The role of disclosure in relation to assent to participate in HIV‐related research among HIV‐infected youth: a formative study

Corneli, Amy; Vaz, Lara M. E.; Dulyx, Jennyfer; Omba, Serge; Rennie, Stuart; Behets, Frieda

doi:10.1186/1758-2652-12-17

Cited by 35 publications

(57 citation statements)

References 7 publications

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“…Our study findings are consistent with other studies suggesting that disclosure can open up avenues for adherence and psychosocial support [9, 12, 41]. Similar to other studies, it also documents barriers to telling adolescents about their HIV-positive status, such as believing the child is not ready or is too young to comprehend the meaning of an HIV diagnosis [4, 11, 23, 42], as well as fear of stigma and discrimination [5, 41]. …”

Section: Discussionsupporting

confidence: 91%

Adolescent HIV disclosure in Zambia: barriers, facilitators and outcomes

Mburu

Hodgson

Kalibala

et al. 2014

Journal of the International AIDS Society

124

143

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IntroductionAs adolescents living with HIV gain autonomy over their self-care and begin to engage in sexual relationships, their experiences of being informed about their HIV status and of telling others about their HIV status may affect their ability to cope with having the disease.MethodsIn 2010, we conducted a qualitative study among adolescents aged 10–19 living with HIV in Zambia, and with their parents and health care providers. Through interviews and focus group discussions, we explored the disclosure of HIV status to adolescents living with HIV; adolescents’ disclosure of their status to others; and the impact of both forms of disclosure on adolescents.ResultsOur study identified three main barriers to disclosure of HIV status: local norms that deter parents from communicating with their children about sexuality; fear of HIV stigma; and an underlying presumption that adolescents would not understand the consequences of a HIV diagnosis on their lives and relationships. With regard to adolescents’ disclosure of their HIV status to their sexual partners, our study identified fear of rejection as a common barrier. In rare cases, open family conversations about HIV helped adolescents come to terms with a HIV diagnosis. Findings indicated that disclosure had various outcomes at the individual and interpersonal levels. At the individual level, some adolescents described being anxious, depressed and blaming themselves after being told they had HIV. At the interpersonal level, disclosure created opportunities for adolescents to access adherence support and other forms of psychosocial support from family members and peers. At the same time, it occasionally strained adolescents’ sexual relationships, although it did not always lead to rejection.ConclusionsThere is a need for public health interventions that guide adolescents living with HIV, their parents and families through the disclosure process. Such interventions should help parents to assess and understand the evolving cognitive capacity and maturity of their adolescents in order to determine the appropriate time to inform them of their HIV-positive status. Such interventions should also mitigate the risk of HIV stigma, as well as local norms that may prevent discussions of sexuality within families. Adolescents who have been informed of their HIV status should be provided with on-going support to prevent disclosure from negatively affecting their psychological and sexual wellbeing. Further research is needed to explore the potential role of trusted family members in contributing to the disclosure process.

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Section: Discussionsupporting

confidence: 91%

Adolescent HIV disclosure in Zambia: barriers, facilitators and outcomes

Mburu

Hodgson

Kalibala

et al. 2014

Journal of the International AIDS Society

124

143

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“…Adults accompanying children who were not primary caregivers for the child or who did not know the child’s HIV status were excluded, as were caregivers who were not at least 18 years of age. Prior research noted that disclosure to HIV-infected children was a rare event in this setting 34; for this reason, caregivers who had already informed their child of their HIV status were excluded from the structured interviews but invited for in-depth interviews, along with their child. Findings from the in-depth interviews are reported elsewhere 35.…”

Section: Methodsmentioning

confidence: 99%

“…The survey instrument was developed based on prior research 14, 33, 34, reviewed and modified for cultural appropriateness by the research study team, and pilot tested prior to the start of data collection. The questionnaire explored sociodemographic characteristics of the participant and the child; health status of the child; emotional closeness between caregiver and child; developmental stage of the child; patterns of disclosure; caregivers’ thoughts on disclosure; individual and community-level stigma; and social support.…”

