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Objective To understand the health status of HIV orphans in a well-structured institutional facility in India.
Method Prospective longitudinal analysis of growth and anaemia prevalence among these children, between June 2008 and May 2011.
Results A total of 85 HIV-infected orphan children residing at Sneha Care Home, Bangalore, for at least 1 year, were included in the analysis. Prevalence of anaemia at entry into the home was 40%, with the cumulative incidence of anaemia during the study period being 85%. At baseline, 79% were underweight and 72% were stunted. All children, irrespective of their antiretroviral therapy (ART) status, showed an improvement in nutritional status over time as demonstrated by a significant increase in weight (median weight-for-age Z-score: −2.75 to −1.74, P < 0.001) and height Z-scores (median height-for-age Z-score: −2.69 to −1.63, P < 0.001).
Conclusion These findings suggest that good nutrition even in the absence of ART can bring about improvement in growth. The Sneha Care Home model indicates that the holistic approach used in the Home may have been helpful in combating HIV and poor nutritional status in severely malnourished orphaned children.
Objectif: Comprendre l’état de santé des orphelins du VIH dans un établissement institutionnel bien structuré en Inde.
Méthode: Analyse prospective longitudinale de la croissance et de la prévalence de l’anémie chez ces enfants, entre juin 2008 et mai 2011.
Résultats: 85 enfants orphelins infectés par le VIH, résidant dans le centre de soins Sneha, à Bangalore, depuis au moins un an, ont été inclus dans l’analyse. La prévalence de l’anémie à l’entrée dans le centre était de 40%, l’incidence cumulative de l’anémie au cours de la période d’étude étant de 85%. Au départ, 79% des enfants présentaient une insuffisance pondérale et 72% un retard de croissance. Tous les enfants, indépendamment de leur statut ART, ont montré une amélioration de l’état nutritionnel au fil du temps, telle que démontrée par une augmentation significative des scores Z pour le poids (médiane du poids-pour-l’âge Z score: −2,75 à−1,74, P < 0,001) et la taille (médiane de la taille-pour-l’âge Z score: −2,69 à−1,62 pour, P < 0,001).
Conclusion: Ces résultats suggèrent qu’une bonne nutrition, même en l’absence d’ART peut entraîner des améliorations de la croissance. Le modèle du centre de soins Sneha indique que l’approche holistique utilisée dans le centre a pu être utile dans la lutte contre le VIH et le mauvais état nutritionnel chez les enfants orphelins sévèrement malnutris.
Objetivo: Entender el estatus de salud de los huérfanos del VIH en una institución bien estructurada en la India.
Método: Análisis longitudinal prospectivo del crecimiento y de la prevalencia de anemia entre estos niños, entre Junio 2008 y Mayo 2011.
Resultados: En el análisis se incluyó a 85 huérfanos infectados con VIH que llevaban viviendo, durante al menos un año, en la casa de la institución Sneha Care Home, en Bangalore. La prevalencia de anemia al entrar en la residencia era del 40%, con una incidencia acumulativa de anemia durante el periodo de estudio del 85%. Al inicio del estudio, un 79% estaban bajos de peso y un 72% estaban raquíticos. Todos los niños, independientemente de su estatus de TAR, mostraban una mejoría en su estatus nutricional a lo largo del tiempo, reflejado en un aumento significativo del peso (media Z score peso-por-edad : −2.75 a −1.74, P < 0.001) y Z score altura (media Z score altura-por-edad : −2.69 a −1.63, P < 0.001).
Conclusión: Estos hallazgos sugieren que una buena nutrición, inclusive en ausencia de TAR, puede conllevar a mejoras en el crecimiento. El modelo de la Sneha Care Home muestra que un enfoque holístico, como el utilizado en esta residencia, podría ser útil para combatir el VIH y el estado nutricional pobre en niños huérfanos con desnutrición severa.
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The HIV epidemic has devastating consequences for affected children, particularly those who lose one or both parents. An estimated 16 million children have been orphaned by HIV infection worldwide (UNICEF 2010). In India, various causes including HIV infection, have orphaned more than 31 million children (UNICEF 2010). Current epidemiological data indicate that the number of children <15 years of age living with HIV infection is approximately 100 000 (UNAIDS 2010) and another 50 000 infants are perinatally infected with HIV in India annually (NACO 2010). An estimated 2.3 million adults live with HIV infection; about 170 000 adults die of HIV-related causes per year (NACO 2010–11). These data clearly dictate that the burden of HIV orphans in India is substantial.
