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Experience of taking care of children exposed to HIV: a trajectory of expectations 1

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.

Considering the importance of these issues and social interactions that surround the care provided to children exposed to HIV, these patients require that professionals are sensitive to their needs, to the needs of the caregiver/mother and those of the family, who provide care and experience a lack of definition regarding the child's diagnosis and also a feeling of being responsible for the VT. Hence, this study's aim was to understand the experience of caregivers/mothers with regard to the care provided to infants exposed to HIV due to vertical transmission.

Method
This study adopted a qualitative, descriptive and exploratory method and employed Symbolic Interactionism as the theoretical framework, which sees the human being as a social being who interacts as a basic unit. From this perspective, individuals and society are created through social interaction and what happens in the present depends both on past experiences and relationships that take place in the present. Hence, if we want to understand the cause of human behavior, we need to focus on social interactions (10) .
Data were collected in a healthcare facility in the Northeast of Brazil, in a state university hospital founded in the 1970s that is kept with resources from the Brazilian Health System. It is considered a referral center for the care, prevention and treatment of individuals with HIV/ AIDS and exposed children, both for those living in the state and in surrounding states. Selection criteria included: being a caregiver of a child up to 18 months old, not having a definitive diagnosis concerning HIV (infected or not infected/ serum-reverted), and attending the follow-up in the service. This age group was selected because there is not a definitive diagnosis at this age due to the need to observe the serological evolution (4) .
A total of 36 caregivers and 29 children born from HIV seropositive mothers participated in this study: mothers (24), fathers (5), and others (7) such as grandmother, aunt, and great-grandmother. The number of participants was not previously established.
Data collection ceased when no new reflections were presented and data became repetitive, a process called theoretical saturation (11) . Interviews were conducted from December 2012 to February 2013.
The adults responsible for taking care and accompanying the child to the service were approached in the waiting room and invited to talk in a private room the service had reserved for the interview. Those accompanied by other people who also took care of the child (e.g. father, grandmother, great-grandmother or aunt) were also invited to participate. They were asked to provide written consent and received clarification concerning the study objectives and strategy of data collection, and were also ensured of anonymity and confidentiality of their reports. Those who signed free and informed consent forms were included in the study.
The interview was collective when the caregiver was accompanied and individual when not accompanied.
Interviews took 50 minutes on average and were conducted by the primary author. These interviews were conducted during a single meeting and the following questions were asked: "What is it like for you to take care of a child who was exposed to HIV?" and "What are the difficulties and facilities concerning the child's treatment?" The interviews' audio was digitally recorded and transcribed verbatim. The content of interviews was grammatically corrected. The participants were identified by their kinship with the child (mother, father, aunt, grandmother, great-grandmother), followed by an ordinal number that showed the order of interviews.
Data were examined to verify what they revealed based on Qualitative Content Analysis, which consists of preparing, organizing and reporting results (12) . The gathering of data for content analysis, reading to obtain the meaning of the whole, and selecting units of analysis based on the study's objective and theoretical framework, permitted identifying the units of meanings, i.e. words, phrases or paragraphs related to the content and context. These first steps consisted of the preparation phase. In the organization phase, we opted for an inductive path, in which there was coding, the creation of categories and data were grouped within broader themes to reduce the number of categories. Hence, a general description of the phenomenon was developed through the generation of categories, abstracting them.

Results
Most participants (23) were the mothers who had HIV and were the main caregivers. There was one foster mother and other people (grandmother, aunt and great-grandmother) who took care of the child due to the absence of biological mothers who either died or abandoned the child. When mother and child lived with the child's father or grandfather, these also took care of the child.
With regard to the age of the main caregivers (28), half were between 20 and 30 years old and the other half were older than 30 years of age. In terms of education, most participants had attended elementary and/or middle school (12), complete or incomplete high school (12), followed by those who attended some college or had a bachelor's degree (3), or were illiterate.
Regarding the discovery of HIV infection, there were mothers who found out before pregnancy (8), during pregnancy (14), during labor (2), and after the child's birth (4). Most (25) attended prenatal care and used ARP during pregnancy (24).
Of the 29 children (one case of twins) exposed to HIV, most were males (20), aged one to six months old (17). With regard to vertical exposure to HIV within the family, most reported it was the first case of exposure (22). Most children had siblings (17)

Solitary experience in handling the antiretroviral therapy
When ARP with zidovudine (AZT) was initiated after the child's birth in the maternity ward, it was administered by the nursing staff or this responsibility was transferred to the child's caregiver, either the mother Alvarenga WA, Dupas G. or her companion. There were different schedules for the AZT administration and the hospital expected that the mother would bring the medication to be given to the child. This medication is provided by the specialized service (SAE) where the mother already attended her follow-up. In this context, there were mothers who reported not being aware when the first dose of AZT was administered. Some were discharged from the hospital without knowing the name of the medication or its specificities. The caregivers administered the medication at home the same way they had witnessed at the hospital or the way they were oriented to. There were children who did not receive the medication to continue the therapy at home or initiated the therapy only at home. Some reported the supply of wrong or incomplete information, especially with regard to the date the therapy should be interrupted, so that some children received the medication for periods longer or shorter than the recommended. The caregivers valued the medication even though they were unaware of its purpose. They reported being committed and concerned with complying with the therapy and some changed the family's routine to comply with the schedule and dedicated themselves so they would not forget administering the medication. In terms of believing in the medication, some caregivers believed that it was essential for the child to avoid infection by HIV or its manifestation. The fact that mothers have to attend a specialized service makes them feel exposed, fearing people's judgment, and that they will discover their condition.
Being in the waiting room caused them discomfort because they feared being seen there, something they considered terrible. Whenever possible, they would deny the name of the hospital that hosted the specialized service and preferred general hospitals to attend consultations to keep the diagnosis "masked" or hidden.
The caregiver feared that, when taking the child to other services such a Family Health Units (FHU), he would have to reveal his condition or that of the child.
We don't want them (FHU professionals)

Looking to the future and fearing the disease
The path up to the disclosure of the diagnosis was experienced with much anxiety, sadness, fear and  Because the caregivers have HIV, they fear death and consequently fear not being able to see their children grow and experience their rites of passage. The mother wonders who will take care of her child in her absence and, to avoid this outcome, she focuses on her treatment and healthy habits to achieve longevity.

