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RESEARCH ARTICLES

 

Approaches of the everyday life of people with Hepatitis B

 

Isabela Nogueira PessôaI; Maria da Penha VasconcellosII
INurse. Master in Public Health. PHD Student from the Post-Graduation Program in Public Health, Faculty of Public Health - University of São Paulo. São Paulo, Brazil. E-mail: isabelanp@usp.br
IISocial Psychologist. PHD in Public Health. Professor from the Post-Graduation Program in Public Health, Faculty of Public Health - University of São Paulo. São Paulo, Brazil. E-mail: mpvascon@usp.br
IIIWe thank to the Federal University of Acre and the Faculty of Public Health for their support in the conduction of this study and to the Coordination for the Improvement of Higher Education Personnel for its financial support.  


Abstract: This study aimed at understanding the way of life of people with the Hepatitis B virus and how these people seek to cope with the disease in their daily lives. It is a descriptive and qualitative study performed in the city of Rio Branco, Acre State, Brazil, in 2008. 12 interviews were conducted from the Specialized Assistance Service (SAS). The transcription of speeches, field notes and participant observation has formed the records analyzed from the viewpoint of the sociology of the everyday life. The analysis allowed us to elaborate the following categories: the disease in the everyday life ─ including the perceptions of the adverse effects of the treatment, the constraints coming from the disease and / or from the pharmacological treatment and prophylactic cares; coping strategies towards the disease ─ modalities through which the subjects are confronted with the implications of the Hepatitis B, namely: religiosity, spiritual and family support, and planning for the future.

Keywords: Hepatitis B; Public Health; Chronic Disease; Therapeutic Procedures.


 

INTRODUCTION

 

In the current health scenario, viral hepatitisIII, in its several forms, takes place in all continents, constituting a serious issue of public health. The Hepatitis caused by the Virus B (HBV), in particular, can affect the lives of patients and of their relatives, as well as socioeconomic factors can also be affected by morbidity and mortality rates.

The Brazilian Amazon Basin is considered an area of high endemicity for Hepatitis B. In Acre State and in its capital, Rio Branco2, it features a framework in which youth and young adults form the significantly affected population by this disease and its implications.

Accordingly, we sought to understand the way of life of people living with HBV and how these people try to deal with the disease in their daily lives.

THEORETICAL AND METHODOLOGICAL BENCHMARK

By considering the everyday as privileged object of analysis of society in the quest for revealing aspects of social life from the daily routine, embarking by the “historical-original-significant, in which it happens the intersection of multiple dialectics between the routine and the happening” 3:78, this can be the most appropriate perspective to understand the way of life of the subjects under investigation. That is why we opted to conduct a descriptive and qualitative study, with analysis of the material from the sociology of the everyday life.
We chose the Specialized Assistance Service (SAS), since it is the referential health unit to the Acre State and adjacencies in treating viral hepatitis and other infectious diseases, for getting the study subjects, which are people carriers of the HBV, aged between 15 and 30 years, of both genders, who were being monitored and/or treated in outpatient units. The field investigation took place between June and November 2008.

Initially, we applied an exploratory instrument, allowing not only getting the telephone contacts and addresses, but also helping to demonstrate the degree of willingness to participate in research, seeking to establish a properly close relationship as one of the methodological strategies.

In order to contemplate the research object, it is necessary to choose a methodological pathway that leads to a close and effective relationship between the researcher and its informants, thereby preferring an approach from the perspective of the subject, in which the observation can contemplate its meanings, beliefs and values4,5.

We made use of a second instrument to conduct the interviews, which was consisted of the following socioeconomic and guiding questions: tell me about your life/daily routine; how did you discover your health problem? What information do you have on this disease? Do you believe to have Hepatitis B means have a life different from other people? Has the Hepatitis B changed your plans for the future? What are your plans for the future?
These questions aim at driving the conversation in order to seize more accurately the way of life of the subjects from their daily lives, however, do not constitute in a fixed script, given that the development of an interview can require further questions for deepening answers that were recorded and transcribed.

There were interviews with relatives through the use of a proper instrument, seeking the people closest to the respondent in order to record the speeches of those who provide daily care actions, with a view that they contribute with information about the patients' daily lives. We addressed issues regarding the perspective of people upon knowing of the case of Hepatitis B in their family environment; occurrence of changes in routine because of the fact of having someone with Hepatitis B at home, besides their expectations in relation to the life of the sick relative.

The instruments were exclusively elaborated for this purpose. Furthermore, we made use of participant observation, with sights to find elements on the life context of the surveyed people.

The participants were interviewed in their homes, workplaces or within the SAS. We held more than one meeting with each person for the collection of information. 12 interviews were conducted, two of them with relatives. In the phase of contact and selection, there were four withdrawals, impediments and /or refusals.

