Health-related quality of life (HRQoL) and its correlates among community-recruited children living with HIV and uninfected children born to HIV-infected parents in West Bengal, India

Abstract

Purpose Helping children living with HIV (CLH) to attain an optimum quality of life is an important goal for HIV programs around the world. Our principal objectives were to determine the association of HIV infection with different domains of health-related quality of life (HRQoL) among 8- to 15-year-old CLH in India and to compare the HRQoL parameters between CLH and HIV-negative children born to HIV-infected parents (“HIV-affected”). We also assessed whether anti-retroviral therapy (ART) and CD4 lymphocyte counts were associated with HRQoL among CLH. Methods Using the “Quality of Life (health-related) of Children Living with HIV/AIDS in India (QOL-CHAI)” instrument, we interviewed 199 CLH and 194 HIV-affected children from three districts of West Bengal, India. Participants were asked to quantify the difficulties faced by them in six HRQoL domains: physical, emotional, social, school functioning, symptoms, and discrimination. Results The mean age of the participants was 11.6 (SD±2.5) years. CLH, compared to HIV-affected children, had poorer scores on all HRQoL domains except ‘discrimination’. Among CLH, there were no significant differences in HRQoL domain scores (except in the ‘discrimination’ domain) between ART-treated and -untreated groups. CD4 lymphocyte count was found to be a significant positive predictor of the ‘symptom’ scale score. Conclusions In India, interventions for CLH mostly focus on biological disease. However, the current study revealed that HRQoL among CLH was much poorer than that of a socio-demographically comparable group. Culturally and developmentally appropriate psychosocial support measures for Indian CLH are urgently needed. Health-related quality of life (HRQoL) and its correlates among community-recruited children living with HIV and uninfected children born to HIV-infected parents in West Bengal, India

Association Between Maternal HIV Stigma Among South Indian Mothers Living with HIV and the CD4 Count of Children Living with HIV

“…Therefore, understanding the relationship between mothers' perceived HIV-related stigma and the health among their children is crucial [36], especially when both mother and child live with HIV, which may compound consequences of HIV-related stigma. In India, maternalchild HIV research is focused primarily on prevention of mother-to-child transmission [37], with few studies exploring mother and/or caregiver-child dyads outside the context of transmission prevention [38], and even fewer studies investigating mother-child HIV seroconcordant dyads [39]. Borrowed from epidemiological studies regarding HIV transmission risk in intimate relationships [40] where seroconcordance describes relationships where couples are both HIV positive, we extend the concept of seroconcordance beyond intimate couples to include HIV-positive mother-child dyads.…”

Formation and psychometric evaluation of a health-related quality of life instrument for children living with HIV in India

“…Participants for the qualitative study were recruited through a convenience sample of CLH and their caregivers residing in the Paschim and Purba Medinipur districts of West Bengal (Das, 2015). Principal caregivers of CLH were requested to participate in IDIs, while CLH took part in FGDs with other CLH in their age group.…”

“…In India, where even normal uninfected children are often deprived of basic amenities and social support, ensuring quality of life for children living with HIV (CLH) is an especially arduous task. Widespread discrimination associated with HIV and lack of parental care (for orphans) compound the problem even further (Das, 2015; Turan and Nyblade, 2013). Therefore, a culturally appropriate tool to assess HRQoL will be helpful in identifying the areas of concern among the pediatric HIV population and to formulate interventions to address their specific needs.…”

Health-Related Quality of Life Among HIV-Infected Children and Its Association With Socio-Demographic, Clinical and Nutritional Variables: A Comparative Approach

“…Several studies on the HRQoL of children with HIV infection have shown equivocal findings [ 4 , 6 , 11 - 14 ]. While some authors found significantly lower quality of life among HIV-infected children when compared to healthy control [ 11 , 12 ], others found no significant associations [ 4 , 9 , 13 , 14 ]. With regards to predictors of HRQoL, there is some evidence for some socio-demographic variables such as socioeconomic status [ 15 , 16 ], clinical factors such as being on antiretroviral medications [ 6 , 17 ], disease severity [ 4 , 17 ], and nutritional indices predicting health-related quality of life [ 18 - 20 ].…”