Management of nursing care of the adolescent living with HIV/AIDS

Objective: To characterize the management of nursing care for adolescents living with HIV/AIDS through vertical transmission, front transition of care process in Referral Services in the Treatment of HIV/AIDS (children and adults) in a state in southern Brazil, proposing strategies for the transition of this service. Methods: This is a qualitative, exploratory and descriptive research in which data was collected through participant observation and semi-structured individual interviews, which were analyzed and interpreted on Bardin. Results: From the analysis of the data, three categories emerged, which highlighted the challenges in managing care, the fledgling involvement of nurses and the strategies to be used in the transition of adolescents. Conclusion: The study reveals the importance of nurses in this process, with active participation in the planning, management and implementation in their skills.


INTRODUCTION
The care management is a complement to the labor process of nurses.Care should be managed within institutions with rationality and sensitivity, surpassing technicist principles.It aims to promote a creativity and an autonomy of nurses and it is the basis for the nursing actions to bring about changes in the management process and in the models of care 1 .
The care management should focus on the needs of human beings involved in caring relationships, and helping them to promote and preserve life in the face of feelings of comfort and discomfort, in the hope of new moments and living in situations that change constantly 2 .
In the setting of AIDS, the epidemic's beginning was marked by the pursuit of ensuring a positive outcome for children living with the disease, and not properly directed at improving the quality of life.Today, different from the initial scenario of the epidemic of HIV in the country, a large number of children infected by vertical transmission reaches adolescence and adulthood from the use of antiretroviral therapy (ART) 3 .Yet despite the availability of therapy, treatment still presents a major challenge especially to teenagers, and even with the promise of better quality of life, social, vocational and emotional rehabilitation, there is a resistance to treatment adherence 4 .
The World Health Organization (WHO) defines adolescence the period from 10 to 19 years old, this period marked by turmoil, challenges and risk behaviors 5 .In this context, some clashes in continuity of medical treatment become relevant in the care of adolescents living with HIV/AIDS, as the transition from children's health service for the adults' health service 6 .This change does not only involve the breaking of monitoring a service, but it involves the ability to adapt to new situations experienced by these adolescents.Yet the reality of adolescents living with HIV/AIDS is little known by health professionals, and the care of adolescents is revealed by the literature as a current challenge in health care, which highlights the need for professionals and services prepared to meet this clientele 5 .
In this sense the following question arise: How management of nursing care for adolescents living with HIV/AIDS through vertical transmission happens, front the transition process between the referral services for HIV/AIDS in children and adults?What strategies can be proposed for the transition of care?
The objective of this study was to characterize the management of nursing care for adolescent living with HIV/AIDS through vertical transmission, front transition of care process in Referral Services in the Treatment of HIV/AIDS (children and adults) in a State on southern Brazil, proposing strategies for the transition of this service from the analysis of the actions performed by nurses and perceptions of other health professionals.

METHOD
Qualitative, participant, exploratory and descriptive study, conducted in two Services of State Referral (children and adults), in-patient and day hospital services.Data collection was conducted from March to June 2012, through participant observation followed by semi-structured individual interviews, using digital voice recording to record the speeches.
Participants were nurses and professionals of multidisciplinary team directly involved in the care and study/monitoring of adolescents living with HIV/AIDS through vertical transmission in Referral Services (adults and children), totaling 10 participants: five nurses, two of these being nursing managers, identified by the letter "N" followed by the ordinal number corresponding to the order of the interview (N1, N2...), and five other health professionals: one psychologist, one social worker, two infectious disease doctors and one nurse technician, identified by the letter "P" followed by the ordinal number corresponding to the order of the interview (P1, P2...), this way ensuring the anonymity of participants.
The interviews were given by participants after explanation of the purpose of the study and signing the informed consent form.We sought to understand through the interviews how the nurses comprise and develop care management to adolescents living with HIV/AIDS through vertical transmission, and the perception of the multidisciplinary team in relation to developed/experienced actions by nurses in the transition process of adolescents in order to propose strategies for the transition of this service.
Data were analyzed and interpreted using the method of content analysis proposed by Bardin 7 .Thus, the material collected was coded, categorized and interpreted, and categories and subcategories emerged.