The transcripts of speeches, field notes and the registrations of participant observation, in addition to information collected by the initial instruments, have constituted the set of analyzed records.

This study was approved by the Research Ethics Committee from the University of São Paulo, through the Opinion nº 1848/2008. The subjects signed the Free and Informed Consent Form (FICF), thereby observing the ethical and legal precepts.

In order to ensure the anonymity of respondents, their speeches were identified from the order of conduction of the interviews. Furthermore, we added information (age, occupation, marital status and time of diagnosis) to better characterize the subjects.

The analysis of the material from the sociology of the everyday life made possible the construction of categories, understood6 as conceptual constructions, capable to provide meanings. In this categorization process, the meanings belonging to the same phenomenon were grouped, thereby seizing the specificities of the subjects, in their daily lives, when they find the need to coexist with a chronic disease. Moreover, we made use of theoretical notions that supported the interpretation of data.   

RESULTS AND DISCUSSION

In this conception, the analysis of material allowed us to define categories: the disease in the everyday life ─ including the perceptions of the adverse effects of the treatment, the constraints coming from the disease and / or from the pharmacological treatment and prophylactic cares; coping strategies towards the disease ─ modalities through which the subjects are confronted with the implications of the Hepatitis B, namely: religiosity, spiritual and family support, and planning for the future.
.

The disease in the everyday life: implications in the way of life

Over time, the discovery of the diagnosis of Hepatitis B brought changes to the way of life of the subjects. The necessity of medical monitoring and of pharmaceutical treatment, as well as dietary and physical restrictions, imposed by the disease or by the side effects of medication, are present in the daily lives of people who are still searching for work, study, leisure, well-being and achievements to their lives.

The memories of the beginning of the treatment are:

High fever, pain in legs, pain in the body and head, sometimes, I had strong back pains [...] eagerness for vomiting, much pain! [...] When I take the medication, sometimes pain comes strong, sometimes not. The first dosage causes even stronger pains [...] the first dosage is unforgettable! Much reaction! (E1, 23 years, housewife, married, diagnosed 4 years ago)

New antiviral and immunomodulating agents are being investigated. Some of the main medicinal drugs used to combat infections with HBV are: lamivudine7, interferon α2b, peg interferon α2a, adefovir, entecavir and, more recently, telbivudine. However, none of these medications can effectively remove the HBV from liver cells8,9.

In general, synthesized interferons exert antiviral effects by inducing a state of resistance to the infections and through the modulation of effector part of the immune system, with a view to neutralizing the virus or eliminating cells infected by such agents. These medications can cause adverse reactions, such as weight loss, lack of appetite, nausea and vomiting, muscle and joint pains, emotional instability, fever and chills10.

The drug treatment was mentioned in interviews with a meaning of pain, discomfort and nuisance for routine activities, because, in addition to the adverse effects, there is the issue of frequent trips to the health service for the purpose of application, thereby hindering work activities and studies. However, the recognition of the need for being submitted this process, in order to control viral manifestations, as well as due to the hope for healing through the extinction of the agent was also reported.

I know that this treatment really hurts! It's a tiny and little needle, but the remedy provokes fever, headache, body aches, oh! I lose weight also [...] I lost 14 kilos in only two months, right at the beginning, because when we start the treatment, medications make you get hungry, but it is important for the person to be healed [...] I just wanted it could be ended [. ..] Oh! I cannot stand taking this remedy, having to go from here to there to the hospital three times a week. (E2, 19 years, student, single, diagnosed 11 years ago)

The manifestation of the disease or the conduction of the treatment imposes restrictions on the daily lives of people with HBV, especially with regard to feeding and alcohol consumption, as well as the physical exertion – thus having repercussions in the more intense works and physical activities.

Due to the viral action is able to cause liver damages, as a result of inflammation of the organ at stake, which participates, among other functions, in the metabolism of fats, it is suitable to establish a diet rich in carbohydrates, with sights to obtain energy; low in fat and in sodium, in order to avoid liver overload and fluid retention, respectively, and with abstention from alcohol, thereby eliminating the gastric irritation11.

You have to make a rigorous diet, which is not good! I cannot eat tasty things anymore. (E3, 23 years, student, single, diagnosis 5 years ago)

To change habits takes time, requires awareness of patients with regard to their health condition as well as personal determination. Moreover, there can be less adherence rates to non-drug treatments, such as to follow a nutritional plan, mainly if there are no symptoms that bring nuisance to daily tasks12.

