Related Experiment Videos
"How Do We Start? And How Will They React?" Disclosing to Young People with Perinatally Acquired HIV in Uganda
Stella Namukwaya1, Sara Paparini2, Janet Seeley1,3
1Medical Research Council (MRC), Uganda Virus Research Institute, Entebbe, Uganda.
Insights
Caregivers often delay disclosing HIV status to children due to fear of relationship damage. Young people expressed frustration over delayed disclosure, highlighting the need for better support in HIV services.
Area of Science:
- Pediatric infectious diseases
- Adolescent health
- Psychosocial aspects of chronic illness
Background:
- Disclosure of Human Immunodeficiency Virus (HIV) status to infected children is recommended by age 10-12 but often delayed.
- Caregiver decision-making regarding HIV status disclosure in resource-constrained settings is understudied.
Purpose of the Study:
- To examine caregivers' decision-making processes, feelings, and dilemmas concerning HIV status disclosure to young people.
- To explore young people's reactions to disclosure and its impact on their relationships with caregivers.
Main Methods:
- Longitudinal qualitative study involving repeat in-depth interviews with 26 young people living with HIV.
- One-off interviews with 16 of their caregivers in Kampala, Uganda.
Main Results:
- Caregivers feared negative consequences and relationship damage, leading to delayed and crisis-driven disclosure.
- Young people reported frustration with delayed disclosure and obfuscation, not prolonged anger or blame.
- Disclosure timing and process significantly influenced young people's attitudes and relationships with caregivers.
Conclusions:
- Timely and planned HIV status disclosure is crucial for young people's well-being.
- HIV services should provide enhanced support and encouragement for caregivers to facilitate open communication.
- Addressing caregiver fears can improve the disclosure process and strengthen dyadic relationships.
Abstract:
Despite great advances in pediatric HIV care, rates and the extent of full disclosure of HIV status to infected children remain low especially in resource-constrained setting. The World Health Organisation recommends that, by the age of 10-12 years old, children should be made fully aware of their HIV-positive status. However, this awareness is often delayed until much later in their adolescence. Few studies have been conducted to investigate what influences caregivers' decision-making process in this regard in low-income settings. In this article, we present an analysis of care dyads of caregivers and HIV-positive young people in Kampala, Uganda, as part of the findings of a longitudinal qualitative study about young people's adherence to antiretroviral therapy embedded in an international clinical trial (BREATHER). Repeat in-depth interviews were conducted with 26 young people living with HIV throughout the course of the trial, and once-off interviews with 16 of their caregivers were also carried out toward the end of the trial. In this article, we examine why and how caregivers decide to disclose a young person's HIV status to them and explore their feelings and dilemmas toward disclosure, as well as how young people reacted and the influence it had on their relationships with and attitudes toward their caregivers. Caregivers feared the consequences of disclosing the young person's positive status to them and disclosure commonly occurred hurriedly in response to a crisis, rather than as part of an anticipated and planned process. A key impediment to disclosure was that caregivers feared that disclosing would damage their relationships with the young people and commonly used this as a reason to continue to postpone disclosure. However, young people did not report prolonged feelings of blame or anger toward their caregivers about their own infection, but they did express frustration at the delay and obfuscation surrounding the disclosure process. Our findings can inform the ways in which mainstream HIV services support caregivers through the disclosure process. This includes providing positive encouragement to disclose fully and to be more confident in initiating and sustaining the timely process of disclosure.