HIV-positive Children Research Articles

Experiences of Caregivers in Healthcare for and Social Support of HIV Positive Children Attending Schools in Bangkok

summary Purpose: The study was conducted to explore caregivers' experiences and perceptions of barriers to their children receiving appropriate healthcare and support at schools in Thailand. Method: A qualitative narrative study was conducted to achieve the aim stated above. Twenty caregivers of children living with HIV/AIDS attending schools in Bangkok were interviewed in depth. The interviews were audiotaped, transcribed and analyzed using narrative analysis. Results: The analysis indicated that caregivers fear discrimination, suffer from stigma and most do not reveal their child's HIV status to schools. Obstacles to children living with HIV/AIDS getting appropriate care and support in schools are persistent. Caregivers need to collaborate with the public health sector to provide HIV education and support for themselves and for teachers; community nurses would be well placed to provide this. Conclusion: Our findings can inform the design of systems for educational and social support alongside adequate healthcare for children living with HIV/AIDS attending school. The Thai government needs to establish collaboration between the educational and health sectors to reduce the stigma of HIV, promote acceptance and provide support.

HIV-related discrimination among grade six students in nine Southern African countries.

BackgroundHIV-related stigmatisation and discrimination by young children towards their peers have important consequences at the individual level and for our response to the epidemic, yet research on this area is limited.MethodsWe used nationally representative data to examine discrimination of HIV-positive children by grade six students (n = 39,664) across nine countries in Southern Africa: Botswana, Lesotho, Malawi, Mozambique, Namibia, South Africa, Swaziland, Zambia and Zimbabwe. Descriptive statistics are used to compare discrimination by country, gender, geographic location and socioeconomic status. Multivariate logistic regression is employed to assess potential determinants of discrimination.ResultsThe levels and determinants of discrimination varied significantly between the nine countries. While one in ten students in Botswana, Malawi, South Africa and Swaziland would “avoid or shun” an HIV positive friend, the proportions in Lesotho, Mozambique, Zambia and Zimbabwe were twice as high (approximately 20%). A large proportion of students believed that HIV positive children should not be allowed to continue to attend school, particularly in Zambia (33%), Lesotho (37%) and Zimbabwe (42%). The corresponding figures for Malawi and Swaziland were significantly lower at 13% and 12% respectively. Small differences were found by gender. Children from rural areas and poorer schools were much more likely to discriminate than those from urban areas and wealthier schools. Importantly, we identified factors consistently associated with discrimination across the region: students with greater exposure to HIV information, better general HIV knowledge and fewer misconceptions about transmission of HIV via casual contact were less likely to report discrimination.ConclusionsOur study points toward the need for early interventions (grade six or before) to reduce stigma and discrimination among children, especially in schools situated in rural areas and poorer communities. In particular, interventions should focus on correcting misconceptions that HIV can be transmitted via casual contact.

Prevalence and Clinico-Demographic Characteristics Associated with Bacterial Diarrhea among HIV Positive and Negative Children Aged Below Five Years at Moi Teaching and Referral Hospital, Kenya