Section: Methodsmentioning

confidence: 99%

Patterns of Disclosure of HIV Status to Infected Children in a Sub-Saharan African Setting

Vaz¹,

Maman²,

Eng³

et al. 2011

Journal of Developmental &Amp; Behavioral Pediatrics

Self Cite

102

133

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Objective Adult caregivers provide children living with HIV with varying amounts and types of information about their health status that may affect their coping and health care behaviors. We aimed to describe patterns of information-sharing with children and thoughts around disclosure among caregivers in the Democratic Republic of the Congo. Methods 259 primary caregivers of children 5–17 years old in an HIV pediatric care and treatment program were screened; 8 adult caregivers (3%) had informed their child of the child’s HIV status. We conducted structured interviews with 201 caregivers whose children had not yet been told their HIV status. Results Nearly 50% of caregivers provided no information to their child about their health; 15% had given partial information without mentioning HIV, and 33% provided information that deflected attention from HIV, whether deliberately so or otherwise. Almost all caregivers said that the child should be told their status some day, and three-fourths reported having ever thought about what might lead them to tell. However, nearly one-third of caregivers saw no benefits to informing the child of her/his HIV status. A majority of caregivers felt that they themselves were the best to eventually disclose to the child, but some wanted support from health care providers. Conclusion HIV-infected children are given limited information about their health. Health care providers may serve as important sources of support to caregivers as they decide when and how to talk candidly with their children about their health.

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“…Adherence is much higher among these children (Wiener et al 1998). Many parents also argue that the child has a right to know and needs to be encouraged to lead a normal life, and to be able to protect him- or herself in the future (Corneli et al 2009). An intervention needs to focus on the benefit and the welfare of the child and the goal needs to be to have an understanding of what is best for the child.…”

Section: Discussionmentioning

confidence: 99%

“…Corneli et al (2009) conducted a study in Congo; they interviewed 19 youth, 36 parents and caregivers and 17 health professionals about the role of disclosure. All participants knew their status, and they believed that most youth wanted to be informed about their status to protect themselves and not to transmit the illness to others.…”

Section: Stigmamentioning

confidence: 99%

Changing methods of disclosure. Literature review of disclosure to children with terminal illnesses, including HIV

Heeren

2011

Innovation: The European Journal of Social Science Research

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More than 30 years after the first discovery of the deadly HIV virus, and in the wake of increased knowledge of transmission, treatment and behavioral intervention development, parents are still faced with the difficult task of whether, when and how to inform their child about her or his HIV status. Except for some general ethical considerations, there are no national or international guidelines available for handling HIV status disclosure to a child by parents and health professionals. Most studies on disclosure address the problem of stigma and the barriers to disclosure of HIV-positive status by adults to their sexual partners, caretakers, families and communities, but very few studies focus on disclosure to HIV-positive children. The majority of the studies that address disclosure to children limit themselves to stipulating reasons for barriers to such disclosure instead of the skills and knowledge necessary for effective disclosure to a child. Increasing availability of therapy for HIV across the world presses the issue of disclosure to the child. Even so, disclosure for children who are HIV-positive due to vertical transmission continues to be very difficult. There is a lack of interventions that consider guidelines for healthcare professionals, parents or persons involved with taking care of HIV-positive children. These interventions should be designed in an understanding manner towards the culture where they might be implemented and be as appropriate in the view of integrating different family structures and the child’s development.

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The role of disclosure in relation to assent to participate in HIV‐related research among HIV‐infected youth: a formative study

Cited by 35 publications

References 7 publications

Adolescent HIV disclosure in Zambia: barriers, facilitators and outcomes

Adolescent HIV disclosure in Zambia: barriers, facilitators and outcomes

Patterns of Disclosure of HIV Status to Infected Children in a Sub-Saharan African Setting

Changing methods of disclosure. Literature review of disclosure to children with terminal illnesses, including HIV

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