WAYS OF COPING WITH AIDS: OPINION OF MOTHERS WITH HIV CHILDREN

O estudo teve como objetivo identificar as estratégias de enfrentamento, utilizadas por mães de crianças soropositivas, para melhor conviverem com a doença dos filhos. O método utilizado foi a pesquisa qualitativa descritiva. As falas foram retiradas de trinta e três entrevistas estruturadas com mulheres soropositivas voluntárias, inscritas no ambulatório de um hospital público de referência para o tratamento da AIDS em Natal, RN. Utilizou-se a técnica de análise de conteúdo, em especial, a temática. Da análise, emergiram categorias prevalentes em relação às formas de enfrentamento da AIDS, ou seja: superproteção e medo, doação, negação e subestimação do HIV, ocultação da doença, resignação, religião e esperança. Este estudo revelou que, apesar dos limites e barreiras impostas pela AIDS, os familiares desenvolvem estratégias que possibilitam enfrentar o cotidiano e conviver melhor com essa experiência.


INTRODUCTION
HIV/AIDS epidemic is a worldwide reality and it is one of the most serious public health problems.In Brazil, from the beginning of the 80's to 2006, 433,067 cases of AIDS have been reported by the Ministry of Health.Os this total, 142,138 refer to female adults, and 16,071 to children below 13.These results confirm the current situation of the epidemic in Brazil, characterized by "heterosexualization", "femininization", and increase in vertical transmission (1) .
With the increase in the number of cases of AIDS and the consequent increase in the risk of vertical transmission of HIV, an increased number of children and newly born are affected by this virus.
Although these figures are concerning, they do not reflect well the devastating effect of this disease in the life of seropositive people.We know that the HIV/AIDS diagnosis is an event of personal impact, and it is an event in the story of families and in their experience with the disease.Another important marker is the fact that AIDS imposes new habits such as: frequent visits to doctors, undergoing long treatment, medication intake, undergoing several examinations, difficulty in dealing with the disease, as well as changes in family life (2) .
Children with AIDS may experience extreme psychological suffering, since, in addition to limiting their everyday activities such as: playing, running, and expressing themselves because of the physical impairments caused by opportunistic diseases, they can also be overprotected or discriminated by people around them and those taking care of them (3) , especially mothers, since they have to coordinate treatment and everyday activities.
These mothers tend to face new challenges (4) such as: the diagnoses, the start and follow-up of school, adherence to a long-term complex treatment, the arrival of puberty and the start of sex life.
Living everyday with children with HIV makes mothers adapt to a new reality and develop coping strategies for managing stressors, for the physical, psychological and social welfare of children.
Research shows that the adaptation of families to seropositivity may be an important factor to determine the adaptation of children with HIV/AIDS (5) .Studies have shown that several families develop coping strategies geared to normalization, health maintenance, social insertion and improvement in quality of life of seropositive children (6) .The present study was conducted in this context, with the objective of identifying coping strategies used by mothers of seropositive children to live better with their children's disease.
The relevance of the research is justified because of the need for greater knowledge on the psychological and social aspects that affect this group of seropositive people to structure care models geared to mothers/care takers of HIV children for full and multidisciplinary attention in HIV/AIDS.into categories that came up from the speech of participants, following content analysis, especially, the thematic (7) .

METHODS
Results are presented and discussed considering the analysis of the interviews, with categories from the speeches listed according to questionnaires performed.

RESULTS AND DISSCUSSION
Coping strategies of mothers regarding HIV/AIDS According to the objectives of the present study, in this stage we will present some categories that enabled to understand some strategies used by and dying (8)(9)(10)(11) .
AIDS is the most recent representation of the evil of social imagination of the Western and appears in the public space as an announced death (12) .
AIDS is a fatal disease, it is a sentence of future death...I fear my child will die, I won't be able to stand it (Mônica).
Overprotection of mothers and greater dependence of children increase emotional and behavior problems.When children-mothers interaction is inappropriate, children present greater risks of delays and/or difficulties in development, and may present social, cognitive and linguistic limitations, and even negligence (13) .
-Total dedication By the way they behave regarding the feeling of total dedication, mothers showed some guilty because of the children's disease.However, it was observed that the condition of being seropositive is not highlighted as a concern.In their speech it was possible to see that priority is the care of their children's health, and to that end, they use all their potential, as indicated by the following statements:  For mothers, anti-retroviral medication is essential, and it was even the responsible for maintaining life, because without the medication, children would not survive.From then on, mothers give themselves totally to make children comply with treatment.
-Denial and Underestimation of HIV Because AIDS is a disease still associated with death, a way to survive with diagnoses of having HIV and coping with the disease is putting this condition on the background, not letting it take a great part in their lives (14) .Thinking excessively in AIDS was reported by interviews as a way to give in to the disease.Giving in to the disease is refused, through denial by some, and underestimation by others, trying to reestablish normality to cope and deal with the disease better.
On the speech of interviewees we could notice that they are aware that they have AIDS, that their children have the virus, however, they avoid coping with this reality, which in addition to being painful, imposes a new direction to their lives, as can be seen in the following statements: This denial may be an escape from reality, as an attempt of individuals to adjust to a new situation.
Thus, while this process occurs, people stop looking for help for their emotional and physical health, decreasing their support network.This is important because strategies that involve avoidance or denial of infection are described as most commonly associated with psychological distress and low indexes of quality of life (15)   .
When people discover they have an incurable disease, they experience several feelings that lead to conflicts, which are common and are part of the coping mechanisms for their insecurity.Usual feelings are: denial, anger, bargain, depression, isolation, and acceptance, and each individual experience these changes uniquely, with different sequence and intervals.Having AIDS is not only having an incurable disease, such as cancer, because in addition to the real spectrum of the disease, there is also a great social stigma (16) .
-Hiding the disease Not telling children they have the disease and not sharing their diagnoses with other people is a way of coping with AIDS, it is a way out of problems from a seropositive situation, as identified by this speech: Silence regarding the infection, in addition to preventing sharing it with other people who could help coping with the disease, hinders adherence to treatment both due to the difficulty in using medications in the presence of others, and to have to explain some procedures, such as not breastfeeding.This silence may be a way of coping with the disease .
This was mentioned by Patrícia: Those working with seropositive individuals, know that they hide bottles of anti -retroviral medication or change packs; they talk about their infection as it was another disease and search for help in distant cities with fear of being recognized.
The report described below confirms this situation: I have hope that one day I'll see the cure of the disease, to see my son cured, and then everything will be beautiful again, I'll smile again, and then, I forget the cruel reality of living with this disease (Jane).