Diarrhea is the second leading cause of morbidity and mortality worldwide. It accounts for over 2 million deaths in children aged below 5 years, majority being from Sub-Saharan Africa. Diarrhea is ranked third as a cause of death and the third leading cause of pediatric admissions in Kenya. The objective of this study was to determine the prevalence and clinico-demographic characteristics associated with diarrhea in relation to patient HIV status. This was a cross- sectional comparative study of 216 HIV seropositive and seronegative children aged below 5 years admitted with diarrhea at Moi Teaching and Referral Hospital in Western Kenya. Clinico-demographic characteristics associated with diarrhea were obtained using questionnaires. Stool samples were collected and analyzed using standard microbiological methods to determine their bacterial etiology. The mean (standard deviation) 24.11(15.61) vs. 11.77(7.88), median and inter quartile range 22(10, 36) vs. 10 (6, 16) was higher among HIV positive than negative cases with no statistically significant differences with regard to gender. The prevalence of diarrhea was 17.1% with 64.4% (139) of our cases being male and 35.6% (77) female. The prevalence of bacterial and non bacterial diarrhea was 8.5% (118) and 7.1% (98) respectively. The main bacterial enteropathogens isolated among HIV positive and negative cases were Escherichia coli 88.9 % (38 vs. 67) , Shigella 5.1 %( 1, 5), Salmonella 4.2% (0, 5) and other enteric species 1.7% (0, 2). EAEC (17.7%) was the main diarrheagenic E coli (DEC) followed by EHEC (5.1%), EPEC (3.4%), EIEC (2.5%) and ETEC (1.7%). Other were S.typhimurium 4.2% (0, 5), S.typhi 3.4 %) (0, 4), S. dyenteriae and S. flexneri 2.5% (0, 3) each respectively. HIV positive individuals recorded more mixed infections (72% vs. 28%) than HIV negative cases. Some of illnesses recorded in HIV positive cases included tuberculosis 4(100%) and meningitis 8(100%) whereas pneumonia 21(71.4 % vs. 28.6), oral thrush 13 (76.9% vs. 23.1%), malaria 19 (57.9% vs. 42.1%) and protein energy malnutrition 13 (61.5% vs. 38.5 %) were recorded in both HIV positive and negative cases respectively. Education level of parent/guardian, socioeconomic status, housing, water, sanitation and seasonal variations were significantly associated with diarrhea. The study depicts a positive correlation between clinico-demographic characteristics and HIV status on prevalence and etiology of diarrhea. We recommend improved hygienic practices, definitive diagnosis of diarrhea etiology and patient HIV status for effective management of childhood diarrhea.

HSV oropharyngeal shedding among HIV-infected children in Tanzania.

Herpes simplex virus (HSV) oral shedding has not been studied among HIV-positive children in Africa. We sought to evaluate longitudinal oral HSV reactivation in HIV-positive and -negative children. Twenty HIV-positive antiretroviral-naive and 10 HIV-negative children aged 3-12 years in Tanzania were followed prospectively for 14 days. Oral swabs were collected daily and submitted for HSV DNA PCR analysis. Clinical data were collected via chart review and daily diaries. HSV DNA was detected in 10 (50%) of HIV-positive and 4 (40%) of HIV-negative children. Children who shed HSV had virus detected in a median of 21.4% of samples; shedding was intermittent. Median CD4 count among HIV-infected children was 667 cells/µL in those with positive HSV DNA and 886 cells/µL in those who were negative (p = 0.6). Of the HIV-positive children reporting prior sores, five (83%) had positive HSV swabs, whereas the one HIV-negative child with prior sores did not have a PCR-positive swab. HSV is detected frequently in children with and without HIV. HIV-infected children reporting oral sores have a high rate of HSV detection. Given the proven strong interactions between HIV and HSV, further study of co-infection with these viruses is warranted in children.

HIV-positive parents, HIV-positive children, and HIV-negative children's perspectives on disclosure of a parent's and child's illness in Kenya.

HIV disclosure from parent to child is complex and challenging to HIV-positive parents and healthcare professionals. The purpose of the study was to understand the lived experiences of HIV-positive parents and their children during the disclosure process in Kenya. Sixteen HIV-positive parents, seven HIV-positive children, and five HIV-negative children completed semistructured, in-depth interviews. Data were analyzed using the Van Kaam method; NVivo 8 software was used to assist data analysis. We present data on the process of disclosure based on how participants recommended full disclosure be approached to HIV-positive and negative children. Participants recommended disclosure as a process starting at five years with full disclosure delivered at 10 years when the child was capable of understanding the illness, or by 14 years when the child was mature enough to receive the news if full disclosure had not been conducted earlier. Important considerations at the time of full disclosure included the parent’s and/or child’s health statuses, number of infected family members’ illnesses to be disclosed to the child, child’s maturity and understanding level, and the person best suited to deliver full disclosure to the child. The results also revealed it was important to address important life events such as taking a national school examination during disclosure planning and delivery. Recommendations are made for inclusion into HIV disclosure guidelines, manuals, and programs in resource-poor nations with high HIV prevalence.

Who, then what? The need for interventions to help young people with perinatally acquired HIV disclose their HIV status to others.

