Caring for children exposed to the virus of human immunodeficiency: a trajectory of apprehension

• Grant number: 12/21001-2
• Support type: Scholarships in Brazil - Master
• Effective date (Start): January 01, 2013
• Effective date (End): February 28, 2014
• Field of knowledge: Health Sciences - Nursing - Pediatric Nursing
• Principal researcher: Giselle Dupas
• Grantee: Willyane de Andrade Alvarenga
• Home Institution: Centro de Ciências Biológicas e da Saúde (CCBS). Universidade Federal de São Carlos (UFSCAR). São Carlos , SP, Brazil

Abstract

There is a lot of care to prevent vertical transmission of human immunodeficiency virus (HIV). A parent / caregiver must feel safe and instructed to realize them and so do not increase the exposure of the child. Not only the lack of guidelines, as well as those incomplete or not understood by the mother, can jeopardize the success of treatment and weaken the care given to the child. From this, the motivation for this research that had as general objective to analyze the experience of mothers or caregivers in relation to child care to reduce the risk of vertical transmission of HIV and specific objectives to analyze the experience of families in relation to child care to reduce the risk of HIV transmission, with emphasis on the beginning of this trajectory; to know the experience of mother in relation to child care to reduce the risck of postnatal transmission of HIV; to identify the social network / support of caregivers for children exposed to HIV in the postnatal period; and analyzed the experience of women living with HIV in relation to non- breastfeeding of the son. We used the perspective of Symbolic Interactionism as a theoretical and a descriptive qualitative approach. Data collection was performed in a specialized assistance service for HIV / AIDS in Northeastern Brazil, with 24 mothers, 5 fathers and 7 caregivers (grandparents, aunts and grandmother) of infants born to HIV-infected mothers. As selection criteria for the study, the participant should be caregiver and have children aged up to 18 months, which did not have a complete definition of HIV infection as well as make up in that service. Applied to semi-structured interviews and inductive content analysis, so the themes, categories and subcategories were defined by means of which the temporal dimension of the experience of care for HIV-exposed child, revealed by a trajectory of seizure, was understood. This trajectory starts to the become a mother until the definition of the child's diagnosis, fraught with memorable moments represented by pregnancy, the first month of the child's life and expectations regarding diagnostic disclosure also with regard to the child's future. The results were organized in four scientific papers that comprise the set of related categories. The 1st article brought the category becoming a mother with HIV, related to pregnancy, where the mother imagines her child with HIV, revive the situation before past experience and want the child, in spite of everything. The 2nd article has categories have solitary experience handling of antiretroviral therapy, be attentive to the care of the child, want to omit the presence of HIV and look to the future and fear of disease. The 3rd article met the categories go to specialized service in the dark, have a hope in the specialized service and has the fragile network of support. The 4th article included the category having the dream of breastfeeding frustrated, in which the mother suffers from the inability to breastfeed and have to accept the imposition of infant formula. This study showed different patterns of implementation of the child's treatment, which deserves special attention to ensure no vertical transmission of HIV. The stigma attached to the disease, the fragility of the support network, the frustration of the mother for not breastfeeding, among other feelings such as fear, guilt, sadness, loneliness, joy, relief and faith were part of the care experience. Even with the difficulties in this trajectory, caregivers showed hope in the negative diagnosis of children and commitment to compliance with treatment. The support from some family members of people living with HIV, the physician expert service, and especially of God, did they cope with the situation. (AU)

Scientific publications

(References retrieved automatically from Web of Science and SciELO through information on FAPESP grants and their corresponding numbers as mentioned in the publications by the authors)

WILLYANE DE ANDRADE ALVARENGA; LUCILA CASTANHEIRA NASCIMENTO; CAMILA LIMA LEAL; MARCIA REGINA CANGIANI FABBRO; JAMILE CLARO DE CASTRO BUSSADORI; SIMONE SANTOS E SILVA MELO; DENISSE CARTAGENA-RAMOS; GISELLE DUPAS. Mothers living with HIV: replacing breastfeeding by infant formula. Revista Brasileira de Enfermagem, v. 72, n. 5, p. 1153-1160, Out. 2019.

ALVARENGA, WILLYANE DE ANDRADE; DUPAS, GISELLE. Experience of taking care of children exposed to HIV: a trajectory of expectations. Revista Latino-Americana de Enfermagem, v. 22, n. 5, p. 848-856, SEP-OCT 2014. Web of Science Citations: 3.