Advocacy care on HIV disclosure to children

Area of Science:

• Pediatric Health
• Public Health
• Family Medicine

Background:

• Children with HIV require continuous medication and care.
• Disclosure of HIV status to children necessitates thorough family preparation.
• Understanding family experiences is crucial for effective support systems.

Purpose of the Study:

• To explore the experiences of family members disclosing HIV status to children under 13 years old.
• To identify the stages and challenges involved in HIV disclosure within families.
• To understand the role of healthcare professionals, particularly nurses, in supporting this process.

Main Methods:

• Qualitative study involving in-depth, individual interviews.
• Eight family members who had disclosed HIV to seropositive children were interviewed.
• Fieldwork conducted at a public pediatric outpatient hospital in Rio de Janeiro.

Main Results:

• Family members' narratives revealed two primary ways of understanding and disclosing HIV status: discovering their own status through their child's illness and a four-stage disclosure process (preparation, timing, method, post-disclosure silence).
• Nurses were identified as crucial members of the interprofessional team, offering advocacy and empowerment.
• The study highlighted the need for systematic and institutionalized support for families.

Conclusions:

• HIV disclosure to children is a multi-stage process requiring careful planning and communication.
• Nurses can significantly contribute by providing advocacy care and empowering families.
• Improved support systems can enhance therapeutic management, treatment adherence, and autonomous self-care for children with HIV and their families.