Physical activities that require more effort are limited, and this situation comes together with some disorders like acquiring difficulties to work, particularly in heavy tasks, or when participating in more forceful sports and leisure activities.
The rules that govern the physical behaviors of social agents are outcomes of the objective conditions that they translate in the cultural scope, that is to say, according to the way of behaving-being:

[…][…] are precisely functions of the degree in which the individuals conquer their material means of existence of their physical activities, sales of goods that are the product of these activities or the use of physical force and consequent disposal in the labor work13: 157.

This explains the seizure contained in the speeches with respect to the difficulty of working or getting a job, since low socioeconomic status and schooling is characteristic of the majority of the surveyed subjects, which prevents their inclusion into most intellectual occupations or activities that require less physical efforts. 

Not all days I am able to work [...] today I need to take the medication at the afternoon, because if I take it at the morning and go to work at the afternoon, I cannot stand! The sun chokes people, you become very 'worried' and it is not possible to stand anymore. (E4, 28 years, blacksmith, married, diagnosed 15 months ago)

Some days I go to work because it is my obligation [...] I feel very bad and often the boss looks at us in a different way, thinking we're inventing something, but in fact the problem is serious! Only those who have it can know the reality. (E5, 26 years, baker, married, diagnosed 14 years ago)

The intolerance to activity, related to the presence of fatigue and malaise, also stems from liver suffering and has its effects on the everyday sociability of the affected subjects.

Indeed, I usually go to the church, with the church’s staff. We're going to rides, bathe in pools, I walk, I sit, the staff will play volleyball and I remain quieter [...] I don’t practice sports. At first, I could not run or jump [...] the doctor has forbidden it, so I stopped; now I won't to do it anymore. (E2)

We cannot do what I did before! It's different now, we do the basics! We can no longer play soccer, nor to get a good sunbathing. (E3)

Thus, daily practices, i.e., these ways of thinking, doing and feeling, are influenced by the health-disease-care process, at the same time that they influence it. The fact of understanding these dynamics can help the health care team to make its actions more efficient14. Furthermore, it is important to take into account the historical, social and cultural context of subjects and their experiences in the disease process, with sights to seize the factors that can implicitly hinder the treatment adherence15.

The coping strategies

The presence of daily challenges has driven the patients to the need for confrontation, i.e., they have to develop ways to deal with the issues imposed by the illness. There are several coping strategies, which, isolated or combined, are characteristics of the way of life of people seeking more balance in health-disease process.

The implications of disease with interference in daily life at work, at leisure and in food habits, as well as the coexistence with the side effects of medications, among other demands from the state of carrier, require the subjects to develop or enhance the coping strategies for combating such circumstances. The strategies chosen by the research subjects were: religiosity, spiritual and family support, and planning for the future.

Religiosity and spiritual support

Because this problem caused by Hepatitis can be healed only by God! It’s a task of God, but if you don’t believe in God, you will never be healed [...] I wait on God, thus, with this treatment, he can get well. (E11, mother of E3, 40 years, housewife, married, also carrier, diagnosed 5 years ago)

Accordingly, one of the possible confrontations of situations of disease is the resource of religious nature, with a view to handling and understanding the illness, because if a person can give to the harrowing event a kind of significance or an importance guaranteed by the sacred, he/she probably will achieve a new sense and a motivating force16.

Religiosity and spiritual empowerment emerge as almost certain components of treatment, thereby characterizing the human being in quest for the belief of something bigger, in other words, its shelter to adverse conditions, producing mechanisms to cope with unfavorable circumstances.

When a person makes use of religious practices during care actions, he/she adopts sociocultural forms of therapies that are close to him/her reality, therefore, refers to the pursuit for meaning to deal with life, in addition to alleviating suffering17.

The beneficial influence that the belief in a deity can exert over the treatment as a whole and over the way of living the status of illness becomes clear in the speeches.

You have to believe in the Almighty Father! (E3)

If you think positive, I guess that everything goes right. One must search is always with God, that is to say, in the presence of God [...] we can stay firmer and feel better. (E4)

Investigations have focused on the theme religiosity in groups with certain health conditions. The Perceived benefits in the use of religious coping, such as encouragement of emotions and feelings of comfort, sense of strength, power and control, decreased emotional burden arising from disease, spiritual support through a relationship with God, facilitation of acceptance of the disease and aid in preserving health, suggest potential mechanisms of how religiousity can affect the adaptation in the context of health threat18.

Nursing care should include the understanding of several expressions of religiosity/spirituality, since studies show the positive effects of these dimensions in confronting the diseases17,19

The family support network

The contribution of family members, companions and closest people in the management of care, treatment support and in coping with the disease process was considered crucial. The active presence of the family institution is important from the time of diagnosis, during treatment and even in the strengthening of the perspective of healing, understood as control of viral load and consequent minimization or absence of symptoms. The feeling of having someone to turn to and fight in its name has proved to be essential for the proper development of health conditions.

