ORIGINAL RESEARCH

Relatives' day-to-day experience of caring for HIV-positive children in antiretroviral treatment

Tassiana Potrich^I; Cristiane Cardoso de Paula^II; Stela Maris de Mello Padoin^III; Antônio Marcos Tosoli Gomes ^IV

^I Assistant Professor of the Undergraduate Nursing Course of the Universidade Federal da Fronteira Sul. Chapecó, Santa Catarina, Brazil. E-mail: tassipotrich@yahoo.com.br
^II Adjunct Professor, Nursing Department, Federal University of Santa Maria. Rio Grande do Sul, Brasil. E-mail: cris_depaula1@hotmail.com
^III Associate Professor and Coordinator of the Graduate Program in Nursing, Federal University of Santa Maria. Rio Grande do Sul, Brasil. E-mail: stelamaris_padoin@hotmail.com
^IV Professor, Department of Medical-Surgical Nursing, Faculty of Nursing, State University of Rio de Janeiro. Brazil. E-mail: mtosoli@gmail.com

DOI: http://dx.doi.org/10.12957/reuerj.2016.17446

ABSTRACT

Objective: to understand relatives' day-to-day experience of caring for children who have Human Immunodeficiency Virus (HIV) in antiretroviral treatment. Method: from January to July 2013 this phenomenological study, using Heidegger as its frame of reference, interviewed 10 family members at a specialized service in southern Brazil. Results: the relatives busy themselves with a routine to apply the treatment, try to learn more about how to perform the day-to-day care and are calmed when they get the medication right and overcome difficulties in food intake. They needed help from family members to learn how to care for the child. They feel afraid of prejudice and conceal the diagnosis. They have to give more attention to the children than to themselves. Conclusion: This indicates that health care must contemplate both the child and the caregiver relative responsible for the treatment, so as to strengthen their support network and ensure care for both caregivers and children.

Keywords: Child health; family; Acquired Immunodeficiency Syndrome; HIV.

INTRODUCTION

The daily routine of children with Human Immunodeficiency Virus (HIV) undergoing antiretroviral therapy (ART) is permeated by various facets of care that go beyond the usual demands of children's growth and development ¹. These children are clinically vulnerable, so they are at increased risk of having physical, developmental, behavioral, or emotional impairment. They require permanent health care and create a greater demand for health care by professionals of various specialties. They need to maintain continued use of medications and may have activity limitations. They demand actions of health education in a continuous way for the family to maintain daily care, due to their special health needs^2-7.

Especially due to dependence on medication technology, the family member who cares for the child who has HIV is faced with specific situations that will require adaptation in the daily care. This situations include changes in their routine, such as the need for outpatient follow-up, performing examinations, adherence to ART and experiencing situations of prejudice and stigma^8,9.

For the family caregiver, understanding the processes that involve the care of this child means overcoming difficulties arising from the child's lack of knowledge of their diagnosis, dealing with the need to renounce their activities, financial difficulties and difficulty to understanding the evolution of the disease and the child's adaptation to treatment ¹⁰.

The use of antiretrovirals in children cannot be equaled to the adult person. The child has particularities that should be evaluated in the use of antiretrovirals and requires specific pediatric preparations, which also must be easy to administer and of easy dosage⁶.

The child who has HIV and needs to use antiretrovirals does not have the maturity to understand the process that involves the therapy, the need to use the medication nor the consequences and evolution of the disease. The need of a caregiver is essential, who needs to be aware of the child's conditions and needs and of the importance of adherence for the therapeutic success. Thus, this space, most of the times, is occupied by a family member².

The objective of the present study is to understand the daily routine of the family member in the care of a HIV-positive child in antiretroviral treatment.

THEORETICAL FRAMEWORK

The Heideggerian theoretical framework has the objective of elaborating an analytic existentialism, discussing the being and describing the phenomena that characterize them. In the search for the sense of being, he dedicated himself to the study of human existence, searching for the genuine origins that make everything possible. In the search for the comprehension of the modes-of-being, it has as its object the being, being possible only as Phenomenology¹¹. Phenomenology is the method of understanding phenomena, which refer to the reality that manifests itself. Therefore, the impulse for research departs not from theory or from the method itself, but from problems as they appear in everyday life.

Thus, the analytic existentialism develops in the mode of dealing with phenomenology and has the issue of being as fundamental. The relationship between being and the world, discussed by Heidegger, envisions clarifying that among these there is no distance, since the being is adherent to the world, proposing the expression: being-in-the-world, which presents the phenomenon of unity and totality¹¹.

METHODOLOGY

This is a qualitative study with a phenomenological approach based on the Heideggerian referential, which enables the understanding of meanings and the unveiling of meanings ¹¹. In this research, the comprehensive analysis was possible through the intersubjectivity established between the researcher and the familiar caregiver of the child, in the search for the meanings that they themselves have attributed to the experience of caring for the child with HIV and undergoing treatment, expressed in their verbal and non-verbal discourse.

The production of data was developed in a specialized service located in a university hospital in Rio Grande do Sul/Brazil. The research participants were family caregivers of HIV-positive children in ART that were under outpatient follow-up. The inclusion criteria of the research were: being a family caregiver of HIV-positive children undergoing ART and in outpatient follow-up.

