Highly active antiretroviral therapy has enabled HIV-infected children to survive into adolescence and adulthood, creating need for their own HIV diagnosis disclosure. Disclosure has numerous social and medical benefits for the child and family; however, disclosure rates tend to be low, especially in developing countries, and further understanding of the barriers is needed. This study describes the patterns and correlates of disclosure among HIV-infected children in southwestern Uganda. A cross-sectional study was conducted in a referral hospital pediatric HIV clinic between February and April 2012. Interviews were administered to caregivers of HIV-infected children aged 5-17 years. Data collected included socio-demographic characteristics of the child and caregiver, reported disclosure status, and caregivers' reasons for full disclosure or non-full disclosure of HIV status to their children. Bivariate and multivariate analysis was done to establish the socio-demographic correlates of disclosure. Caregivers provided data for 307 children; the median age was eight years (interquartile range [IQR] 7-11) and 52% were males. Ninety-five (31%) children had received full disclosure (48% of whom were >12 years), 22 children (7%) had received partial disclosure, 39 (13%) misinformation, and 151 (49%) no disclosure. Full disclosure was significantly more prevalent among the 9-11 and 12- to 17-year-olds compared to 5- to 8-year-olds (p-value < 0.001). The most frequently stated reason for disclosure was the hope that disclosure would improve medication adherence; the most frequently stated reason for nondisclosure was the belief that the child was too young to understand his/her illness. There was an inverse relationship between age and full disclosure and partial disclosure was rare across all age groups, suggesting a pattern of rapid, late disclosure. Disclosure programs should emphasize the importance of gradual disclosure, starting at younger ages, to maximize the benefits to the child and caregiver.
Introduction Treatment abandonment contributes significantly to poor survival of children with cancer in low‐ and middle‐income countries (LMIC). In order to inform an approach to this problem, we investigated why caregivers withdraw their children from treatment. Methods In a qualitative study, carried out in October and November 2020, in‐depth interviews were conducted with caregivers of children who had abandoned cancer treatment at the Pediatric Cancer Unit of Mbarara Regional Referral Hospital in south‐western Uganda. Recorded in‐depth interviews were transcribed and analyzed to identify themes of caregivers’ self‐reported reasons for treatment abandonment. The study was approved by the Review and Ethics Committee of Mbarara University of Science and Technology. Results Seventy‐seven out of 343 (22.4%) children diagnosed with cancer abandoned treatment during the study period; 20 contactable and consenting caregivers participated in the study. The median age of the caregivers was 37 years and most (65%) were mothers. At the time of this study, eight (40%) children were alive and five (62.5%) were males; with a median age of 6.5 years. Financial difficulty, other obligations, the child falsely appearing cured, preference for alternative treatments, belief that cancer was incurable, fear that the child's death was imminent and chemotherapy side effects were the caregivers’ reasons for treatment abandonment. Conclusions and recommendation Seeking cancer treatment for children in Uganda is an expensive venture and treatment abandonment is mainly caused by caregivers’ difficult socio‐economic circumstances. This problem needs to be approached with empathy and support rather than blame.
Knowledge and practices of women regarding prevention of mother-to-child transmission of HIV (PMTCT) in rural southwest Uganda Worldwide, about 3.4 million children aged under 15 years are HIV-infected, with 90% living in Sub-Saharan Africa; 1 150 000 of these children are in Uganda. Ninety-five percent of pediatric HIV in Sub-Saharan Africa results from mother-to-child transmission (MTCT) during pregnancy, labor, or with breastfeeding. Prevention measures (PMTCT) can reduce the risk of MTCT, 2 but only if women have this knowledge. [3][4][5][6] Currently, in rural south-west Uganda, information on MTCT and PMTCT is provided to women by local health workers including volunteer village health teams. 7 This study explored the knowledge and practices of women in rural south-west Uganda regarding MTCT and PMTCT to determine if women have this needed knowledge.We conducted an exploratory descriptive study among women of child-bearing age (15-49 years) from Mwizi, a rural sub-county in Mbarara district in south-west Uganda, in July and August 2011. A semi-structured oral questionnaire was administered to 100 women randomly sampled from the five sub-county parishes; 10 women per parish.Of the 100 women approached, all participated; 88% were aged between 15 and 25 years, 88% had a primary education, 84% were peasant farmers, 88% were married, and 91% had been pregnant or were pregnant at the time of the study. Ninety-one percent knew that MTCT occurs; 72% were aware of PMTCT. Only 7% had adequate knowledge about MTCT and the needed prevention steps. While 82% knew MTCT can occur during labor and delivery, only 54% knew breastfeeding was a risk and only 23% knew HIV could be transmitted during pregnancy. Sixty-eight percent knew that delivery at a health facility could reduce the risk because additional preventative measures would be taken. Seventy percent recalled hearing messages about MTCT and PMTCT from a health worker, their major source of PMTCT information. Several women had practiced PMTCT interventions themselves or had advised their friends.In conclusion, most women of child-bearing age in Mwizi sub-county of Uganda lacked adequate knowledge to prevent MTCT despite high awareness of MTCT and the need for PMTCT. For PMTCT knowledge to trickle down to rural women, messaging from village health workers, the major source of information, needs to be reinforced. More training on techniques to reinforce PMTCT messages is needed. Other forms of messaging, i.e., radio and cell phone messages, village meeting discussions, and social gatherings might reinforce prevention awareness. 8,9
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