
Average
Performance
Group
as
the
Reference
Category
 
 School
Performance
Group*
 B
 Std.
 Wald
 df
 Sig.
 Exp(B)
 Error
 Not
 Intercept
 .088
 .613
 .021
 1
 .886
 
 Attending
 CogScore
 ‐.851
 .280
 9.229
 1
 .002
 .427
 School
 Mother
 .611
 .973
 .394
 1
 .530
 1.842
 Grandmother
 .228
 1.316
 .030
 1
 .863
 1.256
 Other
 0**
 
 
 0
 
 
 Below
 Intercept
 .147
 .600
 .060
 1
 .806
 
 Average
 CogScore
 ‐.613
 .252
 5.920
 1
 .015
 .542
 School
 Mother
 ‐.023
 1.022
 .000
 1
 .982
 .978
 Performance
 Grandmother
 1.858
 1.119
 2.758
 1
 .097
 6.413
 Other
 0**
 
 
 0
 
 
 Average
 Intercept
 .146
 .593
 .061
 1
 .805
 
 School
 CogScore
 ‐.405
 .236
 2.933
 1
 .087
 .667
 Performance
 Mother
 .232
 .953
 .060
 1
 .807
 1.262
 Grandmother
 1.092
 1.153
 .898
 1
 .343
 2.982
 Other
 0**
 
 
 0
 
 
 
 *The
reference
group
is
Above
Average
School
Performance
 **This
parameter
is
set
to
zero
because
it
is
redundant
 
 
 82 Figure 1. Stress and Coping model for predicting psychosocial adjustment in HIV-infected children (Buchanas et al., 2001). 
 Illness
 Parameters
 *HIV
Status
 
 Stress
 *Daily
 
 Hassles
 Caregiver

 Adaptational
 Outcome
 Coping
Strategies
 *Palliative
 *Adaptive
 Family
 Functioning
 *Resources
 *Support
 Demographic
 Parameters
 *Child’s
Age
 *Child’s
Sex
 *Family
 *SES
 Caregiver
 Adjustment
 Child
Adaptational
 Processes
 Child
Adjustment
 Expectations
 *Health
locus
 of
control
 Coping
Strategies
 *Palliative
 *Adaptive
 83 Figure 2. Immunologic Category Definitions Based on the CD4 count and/or percentage *If the CD4+ percent indicate different classification categories, the child should be classified into the more severe category. 84 Figure 3. Histogram of Children by Gender and Age For interpretation of the references to color in this and all other figures, the reader is referred to the electronic version of this dissertation. 85 Figure 4. Histogram of the Number of Children by Caregiver and Age 86 Figure 5. Mean Externalizing Behavior Scores by School Performance and Gender 87 Figure 5.1. Scatter Plot of Externalizing Behaviors by School Performance and Gender 88 Figure 5.2. Boxplot of Externalizing Behaviors by School Performance and Gender 89 Figure 6. Mean Internalizing Behavior Scores by School Performance and Gender 90 Figure 6.1. Scatter Plot of Internalizing Behaviors by School Performance and Gender 91 Figure 6.2. Boxplot of Internalizing Behaivors by School Performance and Gender 92 Figure 7. Results: Connecting the Caregiving Context, Child Illness Parameters, and Child Outcomes 
 Caregiving
 Context
 Child
Illness
 Parameters
 Child
Outcomes
 
 Caregiver
 Socioeconomic
 Status
 Externalizing
 Behaviors
 Internalizing
 
 Behaviors
 
 Gender
 Cognitive



 Functioning
 School
 Performance
 93 APPENDICES 94 Appendix A. Consent Form in English Study number: _______________________ CONSENT FORM 
 A.
Introduction:
We
request
that
you
let
your
child
be
in
our
study
looking
at
whether
 cognitive
effects
of
HIV/AIDS
in
children
can
be
treated.
The
AIDS
virus
may
affect
the
 child’s
brain
resulting
in
poor
memory,
attention,
language
and
learning.
We
ask
that
you
 read
this
form
and
ask
any
questions
you
may
have
before
agreeing
to
be
in
the
study.
 
 This
study
is
being
conducted
by
Paul
Bangirana
from
Makerere
University,
Michael
J.
 Boivin,
Michigan
State
University,
Bruno
Giordani,
University
of
Michigan,
and
others
 from
Mulago
Hospital.
 
 B.
Study
Purpose:
The
purpose
of
this
study
is
to
determine
whether
a
computerised
brain
 training
program
improves
memory,
attention,
language
and
learning
in
children
who
have
 the
HIV/AIDS
virus.
This
study
will
also
look
at
whether
this
training
improves
academic
 performance.
A
new
computerised
assessment
of
memory,
attention
and
learning
will
also
 be

 tested
in
this
study.

 
 C.
Study
Procedures:

 If
you
agree
to
participate
in
this
study,
we
will
ask
you
to
do
the
following:

 1. 

To
let
us
ask
a
few
questions
about
the
medical
condition
of
the
child
and
allow
us
to
 do
careful
physical
examination
of
the
child.

 2. 


If
he/she
is
healthy,
we
will
then
perform
an
assessment
on
your
child
of
his/her
 memory,
attention,
language,
reasoning
and
academic
skills.
Some
of
thee
tests
will
 be
done
using
a
new
computerised
assessment
that
is
being
used
for
the
first
time
in
 this
setting.
All
these
assessments
will
take
about
2
hours
to
complete.
If
your
child
 gets
tired,
he/she
will
be
given
time
to
rest
before
proceeding
with
the
tests.

 3. 


A
blood
draw
of
5ml
(about
one
teaspoon)
will
be
drawn
at
the
end
of
these
tests.
 This
blood
sample
will
be
used
to
test
how
well
your
child’s
body
fights
infection.
 4. In
order
to
see
whether
this
training
improves
memory,
attention,
learning
and
 language,
we
will
randomly
assign
your
child
to
either
a
group
receiving
 computerized
brain
training
exercises
to
improve
attention,
learning,
language
and
 memory
or
a
group
that
receives
no
training.
If
your
child
is
assigned
to
the
group
 receiving
brain
training,
he/she
will
receive
a
training
session
once
a
week
for
two
 months.
These
training
sessions
will
be
done
from
home,
school
or
from
our
study
 office
if
that
is
convenient
for
you
and
will
start
a
week
after
mental
ability
tests.
 These
exercises
last
between
45
and
60
minutes.
If
your
child
is
assigned
to
the
 group
that
does
not
receive
this
training,
he/she
will
not
do
these
brain
training
 exercises.
 5. 

All
the
children
will
be
assessed
again
at
the
end
of
training
(two
months
later)
using
 the
new
computerized
assessment
and
the
performance
of
the
two
groups
 compared.
 95 6. 

At
the
end
of
these
assessments,
a
final
blood
draw
of
another
5
ml
will
be
drawn
to
 see
whether
your
child’s
body’s
ability
to
fight
infection
affects
the
potential
gains
 from
the
brain
training
exercises.

