Diagnosis disclosure to children and adolescents living with HIV/AIDS: implications for the family caregiver
Maria da Graça Corso da MottaI; Aline Cammarano RibeiroII; Helena Becker IssiIII; Paula Manoela Batista PolettoIV; Eva Neri Rubim PedroV; Neiva Isabel Raffo WachholzVI
Nurse. PhD in Nursing. Professor at the Federal University of Rio Grande do
Sul. Porto Alegre, Rio Grande do Sul, Brazil. Email: email@example.com
II Nurse. PhD in Nursing. Professor at the Federal University of Santa Maria. Palmeira das Missões Campus. Rio Grande do Sul, Brazil. Email: firstname.lastname@example.org
III Nurse. PhD in Nursing. Professor at the Federal University of Rio Grande do Sul. Porto Alegre, Rio Grande do Sul, Brazil. Email: email@example.com
IV Nurse. PhD Student in Nursing. Federal University of Rio Grande do Sul. Porto Alegre, Rio Grande do Sul, Brazil. Email: firstname.lastname@example.org
V Nurse. PhD in education. Professor at the Federal University of Rio Grande do Sul. Porto Alegre, Rio Grande do Sul, Brazil. Email: email@example.com
VI Nurse. Master in Epidemiology. Health Department of Porto Alegre. Health Surveillance of Porto Alegre. Rio Grande do Sul, Brazil. Email: firstname.lastname@example.org
Objective: to unveil family members'/care givers' perceptions of the diagnosis Human Immunodeficiency Virus infection and Acquired Immunodeficiency Syndrome (HIV/AIDS) revealed to children/adolescents living with the infection. Method: using a qualitative method derived from the Sensitive Creative Method, 12 family members/care takers were studied from 2006 to 2010, with approval from the Research Ethics Committee of the following institutions under numbers: 25446, Rio Grande do Sul Federal University (Sanatório Partenon relied on approval from this institution); 23081.017341/206-61, Santa Maria Federal University; 001014268.07.8, Porto Alegre Municipal Health Department; 07-238, Hospital de Clínicas de Porto Alegre; 113/08, Conceição Hospital Group. Results: the thematic analysis revealed the theme Disclosure of the diagnosis and the subthemes: Doubts; Discomforts; Acceptance or revolt; and Seeking professional support. Conclusion: sensitive, understanding care is needed for health professionals to be attentive to the particularities affecting children and adolescents and their family members on revelation of the diagnosis and treatment.
Keywords: Adolescent health; child health; acquired immunodeficiency syndrome; family.
This study is part of the Multicenter research project entitled Impact of adherence to antiretroviral treatment in children and adolescents in the context of family, children and adolescents in the cities of Porto Alegre and Santa Maria/RS. The project had financial support of the National Program of sexually transmitted diseases and Acquired immunodeficiency syndrome (STD/AIDS) of the Ministry of Health and the United Nations Organisation for Science, Education and Culture. The municipalities where the survey was carried out have a significant rate of case of AIDS 1 and are reference centers for the care of STD and AIDS in the regional vicinity.
In this context, involving infection with the Human Immunodeficiency Virus and Acquired Immunodeficiency Syndrome (HIV/AIDS), the disclosure of the diagnosis is important, as this has a direct effect on the clinical, psychosocial and existential dimensions of children, adolescents and their family members/caregivers. Furthermore, there is a need, according to some research studies, for actions throughout the whole process of disclosing the diagnosis2-5. Children and adolescents with HIV/AIDS experience the disclosure of their situation at some point in life. This information may be given by the mother, grandmother, the father, at home or in the health service with a professional when the challenges related to the disease start or when they discover by themselves while seing the medical records. However, regardless of how the revelation happens, in most of the times it is the family member/caregiver who assists and guides the child and adolescent to accept the disease, and this has a reflection on the continuity of the treatment2-5.
From the foregoing, it is considered appropriate to expand and further studies on this subject, because the disclosure of diagnosis is a time fraught with particularities and can directly influence the way children and teenagers will live their lives. Moreover, it is a concern for those who provide care. The disclosure may cause family conflicts and generate discomforts; it may trigger the coping process with the disease, health care measures, but also conflicts within oneself, what will depend on how the disclosure of the diagnosis happens4.