The adverse experiences of HIV-infected children often begin before the death of their parents. The period of parental illness results in loss of income, increased expenditure on medical needs, and general neglect of the affected children. After parental death, infected orphans are vulnerable to abandonment by the extended family, depression, abuse, malnutrition, lack of health care and schooling, and early entry into child labour (Williamson 1997). The debate about the best way to meet orphaned children’s needs is yet to be resolved. As the number of HIV-infected orphans overwhelms the capacity of extended biological families to care for them, a viable option is to provide institutionalised residential care (Foster et al. 1995; Foster & Williamson 2000). Whereas global policies recommend that institutionalised care be used as a last resort for orphaned children (Wakhweya et al. 2008), there is evidence to suggest that well-structured orphanages can offer advantages and can even lead to positive outcomes (Wolff & Fesseha 1999; Whetten et al. 2009). Despite the high burden of paediatric HIV infection and adult deaths in India, there is a dearth of literature on the appropriate care of HIV-infected orphans in the country. This study was aimed to understand the health status of HIV-infected orphans in a well-structured institutional facility in India by a prospective longitudinal analysis of their growth and nutritional status.
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We highlight the positive effects of a well-structured institutional setting on orphaned children who lacked proper home care. The results of our study indicate that despite a high baseline prevalence of malnutrition among orphaned HIV-infected children living in an institutional facility, appropriate attention to nutrition and a comprehensive approach to healthcare even in the absence of ART can bring about improvement in growth among these children.
Poor growth is seen in 50–69% of HIV-infected children (Arpadi 2000; Weigel et al. 2010). In the Indian paediatric population, the prevalence of poor growth ranges from 45% to 62% in HIV-infected children (Dhurat et al. 2000; Merchant et al. 2001; Shah et al. 2005). In these studies, children were recruited from the community and none were from orphanages. A recent study conducted on a mixed population (orphans and non-orphans) in southern India has found the prevalence of underweight and stunting to be 55% and 46% respectively (Shet et al. 2009). In our study population of only orphaned children, we found, at entry into the institution, higher prevalences of both underweight and stunting of 79% and 72% respectively. In resource-limited settings like India, this impact of HIV on children and families is further compounded by the fact that many families live in communities which are already disadvantaged by poverty, poor infrastructure and limited access to basic services. Orphans also tend to be at greater risk for infection, all of which threaten normal growth and nutritional status.
Our results indicated that anaemia was a prominent manifestation of HIV. Although baseline prevalence of anaemia was only 40%, we found that during the study period, the cumulative incidence rose to 85%. Other Indian studies have shown anaemia prevalences of 38% (non-orphans) and 66% (mixed population, orphans and non-orphans) in HIV-infected children (Dhurat et al. 2000; Shet et al. 2009). However, studies conducted on African HIV-infected children revealed anaemia to be more common (prevalence range, 73–91%) (Adewuyi & Chitsike 1994; Semba et al. 2001; Eley et al. 2002; Totin et al. 2002), although these studies included infants, who are generally more vulnerable to anaemia.
Role of nutrition
Human Immunodeficiency Virus infection is a catabolic disease associated with high resting energy expenditure (Mulligan et al. 1997). Co-existing infections also consume a major proportion of the energy intake, thereby causing a net deficit in the energy balance of the body. The tremendous food insecurity and lack of supportive environments that HIV-infected children experience further cause poor growth. Examination of the nutrient intake of HIV-infected children revealed that their energy intake was significantly reduced among growth-impaired children compared to those with normal growth (Arpadi et al. 2000; Johann-Liang et al. 2000). Systematic reviews have demonstrated the importance of adequate nutrition in improving outcomes in HIV infection (Mahlungulu et al. 2007; Irlam et al. 2010). In HIV-infected children, nutritional supplementation is associated with an increase in WAZ (Banerjee et al. 2010). In our study, we observed a significant improvement in WHZ in children taking ART as well as in children who were not yet initiated on ART. The observed higher rate of Z-score increase among children not yet on ART compared to that of those who were on ART was probably attributable to the fact that children on ART had a more advanced form of disease along with co-morbidities which resulted in slower rate of improvement in growth than children with a milder form of disease and who did not need to be treated with ART. At Sneha Care Home, all these children received age and gender appropriate nutrition along with additional nutrition supplements such as iron when required. These results suggest that dietary support (both macronutrients and micronutrients) may have a role in improving nutritional outcomes in HIV-infected individuals, thereby improving quality of life and perhaps indirectly reducing disease-related mortality.
Antiretroviral therapy has a definite impact on sustaining growth in children with HIV, although the optimal growth rate is not often reached with ART alone (Nachman et al. 2005; Weigel et al. 2010). It is noteworthy that the growth response in the first year of ART was less pronounced in children treated in Uganda than among children in the United Kingdom and Ireland, despite similar virological and immunological control, possibly reflecting the higher degree of background malnutrition among the Ugandan children (Kekitiinwa et al. 2008). Follow-up analysis on Indian children revealed that growth response over 18 months of ART was more significant among children with normal nutritional status than in malnourished children (Bandyopadhyay & Bhattacharyya 2008). Taken together, it is possible to conclude that ART alone may not be sufficient to improve outcomes in children with HIV, and that other factors such as optimal nutrition and shelter are critical contributory factors for good outcomes.