 
 D. Risks of Study Participation The
study
has
minimal
risks.
The
risks
of
having
blood
drawn
are
bleeding
at
the
site,
pain
 at
the
site
for
a
time,
bruising
and
infection.
We
are
drawing
a
small
amount
of
blood
that
 should
not
affect
your
child’s
blood
volume.
However,
we
have
not
had
any
case
in
our
 previous
studies
where
such
a
blood
draw
led
to
any
infection.
In
a
study
like
this,
there
is
a
 risk
that
study
questions
or
tests
could
embarrass
a
child.
We
shall
try
not
to
ask
questions
 or
perform
tests
that
will
embarrass
you
or
your
child,
if
however
you
feel
that
a
particular
 question
or
test
is
embarrassing,
there
is
no
requirement
that
your
child
answers
questions
 or
performs
such
a
test.

 There
is
very
little
risk
of
the
release
of
information
from
your
child’s
health
or
study
 records
because
they
will
be
kept
safe
and
not
shared
with
anyone
else.
Reports
about
this
 research
will
not
reveal
the
identity
of
your
child.

 E. Benefits of Study Participation 1. Basing
on
evidence
from
other
studies,
we
hope
that
the
brain
training
exercises
 could
be
of
benefit
to
school‐age
children
who
are
infected
and
who
struggle
with
 attention,
memory,
language,
and
other
cognitive
skills
as
a
result
of
the
disease.
 Your
child
therefore
stands
a
chance
to
benefit
from
these
brain
training
exercises.
 If
your
child
is
not
in
the
group
receiving
the
training
and
is
found
to
have
severe
 problems
in
the
areas
tested,
you
will
be
invited
to
receive
this
training
if
it’s
found
 to
be
effective.
 2. Basing
on
our
assessments,
we
shall
also
make
appropriate
referrals
if
we
believe
 your
child
may
require
other
specialist
help
which
we
can’t
provide.

 

 F.
Alternatives
to
Study
Participation
 Brain
training
exercises
have
been
tested
in
other
countries
with
other
types
of
brain
injury
 but
to
our
knowledge
have
never
been
tested
with
African
children
affected
by
infectious
 diseases
affecting
the
CNS
such
as
HIV,
cerebral
malaria
or
meningitis.
We
are
not
aware
of
 any
appropriate
alternative
assessment
tests
in
Uganda
to
measure
the
types
of
learning
 we
are
assessing
(memory,
attention
and
learning)
that
can
be
done
besides
the
ones
that
 we
are
going
to
perform
on
you
child.
 
 G.
Study
Costs/CompensationYou
will
not
incur
any
costs
in
participating
in
this
study,
a

 transport
refund
of
5000/=
will
be
given
to
you.
 
 H.
Research
Related
InjuryThere
are
no
potential
risks
of
injury,
as
no
invasive
procedure
 will
be
performed
on
your
child.
If
you
or
your
child
experiences
physical
injury
or
illness
 as
a
result
of
participating
in
this
research
study,
contact
Dr.
Opika
Opoka
Robert
or
Mr.
 Paul
Bangirana
at
0772996164
or
0772673831
respectively.
 
 I.
Voluntary
Nature
of
the
StudyParticipation
in
this
study
is
voluntary.
Your
decision
 whether
or
not
to
participate
in
this
study
will
not
affect
your
current
or
future
relations
 with
Kayunga
Hospital
or
Childhealth
Advocacy
International.
If
you
decide
to
participate,
 96 you
are
free
to
withdraw
at
any
time
without
affecting
those
relationships.
Refusing
to
 participate
will
not
alter
your/your
child’s
usual
health
care
or
involve
any
penalty
or
loss
 of
benefits
to
which
you
or
your
child
are
otherwise
entitled.
 
 J.
ConfidentialityThe
records
of
this
study
will
be
kept
private.
In
any
publications
or
 presentations,
we
will
not
include
any
information
that
will
make
it
possible
to
identify
you
 or
your
child
as
a
subject.
Your
child’s
record
for
the
study
may,
however,
be
reviewed
by
 the
Faculty
of
Medicine,
Mulago
Hospital
and
University
of
Michigan
who
have
authorized
 this
study.

No
study
information
will
be
recorded
in
the
child’s
hospital
record.

Any
study
 data
that
is
to
be
transmitted
via
the
Internet
will
be
encrypted
with
secure
passwords
 known
to
the
sender
and
recipient(s)
only.There
is
a
possibility
that
your
participation
in
 this
study
may
be
known
by
your
neighbors
as
we
come
to
visit
your
home
or
give
your
 child
the
brain
training
exercises.
We
shall
minimize
this
risk
by
being
inconspicuous
and
 parking
far
from
your
home.
 
 K.
Contacts
and
Questions
If
you
have
any
questions
about
this
study,
please
contact
the
 responsible
investigator Mr
Paul
Bangirana,
Department
of
Psychiatry,
P.
O.
Box
7072,
 Kampala;
Telephone
0772‐673831;
Email
pbangirana@yahoo.com
and
Dr.
Robert
Opika
 Opoka
0772996164.
 
 L.
Participant
rights
 If
you
have
any
questions
or
concerns
regarding
the
study
and
would
like
to
talk
to
 someone
other
than
the
researcher(s),
you
are
encouraged
to
contact
the
Makerere
 University
Faculty
of
Medicine
Institutional
Review
Board
on
041530020.
If
you
have
any
 questions
or
concerns
regarding
your
rights
as
a
study
participant,
or
are
dissatisfied
at
 any
time
with
any
aspect
of
this
study,
you
may
contact
‐
anonymously,
if
you
wish
–
Dr
 Charles
Ibingira,
Chairman
of
the
Makerere
University
Faculty
of
Medicine
Institutional
 Review
Board,
on

phone
on
041530020.

You
will
be
given
a
copy
of
this
form
to
keep
for
 your
records.
 M. Consent A
copy
of
this
consent
form
will
be
given
to
you
if
you
wish.

 
 The consent form has been explained to me and I give consent for my child to take part in the study. I understand that I am free to choose for my child to be in this study. I understand that by signing this consent form, I do not waive any of my legal rights. Signing this consent form does not relieve the investigators of responsibility for adverse events as a result of my participation in this study. Signing this consent form indicates that I have been informed about the research study in which I am voluntarily agreeing to participate. I will be given a copy of this form for my records. 
 Name
of
Parent/Guardian
1

 
 
 
 
 Name
of
Parent/Guardian
2
 
 
 

 
 
 97 
 Signature
or
Fingerprint
*
of
Parent/Guardian
1
 
 
 
Date/Time
 
 
 
 Signature
or
Fingerprint
*
of
Parent/Guardian
2
 
 
 
Date/Time
 
 
 
 Name
of
Person
Administering
Consent
Form
 
 
 

 
 
 
 Signature
of
Person
Administering
Consent
Form

 
 
Date/Time
 ________________________________________________________________________
 *If
the
patient,
parent
or
guardian
is
unable
to
read
and/or
write,
a
witness
should
be
 present
during
the
informed
consent
discussion.