The present research was developed in two phases: quantitative and qualitative. Here, we present a sub-analysis of the qualitative phase aimed at revealing the perception that the family member/caregiver has in relation to the disclosure of the diagnosis of HIV/AIDS for children and adolescents living with the infection. The following question guided the sub-analysis: What is involved in the disclosure of the diagnosis in the opinion of the family member/caregiver of children and adolescents living with HIV/AIDS? It is noteworthy that the results of this research will contribute to the development of a care centered in children, adolescents and in the family member/caregiver, contributing to a less traumatic disclosure of diagnosis for all parties involved, towards the promotion of health and life.
In the scenario of HIV/AIDS, there are concerns about the care provided to children and adolescents who experience the stages of growth and development and also the peculiarities of the disease. In this world of care is inserted the family, which is involved in some way in the daily lives of these children and adolescents6.7. Some important issues in the lives of families are: adherence to treatment, child nutrition, family life, social inclusion, discrimination, transition from childhood to adolescence and the disclosure of the diagnosis8,9.
The revelation of the diagnosis is a turning point with regard to adherence to treatment. Acceptance from the child or adolescent's part is important. It is the family who reveals the diagnosis in most of the cases as it is with the family that children and adolescents maintain a bond and put their trust, making that the moment less traumatic. However, it is almost always a difficult moment in the life of the family member/caregiver, especially when the infection occurred through vertical transmission and the mother is the caregiver, because she blames herself because her child acquired the virus.
Disclosure of the diagnosis of HIV/AIDS acquired through vertical transmission should be treated as a process; the communication of the diagnosis to the pediatric population should be made individually, in a procedural manner and with the participation of parents and/or guardians. It is important to value, in the approach, the particularities of each child and adolescent, and their social and family context.
The current situation shows a challenging scenario for health services, as there are many people who have acquired the virus through vertical transmission. These reach adolescence without full information about their situation regarding HIV infection10. The disclosure of the diagnosis to children or adolescents is a major challenge for the family, because the disease add to stigmas and prejudices. This causes fear to the family, fear of exposing the child to society, and this pushes towards silence in the social space.
The family member/caregiver, therefore, is critical in the process of diclosing the diagnosis. This is because, often, it is the family member/caregiver who decides how and when this revelation will occur, and it is the person who supports, protects and cares for the child and adolescent. Thus, there is a clear complexity in this practice. This should be developed in a unique way, because each person has a life story, with its potential and individual and contextual weaknesses. The health service is considered a support network of family members/caregivers to the process of disclosing the diagnosis. The triad of trust and dialogue between family-child/adolescent-health professional is important9.
This research is qualitative, using Dynamics of Creativity and Sensibility (DCS) based on Creative and Sensible Method (CSM) in its implementation 11. The field research stages were developed in specialized services for STD/AIDS in the city of Porto Alegre and Santa Maria, RS.
Study participants were 12 family members/caregivers aged between 16 and 80 years, which included great-grandfathers, biological mothers, adoptive mothers, sisters and grandmothers. Inclusion criteria were family members/caregivers of children up to 12 years of age and adolescents between 13 and 19 years of age, according to the Department STD/AIDS and Viral Hepatitis of the Ministry of Health, with diagnosis of AIDS and undergoing treatment with antiretroviral (ARV) for at least three months because children or adolescents, in this point, are already experiencing daily drug therapy.
Participants were contacted in the first stage of the research, the quantitative phase, which was held in moments that before or after the medical consultation in the health service, which occurred in the period between 2006 and 2010. At that stage, they were asked if they had interest to participate in the second stage, and it was explained to them how that second stage would be developed. All who said to be interested were invited, and a single time was agreed to perform the dynamic. For ethical reasons, the names of participants were replaced by the letter R (respondent) and received a number corresponding to the order of participation in the dynamics.
