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Childhood disclosure related issues and life experiences of children living with HIV in West Bengal, India and formulation of an instrument for assessment of their health related quality of life

  • Author(s): Das, Aritra;
  • Advisor(s): Detels, Roger;
  • et al.

OBJECTIVES: To explore the issues around health related quality of life (HRQoL) of children living with HIV (CLH) through qualitative inquiries and to formulate and validate a culturally acceptable HRQoL instrument.

METHODOLOGY: The study was conducted in three districts of West Bengal, India. During the qualitative phase, we conducted 34 in-depth interviews (IDI) with caregivers of CLH and 4 focus group discussions (FGD) with 8 to 15 year old CLH. We identified items affecting HRQoL through qualitative analysis to create 2 HIV-targeted scales – ‘symptoms’ and ‘discrimination’. These 2 scales were combined with 4 generic core scales of the ‘Pediatric Quality of Life Inventory (PedsQL)’ to formulate the ‘Quality of life (health-related) of children living with HIV/AIDS in India (QOL-CHAI)’ instrument. In order to assess applicability and detect problems with understanding of intended meaning of items, cognitive interviews were conducted with 10 children (5 each from 8 - 12 years and 13 – 15 year age categories). In the quantitative phase we recruited 199 CLH and 194 children who were exposed but not HIV infected (HIV-affected) to evaluate psychometric properties of the QOL-CHAI instrument and to compare HRQoL between CLH and HIV-affected children.

RESULTS: IDIs with caregivers identified several barriers and facilitators related to pediatric disclosure of HIV status. Further, various perceptions and experiences associated with caregiving for CLH and issues such as discrimination, adherence to medication, grievances about available health care provisions were also revealed through qualitative inquiries. The QOL-CHAI showed acceptable psychometric properties with Cronbach’s α for the scales ranging between 0.69 and 0.85. Factor structure of the QOL-CHAI was found to be roughly in agreement with the domain specific categorizations. In terms of convergent validity, symptom scale score showed significant negative correlation with CD4 cell count (Pearson’s coefficient=-0.23, p<0.01). In linear regression analysis comparing between CLH and HIV-affected children, HIV infection was found to be associated with lower mean scores on all HRQoL domains except ‘discrimination’.

CONCLUSION: Besides demonstrating that the QOL-CHAI can serve well as a brief, standardized instrument to measure HRQoL, the current study fills some of the existing knowledge gaps regarding pediatric disclosure and caregiving needs of Indian CLH.

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