After
the
written
informed
consent
form
 is
read
and
explained
to
the
patient,
parent
or
guardian,
and
after
they
have
orally
 consented
to
their
or
their
child’s
participation
in
the
study,
and
have
either
signed
the
 consent
form
or
provided
their
fingerprint,
the
witness
should
sign
and
date
the
consent
 form.

By
signing
the
consent
form,
the
witness
attests
that
the
information
in
the
consent
 form
and
any
other
written
information
were
explained
to
and
understood
by
the
parent
or
 guardian
and
that
informed
consent
was
freely
given
by
the
patient,
parent
or
guardian.
 
 
 Name
of
Person
Witnessing
Consent
(printed)
 
 
 
 
 
 
 Signature
of
Person
Witnessing
Consent
 
 
 
 Date/Time

 
 
 
 Signature
of
investigator
 
 
 
 
 
 Date/Time

 
 98 Appendix B. Consent form in Luganda 
 Nnamba
y’okunonyereza________________
 

 FOOMU
EKKIRIZA
OKUNOONYEREZA


 
 A.
Enyanjula
 Tukusaba
okirize
omwana
wo
yetabe
mu
kunoonyereza
kwaffe
okulaba
oba
obuvune
mu
 kutegera
obuletebwa
akawuka
ka
siliimu
busobola
okujanjabibwa
mu
baana.
Akawuka
ka
 siliimu
kayinza
okukosa
obwongo
bw’omwana
nekimuletera
obunafu
mu
kujukira,
 okufaayo,
olulimi
n’okuyiga.

Tukusaba
osome
foomu
eno
era
obuuze
ekibuzo
kyona
 kyewandyagadde
nga
tonaba
kukiriza
kwetaba
mu
kunonyereza
kuno.
 
 Okunonyereza
kuno
kukolebwa
Paul
Bangirana
okuva
e
Makerere
University
awamu
ne
 Michael
J.
Boivin,
Michigan
State
University;
Bruno
Giordani,
University
of
Michigan,
 n’abalala
okuva
e
Mulago
Hospital.

 
 B. Ebigendererwa Ekigendererwa
ky’okunonyereza
kuno
kwe
kumanya
oba
emisomo
ku
kompyuta
egiwagala
 obwongo
giyamba
okujukira,
okufaayo,
olulimi,
n’okuyiga
mu
baana
abalina
akawuka
ka
 siliimu.

Okunonyereza
kuno
era
kujja
kulaba
oba
emisomo
gino
giyamba
enkola
y’omwana
 muby’okusoma.
Enkola
empya
eya
kompyuta

egezesa
okujukira,
okufaayo,
n’okuyiga
nayo
 egenda
kuba
egezesebwa
mukunonyereza
kuno.
 
 C. Okunonyereza kujja genda bwekuti: Bw’onokiriza
okwetaba
mu
kunonyereza
kuno,
tujja
kusaba
okiriza
tukole
bino:
 
 1. Okirize
tukubuuzeyo
ebibuuzo
bitono
ebikwata
ku
mbeera
y’obulamu
bw’omwana
 era
otukirize
okwekebejja
n’obwegendereza
omubiri
gw’omwanawo
mungeri
 ey’ekisawo.
 2. Singa
omwana
tukizula
nti
mulamu
bulungi,
tujja
kugezesa
okujukira
kwe,
okufaayo,
 olulimi,
okulowooza
n’enkola
ye
muby’okusoma.
Okugezesebwa
okumu
kujja
 kweyambisa
enkola
empya
eya
kompyuta,
egenda
okukozesebwa
omulundi
 ogusooka
mu
ngeri
ng’eno.
Okugesebwa
kwona
awamu
kujja
kumala
essawa
nga
 bbiri.
Ssinga
omwana
akowa,
ajja
kuwebwa
akaseera
awumulemu,
alyoke
agende
 maaso.

 3. Oluvanyuma
lw’okuzesebwa,
omwana
tujja
kumugyako
omusaayi
akagiko
ka
sukaali
 nga
kamu
(5ml).
Omusaayi
guno
tujja
kugweyambisa
okukebera
engeri
omubiri
 gw’omwanawo
gyegulwanyisamu
obulwadde.
 4. Okusobola
okumanya
oba
emisomo
gino
giyamba
okujukira,
okufaayo,
okuyiga
 n’olulimi,
Omwanawo
ajja
kutekebwa
mu
kimu
ku
bibinja
bino:
ekibinja
ekifuna
 emisomo
gya
kompyuta
egiwagala
obwongo
okuyamba
okufaayo,
okuyiga,
olulimi
 n’okujukira
oba
ekibinja
ekitagenda
kuwebwa
misomo.
Ssinga
omwana
wo
 atekebwa
mu
kibinja
ekifuna
emisomo,
ajja
kusomesebwa
omulundi
gumu
mu
wiiki
 okumala
emyezi
ebiri.
Okusomesebwa
kujja
kutandiika
wiiki
emu
oluvanyuma
 99 lw’ebigezo
mukutegera
era
kuyinza
okukolebwa
eka,
kusomero
oba
mu
offisi
yaffe,
 bwekiba
tekibakalubiriza.
Emisomo
gino
gitwala
eddakiika
ana
mu
ttano
(45)
oba
 essaawa
emu.
Omwanawo
singa
atekebwa
mukinja
ekirala,
tajja
kufuna
misomo
 gino.
 5. 

Emisomo
nga
giwedde
(oluvanyuma
lw’emyezi
ebbiri),
abaana
bonna
bajja
kuddamu
 bagezesebwe
nga
tukozesa
enkola
empya
eya
kompyuta,
oluvanyuma
 tugerageranye
enkola
y’abaana
mubibinja
byombi.
 6. 
Oluvanyuma
lw’okugezesebwa,
omwana
tujja
kumugyako
omusaayi
ogusembayo,
 akagiko
ka
sukaali
nga
kamu
(5ml).
Guno
tujja
kugukozesa
okulaba
oba
obusobozi
 bw’omubiri
gw’omwanawo
okulwanyisa
obulwadde
bwekusa
ku
kuganyulwa
 omwana
kwayinza
okufuna
mu
misomo
egiwagala
obwongo.
 
 D.
Ebizibu.
 Okunonyereza
kuno
kulimu
obubenje
butono
ddala.
Obuzibu
obuli
mu
kugyako
omusaayi
 buli
nti
omwana
ayinza
okulumwa
ng’afumitiddwa
akayiso
akaggyako
omusaayi
oluusi
 n’avaamu
omusaayi
awafumitiddwa
okumala
akaseera
oba
n’afuna

akawundu
akatono

 oba
obuvune.
Tujja
kugyako
omusaayi
mutono
ddala
era
tekigya
kendeza
musaayi
gwa
 mwanawo,
Mukunonyereza
kwaffe
okw’emabega,
tewali
mwana
yafuna
buvune
 olw’okugyibwako
omusaayi.