RESULTS
Analysis of the data revealed three categories with their respective subcategories, which are presented in Figure 1: Category 1 "Revealing the challenges for care management to teenagers with HIV/AIDS through vertical transmission" features two subcategories: 1.1."Introducing the particularities of care to adolescents with HIV/AIDS through vertical transmission" which recounts the specifics of "being" a teenager.This stage is considered a phase of doubts, questions, conflicts, insecurity, discoveries and changes, physical and psychological, which directly interferes in the continuity of care, which is characterized by the teenager's decision-making.Thus, it is realized the concern of professionals Management of nursing care of the adolescent Koerich C, Santos FC, Meirelles BHS, Erdmann AL in relation to treatment adherence and sexuality, considering that in addition to having to live with their own issues of adolescence, these teenagers need to understand their health condition because they have a chronic stigmatized disease, permeated by prejudices and that requires self-care, as the statements below elucidate: There are adolescents who receive treatment, they have always received treatment, and they suddenly arrive at that stage and decide not to receive [drugs] anymore [...] (N1).

[...] because it is a difficult stage of life, new things happen, some teenagers get angry [...] there is the whole issue of sexuality, the body that changes [...] (N4).
Faced with such particularities, bonding with the teenager was cited as a delicate and slow process, which is often related to the history of teenager's life permeated by affective losses related to the disease and socioeconomic status.In this context, the link is considered essential for care management, involving trust, intimacy, empathy and affection.According to professionals, the adolescent needs a private space to talk about things he cannot share because of the secrecy that the disease demands, requiring a different approach, considering its uniqueness, focusing on strengthening the bond and development of affective ties, as found in speech: The social reality that these adolescents experience, as a result of a stigmatized disease, related to impoverishment, marginalization and social vulnerability, is considered one of the main difficulties for managing care.According to reports, the teenager with HIV/AIDS is in general an orphan, who lives with a family breakdown and presents difficulties to reference a caregiver.These issues influence adherence and continuity of care, as evidenced by the testimony: [...] They already have a whole family sometimes unstructured.So, the very adherence to treatment is also complicated, so they are completely unstructured in social [...] it does not help when sometimes the doctor comes here and writes the prescription, there is a whole reality that transcends all this situation, and sometimes we have a limit until where we can intervene and act, and it is hard to face that you reached your limit [.

..] (P1).
Another relevant issue is the diagnostic revelation.According to the professionals, knowing the diagnosis is a right of adolescents, however, the revelation of the diagnosis is a challenge, considering the resistance many parents present, reflecting the blame for the transmission of the virus to the child.Professionals seek to encourage the family to disclose the diagnosis and advocate a transparent relationship between family members so that the teenager is aware of his illness and thus can actively participate in his treatment, as illustrated by the statements below:

[...] what worry us most is about his right to know about the disease he has, the health problem he has, which he has to know the name. Because this is not a cool thing, they take medicine and do not really know what it is! (P3). [...] then we talk with families so that they can talk about it [the diagnosis] and also, after the moment of revelation itself, many families ask us to participate along [...] but unfortunately many families are extending this moment too much [...] (P3).
The subcategory 1.2."Facing interpersonal conflicts within the health team" reveals the presence of conflicts within the health team, which reflects the management of care to adolescents with HIV/AIDS through vertical transmission.Professionals discuss the centralization of care on the physicians, who aiming to preserve the teenager and maintain the confidentiality in the diagnosis avoids the multidisciplinary care or referral.The situation reveals that relations between members of the multidisciplinary team need to be addressed in order to foster greater interaction, discussion and search for alternatives to the service, as the following statement:

We have been changing this issue of the adolescent [service], because it is urgent [...] but it is very difficult to touch upon the AIDS issue within the clinic. It is a very covert, closed, subject, doctors keep this very hidden. When doctors open it, we can work, and the patient is the one who wind (N3).
The feelings revealed by the nurses in relation to the profession also appear as an obstacle in their relationship with other professionals in the health care team and their role as care managers of adolescents with HIV/AIDS through vertical transmission.The feeling of unpreparedness in relation to the HIV topic, as well as inferiority and professional devaluation trigger feelings of frustration and discontent with work interfering with the production of new models of care to this specific audience.This fact appears in the speech: I regret having studied nursing; I should have studied something else.We are very undervalued, we have to get our hands dirty, if you do not do this, you are not good enough (N1).
The category 2 "Acting with the families and adolescents with HIV/AIDS through vertical transmission" presented two subcategories: 2.1."Developing actions with the families and adolescents with HIV/AIDS through vertical transmission" reveals that in the children's reference desk the nurse serves adolescents with HIV/AIDS through vertical transmission when requested by the doctor or when he realizes the need on review of medical charts and examinations.However, there was not a plan of work process.
The nursing consultations in child service generally occur accompanied by psychologist and social worker.Active search for missing patients and families approach about the diagnostic disclosure to adolescents are still held.The role of a nurse in the children's service is favored by the formation of a multidisciplinary team to support him.Despite the need to work on issues of interpersonal relationships as previously mentioned, the team seeks to contemplate the needs of the adolescent and family in their many dimensions.As found in the speech:

[...] many doctors ask the social worker, as well as the psychologist and the nurse to talk to the patient [...] we do it [consultation] together because sometimes the same patient has social problem, psychological problem and adhesion problem [...] (N1).
Management of nursing care of the adolescent Koerich C, Santos FC, Meirelles BHS, Erdmann AL In the adult referral service, unlike the child service, there is not a unique multidisciplinary team at the clinic, and nursing consultations, pre or post medical consultation, are being implemented.Even when compared to child service, this is a new service, with little structure.Professionals reinforce that among the duties of nurse, nursing consultations have great relevance to the management of care to adolescents with HIV/AIDS because it involves guidance on adherence to drug treatment and sexuality, seeking approximation to adolescents and making them responsible for treatment as the following testimony: It is important [the care of the nurse], I think it is important.Obviously, I have no doubt about it.We can handle most teenagers, but there are many who need not a pre consultation, but a post consultation in the sense of taking medications, working on adherence, clarifying the issues of sexuality and condom use (P2).
Both in the child and the adult services, health team believes that the nurse is an articulator of service and health care team.There is an expectation in relation to the work of the nurse as care and health practices manager in these scenarios.The statement follows:

[...] I see that nursing work has a great potential and from this the work of other professionals depends and could even subsidize the work of the doctor himself (P3).
The subcategory 2.2."Realizing the gaps in nurses' performance with the families and adolescents with HIV/AIDS through vertical transmission" reveals the gaps on performance to be occupied by the nurse during the transition process and care of adolescents in referral centers.It is especially noticed difficult to bond and nurses with little experience with the teenager who lives with HIV/AIDS.Sometimes the nurse seems to ignore its importance in this transition process of the adolescent, resulting in low visibility of the actions that he develops, as quoted:

[...] I cannot tell you what specific actions he [nurse] develops [...]
Because in fact he is another professional that stands there, waiting for the patient.The teenager does not make distinction, except for the doctor, this one he knows.So he does not make this distinction: that is a nurse, this is a nursing technician [...] (P5).
Both services, child and adult, were planned and implemented by medical professionals.The nurse imputes his little involvement in the transition process of teenager to not having participated in the planning and implementation of the service as well as to the high demand of the service and his other assignments, given the limited number of professionals working in referral centers.Here are the testimonials: We had a general clinic, involving children of different specialties.From the moment these children [with HIV] grew up and became teenagers, we [doctors] started to implement a specific clinic day for teens [...] (P5).I do not know if it is the amount of service that we have or due to interference of the service that is offered by the hospital [...] if we had more nurses we could divide the tasks and each one would do their part [...]

but this whole thing blended inside our heads is suffered [...] (N3).
From category 3 "Unveiling care strategies to adolescents with HIV/AIDS through vertical transmission facing the transition between child and adult referral services" emerged two subcategories: 3.1."Describing the process of transition of care between child and adult referral services" reveals that the transition of the adolescent living with HIV/AIDS among the referral services arose from the need to continue monitoring the treatment of adolescents after reaching the age limit to be served in the children's service, which is 15 years old.It is observed that there is a partnership between the services, which although composed specifically among physicians, ensures continuity in the care of adolescents, as testimonials show:

They come with a referral to the doctor. They are not forwarded to the nurses. A new patient arrives here for to us, without us [staff] having prior knowledge of the historical (N5).
In the adult referral service, the first medical consultation is scheduled via telephone by child service staff, when it is forwarded a summary of patient history to the referenced service.The transfer of services between child and adult health is crafted with the adolescent and his family during consultations with the multidisciplinary team in child service a little before discharge.
It is highlighted in the transition process the concern of child service in revealing the diagnosis of HIV/AIDS to adolescents before transference to the adult service, whereas in the adult service it is expected that the patient already knows about the disease, as elucidated the speeches: Management of nursing care of the adolescent Koerich C, Santos FC, Meirelles BHS, Erdmann AL

From the experience we have, the later revelation of the diagnosis is done, the more they suffer [...] When the child does not know the diagnosis, our job is to speak and prepare the family [...] (P4).
It should be noted that before there was the transfer process to adolescent between referral services, there were many treatment dropouts.Nowadays, there are only missing patients.However, considering the monitoring of adolescents by the child service staff since birth, some aspects contribute to sustain that the transition between services does not constitute an easy process; on the contrary, it is painful for both the health care team and to the teenager.
The "link" between the teenager and some professionals is often mentioned in the child service, this being the element that hinders service change and the disruption of emotional ties to some teens.The transfer results in the loss of reference to the service because the teen is taken to a service with unknown people, without any prior interaction with the new team, as cited by a participant:

I think for them it is a little hard this change of referential focus. I think there in the [child] service they have a reference person, and when they arrive here [adult service] they are treated as just one more in the crowd (N3).
Thus it emphasizes the lack of articulation between professionals on referral services, whereas the interaction between services is restricted to medical staff.As well as the lack of preparation and proper approach in the adult reference service to welcome these adolescents.
In subcategory 3.2."Proposing transition strategies and care to adolescents with HIV/AIDS through vertical transmission in referral services" it was observed that the central issue of the proposed actions to improve the transfer of the adolescent process refers to the planning and management of nursing service and care.This aspect is considered the main axis for possible changes.The participation of nurses in planning referral service is suggested by different professionals.The testimony of one of them is:

So I think the nurse should be the person aware of everything that goes into a unit, because he is the manager. Just like in a house, a mother, a housewife should know what is happening, the same way the nurse should do in the unit he manages (P4).
However the respondents indicate that the nurse must know the service, keep updated, be willing and interested to work with this population, besides being detached from stigmas, prejudices and judgments in relation to HIV/AIDS:

There is still much prejudice, unfortunately. So when we invite a nurse to work in the hospital day, she already gets frightened, no longer likes the idea, because it already has that mark (N5).
It is noteworthy the proposal of communication between nurses of child and adult services in order to exchange information about the history of the adolescent and meet him before the transfer, contributing to a more humane transition, in which the adolescent is no longer a stranger to get to the adult service, as shown below: I think we should implement continuity, a contact before these people leave the child service and come to us.For they to know the group, the team who will serve them.To wean off this team and begin to insert into another (N2).
Still, as for the role of a nurse, it is proposed that the adolescent is addressed in pre or post nursing consultation in order to give attention to issues of treatment adherence, adolescent's accountability for their health and disease process and issues involving sexuality, and increasing the possibility of creating a bond, as quoted:

I think the teenager has to have a space that is not only doctor-patient, but as a friend, to talk things he does not talk to anyone. To talk about sex, condom, that he does not like to take medicine. I think this made me realize the importance of nurses (N3).
As for the multidisciplinary team, it was perceived its relevance and importance for monitoring and continuity of care to adolescent health.The team demonstrated ability to contemplate the health-disease process of adolescent and understand the importance of teamwork for a comprehensive approach, although they still do not work in an interdisciplinary way, as the speech of one of the professionals demonstrates:

So, teamwork means to me that each professional can contribute, then we exchange about the case. So you do not see it only in parts. For me, nowadays, it is the best way to work, it is to work in an interdisciplinary team [...] performing a comprehensive care, looking at the human being as a whole being (P1).
The home care for adolescent performed by the nurse of child service is cited as a support alternative during the process of adaptation to adult service in order to avoid sharp break with the service.It would be a way to facilitate the transition from teenagers, Management of nursing care of the adolescent Koerich C, Santos FC, Meirelles BHS, Erdmann AL to make it less painful, and allows its monitoring after transfer, avoiding treatment abandonment, as illustrated on the speech:

He [teenager] would be transferred, but the nurse would accompany at household level, even if he still were not in our service [adult] [...] (N5).
Some strategies such as planning care, possessing knowledge and initiative within the team and service, abandoning prejudices, fostering communication between child and adult referral services, performing home care and nursing consultations and partnering with the multidisciplinary team are part of care management to teenagers living with HIV/AIDS through vertical transmission and may favor the monitoring and transition between child and adult referral services, providing a smoother experience for the teenager and his family.

DISCUSSION
In the face of increased life expectancy, chronicity of AIDS and the need for continuous monitoring, the transition of adolescents with HIV/AIDS through vertical transmission from the child to adult health service is inevitable, bringing concern to professionals accompanying this audience and a challenge for nurses to care management of the adolescent "being" living with HIV/AIDS.
The teenager living with HIV/AIDS takes an approach common to all teenagers in the way of acting, experiencing doubts, questions, conflicts, insecurities, discoveries and changes that permeate the stage of adolescence, yet living with a chronic stigmatized disease is a daily reality which requires secrecy and care demands for the teenager and his family 8 .
The social reality in which most adolescents with HIV/AIDS live, such as orphanage, family breakdown and consequent difficulty to reference a caregiver and forming bond is revealed by the literature, which linked to unfavorable socio-economic situation forwards the adolescent to limited perspectives of future, which have direct and indirect impact to failures and low rate of compliance with the treatment 9 .Taking treatment brings stigmatized reminder of the disease, in addition to the negative aspects of side effects and multiple medications regimes 4 .
In this sense, the transition from child to adult health services has been characterized by a phase of treatment dropout favored by ignorance or later knowledge regarding the diagnosis and consequently on HIV/AIDS, making the transition process surrounded by adopting decreased protective practices and behaviors and elements of vulnerability 9 corroborating the results of this study.
Different factors during the transition process interfere with the teenager's acceptance of this process of change, such as the adolescent's ability to adapt, resistance to discontinue treatment with the team that has accompanied him and starting another relationship in health care with a new team professional, still the revelation of early diagnosis and the family engagement and transition planning from child to adult health services, so the combination of these factors provide favorable or unfavorable conditions to the adolescent who experiences the health care transition 5 .
Disclosure of the diagnosis to the teenager shows up a delicate process and surrounded by fears.According to studies, the relationship of fear for disclosure of diagnosis is related to the possibility of negative changes in family and the caregivers' insecurity about the possibility of breach of secrecy that surrounds HIV.The feeling of guilty for virus transmission to the son is still one of the reasons that motivates the families to postpone the disclosure of the condition to teenager 10 .
In this context, as something natural among youth and adolescents, sexuality complains, and an approach towards prevention and protection in which they can participate as conscious subjects of the disease is required.The basic needs of these individuals should be considered as part of the quest for comprehensive health and quality of life 10 .
Thus, there is a need for a space designed to receive this clientele, with a different approach, where the adolescent has the chance to discuss his needs and exchange experiences, participating as a conscious subject and protagonist of the process of health/illness, with focus attention on the overall health and quality of life and not in treating the infection itself, focused on the biomedical model 10,11 .
The presence of conflicts within the healthcare team and shared by nurses in relation to the profession feelings appear to be obstacles to the care management for this patient, reflecting on the care of adolescents and on multidisciplinary team itself, which reveals need for more effective communication, an appropriate division of roles within the healthcare team and understanding the role of each in the care of adolescents 12 .In this sense it is necessary that the nurse has clarity of his identity and realizes the need for transformation in his professional practice, putting his expertise at the service of the adolescent and his family and being prepared to receive it.
It is perceived weak bond established between the nurse and the adolescent and his family, which may be related to nurses' incipient participation in discussions to build the transition process of adolescent in services, characterizing the confrontation of devaluation and invisibility of nursing performance against the strong biomedical model still present in some services, which is visible particularly in the hospital setting, due to disorganization, confusion of roles, casualization of teaching, and dissatisfaction with veteran professionals' posture in relation to these issues, which may cause low professional self-esteem and chronic identity crisis, preventing the expansion of these professionals while maintaining their negative representations 12 .
Management of nursing care of the adolescent Koerich C, Santos FC, Meirelles BHS, Erdmann AL In the scenario of referral institutions, nursing consultation is pointed out as a necessity by health professionals and understood by nurses themselves as important for the care and monitoring of the adolescent.The nursing consultation is one of the activities of the nurse with legal support from the Federal Board of Nursing since 1986, which can be complemented by an interdisciplinary team 13 .It enables the professionals to act directly and indirectly with the patient and his family to develop their professional autonomy, exchanging knowledge, strengthening ties and creating a space for adolescents to be recognized, without judgments or demands, where they can tell their story and create new ways of thinking 14 .
International studies argue that the transition from teenager to adult health services varies with each state and health service, but the general recommendation for this process to happen is around the age of 15 to 22 years old 6 .Thus, conducting a planned, smooth transition, without disruptions arises as a possibility of change and transformation in the transition of the teenager, in order to ensure a successful outcome.The link between teams of adult and child services, especially nurses, is important to the construction of this process.Still, it is proposed the of nurses in the transition process of adolescent, being considered the most competent person to plan the transition and prepare the team to welcome the teenager in the service 5 .
It also pointed out the importance of home care to adolescents during the period of adaptation to the adult service.It is estimated that the contact maintained during this period favors the adolescent's adaptation to the new team, considering that the combined monitoring of services offers a supportive environment for adolescents who are not yet ready for the transition 5 .Furthermore, it is important for nurses to meet the people that make up the circle of adolescent's relationships, potential caregivers and members of the informal support network.These people must be prepared to live with the HIV-positive member, for the treatment and frequent contact with staff 15 .
In short, the care management process is complementary to the work of nurses, who need to realize that care is a focus that can be managed, incorporating knowledge and rational and sensible attitudes.It is considered the clearest expression of good nursing practice, in which there is a link between the management and care dimensions to understand the needs of patient care, nursing staff and institution 16 .
Before this context, it is essential to emphasize leadership as a management tool in the process of nursing work, being the foundation for the practice of conscious care 17 .It is the nurse's role to develop activities that seek to improve professional practice and improve the quality of life of people living with HIV/AIDS, understanding that nursing takes over as intermediary to consolidation care 18 .

