SEARCH

SEARCH BY CITATION

Keywords:

  • HIV;
  • orphans;
  • institutional facility;
  • growth;
  • nutrition;
  • antiretroviral therapy
  • VIH;
  • orphelins;
  • établissement institutionnel;
  • croissance;
  • nutrition;
  • ART
  • VIH;
  • huérfanos;
  • institución;
  • crecimiento;
  • nutrición;
  • TAR

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. References

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.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. References

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.

Methods

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. References

Study setting

Sneha Care Home is a faith-based residential care facility for children infected with HIV who have lost one or both parents, and hail from a low-income background. The facility was established in June 2008 in a semi-rural setting within Bangalore district in Karnataka State, Southern India, which has an HIV prevalence of 0.5% (as noted from national sentinel surveillance data among antenatal clinics in the state) (NACO 2010). Sneha Care Home aims to meet the orphans’ basic needs with a long-term goal to maintain the children’s mental and physical health. The residential facility is built over an area of 3 acres with spacious dormitories, well-equipped classrooms, library and computer laboratory, an on-site hospital, common dining hall and playground for outdoor sports and recreation activities. There are 19 full-time residential staff present, including the director, clinical coordinator, counsellors, teachers, caretakers and kitchen staff. The home takes on a ‘holistic’ approach with the children, thus attempting to provide care for the entire persona of each child, taking into account mental and social factors, rather than only physical and medical concerns. Monthly medical assessments are routine, and daily supervisions of medication and physiotherapy are mandatory. An on-site medical officer is available at all times. Sneha Care Home incorporates a regular daily schedule for classroom sessions, meals, sports, bedtime and entertainment. Specific responsibilities are given to children such as gardening, providing pet care, kitchen hygiene, and assistance with the very young children. There is a strong emphasis on the educational curriculum of the children; with extracurricular activities, involvement of existing family members in education, aptitude-based training and vocational education for future job placements.

Study design and subjects

A prospective cohort study of all HIV-infected children residing at Sneha Care Home between June 2008 and May 2011 was conducted. Children were admitted into the residential facility at different times. There were no specific criteria for admission into the Care Home. In general, children were from an economically disadvantaged background and were referred to the Home by parents who were single or sick and unable to take care of the infected child. HIV infection in these children was confirmed by three separate HIV rapid antibody tests as per the Indian national guidelines (NACO 2006). Only those children who had been living in the Home for 1 year or longer were included in the analysis. Antiretroviral therapy (ART) and co-trimoxazole prophylaxis were initiated and continued as per national guidelines (NACO 2006). Management of anaemia included iron supplementation and yearly anthelminthic medications.

Data collection

At the time of admission into the orphanage, socio-demographic information and family history were recorded. Baseline and regular medical examination of all children were performed by the paediatrician and recorded in the children’s medical records.

Anthropometry

Weight was determined using a digital scale for children accurate to 0.1 kg. Stature was measured to the nearest 0.1 cm using a standard stadiometer. Measuring equipment was checked for accuracy and calibrated using known weights and standard measuring tape every 3 months. Z-scores were based on the National Center for Health Statistics reference data and computed using the Centers for Disease Control and Prevention Anthropometric Software program (version 3.1; CDC, Atlanta, GA, USA).

Dietary recall

All children were served meals from the same kitchen. A structured menu including local seasonal produce and non-vegetarian meals was followed on a regular basis. A 24-h dietary recall was obtained from an interview with the residential facility caregivers conducted by a trained nutritionist. The quantity and size of each food portion were estimated using standardised containers, as described previously elsewhere (Bharathi et al. 2008), and subsequently analysed using the Indian Food Composition Tables to determine nutrient and caloric intake (Gopalan et al. 1996). Dietary intake was compared with the Indian Recommended Dietary Allowance (RDA) and expressed as a percentage of RDA (Gopalan et al. 1996).

Laboratory parameters

Haemoglobin (Hb) level was measured using automated blood analyser (Sysmex XT-2000i; Sysmex Inc., Kobe, Japan) and CD4 T cell count was measured using flow cytometry (FACS Calibur; Becton Dickenson Biosciences).

Definitions

Children were diagnosed and classified according to clinical and immunological categories as per the HIV WHO criteria (WHO 2006). Age stratified WHO criteria were used to define anaemia as follows: (children aged 6–59 months, Hb concentration <11.0 g/l; 5–11 years Hb < 11.5 g/l; 12–14 years, Hb < 12.0 g/l) (WHO 2001). Weight-for-age Z-score less than −2 SD, height-for-age Z-score less than −2 SD and weight-for-height Z-score less than −2 SD were considered consistent with underweight, stunting and wasting respectively.

Statistical analysis

All data were entered into Epi Info (version 3.5.3) and subsequently analysed using SPSS software version 17.0 for Windows. Descriptive analysis was carried out for baseline values. All Z-scores [weight-for-age Z-score (WAZ), height-for-age Z-score (HAZ) and weight-for-height Z-score (WHZ)] were expressed as median (25th percentile, 75th percentile). Longitudinal change in growth parameters (i.e. Z-scores) were analysed for significance using non-parametric Friedman’s test. In addition, non-parametric Cochran’s Q test was used to analyse the significance of the changes in proportions of nutritional status (i.e. change in proportions of underweight, stunting and wasting) over the follow-up period. P-value of <0.05 was considered significant.