Mukunonyereza
nga
kono,
wabawo
okuttya
nti
ebibuuzo
 ebimu
biyinza
okukuswaza
oba
omwanawo.
Tetujja
kukaka
mwana
kuddamu
bibuuzo

oba
 kukola
kukeberebwa
okuyinza
okuswaza
omwanawo
oba
gwe.
Ebinabuzibwa
omwanawo
 ngabikwata
ku
bulamu
bwe
bijja
kuterekebwa
bulungi
ddala
era
tebijja
kumanyisibwa
 muntu
mulala
yenna..
Ebinawandiikibwa
ebikwata
ku
kunonyereza
kuno
tebijja
 kwatukiriza
mwanawo.
 
 E.
Okuganyulwa.
 1. Okusinzira
kukunonyereza
okulala,
tusubira
emisomo
gya
kompyuta
egiwagala
 obwongo

giyinza
okuyamba
abaana
b’emyaka
egisoma
abalina
akawuka
ka
siliimu
 era
nga
batawana
mukufaayo,
okujukira,
olulimi
n’okutegera
oluvanyuma
 lw’okulwala.
N’olwekyo
omwanawo
afuna
omukisa
okuganyulwa
mu
misomo
gino.
 Singa
omwana
wo
abeera
mu
kibinja
ekitafuna
misomo
naye
nazulibwa
ng’alina
 obuzibu
obw’amanyi
mu
okufaayo,
okuyiga,
olulimi
oba
okujukira,
tujja
kumuyita
 aweebwe
emisomo
gino
singa
kizulibwa
nti
giyamba.
 2. Nga
tusinzira
ku
kukeberebwa
kwaffe,
singa
tukakasa
nti
omwana
wo
yetaga
 obuyambi
obw’ekikugu
bwetutasobola
kumuwa,
tujja
kumuwereza
awasanidde.

 
 F.
Engeri
endala
singa
tewetaba
mu
kunonyereza
 Emisomo
egiwagala
obwongo
gigezesebwa
munsi
endala
ku
bika
by’obuvune
ku
bwongo
 ebirala
naye
tumanyi
nti
wano
mu
Africa
teginagezesebwako
mu
baana
abalwala
 endwadde
ezikosa
obwongo,
gamba
nga
siliimu,
omusujja
gw’okubwongo,
oba
mulalama.
 Tetumanyi
ngeri
ndala
zonna
zisobola
kukozesebwa
wano
mu
Uganda,
okukebera
engeri
 omwana
gyayigamu
(okujukira,
okufaayo,
olulimi)
ng’ogyeko
ezo
zetugenda
okukozesa
ku
 mwanawo.
 
 100 G. Ensimbi ezinasasanyizibwa/ Okuliyirira Tojja
kusasanya
nsimbi
zo
zonna
ngawetabye
mukunoonyereza
kuno.

Ojja
kudizibwa
 enkumi
ttaano
(5000/=)
kulw’entambula.

 
 H. Obulumi obwekuusa kukunonyereza Olwokuba
nti
teri
kufumitibwa
kwona
kunakolebwa,
okunonyereza
kuno
tekulimu
kabenje
 konna.
Singa
omwana
wo
afuna
obuzibu
ku
mubiri
gwe
oba
obulwadde
obulowozebwa
nti
 bwajja
olw’okwetaba
mu
kunonyereza

kuno,
tegeza
Dr.
Opika
Opoka
Robert
ku
ssimu

 07729960164
Mr.
Paul
Bangirana
ku
ssimu
0772673
831.
 I. Okukiriza kwa kyeyagalire Okukiriza
okwetaba
mu
kunoonyereza
kuno
kwa
kyeyagalire.
Bwosalawo
obutetaba
 mukunoonyereza
kuno
tekijja
kukosa
nkolagana
yo,
kakati
oba
mu
maaso,
ne’ddwaliro
lye
 Kayunga
oba
Child
Health
Advocacy
International.
Era
bwosalawo
okwetaba
 mukunoonyereza
kuno,
osigala
oli
waddembe
okuva
mu
kunonyereza
essaawa
yonna
era
 nga
tekikoseza
nkolaganayo
n’ebitongole
ebyo.
Okugaana
okwetaba
mu
kunonyereza
kuno,
 tekukyusa
ndabirila
esanidde
ey’obulamu
bwo
oba
obw’omwana
wo,
oba
okubakugira
 okufuna
ebyo
ebibagwanidde.
 
 J. Ebyama Ebiwandiiko
ebikwata
kunoonyereza
kuno
byonna
byakuterekebwa
mu
kyama.
 Ebinawandikibwa
mu
butabo
oba
mumpapula
zonna
ez’okuyigiriza,
tebijja
kukwatukiriza
 newankubade
omwana
wo,
era
tekijja
kusoboka
kubategeera,
wabula
ebifa
ku
mwana
wo
 biyinza
okulabibwa
abakulu
mu
tendekero
ly’abasawo
mu
yunivasite
ye’Makerere,
Mulago
 Hospital
oba
University
ye
Michigan
abatukiriza
okukola
okunonyereza
kuno.
Tewali
 kikwata
kumwana
wo
kijja
kuwandikibwa
mu
fayiro
ya
ddwaliro.
Ebinawerezebwa
ku
 mpewo
za
komputa
bijja
kusibwako
enyukuta
eze’kyama
ezitakiriza
muntu
yenna
 kubisoma
okujako
oyo
abiwereza
ne
gwebabiwereza.

Okwetaba
kwo
mu
kunonyereza
 kuno
kuyinza
okumanyibwa

baliranwa
bo
olw’okukyala
kwaffe
ewaka
wo
oba
 olw’okugezesa
omwana
wo.
Tujja
kukendeza
obuzibu
buno
nga
tetwelambika
nnyo
gyebali
 era
emotooka
tujja
kugireka
wala
n’eka
wo.
 K. Endagiriro za’bokwebuzaako Bwoba
olina
ekibuuzo
kyona
ekikwata
kukunonyereza
kuno,
tukirira
omunonyerezi
 gwekikwatako,
Mr.
Paul
Bangirana,
P.
O.
Box
7062,
Kampala;
Telephone
0772673831;
 Email
pbangirana@yahoo.com
oba
Dr.
Robert
Opika
Opoka
ssimu
0772996164.
 
 L.
Eddembe
ly’abaneetaba
mu
 Bwoba
olina
ekibuuzo
oba
okwemulugunya
okukwata
kukunoonyereza
kuno
naye
nga
 wandyagadde
webuuze
awalala
awatali
kubanonyerezi
bano,
kubira
Makerere
University
 Faculty
of
Medicine
Institutional
Review
Board
Essimu
0414
530020.