FINAL CONSIDERATIONS
This study showed that, despite difficulties and limitations imposed by HIV/AIDS, by its treatment and uncertainty in the current situation, mothers with HIV children, develop strategies that enabled coping and living better with the disease.
It was seen that among the several strategies reported, the following stand out: overprotection and fear; total dedication; denial; and underestimation of HIV; hiding the disease; comparison of child with other seropositive children; religion and hope.
Overprotection is a behavior resulting from the fear of children suffering violence and of the risk of developing opportunistic infections; total dedication reflects a way of alleviating guilty of mothers because they consider themselves responsible for transmitting the disease to their children; denial did not withdraw people from searching resources and attention, however, it minimized the pain; hiding is a way of coping with prejudice; resignation enabled to compare one's child with other HIV positive children, thus relieving suffering; and religion and hope appeared as a source of support.
Reaction to seropositivity and strategies used by individuals seem to be important factors that need to be considered to foster health and quality of life of our patients.
Descriptive survey with a qualitative approach, developed in the outpatient clinic of the tertiary Hospital Giselda Trigueiro (HGT) a reference in the treatment of AIDS in the city of Natal-RN, Northeast Region in Brazil.Target population of the study was made up by HIV mothers with seropositive children seen at HGT.For inclusion in the study the following criteria were considered: a) voluntary participation; b) give informed consent; c) confirmed HIV medical diagnoses; d) being over 18; e) having at least one child with confirmed HIV diagnoses; f ) use HGT outpatient clinic and having a medical appointment on the day of interview.Exclusion factors were: a) not giving informed consent; b) mother with children below 18 months, with unconfirmed diagnoses and, c) mothers that, voluntarily, wanted to be away during collection.Interviews have been conducted with 33 young mothers with HIV children with ages ranging from 20 and 36 years old, and mean age was 28, predominant age group was from 26 to 30 (52%).Regarding schooling, a greater proportion of women had not finished elementary school, accounting for 67% of the interviewees; 21% of the participants had finished elementary school, and only 12% had incomplete high school.Predominant family income in the studied sample was one minimum wage (73% of the participants), and 27%, received up to 2 minimum wages.Prevalent form of transmission of the participants, according to them, was heterosexual transmission from a stable partner (88%).Twelve per cent of the women got the virus through the use of injection drugs.The greatest concentration of diagnoses occurred from 2000 to 2002 (28%).As a collection instrument, an interview script was used with structured questions, previously assessed by expert researchers on the issue, and validated through a pilot study.The project has been approved by the Ethical Research Committee of the Federal University of Rio Grande do Norte, under # 142/04.All mothers who accepted to take part in the research gave their informed consent, after they were explained about the objectives of the survey.To protect the identity of participants, fictional names of women have been used in the quotations of statements.A process of data collection was started between March and June 2005 with recorded interviews and, later, fully transcribed and grouped mothers of seropositive women to live better with their children's disease.Coming from the speech of mothers, according to guiding questionnaires, six categories are highlighted: overprotection and fear; disease; HIV denial and underestimation; hiding the disease; resignation; religion and hope.-Overprotection and fearWe have identified in the speech of mothers that the everyday life of seropositive mothers, frequently marked by the presence and risk of opportunistic infections, leads to a feeling of overprotection.In addition to that, there is also the fear of children suffering from violence because they are seropositive.The disease appears as a constant threaten and fear, not only fear of the disease and death, but also of the expected prejudice and the uncertainty regarding the future, made clear by this speech:Mothers of children with AIDS, we have to protect them all the time, because they get sick much more often (Paula).I protect my child too much, because I fear she will suffer some kind of violence because she has this disease (Isabel).I'm afraid my child will be abandoned, how will he face the world?What will become of him...He is completely dependent (Maria).Therefore, it was observed that mothers reacted with excessive concern, with phobic and controlling behavior, becoming overprotective with children, preventing them from taking part and cooperating in their treatment.The presence of overprotection and unsuitable behavior reinforce the thesis of inability of mothers in dealing with their children, due to feelings and beliefs related with AIDS.Concern of parents regarding uncertainty about the future of children, feeling guilty, and unsolved angry may determine an overprotective behavior.This same feeling, that shows excessive kindness and patience, was made clear in studies conducted with mothers of children with chronic diseases.Despite inevitable separation in some hospital situations, in the universe of seropositive people, there is permanently the fear of getting sick It was noticed in the mothers' statements that if they changed their routine, based on taking care of their children full time, they could deal with the children's disease better.This new routine takes up great part of the time of care mothers, they are either controlling the symptoms, dedicating to treatment and preventing and facing crises.Total dedication tends to make feelings of guilty, fear, and uncertainty in the future, frequent in the everyday lives of mothers of HIV children, disappear.
tell my son we have the virus but that he should not think about that, and then he is relieved (Fernanda).
Everything is new to me... it took me a while to accept and look for help (Carla).