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[The out-of-home care of HIV-infected children]
B Vanthournout1, F Cornet, M-C Lecroart
1Centre pédiatrique de référence sida, CHU Saint-Pierre, université Libre de Bruxelles (ULB), 322, rue Haute, 1000 Bruxelles, Belgium. brigitte_vanthournout@stpierre-bru.be
Objective:
To improve the conditions of out-of-home care of HIV-infected children.
Methods:
Group discussions including staff members of 28 institutions having cared for an HIV-infected child with the objective to share 4 points of view: those of the HIV-infected child, of his parents, of the medical staff and of the out-of-home care professionals.
Results:
Care professionals are uncomfortable with the confidentiality surrounding the diagnosis. The feeling of better controlling the risks justifies their wish to obtain medical information, although these risks are ill-defined. The contributions of the parents of HIV-infected children shed a light on the link between the disclosure of the child's diagnosis and their intimacy and family history. Role-playing games with constructed scenarios revealed fixed and absurd aspects of certain beliefs and the difficulties to put in practice the acquired knowledge. The legitimacy of desire of parenthood in HIV-infected adults was questioned by some of the care professionals and their social representation of the person living with HIV appeared ambiguous, reminding the stigma these families are still victims of.
Conclusion:
Improving the conditions of out-of-home care of HIV-infected children requires ethical, legal and scientific counseling and discussions in the setting that should occur independently of the presence of a child with HIV. The disclosure of the diagnosis should only occur, if necessary, for their well-being, with their or their parents' agreement.
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