 Bwoba
olina
ekibuuzo
oba
okwemulugunya
okukwata
ku
ddembe
lyo
ng’eyetabye
 mukunonyereza,
oba
ng’olina
obutali
bumativu
kunsonga
yonna
ekwata
kukunonyereza
 kuno,
tegeza
–
Dr
Charles
Ibingira,
ssentebbe
wa
Makerere
University
Faculty
of
Medicine
 Institutional
Review
Board,
ssimu:
0414‐530020.
Ojja
kuwebwa
kkopi
ya
foomu
eno
 ojitereke.
 101 
 M. Okukkiriza Ojja kufuna kkopi ya ffoomu eno ey’olukusa bwoba ogyetaaze. 
 Ebintu byonna ebiri mu ffoomu y’olukusa eno binyinyonnyoddwa bulungi ne mbitegeera era nzikiriza omwana wange okwetaba mu kunoonyereza kuno nga tewali ankase oba okunsalirawo. Ntegera nti ndi waaddembe okusalirawo omwana wange okwetaba mu kunonyereza kuno. Okussa omukono ku ndagaano eno tekingigyaako ddembe lyange lya bwebange ery’okwewozaako nga wabaddewo ekisobye mu mateeka. Okussa omukono ku ndagaano era tekuggyaawo buvunaanyizibwa bw’abaddukanya okunoonyereza kuno singa wabawo obuzibu bwonna obw’amaanyi obuyinza okugwaawo olw’okwetaba mu kunoonyereza kuno. Okussaako omukono kitegeeza nti ntegeezeddwa ebikwata ku kunoonyereza era nenesalirawo nzekka okukwetabamu nga tewali kukakibwa. Njakuweebwaako kkopi ku ffoomu eno ey’olukusa njitereke. 
 
 Erinnya ly’omuzadde / Alabirira omwana.1 Erinnya ly’omuzadde / Alabirira omwana. 2 
 
 Omukono
oba
ekinkumu
ky’omuzadde
/
Alabirira
omwana.
 1
 Ennaku
z’omwezi
 
 
 Omukono
oba
ekinkumu
ky’omuzadde
/
Alabirira
omwana.
 2
 
Ennaku
z’omwezi
 
 
 Akoze ku ffoomu y’olukusa lw’okunoonyereza eno. 
 Omukono
gw’akoze
ku
ffoomu

eno.
 
 
 
 
 

 Ennaku
 z’omwezi
 
 • Omwana
anoonyerezebwaako
oba
mukadde
we
bw’abeera
tamanyi

kusoma

na
 kuwandiika
walina
okubaawo
omujulizi
nga
bannyonnyolwa
ebikwata
ku
kuwa
 olukusa.
Oluvannyuma
lw’okunnyonnyolwa
ne
bakkiriza
omujulizi
ono
assaako
 omukono
okukasa
nti
abantu
abo
ebintu
bye
bataddeko
ekinkumu

 babinyonnyoddwa
bulungi
mu
bigambo
ne
babitegeera
bulungi
nti
era
babikkiriza
 ku
lwabwe
nga
tewali
abawaliriza
oba
okubasalirawo.
 ____________________________________
 Erinnya
ly’omujulizi
(mu
nnukuta
ennene)
 
 ________________________________

 ______________________________
 Omukono
gw’omujulizi.
 
 Ennaku
z’omwezi
 
 
 
 
 __________________________________
 _____________________________
 Omukono
gw’anonyereza
 
 Ennaku
z’omwezi
 102 Appendix C. Medical History and Physical Examination Form MU-MSU collaborative study Neuropsychological benefits of cognitive training for Ugandan HIV children - Kayunga Medical History and Physical examination Form Patient Name:________________________ Study ID#_____________________ Complete this medical history and physical examination form at the enrolment of study participants. PARTICULARS Study No. Names: Age: Date today: Date of birth: Child’s care giver: Relationship with child: Village: Sub county: District: Contact phone #s: Sex: Male [ ] Female[ ] PRESENT HEALTH HISTORY Is the patient currently ill with any of the following symptoms: Fever, vomiting, severe diarrhea, active convulsions, difficulty breathing, severe cough? Y N If Y, send to Medical staff of Kayunga Hospital for evaluation and have child return when symptom-free If N, continue with enrolment 
 
 HIV HISTORY Is the child currently on HAART? Y N If Yes, combination If Y, stating date Is the child on O.I prophylaxis? If Y, list medications Y 103 N PAST MEDICAL HISTORY Has the child: Any other medical condition apart from HIV If yes list condition Y N Been hospitalized for malnutrition? Been hospitalized with coma? Been hospitalized meningitis? Been hospitalized with head injury? If Yes for any of the above conditions, exclude from the study. Y Y Y Y N N N N Been hospitalised for reasons other than those listed above? If yes, reason for the hospitalization Y N PHYSICAL EXAMINATION Temp __ __. __ o C Wgt. __ __ . __ kg MUAC _______.___cm Is the child acutely ill by screening exam? If yes, describe: Hgt. __ __ __ cm. Y N If
acutely
ill,
stop
enrolment
and
refer
to
staff
of
Kayunga
Hospital
for
evaluation
and
 treatment
and
ask
to
return
for
testing
after
recovery.
 GENERAL ASSESSMENT OF THE CHILD General exam normal? Y N If no, describe Respiratory system normal? Y N If no, describe; Cardiovascular system normal? Y N If no, describe; GIT system normal? Y N If no, describe; CNS examination normal? Y N If no, describe; Other findings Y N If yes, describe: Done by______________________________Sign and Date_____________________ 104 Appendix D. Child Behavior Checklist Translated in Luganda STUDY ID ___________________NAME__________________________________ Child
Behavior
Checklist
for
Ages
6­
18
 Childs First Middle Omulimu gw’omuzadde ogwabulijjo,wadde kati Last nga takola okugeza makanika, musomesa, Full name musubuzi etc Omulimu gwa taata Child’s Child Child’s Ethnic _________________________________ gender ’s age group or race Omulimu gwa maama Boy ________________________________ Girl Today’s Child’s birthdate date Mo date Mo date Yr Yr Grade in Juzza foomu eno okulaga School ky’olowooza ku neyisa ______ y’omwana wadde nga abalala tebakiriziganya nawe. Ddamu Tasoma ebibuuzo byonna I. Menya emizanyo omwana gyasinga okwagala okwetabamu. Okugeza okuwuga, okuvuga eggaali etc Tewali □ Erinya ly’akoze ku foomu Your gender Male Female Oluganda lwo n’omwana Biological parent □ Step Parent □ Grand parent □ Adoptive parent □ Foster Parent □ Other (specify) __________________________________ Omwana ng’omugerageranyiza ku bane ab’emyaka gyegimu, biseera ki byawa buli muzanyo? Bitono Byak igero Bing i Siman yi Omwana ng’omugerageranyiza ku bane ab’emyaka gyegimu, akola atya mu buli muzanyo? Bubi Agezak Bulungi S o i m a n y i a. b. c. II.
Menya
ebintu
 omwanawo
 byanyumirwa
 okwenyigiramu

 Okugeza
okusoma
 obutabo,
eby’emikono,
 okuyimba
etc
 (Ng’ogyeko
Radio

ne
TV

 Omwana
ng’omugerageranyiza
 Omwana
 ku
bane
ab’emyaka
gyegimu,
 ng’omugerageranyiza
ku
 biseera
ki
byawa
buli
kimu?
 bane
ab’emyaka
gyegimu,
 akola
atya
mu
buli
kimu?
 Bitono
 Byak Bing Siman Bubi
 Agezak Bulungi
 S igero
 i
 yi
 o
 i m a 105 )
 Tewali
□
 a.
 
 b.
 
 c.
 
