18.7. Positive Deviance Study to Enhance Quality of Life and Extend Life Expectancy of Children Living with HIV/AIDS

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Johanna Debora Imelda (Universitas Indonesia)
Djoemelia Rasanti (Universitas Indonesia)
Idris Ahmad (Universitas Indonesia)
Syadza Alifa (Universitas Indonesia)
Sri Mashoedi (Universitas Indonesia)
Arini Deswanti (Universitas Indonesia)
Annisah (Universitas Indonesia)


Introduction: In Indonesia, HIV/AIDS cases have increased since 1987. The HIV transmission in infants and children can occur horizontally through blood transfusions, or vertically from mother to babies. Previous studies showed that children living with HIV/AIDS (CLWHA) cannot reach the age of 5 years without antiretroviral treatment (ART). However, the data from Ministry of Health and NGOs showed that some CLWHA infected by their mothers can survive without ART until they are teenagers. Using “Positive Deviance” approach, this study examines how the CLWHA can survive longer although they are not yet started the ART.

Methods: This study used a qualitative approach with life history method using FGD and in-depth interviews for data collection. Key informants are CLWHA who started ART after the age of 5 years. The supporting informants are the parents/caregivers, NGO staffs, and paediatric.

Results: The findings, based on a narrative of CLWHA, illustrate that the complexity of the bio-psycho-social condition of CLWHA should not only be supported by an adequate physical and medical care but also needed the support of the social system and environment.

Conclusion: Only by considering the complimentary of physical, medical and social support we can improve the quality of life of CLWHA so that their life expectancy can be extended.

Keywords: Children, Quality of Life, Positive Deviance