There has been considerable interest in paediatric HIV disclosure. This is the process leading to full disclosure (when the condition is named for the HIV-positive child, usually by a caregiver or healthcare worker). WHO guidelines state that children should be aware of the name of their condition by the age of 12, with younger children told their status incrementally to accommodate their cognitive skills and emotional maturity in preparation for full disclosure [3]. There is evidence, however, of variation in the age of full disclosure with this taking place later in resource-limited contexts than in other parts of the world [4]. Being aware of one’s status (full disclosure) is a prerequisite for onward disclosure and there is evidence of more onward disclosure if children are aware of their status earlier [5]. How one was disclosed to, for example, if there was an opportunity to ask questions about HIV and to feel listened to, may also impact on onward disclosure decision-making.

Genetic diversity of norovirus in hospitalised diarrhoeic children and asymptomatic controls in Dar es Salaam, Tanzania

This study investigated and reports norovirus diarrhoea, genetic diversity and associated clinical symptoms, HIV status and seasonality in a paediatric population of Tanzania.Stool specimens and demographic/clinical information, were prospectively collected from 705 hospitalised children with diarrhoea (cases) and 561 children without diarrhoea (controls) between 2010 and 2011. Norovirus detection was done by real-time RT-PCR. Genotype was determined using Gel-based and real time RT-PCR methods and sequencing targeting the polymerase and the capsid region respectively. Norovirus was detected in 14.3%, 181/1266 children. The prevalence of norovirus was significantly higher in cases (18.3%, 129/705) than in controls, (9.2%, 52/561), P<0.05. Except for one child who had double infection with GI and GII all 129 cases had GII. Among controls, 23.1% had GI and 76.9% had GII. Norovirus GII.4 was significantly more prevalent in cases 87.9% than in controls 56.5%. Other genotypes detected in both cases and controls were GII.21, GII.16 and GII.g. The highest numbers of norovirus were detected in April 2011. The number of norovirus detected was significantly higher during the first than second year of life (109/540, 20.2% vs. 20/165, 12.1%). The prevalence of norovirus in HIV-positive and negative children was (21.2%, 7/33) and (10.3%, 40/390, P=0.05) respectively, regardless of diarrhoea symptoms. No significant difference in gender, parent’s level of education or nutritional status with norovirus infection was observed within cases or controls. This study confirms the significant role of norovirus infection, especially GII.4 in diarrhoeic children who need hospitalisation and adds knowledge on norovirus epidemiology in the African region.

Burn care in South Africa: a micro cosmos of Africa.

Burn injuries in Africa are common with between 300,000 and 17.5 million children under 5 years sustaining burn injuries annually, resulting in a high estimated fatality rate. These burns are largely environmentally conditioned and therefore preventable. The Western Cape Province in South Africa can be regarded as a prototype of paediatric burns seen on the continent, with large numbers, high morbidity and mortality rates and an area inclusive of all factors contributing to this extraordinary burden of injury. Most of the mechanisms to prevent burns are not easily modified due to the restraint of low socio-economic homes, overcrowding, unsafe appliances, multiple and complex daily demands on families and multiple psycho-social stressors. Children <4 years are at highest risk of burns with an average annual rate of 6.0/10,000 child-years. Burn care in South Africa is predominantly emergency driven and variable in terms of organization, clinical management, facilities and staffing. Various treatment strategies were introduced. The management of HIV positive children poses a problem, as well as the conflict of achieving equity of burn care for all children. Without alleviating poverty, developing minimum standards for housing, burn education, safe appliances and legislation, we will not be able to reduce the "curse of poor people" and will continue to treat the consequences.

Poor nutrition status and associated feeding practices among HIV-positive children in a food secure region in Tanzania: a call for tailored nutrition training.