 
 III.
Menya
ebibiina,
tiimu
oba
 obubinja
omwanawo
mw’ali
 
Tewali
□
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 n y i
 
 
 
 Omwana
ng’omugerageranyiza
ku
bane
ab’emyaka
 gyegimu,,obujumbize
bwe
buli
butya
mu
buli
kimu?
 Tajumbira
 Agezako
 Ajumbira
 Siman nnyo
 yi
 
 
 
 
 
 
 
 
 
 
 
 
 a.
 b.
 c.
 
 IV.
Menya

emirimu
omwana
gy’akola
awaka.
 Okugeza
okukima
amazzi,
okweera
olugya,
 okulera
omwana
etc
(
Tekako
egisasula
 n’egitasasula
wamu
negy’akola
awaka)
 
Tewali
□
 Omwana
ng’omugerageranyiza
ku
 bane
ab’emyaka

gyegimu,,akola
atya
 emirimu
gino?
 Bubi
 Agezako
 Bulungi
 Si m an yi
 
 
 
 
 
 
 
 
 
 
 
 
 a.
 b.
 c.
 
 V.



1.
Omwana
wo
alina
mikwano
gye
ennyo
ng’emeka?
(Ng’ogyeko
baganda
be
ne
 bannyina)
 






























□Talina












□1










□2
oba
3








□4
oba
okusingawo

 







2.

Emirundi
ng’emeka

mu
wiiki
omwana
gyaberako
nemikwano
gye
ng’ogyeko
 ebiseera
by’okusomero?
(Ng’ogyeko
baganda
be
ne
bannyina)
 






























□Tewali













□
1
oba
2








□3

n’okusingawo

 
 VI.
Omwana
ng’omugerageranyiza
ku
 Bubi
 Kigero
 Bulungi
 
 bane
ab’emyaka

gyegimu,,:
 a.

Akolagana
atya
ne
bagandabe?
 
 
 
 




 Talin a
 baga nda
 be
 b.


Akolagana
atya
n’abaana
abalala
 
 
 
 
 c.
Yeyisa
atya
ne
bazaddebe?
 
 
 
 
 d.

Okuzanya
n’okukola
yekka
kuli
 
 
 
 
 106 kutya?
 
 VII.



1.

Enkola
ye
mu
 Tasoma

olw’ensonga
 masomo
 
 Saaza
ku
masomo
omwan
 Munafu
 Afuba
 Agezak Mulung 
 g’atwala
 nnyo
 o
 i
 a.
Okusoma,
Oluzungu
oba
 
 
 
 
 olulimi
 b.
Ebyafaayo
oba
social
 
 
 
 
 studies
 c.
Okubala
 
 
 
 
 d.
Science
 
 
 
 
 e.
 
 
 
 
 f.

 
 
 
 
 g.
 
 
 
 
 2. Omwana
wo
afuna
okuyigirizibwa
okwenjawulo
oba
okusomesebwa

okutali
kwa
 bulijjo
oba
asoma
me
ssomero
lyanjawulo?
 

















□Nedda





□Yee
(Kiki
enkyenjawulo)
 3. Omwana
wo
yali
azeko
mukibiina?




□Nedda




□Yee‐
Kibiina
ki
era
lwaki?
 





 4.

Omwanawo
yali
afunye
obuzibu
mu

kuyiga
kwe
oba
ku
ssomero?
□
Needa





□Yee‐
 Nnyonyola
 
 Obuzibu
buno
bwatandiika
ddi?
 Obuzibu
buno

bwagwawo?

□
Nedda




□Yee‐
Ddi?
 Omwana
alina
obulwadde
bwonna
oba
obulemu
(ku
mubiri
oba
ku
bwongo)?


Nedda



 Yee‐
Nnyonyola
 
 Kiki
ekisinga
okukweralikiriza
ku
mwanawo
?
 
 
 Wammanga
waliwo
ebintu
ebinnyonyola
abaana
n’abavubuka.
Ku
buli
kintu
ekiraga
 omwanawo
bwali
kati
oba
bwabadde
emyezi
mukaaga
egiyise,
saza
ku
nnamba
2
 singa
kituufu
ku
mwanawo.
Saaza
ku
nnamba
1
singa
ekintu
oluusi
kutuukirira
ku
 mwanawo.
Ekitali
kitufu
ku
mwanawo
saza
ku
zero.
 0=

Si

kitufu



























1=
Olusi

kitukirira

oba
kitufumu
















2=
Kitufu
nnyo

 oba
emirundi
mingi
kitukirira
 0



 1.

Eneyisa
ye
yakito
okusinzira
ku
 0



 32.
Awulira
alina
kukola
bulungi
nnyo
 1




 myaka
gye
 1




 oba
bitufu
byoka
 2
 2
 0



 2.


Anywa
omwenge
ng’abazadde
 0



 33.

Awulira
tewali
amwagala
 1




 be
tebamukiriza.
Nyonyola
 1




 2
 
 2
 0



 3.

Awakana
nnyo
 0



 34.
Awulira
nga
abalala
baagala
 1




 1




 kumulumya
 107 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 4.

Alemwa
okumaliriza
ebibtu
 0



 by’atandikako
 1




 2
 5.


Ebibtu
bitono
ebimunyumira
 0



 1




 2
 6.


Yeyamba
ebweru
wa
kabuyonjo
 0



 1




 2
 7.

Yemanyi
 0



 1




 2
 8.
Tasobola
kusayo
mwoyo
kumala
 0



 kiseera
kiwanvu
 1




 2
 9.

Tasobola
kujja
birowoozo

bye
 0



 kubintu
ebimu,

 1




 (Nnyonyola)
 2
 10.
Tasobola
kutula
ntende,
 0



 amaguka,

 1




 2
 11.

Yesiba
ku
bantu
abakulu,
 0



 teyetongola
 1




 2
 12.
Ekiwubaalo

kimuluma

 0



 1




 2
 13.

Atabusetabuse

oba
ali
mu
nsi
 0



 ye
 1




 2
 14.
Akaaba
nnyo
 0



 1




 2
 15.
Mukambwe
eri
ebisolo
 0



 1




 2
 16.

Mukambwe,,
atawanya,
talina
 0



 kisa
oba
mukodo
 1




 2
 17.

