Experience of taking care of children exposed to HIV: a trajectory of expectations

Abstract

OBJECTIVE: to learn about the experience of caregivers/mothers providing care to infants exposed to HIV through vertical transmission. METHODS: this qualitative study used Symbolic Interactionism as the theoretical framework. A total of 39 caregivers of children exposed to HIV in follow-up at a specialized service were interviewed. Data were analyzed through inductive content analysis. RESULTS: four categories were identified that report on the lonely experience of handling the child's antiretroviral therapy, mainly due to a lack of information or incomplete information; being attentive to required care, such as the use of prophylaxis for pneumonia, vaccines, and other practices restricted to the mother-child interaction; the desire to omit the HIV out of fear of prejudice and fear of the disease, considering future prospects. CONCLUSION: the HIV and the threat this infection may affect the child cause apprehension and feelings such as fear, guilt and anxiety in the caregivers. Healthcare workers need to work together with mothers so they are able to cope with demands and distress. Only then will the treatment to avoid vertical transmission be efficient and will mother and child be supported during the process, despite apprehension with the outcome.

AIDS and jail: social representations of women in freedom deprivation situations

“…The well-known "epidemic of fear" brought to the symbolic universe of AIDS various representations of fear: fear of the sick person; fear of being infected with the sick person's virus; fear of death; fear of physical changes; fear of prejudice and discrimination; and even fear of having fear (21)(22) . Fear is part of human activity and can be an alert for danger; however, when people speak or think about AIDS, fear assumes a negative representational connotation because it is part of a twisted or unrealistic AIDS SR that still organizes reality in a haunting, unwise way.…”

“…In summary, one's cognition in terms of the possibility of preventing a lethal illness feared by all and whose social consequences lead to a myriad of agonizing feelings (21,23) of self-pity and self-destruction, is seen in Class 5.…”

Fases psicológicas de gestantes com HIV: estudo qualitativo em hospital

“…In this context, health care services began to concentrate efforts to apply the protocols for prophylaxis of vertical transmission in seropositive pregnant women, according to a recommendation of the Ministério da Saúde-MS (Ministry of Health) observed in the study by Kupek and Oliveira 1 . These efforts were driven by investments to detect situations of iniquity and deficiencies in the application of protocols, generating subsidies to enhance assistance 5 . Investigations on virus contamination through vertical transmission allowed the researchers to observe the main risk factors for these cases: nonperformance of the HIV test in gestation and the lack of knowledge of the serology result before delivery 6 .…”

Weakened Social Network: The Experience of Caregivers of the Hiv-Exposed Infant

“…12 Despite the mother's desire to tell the health professionals about their serum status, the fear of stigma and the dear that this revelation may turn into a barrier for care prevents that. 6,24 The lack of secrecy of the diagnosis, the professionals' lack of humanization and disease management orientations are linked to these factors and, in this context, the SCS professionals were also included, 4 different from our results, in which the caregivers mentioned that these professionals, particularly the physicians, provided information and even emotional support. Situations of health professionals' prejudice have been related to other health contexts and have also been picture in another qualitative study.…”