Ethical considerations

Written informed consent was obtained from the guardian of the children and Director of Sneha Care Home. Individual informed oral assent from children >8 years of age was obtained. The study was approved by the Institutional Ethical Review Board at St. John’s Medical College Hospital.

Results

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. References

Between June 2008 and May 2011, 103 HIV-infected children were admitted into this institutional facility. Fifteen children, recently admitted in 2011 whose duration of stay at the facility was <1 year, were not included in this analysis. Two children who were admitted in 2008 were relocated within 1 year of admission to a different facility for closer proximity to extended family members. Another child died as a result of accidental trauma within 4 months of admission. Thus, a total of 85 children were included in the current analysis. The average duration of stay at the facility for these children was 22 months (range 12–36 months).

Demographic and clinical details

Mean age of the 85 HIV-infected children was 9.2 (range, 4–14) years and 60% (n = 51) were boys (Table 1). Double orphans constituted 37%, paternal orphans 42%, maternal orphans 12% and the remaining 9% had parents who had either abandoned or were unable to care for their child. All deceased and living parents were infected with HIV. All children had documented HIV infection acquired by the perinatal route of transmission. In all, 82% (70/85) had mild disease (WHO clinical stages 1 and 2). The median (p25, p75) absolute CD4 count was 736 (418, 1079) cells/mm3, and median CD4 percentage was 24% (18, 31). Severe immunosuppression (defined as absolute CD4 count < 250 cells/mm3 or CD4 percentage < 15%) was seen in 14%.

Table 1.   Baseline demographic and clinical characteristics of the study population. Children were studied in three groups with respect to antiretroviral therapy (ART) status: (i) those on ART at baseline, (ii) those started on ART during the study period and (iii) those who have never been started on ART
CharacteristicOn ART at baseline (n = 25)Started on ART during study (n = 14)Never on ART (n = 46)All children (n = 85)
  1. *CD4 percentage, WAZ, HAZ and WHZ are expressed as median (25th percentile, 75th percentile); Advanced WHO Clinical Stage is defined as WHO clinical stages 3 and 4 (WHO, 2006).

Age (years, mean ± SD)9.1 (±2.0)9.3 (±2.4)9.3 (±2.1)9.2 (±2.1)
Males, % (n)72 (18)65 (9)52 (24)60 (51)
Advanced WHO clinical stage, % (n)32 (8)14 (2)11 (5)18 (15)
CD4 percentage*27 (20, 34)16 (11, 22)24 (19, 30)24 (18, 31)
Weight-for-age (WAZ)*−2.70 (−3.65, −2.13)−2.86 (−4.62, −1.96)−2.73 (−3.63, −2.04)−2.75 (−3.73, −2.05)
Height-for-age (HAZ)*−2.71 (−3.10, −1.60)−2.69 (−3.07, −1.82)−2.69 (−3.07, −1.95)−2.69 (−3.06, −1.94)
Weight-for-height (WHZ)*−1.16 (−2.02, −0.43)−1.30 (−1.93, −0.82)−1.49 (−2.46, −0.56)−1.30 (−2.29, −0.56)
Underweight, % (WAZ < −2.0), (n)80 (20)79 (11)78 (36)79 (67)
Stunting, % (HAZ < −2.0), (n)72 (18)71 (10)72 (33)72 (61)
Wasting, % (WHZ < −2.0), (n)20 (5)29 (4)30 (14)27 (23)

Antiretroviral treatment and immunological status

At baseline, 29% (n = 25) children were on ART prior to admission into the orphanage. During the study period, 14 more children were initiated on ART based on national guidelines (NACO 2006). Of these children, nine were initiated on a zidovudine-based regimen, whereas the other five children who had coexisting anaemia were started on a stavudine-based regimen. At the end of this study period, 46% of the children (39/85) were taking regular ART (23 on zidovudine-based ART, and 16 on stavudine-based ART). Median CD4 percentage increased from 24% at entry into the Home to 27% at end of the study period. Children who were not on ART had a steady increase in median CD4 percentage from 24% to 27.5%, although the steepest increase in CD4 was seen among those who were newly started on ART, from 16% to 29%.

Growth and nutritional status

At the beginning of the study period, median (25th percentile, 75th percentile) WAZ was −2.75 (−3.73, −2.05), HAZ was −2.69 (−3.06, −1.94) and WHZ was −1.30 (−2.29, −0.56) (Table 1).

Overall, children showed improvement in their growth patterns over time as demonstrated by an increase in Z-scores. Median WAZ increased from −2.75 (−3.73, −2.05) at baseline to −1.74 (−2.46, −1.03,) over 36 months (P < 0.001). Median HAZ also increased from −2.69 (−3.06, −1.94) at baseline to −1.63 (−2.19, −0.77) over 36 months (P < 0.001). Similarly, median WHZ scores increased from −1.30 (−2.29, −0.56) at baseline to −0.10 (−0.18, −0.01) over 36 months (P = 0.49).