Aloota
nga
teyebase

oba
 0



 abulira
mu
birowoozo
bye
 1




 2
 18.
Yekola
ko
obulabe
oba
 0



 okugezako
okwetta

 1




 108 35.
Awulira
nga
talina
mugaso/
 muwendo
 36.

Anyiga

mangu,
alabika
okugwa
me
 bubenje
 37.
Yenyigira
mu
ntalo
nnyingi
 38.
Asekererwa
nnyo
 39.
Abeera
nyo
na’bantu
abatava
mu
 buzibu
 40.
Awulira
amaloboozi
agataliwo
 (Nnyonyola)
 41.
Apakuka
oba
akola
ebintu
nga
tasose
 kulowooza
 42.
Anyumirwa
okubeera
yekka
 okusinga
okubera
n’abantu
 43.
Alimba,
abinkanya
 44.
Aluma
enjjala
 45.

Amameeme
gamukubba
 46.

Atiitira
era
akankana
olw’okutya
 (Nnyonyola)
 
 47.

Afuna
agalooto
agatiisa
 48.
Tayagalibwa
baana
balala
 49.

Olubuto
lumwesibye,
tafuluma
 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 
 2
 19.
Ayagala
okumufako
 20.
Ayonona

ebintu
bye
 21.
Ayonona

ebintu
by’awaka
oba
 eby’abalala
 22.

Munyomi
ewaka
 23.
Munyomi
ku
ssomero
 24.

Talya
bulungi
 25.

Takolagana
bulungi
n’abaana
 balala
 26.

Talaga
kulumirizibwa
oba
 nsonyi
oluvanyuma
lw’okweyisa
 obubi
 27.

Akwatiibwa
obuggya
 28.

Amennya
amateeka
awaka,
ku
 ssomero
nabuli
wamu
 29.
Atya
ensolo,
embeera
oba
ebifo
 ebimu
ng’ogyeko
ku
ssomero

 (Nnyonyola)
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 
 50.

Atya,
yeralikirira
nnyo
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 a.
Okulumizibwa
(nga
si
mutwe
oba
 lubuto)
 51.
Awulira
kamunguluze
 52.
Awulira
okulumirizibwa
ensobi
ze
 53.
Alya
nnyo
 54.
Akowa
nga
talina
kyakoze
 55.
Munene
/
azitowa
nnyo
 56.

Alina
ebirwadde
ebitamanyiddwa
 kibileeta:
 b.
Okulumwa
omutwe
 c.
Okusindukirirwa
emeeme
 d.
Obuzibu
ku
maaso
(Obutasobola
 kuterezebwa
galubindi)
 



(Nyonyola)
 
 30.
Atya
okugenda
ku
ssomero
 0



 e.
Okubutuka
oba
obuzibu
obulala
ku
 1




 lususu
 2
 31.

Yelaliikirira

nti
ajja
kulowooza
 0



 f.
Okulumwa
olubuto
 oba
okukola
ekikyamu
 1




 2
 0



 g.
Okusesema
 1




 2
 109 
 0



 h.
Ekirala
(Nnyonyola)
 1




 
 2
 
 0=

Si

kitufu



























1=
Olusi

kitukirira

oba
kitufumu
















2=
Kitufu
nnyo

 oba
emirundi
mingi
kitukirira
 0



 57.

Alumba
/
akuba
abantu
 0



 86.


Mulalu
,
anyiiga
mangu

 1




 1




 2
 2
 0



 58.
Yeekwata
mu
nnyindo,
 0



 87.

Embeera
ze
zikyukakyuka

 1




 n’ebitundu
by’omubiri
ebirala
 1




 2
 (Nnyonyola)
 2
 
 0



 59.

Azanyisa
ebitundu
bye
 0



 88.

Akola
nnyo
entondo
 1




 eby’ekyama

mu
bantu
 1




 2
 2
 0



 60.

Azanyisa
nyo
ebitundu
bye
 0



 89.


Yekengera
 1




 eby’ekyama
 1




 2
 2
 0



 61.
Akola
bubi
ku
ssomero
 0



 90.

Alayira,
akozesa
ebigambo
ebitasana
 1




 1




 mu
bantu
 2
 2
 0



 62.

Musamaavu

 0



 91.
Ayogera
ku
kwetta
 1




 1




 2
 2
 0



 63.

Ayagala
kubeera
n’abana
 0



 92.

Ayogera
oba
atambula
nga
yeebase
 1




 abamusinga
obukulu
 1




 (Nnyonyola
 2
 2
 
 0



 64.
Ayagala
kubeera
n’abana
 0



 93.
Ayogera
nnyo
 1




 abamusinga
obuto
 1




 2
 2
 0



 65.
Agaana
okwogera
 0



 94.
Asaaga
nnyo


 1




 1




 2
 2
 0



 66.
Waliwo
ebikolwa
by’adingana
 0



 95.


Alaga
mangu
obusungu
 1




 (Nnyonyola)
 1




 2
 
 2
 0



 67.
Adduka
awaka
 0



 96.

Alowooza
nyo
ku
by’okwegatta

 1




 1




 2
 2
 0



 68.
Awoggana
nnyo
 0



 97.
Atiisatiisa
abantu
 1




 1




 2
 2
 0



 69.
Teyeyabiza
Bantu,
yekumira
 0



 98.

Anuuna
engalo
ensajja
 1




 ebyama
bye
 1




 110 2
 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 70.
Alaba
ebintu
ebitaliwo
 (nnyonyola)
 
 71.
Yetya,
aswala
mangu

 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 77.

Yeebaka
nnyo

ekiro
oba
 emisana
okusinga
abaana
abalala
 (nnyonyola)
 78.
Tassaayo
mwoyo

oba
kyangu
 okumugya
ku
ky’aliko
 72.
Akoleza

emiriro
 73.
Ebizibu
by’okwegatta
 (Nnyonyola)
 
 74.
Yelaga
 75.

Alina
ensonyi


 76.

Yeebaka
kitono

ku
baana
 abasinga
 79.
Obuzibu
mu
kwogera
 (nnyonyola)
 
 80.

Atunula

enkaliriza
awatali
 ky’alaba
 81.

Abba

awaka
 82.
Abba
wabweru
w’eka
 83.
Atereka
ebintu
bingi
by’atetaga
 (Nnyonyola)
 
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 0



 1




 2
 99.
Anywa

sigala
 100.

Obuzibu
okwebaka
(nnyonyola)
 101.

Atoloka
ku
ssomero,
ayosa
 102.

Walulembe,
asooba,

 103.

Munyikavu
 104.


Aleekana
ekiteetagisa
 
 105.

Akozesa
amadaggala
nga
si
 mulwadde
(ng’ogyeko
taaba
 n’omwenge)
Nnyonyola
 
 0



 106.
Ayonoona

ebintu
by’abalala
 1




 2
 0



 107.
Yefukira
emisana
 1




 2
 0



 108.
Afuka
ku
buliri
 1




 2
 0



 109.