Undernutrition among HIV-positive children can be ameliorated if they are given adequate foods in the right frequency and diversity. Food insecurity is known to undermine such efforts, but even in food rich areas, people have undernutrition. As yet no study has examined feeding practices and their associations with nutrition status among as HIV-positive children in regions with high food production. We therefore examined the magnitude of undernutrition and its association with feeding practices among HIV-positive children in a high food production region in Tanzania.MethodsWe conducted this mixed-method study among 748 children aged 6 months-14 years attending 9 of a total of 32 care and treatment centers in Tanga region, Tanzania. We collected quantitative data using a standard questionnaire and qualitative data through seven focus group discussions (FGDs).ResultsHIV-positive children had high magnitudes of undernutrition. Stunting, underweight, wasting, and thinness were prevalent among 61.9%, 38.7%, 26.0%, and 21.1% of HIV-positive children, respectively. They also had poor feeding practices: 88.1% were fed at a frequency below the recommendations, and 62.3% had a low level of dietary diversity. Lower feeding frequency was associated with stunting (β = 0.11, p = 0.016); underweight (β = 0.12, p = 0.029); and thinness (β = 0.11, p = 0.026). Lower feeding frequency was associated with low wealth index (β = 0.06, p<0.001), food insecurity (β = −0.05, p<0.001), and caregiver's education. In the FGDs, participants discussed the causal relationships among the key associations; undernutrition was mainly due to low feeding frequency and dietary diversity. Such poor feeding practices resulted from poor nutrition knowledge, food insecurity, low income, and poverty.ConclusionFeeding practices and nutrition status were poor among HIV-positive children even in food rich areas. Improving feeding frequency may help to ameliorate undernutrition. To improve it, tailored interventions should target children of poor households, the food insecure, and caregivers who have received only a low level of education.

Urine lipoarabinomannan testing for diagnosis of pulmonary tuberculosis in children: a prospective study.

SummaryBackgroundUrine tests for mycobacterial lipoarabinomannan might be useful for point-of-care diagnosis of tuberculosis in adults with advanced HIV infection, but have not been assessed in children. We assessed the accuracy of urine lipoarabinomannan testing for the diagnosis of pulmonary tuberculosis in HIV-positive and HIV-negative children.MethodsWe prospectively recruited children (aged ≤15 years) who presented with suspected tuberculosis at a primary health-care clinic and paediatric referral hospital in South Africa, between March 1, 2009, and April 30, 2012. We assessed the diagnostic accuracy of urine lipoarabinomannan testing with lateral flow assay and ELISA, with mycobacterial culture of two induced sputum samples as the reference standard. Positive cultures were identified by acid-fast staining and tested to confirm Mycobacterium tuberculosis and establish susceptibility to rifampicin and isoniazid.Findings535 children (median age 42·5 months, IQR 19·1–66·3) had urine and two induced specimens available for testing. 89 (17%) had culture-confirmed tuberculosis and 106 (20%) had HIV. The lateral flow lipoarabinomannan test showed poor accuracy against the reference standard, with sensitivity of 48·3% (95% CI 37·6–59·2), specificity of 60·8% (56·1–65·3), and an area under the receiver operating characteristic curve of 0·53 (0·46–0·60) for children without HIV and 0·64 (0·51–0·76) for children with HIV. ELISA had poor sensitivity in children without HIV (sensitivity 3·0%, 95% CI 0·4–10·5) and children with HIV (0%, 0·0–14·3); overall specificity was 95·7% (93·4–97·4).InterpretationUrine lipoarabinomannan tests have insufficient sensitivity and specificity to diagnose HIV-positive and HIV-negative children with tuberculosis and should not be used in this patient population.FundingUS National Institutes of Health, the National Health Laboratory Services Research Trust, the Medical Research Council of South Africa, and the Wellcome Trust.

Pediatric plasmablastic lymphoma: a clinicopathologic study.

Plasmablastic lymphoma (PBL) is reported rarely in children. To date, 10 cases are documented in the English-language literature. This study, based on 13 biopsies from 11 HIV-positive children (9 males, 2 females), documents the clinicopathologic features of PBL. The CD4 count ranged from 9 to 800 cells/mm(3). All biopsies demonstrated exclusive plasmablastic morphology; CD20 immunonegativity; and VS38c, EMA, CD31, MUM-1, CD45, and CD79a immunopositivity. B-cell monoclonality was confirmed in all biopsies. Of 3 biopsies subjected to FISH investigation, 2 had a t(8,14) translocation. Nine patients with follow-up details were treated exclusively with HAART (highly active antiretroviral therapy) or with combinations of HAART, chemotherapy, and radiotherapy. Seven patients died. PBL histomorphology, disease stage, and treatment modalities employed were not predictive of outcome. The survival of 2 stage 4 patients for 3 and 8 years each, managed on HAART, chemotherapy, and radiotherapy, however, may justify a role for combined therapeutic modalities for PBL.