Among children taking regular ART at baseline, median WAZ increased from −2.70 (−3.65, −2.13) to −1.74 (−3.06, −1.71) (P = 0.008), and median HAZ increased from −2.71 (−3.10, −1.60) to −2.13 (−2.75, −1.58) (P = 0.006). Among children started on ART during the study, median WAZ increased from −2.86 (−4.62, −1.96) to −2.20 (−2.90, −1.72) (P < 0.001), and median HAZ increased from −2.69 (−3.07, −1.82) to −2.22 (−2.71, −1.72) (P < 0.001). A similar increase in growth was seen among children who were not on ART: median WAZ increased from −2.73 (−3.63, −2.04) to −1.08 (−1.86, −0.64) (P = 0.001), and median HAZ increased from −2.69 (−3.07, −1.95) to −1.44 (−1.68, −0.38) (P < 0.001) (Figure 1a,b). With respect to WHZ scores, although there was an increase observed in all the three groups, none of them reached statistical significance. Among children on ART at baseline, median WHZ scores increased from −1.16 (−2.02, −0.43) to −0.12 (−1.13, −0.33); children started on ART during the study showed increase from −1.30 (−1.93, −0.82) to −0.01 (−0.18, −0.01) and children not on ART showed increase from −1.49 (−2.46, −0.56) to −0.90 (−1.93, −0.47) (Figure 1c).

image

Figure 1.  Time trends in (a) weight (WAZ: weight-for-age), (b) height (HAZ: height-for-age) and (c) weight (WHZ: weight-for-height) over 36 months with respect to antiretroviral therapy (ART) status.

Download figure to PowerPoint

At baseline, 79% (67/85) of children were underweight, 72% (61/85) were stunted and 27% (23/85) demonstrated wasting. Irrespective of the ART status, a decrease in underweight, stunting and wasting was seen at the end of 36 months (Figure 2a–c). Among children on ART from baseline, the proportion of underweight dropped from 80% at baseline to 56% at 36 months (P = 0.03); the proportion of stunting fell from 72% to 48% (P = 0.01) and the proportion of wasting from 20% to 11% (P = 0.41). In children started on ART during the study, the proportion of underweight dropped from 79% to 36% (P = 0.01); stunting from 71% to 57% (P = 0.16) and wasting from 29% to 14% (P = 0.16). Similarly, the proportion of children not on ART who were underweight was reduced from 78% to 48% (P < 0.001), the proportion of stunted children from 72% to 50% (P = 0.002) and the proportion of wasted children dropped from 30% to 11% (P = 0.01).

image

Figure 2.  Time trends in proportions of (a) underweight, (b) stunting and (c) wasting among HIV-infected children: at baseline vs. at 36 months with respect to antiretroviral therapy (ART) status.

Download figure to PowerPoint

Dietary intake

During the day, children received three meals and two snacks (8.00 am: breakfast; 11.00 am: snack; 1.00 pm: lunch; 4.00 pm: snack and 8.00 pm: dinner). A 24-h dietary recall revealed that children <7 years received 75% of the RDA for energy, and older children received 93–107% of RDA for energy. All children received adequate (>100% RDA) amounts of both protein and fat. Iron intake was low in all age groups, ranging from 38% to 69%, and the other micronutrients such as folic acid and vitamin B12 intake were appropriate for age and gender (Table 2).

Table 2.   Net and percentage recommended dietary allowance (RDA) dietary intake of children, stratified by age and gender
Nutrients intake<7 years n = 137–10 years n = 41>10 years, males n = 17>10 years, females n = 14
Net%RDANet%RDANet%RDANet%RDA
Energy (kcal/day)1269751822932102962102107
Protein (gm/day)40133551336011260106
Fat (gm/day)34135451805123251232
Iron (mg/day)951114413381369
Folic acid (μg/day)162404191319246351246351
Vitamin B12 (μg/day)2238224532903290
Calcium (mg/day)515129570142629105629105

The prevalence of anaemia at baseline was 40% (34/85). However, the cumulative incidence of anaemia during the period of study was 85% (72/85). Unless other features were present, aetiology of anaemia was presumed to be nutritional and related to iron deficiency. Zidovudine-induced anaemia was present in seven children (30% of total on zidovudine; 7/23) and all recovered to having normal Hb levels once their ART regimen was switched to a stavudine-based regimen.

Pulmonary tuberculosis was seen in 8% (7/85) of the children living in the facility. Three children had pre-existing tuberculosis and were started on TB therapy before moving to the facility; another four were diagnosed during their stay, having become symptomatic within 3 months of admission. Other common infections included impetigo (31%), varicella zoster (24%), chronic suppurative otitis media (15%) and parotitis (13%). A majority (75%) of these children had these infections in the initial period (of <3 months) of admission into the facility.

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. References

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.

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. References