Hope for the Future But Fear the Risk of Stigma: Ethiopian Family Caregivers' Lived Experience of Caring for Their HIV Positive Child Two Years After Starting Antiretroviral Treatment.

Family caregivers are believed to be the primary source of support for HIV-affected children. There is limited evidence about practices of support for caregivers, to strengthen them and to enhance the welfare of HIV positive children, especially in African settings. Our aim was therefore to illuminate caregivers' lived experiences of caring for a child in Ethiopia 2 years after the child was enrolled in antiretroviral therapy. Qualitative interviews with 18 family caregivers of 18 children were performed and analyzed using an inductive design with a hermeneutic phenomenological approach. The family caregivers' lived experience was shown in two main themes comprising "lifelong medication gives hope for the future" and "support challenged by the fear of stigma." The family caregivers experienced hope and dreams for the future as they saw their child as healthy and they had regained normality in life after the child's diagnosis. The caregivers still feared the disclosure of the child's diagnosis, which gave rise to conflicts with the child, the family, and society. Good quality support from the healthcare staff lightened their burdens. Further studies are recommended on the strategies of stigma reduction and developing need-specific modalities to support caregivers in the community.

Caregiver-reported antiretroviral therapy non-adherence during the first week and after a month of treatment initiation among children diagnosed with HIV in Ethiopia.

To achieve optimal virologic suppression for children undergoing antiretroviral therapy (ART), adherence must be excellent. This is defined as taking more than 95% of their prescribed doses. To our knowledge, no study in Ethiopia has evaluated the level of treatment adherence at the beginning of the child's treatment. Our aim was therefore to evaluate caregiver-reported ART non-adherence among children and any predictors for this during the early course of treatment. We conducted a prospective cohort study of 306 children with HIV in eight health facilities in Ethiopia who were registered at ART clinics between 20 December 2014 and 20 April 2015. The adherence rate reported by caregivers during the first week and after a month of treatment initiation was 92.8% and 93.8%, respectively. Our findings highlight important predictors of non-adherence. Children whose caregivers were not undergoing HIV treatment and care themselves were less likely to be non-adherent during the first week of treatment (aOR = 0.17, 95% CI: 0.04, 0.71) and the children whose caregivers did not use a medication reminder after one month of treatment initiation (aOR = 5.21, 95% CI: 2.23, 12.16) were more likely to miss the prescribed dose. Moreover, after one month of the treatment initiation, those receiving protease inhibitor (LPV/r) or ABC-based treatment regimens were more likely to be non-adherent (aOR = 12.32, 95% CI: 3.25, 46.67). To promote treatment adherence during ART initiation in children, particular emphasis needs to be placed on a baseline treatment regimen and ways to issue reminders about the child's medication to both the health care system and caregivers. Further, large scale studies using a combination of adherence measuring methods upon treatment initiation are needed to better define the magnitude and predictors of ART non-adherence in resource-limited settings.

Surviving Overwhelming Challenges: Family Caregivers' Lived Experience of Caring for a Child Diagnosed with HIV and Enrolled in Antiretroviral Treatment in Ethiopia.

Family caregivers play a critical role in caring for children living with HIV, however, there is little knowledge about their experiences. The aim of this study was to illuminate the family caregivers' lived experiences of caring for a child when he or she has been diagnosed with HIV and enrolled to antiretroviral treatment. Qualitative interviews with 21 family caregivers of 21 children diagnosed with HIV were analyzed using an inductive design with a hermeneutic phenomenological approach. The caregivers' experience were articulated in 5 subthemes under the main theme of "Surviving overwhelming challenges": "Committed care-giving," "Breaking the family life," "Caring burdens," "Confronting conflicts," and "Living with worry." Despite the difficult situation the family caregivers experienced with extensive worry, caring burdens, and disrupted family and social networks, they were committed caregivers. They were empowered by their belief in God but also by their strong belief in the child's treatment and support from healthcare workers. The healthcare system needs to consider possible ways to support the family caregivers during child's HIV diagnosis and treatment initiation as part of a continuum of care.