HIV disclosure: barriers and motivations of caregivers
E. Galano1,2, R.C.M. Succi1, M.A. De Marco3, M.H. Silva2, A.D.F.T.B. Gouvea1, F.B. Carmo1, S.V. Beltrão1, E.P. Cruz1, C. Rocha1, A.M. Rufino1, R.M. Jesus1, D. Bertolini2, S.R. Pimentel2, D.M. Machado1,2
1Federal University of São Paulo, Pediatric Infectious Diseases Division, São Paulo, Brazil, 2Centro de Referência e Treinamento em DST/HIV/AIDS, São Paulo, Brazil, 3Federal University of São Paulo, Department of Psychiatry, São Paulo, Brazil
Background: Despite the therapeutic advances in pediatric AIDS care, communicating the diagnosis of a serious and stigmatizing disease has been a great challenge to professionals taking care of HIV-infected children and adolescents. The aim of this study was to identify the barriers and motivations of parents for disclose the diagnosis of HIV infection/AIDS to their children and adolescents.
Methods: This qualitative study was conducted trhough interviews with 20 caregivers of children followed at two reference centers for HIV/AIDS in Sao Paulo, Brazil.
Results: The concerns that explain the reluctance of family members include the fear that the knowledge of the disease gives rise to fellings of anger, unexpected reactions, attitudes of rebelion and parental blaming about transmitting infection (11/20). The negative impact on phisical health status (5/20), mental health of children (2/20) and the secrecy about the disease in order to protect them from stimatization or discrimination (5/20), specially among those with difficulties of keeping a secret (2/5) were reported by caregivers. Immaturity to cope with the illness (1/20) and the risk of HIV transmission through unprotected sex ((2/20) were also mentioned by the interviews. Regarding the motivations for disclosure, the psycological assessment (2/20) and professional help (3/20) were encouraging elements to families inform the disease to children. The decision toward disclosure was associated with proximity of sexual life (1/20), non-adherance to treatment (2/20) extreme curiosity (2/20) and capacity of keeping secrets (2/20). The perception of child's right to know the truth was reported by one respondent. Finally, one caregiver did not explain the reason for the decision and the others (3/20) considered “the right time” to disclosure.
Conclusions: It is extremely important to identify the dificulties faced by the caregivers with the process of disclosure in orther to build strategies to overcome the obstacles.
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