Role of institutional care
Management of HIV-infected children requires a holistic approach with equal amount of focus on providing ART and adequate nutrition supplementation as well as providing education and adequate psychosocial care. This study provides evidence that orphaned HIV-infected children can show remarkable improvement in overall growth and nutritional status when given the opportunity to reside in an institutional setting with adequate nutritional supplementation, medical care, schooling and psychosocial support.
The debate about the best way to meet an orphan’s needs remains contentious, and it remains unclear whether these residential homes confer survival advantage over community-based programmes. Some favour extended family or foster care, whereas others suggest institutionalised settings are more advantageous. Several studies have concluded that institutional care in contrast to foster care is damaging to the development of infants and small children (Tizard & Rees 1975; Tizard & Hodges 1978; Smyke et al. 2002). Studies in Romania found that young children in institutions were more likely to have cognitive delays, poorer physical growth and negative behaviour than children living at home. However, this study also revealed that improving caregiving quality within an institution was associated with better outcomes (Smyke et al. 2007). Proponents of community care argue that institutional settings are unable to provide the individualised attention found in households and also suggest that a high child-to-caregiver ratio and frequent changes of caregivers are detrimental (Skuse et al. 1994; Ahmad et al. 2005).
On the contrary, there are several studies that show positive outcomes for institutionalised care of orphans where good caregiving and structural conditions are provided (Wolff et al. 1995; Wolff & Fesseha 1998). Large numbers of orphans make it difficult for the extended family system to absorb these children. This is particularly important for the Indian setting where economic constraints are a major limiting factor. Orphanages that make an effort to nurture child–caregiver relationships and emphasise visual, tactile and auditory interactions tend to create favourable rearing environments (Hakimi-Manesh et al. 1984). A study of orphan children in Eritrea found that children aged 9–14 years living in an institution with participatory decision making and a focus on self-reliance among its children had significantly fewer emotional and behavioural difficulties than children living in an institution that had a director-driven authoritarian style of management (Wolff & Fesseha 1998). Another study found that changing the organisational structure of the institution so that they provided the children with greater decision making and encouragement resulted in improvements in child emotional well-being (Wolff et al. 1995). Jelsma et al. (2011) examined motor development of orphaned children with and without HIV and found that children in extended family care lacked stimulation compared to those in institutional settings. An assessment of an AIDS orphanage in China indicated that although most basic needs for food, shelter and clothing are met, other aspects such as integrated education, financial stability and administrative flexibility are important requirements for an improved psychological and health outcome among orphaned children (Zhao et al. 2009). Furthermore, orphans from China and Botswana have reported the importance of uninterrupted access to food, shelter and schooling and also acknowledged that the living conditions in these institutions were better than that of the families they lived with after the death of their parents (He & Ji 2007; Zhao et al. 2009; Morantz & Heymann 2010). These data directly challenge the assumption that extended family homes are better options for childcare in resource-limited settings.
Sneha Care Home as a replicable model
Sneha Care Home offers a multitude of services, including a value-based education, balanced meals, recreational activity and routine paediatrician visits. Our data indicate that this model is beneficial for raising children as the children’s health indicators improved over time. There may be several explanations for this finding. These children reside in a family-like setting under the supervision of trained staff. The experience of living with other HIV-infected children may help normalise the HIV disease burden and provide a constant source of social support. Adherence to ART is likely to be excellent as the children are supervised in taking their antiretroviral medication together. The staff at the institution have been trained to take care of HIV-infected children, to identify any minor ailments and bring them to the immediate notice of the paediatrician for evaluation of any intercurrent illnesses. The staff members are encouraged to constantly improve the quality of life for these children and work with a system of core values that includes compassion, care, commitment and competence. The children are also prepared for life in the real world as they are given an education that includes vocational training and life skills.
This study is limited by the small sample size and short period of follow-up. The current analysis is limited to growth, nutrition and profile of infections experienced by the children living in the Home, and has not considered psychosocial well-being or cognitive growth of the children. The institution is located in Bangalore, and although the children come from all over South India, the generalisability of the results is limited, and more such studies need to be conducted in other parts of India and the world for a better understanding of optimal management of HIV orphans. These limitations notwithstanding, the lessons learned from this study improve the insight into creating well-structured institutionalised care. Long-term solutions will need to be crafted for orphan children as the impact of HIV will last for decades even after the epidemic begins to wane, and the Sneha Care Home model may serve as a replicable model for safe and appropriate care of orphaned HIV-infected children.