Clinical manifestations and treatment outcomes in HIV-1-infected children receiving antiretroviral therapy in Karachi, Pakistan.

The impact of antiretroviral (ARV) therapy on immunological and growth parameters in HIV-positive children in Pakistan has not been reported to date. A retrospective chart review of children diagnosed with HIV at the Sindh AIDS Control Proigramme (SACP) and registered at the Aga Khan University, Karachi, between January 2005 and 2013 was conducted, evaluating clinical and laboratory profiles of HIV+ ARV+ children for ARV impact (serial height and weight CD4 and viral counts). Twenty-four children were diagnosed and registered as HIV positive over five years, and 20 were started on ARV. Six were excluded from analysis (ARV duration < 6 months). Nine (64.3%) of 14 fulfilled WHO criteria for treatment failure at a median duration of 25 weeks (IQR 18-32) on ARV and underwent resistance genotyping. All nine had NNRTI resistance, two had high-grade NRTI resistance (≥ 4 thymidine analog mutations). Median age at start of ARV was 71.5 weeks (IQR 37.5-119). Median baseline weight for age (WAZ) and height for age (HAZ) z-scores changed from -1.94 to 1.69 and -1.99 to -1.59, respectively, after six months of therapy. Median CD4 percentage and viral load at baseline changed from 13.8 to 17.8, while viral load changed from 285 × 104 copies to zero at six months. ARV improved absolute CD4 and viral counts. Weight and height did not improve significantly, highlighting the need for aggressive nutritional rehabilitation. Early development of ARV resistance in these children requires formal assessment.

Family quality of life in families affected by HIV: the perspective of HIV-positive mothers

The HIV infection of a family member can impact family quality of life (FQoL). The objectives of this study are to (1) describe patterns of FQoL among mothers living with HIV (MLHIV) and (2) identify key factors associated with FQoL in families affected by HIV. Recruitment took place in HIV-specialized clinics and community organizations. A 100 MLHIV and 67 of their children participated in this study. Mothers were on average 40.8 years old and reported having an average of two dependent children at home (M = 2.1, SD = 1.0). Participating children were 16.2 years old, on average. Half of the children were boys (50.8%). More than half were aware of their mother's positive HIV status (68.2%) and 19.7% were diagnosed with HIV. All HIV-positive children were aware of their status. A latent profile analysis was performed on the five continuous indicators of FQoL, and three main profiles of self-reported FQoL among MLHIV were established: high FQoL (33%), moderate FQoL (58%), and low FQoL (9%). Among the mothers' characteristics, education, physical functioning, social support, and resilience increased FQoL, while anxiety and irritability decreased FQoL. Among the children's characteristics, resilience followed the FQoL profile. A trend was observed toward children's greater awareness of the mother's HIV status in high and low FQoL profiles. Additionally, irritability tended to be higher within the lower FQoL profile. FQoL profiles can be used to identify families needing special care, particularly for family interventions with both parents and children. Other relevant indicators must be studied (e.g., closeness and support between family members, availability and accessibility of care, family structure, father–child relationships, and medical condition of the mother) and longitudinal research conducted to estimate the direction of causality between FQoL profile and individual family member characteristics.

A systematic review of psychological functioning of children exposed to HIV: using evidence to plan for tomorrow's HIV needs.

Prevention of mother to child transmission of HIV can virtually eliminate paediatric HIV infection. Studies are needed to understand child development outcomes for children exposed to HIV in utero but born HIV negative (HIV affected children). This systematic review examined cognitive, developmental and behavioural outcomes for HIV affected children compared to control unexposed and uninfected children. Key word searches of electronic databases generated 1,739 hits and 11 studies with adequate quality design and measures of standardised cognitive, behavioural and developmental indices. Cognitive performance, behaviour and developmental delay were measured with 15 different standardised scales from 650 HIV affected children, 736 control children and 205 HIV positive children. Performance scores for HIV affected children were significantly lower than controls in at least one measure in 7/11 studies. An emerging pattern of delay seems apparent. HIV affected children will grow in number and their development needs to be monitored and provided for.