CONCLUSION
The results of this study describe the performance of the nurse when dealing with family and adolescent living with HIV/AIDS through vertical transmission, considering the transition between child and adult health services.The results also present the challenges and strategies for management of nursing care to this particular audience.The care to adolescents in transition to adult care health services is an ongoing process, that still requires discussion, not only with regard to adolescents living with HIV/AIDS through vertical transmission, but also to other chronic conditions that, due to technological advances and biomedicine, extend from childhood to adulthood.
These results reveal the importance of greater involvement of nurses in monitoring and transition process, with active participation in the planning, management and execution of actions, within its competences.They also demonstrate the importance of the participation of the health team, with interdisciplinary approach, so that care to adolescents living with HIV/AIDS is based on a comprehensive care.
The study is limited to a specific scenario and to the perspectives of health professionals, highlighting the importance of new research that attempts to uncover the performance of nurses in other settings of care to adolescents with chronic, stigmatized conditions and consider the perspective of users of these services.
The study was approved by the Ethics Committee on Human Research of the Hospital Infantil Joana de Gusmão, under number 004/2012, and ethical aspects were respected at all stages of the research development, as stated in Resolution 196/96, updated by Resolution 466/12 of the National Health Council.

do not Management of nursing care of the adolescent
there are some patients with whom we do not manage to create link, and this is frustrating sometimes [...] I