A perspectiva do cuidador sobre o cuidar/cuidado da criança vivendo com HIV: um estudo de representação social

Abstract

The object of the study is the social representation of caring for children living with HIV from the caregiver's perspective. The general objective is: to analyze care/care for children living with HIV from the caregiver's perspective. Exploratory, descriptive, qualitative study, supported by the Theory of Social Representations in its procedural approach from the perspective of social psychology. The setting was the pediatric Infectious Diseases Outpatient Clinic (DIP) of a University Hospital in the city of Rio de Janeiro. The participants are ten caregivers of children living with HIV, over 18 years of age, who have been caring for the children for more than a year. Data collection was carried out using a sociodemographic and clinical characterization form referring to caregivers and children, using the free word evocation technique and semi-structured interviews, being analyzed using descriptive statistics, the evocations organized in tables, by inductive term, and the discursive production through lexical content analysis using the IRAMUTEQ software. Study evaluated by the Research Ethics Committee of the State University of Rio de Janeiro, approved with number 5,759,039. Among the 10 participants, seven were women and three men, the majority (30%) aged between 31 and 38 years old. The children were between five months and 10 years old, and 80% were female. Regarding the evocations referring to caring for children, the words/expressions responsibility, dedication, attention, it is complicated, difficult stand out, as well as those related to the practical dimension of care such as consultation, medication at the right time and going to the hospital. In the evocations about children with HIV, sadness, concern, prejudice, discrimination, and words referring to care practices and affective behaviors such as medication, giving the medicine, treating, caring, doctor, as well as affection, love and attention stand out. Four classes emerged from the lexical content analysis: the child using antiretrovirals - care and difficulties; the HIV test - diagnosis, guilt and care; feelings, expectations, knowledge and emotional care when living with a child with HIV; social spaces for coexistence: naturalization, discrimination and care for others. The social representations of caregivers in relation to caring for children living with HIV are expressed in the contents of free evocations and in the discursive production of caregivers. It is clear that for the group, caring for children with HIV represents responsibility, dedication, love, care (in different aspects), and is complicated/different. The representation is based on the affective-attitudinal and practical dimensions. It is concluded that nurses need to rethink the format of their assistance in order to provide attention and support to caregivers who have specific demands regarding the care of HIV-positive children.