A systematic review examining whether interventions are effective in reducing cognitive delay in children infected and affected with HIV

Cognitive delay has been recorded in children infected and affected by HIV. This finding is well established, yet few countries report provision of special educational interventions for this group of children. The general rehabilitation literature describes an array of effective interventions for children with learning difficulties. These have rarely been adapted for children affected by HIV, despite their growing numbers. A systematic review was conducted to examine effective interventions for cognitive delay in children (under 18 years) infected with HIV and/or exposed to HIV (HIV-negative child born to an HIV-positive mother). A keyword search of electronic databases with reference follow-up generated 1745 hits. These abstracts were screened for relevance, resulting in 17 papers available for shortlisting. Studies were then included if they were randomised control trials, were longitudinal, pre/post or cohort studies and presented empirical data on an intervention for children infected by HIV or exposed to HIV and had at least one cognitive measure. Carer interventions were included if they had at least one child cognitive measure. Of the 17 papers, 4 met the inclusion criteria based on design and quality. Interventions included cognitive rehearsal, home-based stimulation and parental support. All four interventions showed at least one significant child improvement at follow-up. Despite such improvements, many children still scored within the disability range at follow-up. These results show that the effective interventions are available and should be scaled up to meet the needs of children. Complex interventions are not sufficiently studied. This review suggests an ongoing need to build evidence-based interventions, but calls on evidence-based programmes to be initiated for HIV-positive and HIV-affected children.

Addressing the sexual and reproductive health needs of young adolescents living with HIV in South Africa

Adolescence, especially early adolescence (10–14years) represents an important opportunity to assist children infected with HIV in developing positive behaviours that will safeguard their health and the health of others. In particular, by reaching such children before they become sexually active, programmes that build awareness of sexual and reproductive health issues can play a valuable role in preventing further spread of the disease, reducing the risk of reinfection and drug resistance and avoiding the chance of infection with another STI.Our study examines programmatic approaches to the sexual and reproductive health of very young adolescents (VYAs). It engages VYAs themselves as an important source of information. Further, it seeks the views of service providers concerning the sexual and reproductive health issues of VYAs. Findings from the study suggest that HIV positive children in early adolescence are poorly informed about sexual and reproductive health matters. There is a strong need for programmes that can address a range of concerns specifically related to their illness as well as to broader issues that arise in the context of this developmental stage. However service providers do not feel confident to inform and educate young adolescents and lack the resources to guide and assist them. To address this gap study findings informed development of a resource for healthcare providers working with HIV positive VYAs in clinic and community settings.

“Without the grandparents, life is difficult”: Social hierarchy and therapeutic trajectories for children living with HIV in rural Northern Malawi

Since 2008 children infected with HIV in Malawi have had access to free adult fixed-dose combination antiretroviral treatment (ART). After four years, more than 33,000 children now have access to these life-saving medicines and the chance to transition into adolescence. However, little is known about the lived reality of growing up HIV positive in resource poor contexts and the long term therapeutic efficacy of ART regimens remain mostly speculative (Mills et al., 2011). Drawing on two years of ethnographic fieldwork conducted at a rural hospital and with HIV positive children on treatment in Malawi, I examine the daily grind within households trying to raise healthy children in precarious circumstances. While most service delivery organizations base their understandings of children's care on the model of the “family” or the “household”, I argue that they need to consider more seriously the ways that everyday social relationships in specific contexts shape long term treatment success for children. To that end, I propose that Janzen's (1978) concept of the “therapy management group” (TMG), is a more accurate, fluid and inclusive way to think about the care and treatment of children living with HIV. By drawing on specific treatment trajectories I explore how gendered and intergenerational dynamics influence the timing of HIV treatment initiation, the ability to find “good food” for children on treatment and how high mortality rates among elderly and HIV positive caregivers can both impede and promote early diagnosis and treatment adherence. Findings from this research will help pediatric and adolescent HIV care and treatment services develop community based approaches to the long term care and treatment of infected children by highlighting how important it is to avoid preconceived conceptions about how child care works in specific settings.