The procedure used for collection of information was the development of Dynamics of Creativity and Sensitivity (DCS) proposed by the Creative and Sensible Method, which is divided into five moments11: the first refers to the presentation of each group member and the integration between participants and researcher. The second includes the provision of materials for use in the dynamics. In the third moment, participants present their individual or collective artistic productions, mediated through dialogue. In the fourth moment, the generative themes are decoded in sub-themes during the group discussion. Finally, in the fifth moment, the thematic synthesis of topics and subtopics and validation of data takes place.
Two dynamics were developed: Speaker Map and Free to Create. The dynamic Speaker Map is the production of a map drawn by participants in order to demonstrate their networks of relationships with the community. The dynamic Free to Create consists in offering different play materials, allowing the free artistic creation to production of qualitative data in order to answer the questions generating the debate. The study was approved by the Research Ethics Committees (CEP) of the institutions involved in the development of the research. Furthermore, the principles of Resolution 196/96 were respected, which was in force at the time of conducting the present survey, and were formalized through a Informed Consent (IC)12.
The analysis resulted in the theme Disclosures of Diagnosis and the subthemes: Doubts, Discomforts, Acceptance or revolt and Seeking professional support13. The analysis resulted in the theme Disclosures of Diagnosis and the subthemes: Doubts, Discomforts, Acceptance or revolt and Seeking professional support.
RESULTS AND DISCUSSION
The family's decision to disclose the diagnosis of AIDS for the child or adolescent is a major challenge, and this can be addressed with the support of health professionals.
In this research, the disclosure of the diagnosis was described by family caregivers differently, permeated by doubts: when and how to tell.
You know, when I told him he was eight. He thought he had cancer: oh no Mom! Will I lose my hair? This [...] was also a difficulty that I had, to make him understand the difference between a cancer and AIDS (R1).
I explained what it was because I needed to take medication [...] he realized that his mom had the virus and he got it from the mother (R3).
I had told him ( father) when (name of the child/adolescent ) starts to question, you will have to tell her why, because we got it (R4).
In a study on the perspective of adolescents living with AIDS, the perception of the disease occurs from the moment they receive information related to the modes of transmission of HIV, viral load tests and CD4. The reports show that the revelation can be driven by different people and circumstances present in the life of the adolescent14.
From the clues that children and adolescents reveal in their conversations the day-to-day, at home, it is clear that the daily drug therapy introduces the need to take medicine. With that comes the need to tell them about the disease, because the child and the adolescent wants to know what is going on.
She is at that stage that she wants to know when she will stop taking the medicine? I used to say that she had anemia? But she asks for how long she will have to take the medicine: Will I never stop taking this medicine, mom? (R11)
She asked: dad, why is the doctor giving me these medicines? Her father said: this is because you have a little living thing in the blood and it is only with this drug [...] that this thing will not advance further[...] she said: but what do these little things do? Oh, they can even kill you. No, but I do not want to die, she told him: I want to stay with you and she said: but how is the name of this disease? [...] he said it was HIV (R4).
The above mentioned reports describe the moment of disclosure, representing the nuances that permeate this moment: the need to reveal the form of transmission, exposing possible family conflicts that can cause discomfort. Considering that AIDS is a multigenerational disease and, often, the whole family is a carrier of the virus, secrets such as adoption, bisexuality, drug use, among others, may come up and cause strong impact15-17 .
In this context, unease feelings, hard to deal with, appear and can generate feelings of helplessness, sadness and fear. Thus, before the child or adolescent questions, family members feel insecure at the time of revelation:
There is a difference in the case of (name of child/adolescent) , he learned very early, he was four years old when he learned, it is a matter of life philosophy [...] (R5)
Then I sat on the couch and explained him everything [...] You know that you are my adopted son and your mother had this disease, she died from this disease [...] but it will not kill you. [...] he said 'kill' (R3).
..to know what we were talking about here (during the service), how it was, how it was not, what we said, what the doctor said, all she wants to know. And I tell her all. (R10)
When the child learns the AIDS diagnosis in early childhood, family members say she learned early on the issues that pervade their HIV status. This different situation shows that the issues that permeate the disclosure of diagnosis - fear, anxiety, shame, guilt - become less relevant when the child learns the situation as early as possible.