Phenomenological interviews were carried out from January to June 2013 ¹². The number of participants in the research was not pre-established, and the field stage was concomitant to the analysis stage, which pointed to the sufficiency of meanings to respond to the research objective with the participation of 10 family caregivers. The invitation to participate in the research was performed when caring, while they were accompanying the child, while they waited to be seen in the hospital.

To begin the production of the data, the researcher made an approximation with the research scenario and with potential participants. Participation in the groups developed at the pediatric outpatient clinic allowed the researcher to know the dynamics of the service and to make herself known ¹³.

To start the interview, the guiding question was: how is it for you to take care of (child's name)? From this, the author sought to establish the meeting mediated by empathy and subjectivity. The attentive listening of the interviews' speech made possible to understand the family caregiver regarding the experience in the ART of the HIV-positive child. To deepen the speech, researchers sought to elaborate empathic questions by using key words spoken by the family members themselves¹². If during the interview the family caregiver did not express any opinion about the child's use of medication, the following question was asked: how is the use of medication by (child's name) on a day-to-day basis?

The testimonies were recorded, under consent, and transcribed as the original speech. The interviews were coded with the letter C of caregiver, followed by numbers 1 to 10 (C1, C2, C3; and so on).

The analysis of the data was based on the Heideggerian referential that includes two moments: comprehensive analysis (vague and medium comprehension) and interpretive analysis (hermeneutics)^11,13.

In the comprehensive analysis the researcher developed listening and attentive reading of the recorded and transcribed statements, respectively. A search was made for the meanings expressed by the deponents, in order to understand the phenomenon as it is shown. In this first moment the attentive reading was performed by numerous times in order for the researcher to appropriate the lines. In re-reading, the essential structures, which expressed the meaning of the investigated phenomenon and the family's routine in the care of the child, were highlighted. Then, the agglutination of the lines was done, with the intention of forming the unit of meaning (UM), which together make up the concept of being ^11,13.

The concept of being a family caregiver indicated that the experience of caring for the HIV-positive child in treatment means that after initiating medication the child has a normal life, doing everything other children do. They follow a routine; they have the right time to give the medication and for other types of care with the child. At first it was difficult while they did not find the right medication and had difficulties with the intake. It was difficult to live with the disease, not knowing who to turn to; they needed help from family members. Over time they observe, discover, learn and keep calm, because the child accepts the remedy. They feel fear of prejudice and hide the diagnosis of the child, the family and others. They also have to pay more attention to the child than to themselves. This concept was the guiding thread of interpretation, that is, of Heideggerian hermeneutics.

The second methodical moment, which intends the interpretative analysis, seeks the still veiled significance of the discovered meanings. It was performed by using the Heideggerian referential¹¹. From the concept of being, authors sought to reveal the significances of being still hidden in the meanings.

To ensure the ethical precepts of the research, this was developed in accordance with Resolution No. 466/12 of the National Health Council, in force at the time, and approved by the Research Ethics Committee, under protocol 11579012.6.0000.5346.

RESULTS AND DISCUSSION

Adjusting medication to life

For the family caregiver of the HIV-positive child in treatment, the experience of taking care means that after the child starts the medication, they have a normal life, they do everything other children do. They have an established routine of giving the medication, adjusting their schedules with the prescription and other types of care related to food, sleep and leisure. (UM1)

Initiating treatment is a facticity of HIV diagnosis. Faced with the fact of having to live with the disease, the experience of being family caregiver is revealed in this mode of facticity. In this way of being, the presence is before a fact that is imposed, the experience of taking care of a child who has HIV and who needs the treatment to survive. This fact cannot be modified by the familiar-caregiver-being. Therefore, the being is-imposed to that which is already determined and from which one cannot escape. "The expression be-imposed should indicate the facticity of being given responsibility"^11:189. This connotation of obligation of the being imposed to is expressed by the family-caregiver-being as:

The fact of establishing a routine to follow the prescribed treatment is linked to the requests of the professionals and the maintenance of the child's healthy state. So they keep busy with what they have to do. For Heidegger, the being-in-the-world is, for the most part, engaged in the world of occupations. They are involved in the fulfillment of something, "with having to do something, taking care of something, producing something, applying something"^11:103. So the family-caregiver-being says that they do everything right with the medication and with the other types of care with the child.

Initial difficulty in taking care

The family member says that in the beginning, while professionals did not find the right medication, the doses and the intake, it was difficult to take care of the child. They sought strategies for the child to accept the medication and to control the continuity of treatment. When the family member who also has HIV becomes ill, he or she needs help from other family members to care of the child. (UM2)

In facticity, the encounter with what cannot be modified, the family-caregiver-being is faced with difficulties. The family-caregiver-being counts on the help of relatives to carry out the care for the child. Thus, it is shown in the mode of being-with, which is a fundamental structure and has an ontological meaning. The with is always the world shared with others, is to live with those who come to meet in the surrounding world. "The co-presence of others comes to the encounter in the most diverse forms, from what is at hand within the world" ^11:176.

