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Guideline on HIV disclosure counselling for children up to 12 years of age

Disclosure of HIV status is an important part of the process of living with HIV, and is crucial to continuum of HIV care. Disclosure decisions are particularly complex when children are involved because of concern about children's emotional and aptitudinal ability to understand and cope with the nature of the illness, stigma, family relations and concerns about social support. Parents and caregivers are often uncertain how to counsel about disclosure, and opportunities to provide HIV testing and care, and to help families start the discussion about living with HIV are often missed.

HO has developed this guidance for healthcare workers on how to support children 12 years of age and younger, and their caregivers, on disclosure of HIV status. The guidance is intended as part of a comprehensive approach to the physical, emotional, cognitive and social well-being of a developing child following the child's own diagnosis of HIV or that of a parent of close caregiver

Key findings include:

- there is evidence of health benefit (e.g. reduced risk of death) and little evidence of psychological or emotional harm from disclosure of HIV status to HIV-positive children

-disclosure to children of their diagnosis is not an isolated event but rather a step in the process of adjustment by the child, caregivers, and the community to an illness and the life challenges that it poses

- concerns of some caregivers that disclosure leads to increased behavioural problems in children and decreases the quality of the relationship are not supported by children’s reports about their reactions to disclosure of their caregivers’ HIV status

- parents’ reports indicate that preparing for the initial emotional reactions can improve the child’s responses, and responses improve with time.

Recommendations include:

- increased adherence to treatment, efforts to increase the availability and accessibility of treatment should accompany disclosure initiatives

- in preparing for full disclosure, parents/ caregivers and health workers need to help children manage the stigma of being infected or affected by HIV

- initiatives to protect privacy and to institute policy, laws, and norms preventing HIV-based discrimination, and promoting tolerance will help create environments where disclosure is less problematic

- attention is needed to the benefits of marshaling multiple sources of support, both personal and institutional, for disclosure and the challenges that follow

- it should be considered that children often express wish to support their HIV-positive caregiver, yet they need truthful and appropriate information in order to have their concerns addressed

- HCWs should be alerted that supporting a disclosure process adequately can be adapted to different geographic areas and resource environments. (WHO 2011)

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