It is believed, therefore, that the dialogue should mediate the relations not only between the family and the child or adolescent, but also with health professionals10.
Acceptance or revolt
For family members participating in this research, after the process of revealing the diagnosis, children and adolescents begin to present the post-disclosure behavior. From the perspective of family caregivers, at that moment, feelings of acceptance may appear, to take medication, or feelings of sadness and anger.
With him I never had a problem, but there is a fundamental difference in his stance, there is a kind of sadness, like, within him, you know? It is a responsibility [...] He assumed for fear, it was not for understanding, which is something that I work with him until today [...] he is really afraid of dying and not only afraid of his death, but also my death (R5).
That's where he began to take it like a joke. Until then, he took medicines very correctly, but then when he learned that he would need to take it forever, was then that he began to say: I don't want it, I take it later [...] it was where he start becoming difficult [...] I saw this as a revolt (R1).
AIDS-related stigma and prejudice perpetuate the silence on the matter in the child's and adolescents' family. This silence can lead the child and adolescent to difficulties in carrying out their treatment by limiting their support networks and their ability to become protagonists of their health care18.
The disclosure of HIV infection becomes, in most cases, a milestone in people's lives5,7 and this moment triggers the construction of a new history and identity. These issues are related to patterns of diagnosis disclosure, especially for teenagers, and also for those who grew up with HIV infection by vertical transmission.
Seeking professional support
Health professionals have as raw material for exercising their profession the man himself and all his existential peculiarity. It is, therefore, necessary to be available to the other, not seeking to foresee or even pre-conceptualize his needs19. So, there is a need for involvement of health professionals who care for children and adolescents, allowing space for family and promoting dialogue in order to strengthen their well-being with their health18.
This is because the moment of revelation may generate the need for the family to seek the support of professionals.
I tell the doctor (name of the doctor in service) and she said this: No, you have to say, then, that she has a virus that [...] you will not be lying [...] but she wants to know which virus is this? And, I do not know to do it, like, you know? Come and tell her (R11).
Children and adolescents infected with HIV have the right to know their diagnosis, regardless of the form of transmission. Proper and planned revelation of the diagnosis, in a gradual and continuous form, can favor the adaptation and development of autonomy to address the health condition20.
It was noted, finally, that the study carried out here with the purpose of describing the process of disclosing the diagnosis of HIV infection in the context of serological counseling, from the user version, showed the importance of the listening space, creating possibilities for users to speak of their concerns, receiving support to deal with psychological distress, overcome difficulties to share the news with family and partners and resolve doubts about STDs and HIV prevention4. From this perspective, we highlight that the issue of disclosure of the diagnosis should be a priority in the health care of children and adolescents living with HIV/AIDS5,7. The disclosure allows the organization and planning of treatment, facilitating a clear dialogue between professionals, family and child or adolescent10.
On the subject of disclosure of diagnosis, some implications that the family member/caregiver identifies were discussed expressed, in the subthemes: Doubts, Discomforts, Acceptance or revolt and Seeking professional support.
The perception of the family member/caregiver in relation to the disclosure of diagnosis of HIV/AIDS for children and adolescents who have the infection triggered some implications on the quality of treatment. The family's decision to disclose the diagnosis of AIDS to children/adolescents is a major challenge and was described by family members/caregivers in different ways, with doubts on when and how to tell the news always present. According to the perception of the family, the moment identified as one of the most appropriate is when children and adolescents ask questions about it. Another aspect that can make a difference in this case is the age of the child or the adolescent at the time of revelation. There are many facets that involve children and adolescents when they learn and understand their diagnosis and treatment. This reinforces the need for sensible and understandable care, so that health professionals give attention to the particularities involving children, adolescents and their families, thus promoting genuine care, and that health policies turn towards the meanings and senses attributed by people who experience and live with this diagnosis.
Disclosure of the diagnosis is a process that occurs involving children and adolescents, their families and health professionals. This study addressed the perception of family members/caregivers, but it is necessary to carry out further studies on the perspective of all involved. It is also important to give voice to children and adolescents in the process in order to encourage them to carry out their role as protagonists of their own health care.
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