Disclosure of Illness Status to Children and Adolescents With HIV Infection

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doi:10.1542/peds.103.1.164

Cited by 202 publications

(28 citation statements)

References 12 publications

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“…A significant finding of this study was the low rates of partial disclosure (7%), especially considering that most of the children were of school age (5-12 years), for whom WHO and other guidelines recommend partial disclosure (AAP, 1999;MOH-Uganda, 2005;WHO, 2011). A study by Malobika et al (2011) in Northern India involving children aged 5-17 years found that no children had received partial disclosure; however, studies elsewhere in sub-Saharan Africa, which also included school-aged children, found higher partial disclosure rates of 58% (Kallem et al, 2011) and38% (BikaakoKajura et al, 2006).…”

Section: Discussionmentioning

confidence: 77%

“…The World Health Organization (WHO) and other guidelines generally recommend a step-by-step disclosure process, in which information on disease is delivered gradually based on its complexity and the child's cognitive development. Nevertheless, disclosure should be considered in children of schoolgoing age, and all adolescents should be fully disclosed to (AAP, 1999;MOH-Uganda, 2005;WHO, 2011). Studies have documented social and health benefits of disclosure such as improved social behavior, self-esteem and school performance, and medication adherence (Biobele et al, 2011;Blasini et al, 2004;Sherman, Bonanno, Wiener, & Battles, 2000).…”

Section: Introductionmentioning

confidence: 99%

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Understanding the role of age in HIV disclosure rates and patterns for HIV-infected children in southwestern Uganda

et al. 2014

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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.

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Section: Discussionmentioning

confidence: 77%

Section: Introductionmentioning

confidence: 99%

Understanding the role of age in HIV disclosure rates and patterns for HIV-infected children in southwestern Uganda

et al. 2014

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“…World Health organization (WHO) and American Academy of Pediatrics (AAP) strongly encourage disclosing HIV infection status to school aged children and younger children. They should be informed incrementally to accommodate their cognitive skills and emotional maturity [5, 6]. Telling children and adolescents about their HIV infection is a challenging dilemma because children are often asymptomatic in the early stages of HIV infection, yet require daily medications and close monitoring [7].…”

Section: Introductionmentioning

confidence: 99%

“…Many families do not think their children can handle the information and they do not want to upset them because they have already been through so much [8]. Several studies have documented the benefits of disclosure of HIV positive status to HIV infected children and adolescents, including psychological benefits as well as positive effects on the clinical course of the disease [6–9]. The American Academy of Pediatrics recommends that children and adolescents with HIV should be told their diagnosis [6].…”

Section: Introductionmentioning

confidence: 99%

“…Several studies have documented the benefits of disclosure of HIV positive status to HIV infected children and adolescents, including psychological benefits as well as positive effects on the clinical course of the disease [6–9]. The American Academy of Pediatrics recommends that children and adolescents with HIV should be told their diagnosis [6]. However, published rates of disclosure in children from resource rich countries vary widely, from 18 to 77% [6–9, 12], partly due to the lack of conclusive guidelines on when and how to disclose the diagnosis of HIV to children.…”

Section: Introductionmentioning

confidence: 99%

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Knowledge and disclosure of HIV status among adolescents and young adults attending an adolescent HIV clinic in Accra, Ghana

et al. 2014

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BackgroundIn Ghana it is estimated that 1.2% of HIV infections occur in young people aged 15-24 but the representation in our clinics is small. Adherence to treatment, appointment keeping and knowledge of HIV status remains a challenge. Disclosure has been shown to result in better adherence to therapy, good clinical outcomes, psychological adjustment and reduction in the risk of HIV transmission when the young person becomes sexually active. A baseline study was conducted to ascertain if adolescents and young adults knew their HIV status and their knowledge on HIV. Informed consent and assent were obtained from willing participants. Self-administered questionnaires on general knowledge of HIV, HIV treatment and disclosure were collected and analyzed.ResultsThirty-four young persons participated in the study. The mean age was 16.9 ± SD 2.5 and 62% (21/32) were female. All of them were still in school. Eighty-five percent were aware that young people their age could fall sick, 91% had heard of HIV, 70% knew someone with HIV and 45% thought that adolescents were not at risk of HIV. On modes of HIV transmission, 66.7% knew HIV was transmitted through sex and 63.6% knew about mother to child transmission. Fifty three percent (18/34) knew their HIV status, 50% (17/34) were on antiretroviral and 35% (6/17) of them admitted to missing ARV doses. One person who said he was HIV negative and another who did not know his status were both on ARVs.ConclusionDisclosure of HIV status to adolescents and young people is dependent on a complex mix of factors and most practitioners recommend an age and developmentally appropriate disclosure. Thus it is highly individualized. The knowledge and awareness of HIV was 91% compared to 97% of adults in the most recent Ghana Demographic and Health Survey however only about two thirds had acceptable in depth knowledge on HIV. Only half knew their HIV status which was not the best considering their ages. There is the need to strengthen education to young persons with HIV, support adhere to ARVs for better outcomes and assist care givers to disclose HIV status to them.

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Addressing Ethical Concerns Regarding Pediatric Palliative Care Research

Rapoport¹

2009

Arch Pediatr Adolesc Med

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Disclosure of Illness Status to Children and Adolescents With HIV Infection

Cited by 202 publications

References 12 publications

Understanding the role of age in HIV disclosure rates and patterns for HIV-infected children in southwestern Uganda

Understanding the role of age in HIV disclosure rates and patterns for HIV-infected children in southwestern Uganda

Knowledge and disclosure of HIV status among adolescents and young adults attending an adolescent HIV clinic in Accra, Ghana

Addressing Ethical Concerns Regarding Pediatric Palliative Care Research

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