“Life is not a rehearsal, it's a performance”: An ethnographic enquiry into the subjectivities of children and adolescents living with antiretroviral treatment in northeastern Tanzania

Antiretroviral treatment (ART) enables ever more HIV-positive children in sub-Saharan Africa to grow into adulthood. While policy documents recommend that children be fully informed about their health status and actively participate in treatment related decision-making, the implementation of such recommendations is often confined by organizational shortcomings and counterproductive power dynamics within medical institutions. By briefly outlining children's enrolment in HIV treatment in a highly frequented treatment center in northeastern Tanzania, in this article I demonstrate the complexity of HIV disclosure to children and the limitations of their participation in practice. I then turn to the subjective experiences of 13 children and adolescents (9–19years) living with antiretroviral medicines. The study revealed that especially the younger among them had to maneuver a field of ‘informational inconsistency’ produced by different actors' contradicting strategies of disclosure and concealment. Furthermore, children and youths constantly had to reconcile a gap between maintaining their sense of ‘normalcy’ and contrastingly experienced debilitating drug side-effects, social discrimination, and – as far as the adolescents were concerned – uncertainties in relation to sexual relationships. Based on this ethnographic material, the article concludes with several suggestions how to improve the provision of medical services and socio-moral support for HIV-positive children and adolescents.

Child development in HIV-positive and HIV-affected children in South Africa and Malawi—What role for community organisations?

There is evidence that children who are HIV positive (HIV+) are at risk for poor developmental outcomes. The aims of this study were to use developmental screening tools to measure outcomes of children affected by HIV/AIDS attending community-based organisations (CBO) and to determine what types of CBO provision these children were receiving. In a cross-sectional study, we interviewed 979 children and their carers (4 to 13years) at 28 randomly selected CBOs funded by 11 major donors in South Africa and Malawi. Developmental outcomes were assessed using the Ten Questions childhood disability screening tool and the Strengths and Difficulties Questionnaire. Health-related quality of life was measured using the Paediatric Quality of Life Scale. Overall, 13.8% (n=135) were HIV+. HIV+ children were more likely to have developmental difficulties and lower health and educational quality of life, controlling for a range of factors. Developmental difficulties and poorer quality of life were predicted by being HIV+, living in South Africa, not attending school regularly, poor housing conditions and living with a sick family member. HIV+ children tended to have been enrolled in CBO programmes for a longer period compared to other children but reported lower rates of contact. A greater proportion of HIV+ children received medical services, psychosocial interventions and emotional support, compared to HIV− children. However, fewer HIV+ children were enrolled in play groups, early childhood intervention programmes and educational programmes. Screening for developmental problems using short tools is possible in community settings in order to identify children with developmental difficulties and plan services for children infected with and affected by HIV. This study highlights the important role of CBOs to intervene to improve child development outcomes. The delivery of evidence-based services that target child development outcomes will enable HIV-infected children to meet their developmental potential and promote their participation in their communities.

‘Children will always be children’: Exploring perceptions and experiences of HIV-positive children who may not take their treatment and why they may not tell

HIV-positive children and young people may face substantial social barriers to maintaining appropriate levels of adherence to antiretroviral therapy (ART) during childhood and adolescence. In this paper, we focus on these children's voices and the challenges they face growing up living with HIV in Uganda. Drawing on retrospective self-reports of 26 children living with HIV, taking ART and attending a clinic in central Uganda, we examine the reasons for non-adherence to ART among children and why they may not report when they miss their treatment. The reasons why children may not take their treatment are socially complex and similar to adult experiences and the struggles people face in adhering to life-long treatment of a condition that is stigmatised. Children are aware of the stigma that surrounds their condition and respond to adults who stress the importance of keeping their condition secret. The causes of non-adherence are not necessarily due to forgetting, but because of concerns about secrecy and children deliberately avoiding being seen taking their treatment, for example, to avoid identification. Children's desire to maintain and protect relationships explains non-adherence as well as their failure to report it to adults. The clinical focus on exemplary adherence makes it more difficult for healthcare workers to discuss with children the social challenges that they may experience in taking treatment every day. If adults could approach non-adherence with greater empathy, recognising that children too are juggling treatment taking and social concerns then children may feel more willing to tell them about missed doses. Their poor adherence is not an inevitable element of the experience of being a child, but rather, like many adults, a substantial challenge if they are to manage their life-long treatment.