The family is the social group that provides the greatest amount and diversity of meaningful relationships of the health-disease process. Furthermore, it is the axis from which the main social coping networks related to this process are articulated20. That is why one should not be surprised by realizing the importance of the family in the care process of the respondents.

My mother helps me a lot, because, sometimes, when you discover you are with the disease, depression can be raised, but I was never depressed, thank God! Moreover, I went very strong about it, because my mother, my family taught me to be like this. I think my mom's lap was what made me that way. (E12, 27 years, office clerk, single, diagnosed 3 years ago)

When I heard [the diagnosis] I felt very bad and he [the partner] always gave me support, he never said anything that could harm me. (E1)

I go to the houses of my relatives, my mother treats me very well, my brothers treat me very well, Wherever I go I'm treated in the same way [...] It is a further support to me, the relatives have to give enough strength, because it is through it we can stay firmer and feel better. (E4)

The future can be built: expectations and projects

The confrontation of the disease can also take place through the planning of actions for the future. This idealization of tomorrow promotes a strong sense of possibility, through which the person, before defined only by the diseased condition, becomes again to be the subject of its actions, and can decide on the direction of its existence.

The projects for the future, though very private, show consistency in hoping for improvement of symptoms and extinction of viral activity, thereby setting up a framework of normality and making possible the performance of all daily activities hindered, delayed or suppressed by the occurrence of the clinical picture of Hepatitis B. Drug treatment is a big gamble, considered as a concrete means of getting better health conditions. The expectation that the medication can contribute to the feasibility of the plans for the future is highlighted by the surveyed subjects.

If you do the treatment, the hope is that you stay well! Because if you have more chance of eliminating [the virus], living much time [...] Now, you have much chance, because, in the past, there had no treatment, but now you’re able to care enough in order to not to allow the disease to develop. I believe so! (E1)

For these individuals, the future is full of projects that await only the improvement of the body, the disease control and the return of the well-being. The speeches have revealed plans of work and study, as well as desires and life paths to be constructed.

The youthfulness represents a stage of the life cycle in which the processes of empowerment are essential tasks. These processes are separations from the emotional family system, as well as the construction of new statements and practices in the social environment in which the subjects are inserted21.

I just want to get rid of this disease [...] There are people who let their psychological side very damaged [...] but I don’t allow it, I try to live well [...] I want to be graduated and do other things too. (E2)

I want to complete my studies, work and live my life in a normal way, being able to take care of my daughter and without taking this remedy, because it is very bad. (E7, 22 years, housewife, married, diagnosed 1 year ago)

In research on the concept of resilience, understood as the human capacity to overcome adversities, the possible protective factors significant for general health were identified, such as, for example, cognitive coping and acceptance of the disease, family participation in treatment and acting as a source of emotional support, besides the religiosity. The concept of resilience helps to demystify the issue that asserts that well-being and quality of life are not suitable to the lives of sick people. Thus, the promotion of resilience is of utmost value in the pursuit for the comprehensive health of human beings22.

Accordingly, only the practice of the biomedical model, with its shortcomings in addressing the multiple dimensions of the body, is inconsistent with the speech of the comprehensiveness of the person, which is the objective of the care drawn by nursing23. Therefore, it becomes necessary to foster and strengthen actions that are guided on effective interaction between users and health care professionals, with sights to construct more effective ways of caring24.   

CONCLUSION

The study, from the everyday life of carriers of Hepatitis B, has the following categories: the disease in the everyday life ─ including the perceptions of the adverse effects of the treatment, the constraints coming from the disease and / or from the pharmacological treatment and prophylactic cares; coping strategies towards the disease ─ modalities through which the subjects are confronted with the implications of the Hepatitis B, namely: religiosity, spiritual and family support, and planning for the future.

The limitations of this study are related to the small number of respondents, which prevents generalization of findings.

The way of life of these people is a very private universe, but also common. The consequences of the disease and treatment, or the fact of coexisting with HBV in the body distinguish their everyday life. At the same time, they coexist with these differences, but keep expectations, projects and coping strategies similar to those of any other human, such as the desire to work and study, seeking autonomy and personal development; the desire of having children or taking care of those already born, providing and strengthening their own family core; the longing for achieving better health conditions, constructing a positive future from a day-to-day characterized by difficulties intrinsic to the illness.
The understanding of everyday life can subsidize the planning of health actions, allowing professionals to exert a performance closer to the legitimate needs of users, to the extent that there is a dynamic of significant interaction between the everyday practices and the health-disease-care process. Thus, the fact of understanding the daily lives of users is to gather opportunities in health work that are really comprehensive and equitable, because individuals would be perceived in their specific dimensions.

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