Discussion
We sought to identify the experience of caregivers Another Brazilian study reports similar results with regard to the higher number of male children being exposed to HIV and the number of siblings (8) .
Women with HIV have had the highest number of pregnancies (13) and the reason may be that prophylaxis to avoid VT is safe, which encourages them to have a new pregnancy (7) . ARP should be initiated while the child is in the maternity ward, immediately after birth, and the mother or caregiver should receive the medications at hospital discharge and be able to continue the therapy at home (4) . In Brazil, AZT oral solution should be given to newborns exposed to seropositive mothers who received medication during pregnancy, preferably in the first four hours of life, in dosages that correspond to the newborn's number of gestational weeks, every 12 hours for four weeks. Newborns of infected mothers who did not receive APR during pregnancy should have AZT plus Neviparine, even those who received injectable AZT at the time of delivery (4) .
One study conducted in 30 Brazilian maternity wards assessed the degree of implementation of the Brazilian Program to Control the Vertical Transmission of HIV (5) , and another study that was conducted with mothers and children infected through VT (6) reported weaknesses in the implementation of these measures by healthcare services, which corroborate this study's findings, especially with regard to lack of access to oral AZT. These weaknesses are due to a lack of organization, administration and assessment of healthcare services (5)(6) .
These failures may partially be related to the healthcare professionals (14) .
Mistakes may compromise the therapy's success.
Among the main errors that take place at the patients' homes are: the administration of the AZT syrup beyond the recommended time and in inappropriate dosages, increasing the risk of side effects. According to a crosssectional study addressing the ability of mothers to take care of children exposed to HIV in Brazil, the reason for the inappropriate administration of the medication is the lack of orientation at the maternity (8) , that is, low quality information is provided by the healthcare professionals.
As stated by another study conducted with mothers of children younger than six months of age and exposed to HIV/AIDS, these are some of the main factors accounting for the current levels of VT in Brazil (7) .
One study reports that mothers are insecure and have difficulties administering the oral medication because the children do not completely swallow the AZT syrup (15) . With regard to AZT side effects, the mothers reported anemia, which was considered normal. Another medication that these children receive during the treatment is chemoprophylaxis for Pneumocystis jiroveci pneumonia (SMZ-TMP), from four to six weeks of life until they complete one year old or until the possibility of HIV infection is completely cleared (4) . The reason is that pneumonia is the most frequent opportunist infection in the first year of life among children with HIV (16) .
The mothers believe in the treatment efficiency and that, when properly administered, the child will be healthy and free from HIV (7) . The mother or another caregiver is responsible for postnatal care and should be oriented to properly perform the therapy at home (17) .
It has been a challenge because non-adherence to the treatment may cause the child to become infected by HIV, pneumonia or other comorbidities (16) . The mothers were committed to comply with the recommendations because they were afraid of transmitting HIV to their children. One qualitative study, also using Symbolic Interactionism as the theoretical framework, reports there is a desire and hope the child will be seronegative and achieving this goal is related to interactions between mother and child, mother and disease and mother and God (18) .
A scale was applied to 60 mothers to assess their ability to care for children exposed to HIV and found that they have moderate to high ability to administer AZT, with no significant association with education, age or income (17) . With regard to the immunization scheme, the mothers addressed in this study reported their children's vaccines were updates, different from other studies conducted in the Northeast of Brazil, reporting non-Interactionism, derives from the internalization of the social process in which the individual acquires the ability to guide his/her actions, considering consequences foreseen for alternative lines of actions (10) . Therefore, the best option for parents is omission, because they fear the consequences of disclosing the diagnosis. These consequences involve meanings that are handled and modified through interpretative processes. Based on these processes, the individual directs his/her behavior or manipulates the situation (10) .
The way mothers interact with the disease interferes in her interaction with the child. The mother sees the disease as a threat in her everyday life while taking care of the child and in her contact with the child because she fears transmitting the disease to the child through skin wounds or casual contact (15,23) . The HIV prevents mothers from performing some everyday activities with their children (24) , as they see them as fragile and overprotect them, fearing that they will become ill (20) , even though they consider the children to be healthy (15) .
Their main concern is the child's definitive diagnosis. Their reaction when receiving the result of the HIV infection is related to the meaning assigned to a life with HIV. This meaning makes caregivers fear a positive diagnosis for their children. This is so, because human beings act in accordance with meanings and society is key for this because the meanings of things derive from the interaction with others (10) . The stigma of the disease and the importance of having close social relationships make the diagnosis to be feared, because it interferes at all levels of interaction, well being and success (21) .
Expectation with regard to the result is experienced with anxiety and apprehension. While certainty is not possible, the mothers resort to positive thinking and God, through faith, asking for the child not to become infected (18,20) .
These interactions established with themselves and God help these mothers to cope with the situation. Other studies addressing care provided at home, how to handle ARP, prejudice associated with HIV,