In this existential movement of the experience of taking care of the HIV-positive child in ART, the family-caregiver-being reveals themselves in the ways of being-with the relatives. "The being-in-the-world determined by and with the world is always the world shared with others. The world of presence is the shared world" ^11:119. In this case, one is engaged in child care and shows oneself being-with when needs the help of others.

Learning to take care

This way of seeking from the being reveals curiosity. In seeking the new, they do not always understand what they are doing in the occupation. The family-caregiver-being stands in search of the new, "provides knowledge to simply become conscious"^11:237.

In the maintenance of the occupation there are the family-caregiver-being and also the child, when they reveal that, over time, the child learns that they have to take the medication. The child participates in their own care when they remember, request or take the medication alone, so they do not get sick. Caregivers state that the participation of the child and the acceptance of the treatment make the experience of taking care easy.

This easiness "ensures that everything is put in order and that all doors are open"^11:243. The family-caregiver-being keeps busy with the treatment and the other types of care with the child; with this, they express the pretension of easiness, of possessing or reaching everything: here this would be the positive effect of the treatment, of not getting sick. Thus, the child has a normal life, which maintains them in the public interpretation of the impersonal. "This comparison of themselves with everything, calm and all-embracing moves the presence into an alienation in which one's power to be more oneself is covered"^11:243.

Fear of prejudice

The family member hides the diagnosis from the child because they think the child needs to achieve maturity to understand his or her illness. They do not consider it right to hide and intend to make the revelation at the right time. They reveal the diagnosis to a restricted number of people, almost always close relatives who are involved in the care. They do not tell other people not to expose the child. They feel fear of suffering prejudice if others discover the diagnosis and the child gets angry when discovering their serological condition. They have to pay more attention to the child than to themselves (UM4).

I have this fear because people do not understand it very much [AIDS] [...] I am afraid that he [child] does not want to do it anymore [treatment when he discovers the diagnosis] [...] I am afraid of him getting angry [...] the only difficulty is when it comes time to tell him [...] he does not ask, sometimes I think he is so intelligent that he knows already that he has something, I do not know how he will react. (C5)

Thus, it is shown the feeling of fear that comes from a threat: the child discovering their diagnosis. Caregivers know that one day it will happen, but they do not know exactly when. They feel fear of when this will happen, even though they know they cannot prevent it. As a threat, the discovery of the diagnosis by the child and others is coming due to the child's growth and the approach of adolescence, which allows them to better understand their condition. When the child questions the reason for taking medication every day, they begin to understand what is put in their daily life and revelation comes next. The family-caregiver-being ends up hiding the child's diagnosis and remains silent. According to the author, "silence is a way of articulating speech where the one who silences wants to clarify, must 'have something to say'" ^11:377.

Faced with the possibility of the discovery of the diagnosis and the reaction that this may cause in the child and in others, the family-caregiver-being shows fear of prejudice. The fear of the child suffering prejudice is a mode of disposition with the other. "Being afraid instead of is to feel frightened". The being who is afraid in the place of another is struck by co-presence, of which one is afraid^11:201.

The family-caregiver-being has fears and doubts about how this can impact the child's life and does not know how the child and others will react. The child may be prejudiced by the disclosure of the diagnosis and this may happen suddenly. Thus, the caregiver remains fearful, which reinforces the occupation of the family-caregiver-being who has to have some care with the child who has HIV so that this child has a healthy life.

In this way of being, the caregiver stops taking care of themselves to dedicate themselves to the child. They stay busy with everyday life, losing themselves in the way of being of inauthenticity. The inauthenticity present in the daily caregiving leads the family-caregiver-being to do as others think it has to be done, not revealing themselves in their uniqueness. They abandon the care of themselves to be available to the child for what the child needs, because that is what everyone would do. This condition is in the way of being in impersonality. According to Heidegger, the impersonal which is not determined, but which everybody is, prescribes the way of being in the daily life of others¹¹.

The inauthentic and impersonal do not confer to the being a mode of judgment, negative conditions, but indicate how most of the times and almost always the being shows itself in the quotidian. Thus, one remains as everyone is and wants them to be, and does not reveal oneself as they are in their uniqueness. That leads them to the tranquility and the effort that the family-caregiver-being does to keep in the coexistence with the other.

CONCLUSION

This research presents the limitations of a qualitative study, contextualized in the place and time where it was developed. It does not intend to generalize the results, but to deepen the comprehensive analysis of the familiar routine in the care of the HIV-positive child in antiretroviral treatment.

Faced with the facticity of treatment, the family member needs attention from health professionals in addition to staying busy, with a routine to comply with the prescribed treatment, in order to understand why and how to do it. By knowing more about how to develop daily care, it points out a demand to the health services, in order to support the convergence between scientific knowledge and the appropriation of this knowledge in the day-to-day, in order to overcome the difficulties and to establish the therapeutic treatment. This indicates that the professional attention must be focused not only on the HIV-positive child, but on the family caregiver who experiences with them this daily care. Faced with fear of prejudice and concealment of diagnosis by relatives, the health service must implement the process of disclosure of the diagnosis to the child according to the family's demands.

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