Yemulugunnya
nnyo
 1




 2
 0



 110.

Yeegomba

okuba
ow’ekikula
 1




 ekilala
(musajja
oba
mukazi)
 2
 0



 111.

Teyewa
bantu
 1




 2
 0



 112.
Yeelalikirila
 1




 2
 111 0



 1




 2
 0



 1




 2
 84.

Enn’eyisa
ezitali
za
bulijjo
 (Nnonyola)
 
 85.

Ebirowooza
ebitali
bya
bulijjo
 (Nnyonyola)
 
 
 
 113.

Wandiika
ekizibu
kyona
 omwanawo
ky’alina
ekitamenyebwa

 0



 
 1




 2
 0



 
 1




 2
 0



 
 1




 2
 112 Appendix E. Education, Socioeconomic Status and Migration Questionnaire KAYUNGA HOSPITAL/MU-MSU HIV PROJECT EDUCATION, SOCIOECONOMIC STATUS AND MIGRATION QUESTIONNAIRE Circle the numbers or letters of all correct answers. EDUCATION 1. Is the child currently in school? 1. Y 2. N 2. If child is in school, what level? 1234567 3. If N, was child ever in school? 1. Y 2. N 4. If Y, what was the highest level of education the child reached? 1 2 3 4 5 6 7 5. Is child’s mother able to read and write? 1 Y 2N 6. What was the highest level of education for the child’s mother? 1234567 8 (Secondary) 9 (Tertiary) 7. Is child’s father able to read and write? 1 Y 2N 8. What was the highest level of education for the child’s father? 1234567 8 (Secondary) 9 (Tertiary) SE STATUS 1. How many brothers and sisters does this child have? 0 1 2 3 4 5 6 7 8 9 10 11 12 >12 2. How many people live under the same roof as this child? 0 1 2 3 4 5 6 7 8 9 10 11 12 >12 3. What type of roof do you have? 1. Other 2. Thatch 3. Iron sheets 4. Tile 4. What kind of water supply do you have? 1. Carried in jerry can to home 2. Water source near home 3. Running water 5. What kind of cooking fuel do you use? 1. Firewood 2. Charcoal 3. Paraffin 4. Gas/Electricity 6. Does the family eat meat at least once a week? 1 Y 2N 7. Does the family have food all year round? 1Y 2N 8. Which of the following items are owned by you or found in your home? Circle the number if the family has the item; put an X through if not. Add circled values for total. Item Score Item Score Electricity 3 Bicycle 1 Shoes for subject 1 Motorcycle 2 Radio 1 Motor vehicle 3 Television 2 Cows (>2) 2 TOTAL MIGRATION Village/Town District In which village/town was the subject born? In which village/town has the child lived for most of his/her life? In which village/town did the subject usually live for the past 12 months 113 Appendix
F.
Child
Assent
Form
 
 Study number:__________ Foomu y’okukiriza kw’omwana Today’s date // Hospital Child’s first name Father’s surname Child’s surname ........................................................... ................................ .............................................. Anonyereza ajja kusomera omwana foomu eno ku lunaku omwana lw’anasooka okulabibwa mu kunonyereza ku ddwaliro lya ChildHealth Advocacy International e Kayunga. Tuli mukukola okunonyereza mu baana abagya ku ddwaliro lino. Abamu ku baana bano balina obuzibu mu kujukira, okufaayo, n’okuyiga. Twagala wetabe mu kunonyereza kwaffe n’abaana abalala abagya ku ddwaliro lino, tweyongere okuzuula ebikwata ku busobozi bwo okujukira, okusayo omwoyo, n’okuyiga. Twagala n’okugezesa emizannyo egiwagala obwongo tulabe oba giyamba okujukira, okufaayo, n’okuyiga mu baana. Okuzuula ebintu bino, abaana abamu tujja kubazanyisa emizanyo, abalala tetujja. Oluvanyuma tujja kugerageranya obusobozi bwabwe tulabe oba waliwo enjawulo wakati w’abaana abazanye emizanyo n’abatazannye. Tokakibwa kubeera mu kunoonyereza kuno singa toyagala. Wadde nga toli mu kunonyereza kuno, oja kusobola okufuna obuyambi nga bulijjo. Tetugya kunyigira oba okubonereza singa toyagala kuzannya mizannyo gino. Bwonoba okiriza okwetaba mu kunonyereza kuno, omusawo ajja kukebera okulaba embeera mw’oli. Oluvanyuma ojja kuzannya emizannyo egigezesa embeera y’okujukira kwo, okufaayo n’okuyiga mu ssomero. Oluvanyuma lw’emizannyo gino, ojja kutekebwa mu kibinja ekifuna emizannyo egiwagala obwongo oba ekitafuna. Singa oggwa mu kibinja ekizannya emizannyo, ojja kugizannya buli wiiki, naye oli waddembe okutegeza omusawo singa owulira nga toyagala kugenda maaso na mizannyo gino. Singa oggwa mu kibinja ekirala, tojja kuzannya mizannyo gino egyabuli wiiki. Ekituzaamu emizanyo gino kwekulaba embeera y’obusobozi bw’okujukira kwo, okufaayo, n’okuyiga bweri oluvanyuma lw’emyezi ebiri. Byonna byetunakola tojja kulumizibwa ate n’ebibuuzo tebiringa bya ku ssomero nti oyita oba ogwa. Tetugya kubulira muntu yenna bwewakoze. Tumaze okwogera n’abazadde bo ku kunoonyereza kuno. Nawe osobola okwogera nabo olabe kyebalowooza. Ojja kuganyulwa mu kunonyereza kuno kubanga emizannyo gy’ogenda okuzannya giyinza okuyamba okujukira, okufaayo n’okuyiga, obulungi. Ojja kuyingira mu kunonyereza kuno singa osaza ku ka bokisi akaliko ‘yee’ wamanga. 114 Study number_________ Okiriza okwetaba mu kunonyereza kwaffe? Yee (YES ) Needa (NO) Simanyi (Not Sure) Ngumikirizako (Need more time) Singa oyagala okubeera mu kunoonyereza kwaffe, wandiika erinya lyo wansi wano. __________________________________________ Erinya ly’omwana (Nnukuta enene) ___________________ Ennaku z’omwezi __________________________________________ Erinya ly’omwana (omukono oba akabonero k’okukiriza) _________________________________________ Erinya ly’akoze ku foomu _______________________________________ Omukono gw’akoze ku foomu ____________________ Ennaku z’omwezi To be signed by witness: Omwana ebiwandiikibwa waggulu bimusomeddwa era n’akiriza okwetaba mukunonyereza kuno __________________________________________ Erinya ly’omujulizi __________________________________________ Omukono gw’omujulizi _____________________ Ennaku z’omwezi _________________________________________ Erinya ly’anoonyereza _________________________________________ Omukono gw’anoonyereza 115 _____________________ Ennaku z’omwezi REFERENCES 116 References Achenbach, T. 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