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RESEARCH ARTICLES

 

Therapeutic itineraries for people with sickle-cell anemia in the face of painful crises

Rosa Cândida CordeiroI; Silvia Lúcia FerreiraII; Fernanda Cajuhy dos SantosIII; Luciane Souza da SilvaIV
INurse. Master’s Student in Nursing from the Nursing School at the Federal University of Bahia. Assistant Professor at the Federal University of the Bahia’s Reconcave. Member of the Research Group on Women’s Health. Salvador, Bahia, Brazil. E-mail: rosa.candida@yahoo.com.br.
IINurse. Professor from the Post-Graduation Nursing Program from the Nursing School at the Federal University of Bahia. Researcher of the Research Group on Women’s Health and Gender. Salvador, Bahia, Brazil. E-mail: silvialf100@gmail.com.
IIINurse graduated from the Nursing School at the Federal University of Bahia. Member of the Research Group on Women’s Health. Former Scholarship Student of Scientific Initiation. Salvador, Bahia, Brazil. E-mail: nanda _cajuhy@yahoo.com.br.
IVNurse graduated from the Nursing School at the Federal University of Bahia. Member of the Research Group on Women’s Health. Former Scholarship Student of Scientific Initiation. Salvador, Bahia, Brazil. E-mail: lu_souza02@yahoo.com.br.


ABSTRACT: The objective of this descriptive study was to know the therapeutic itinerary of people with sickle-cell anemia in painful crises, considering the three subsystems of heath care: family, professional and popular, from the Health Care Model of Kleinman and the concept of therapeutic itineraries. The data were collected through semi-structured interviews with 12 people with sickle-cell anemia in the period from February to June 2011. The information was treated through the method of content analysis. This study allowed us to know that, despite the strong appreciation of the professional subsystem, people with sickle-cell anemia move through the three subsystems: family, professional and popular. Moreover, reference to the adoption of home care for the maintenance of well-being, prevention and confrontation of painful crises has been recurrent. The therapeutic itineraries are undertaken in line with the possible choices in the face of everyday confrontations that these people experience in the three subsystems.
The therapeutic itineraries are undertaken before the possible second choices everyday confrontations that these people experience the three subsystems.

Keywords: Sickle-cell anemia; Pain; Adult’s health; Nursing Care.


INTRODUCTION

 

Due to its high morbidity and mortality rate and prevalence, the sickle-cell anemia is highlighted among the genetic and hereditary diseases. The technological and scientific advancement has improved the prognosis of the disease, but prevention and treatment of painful episodes persist as some of the challenges.

The clinical evolution of the disease is characterized by periods of pain, which might be an acute or chronic symptom. In the acute clinical picture, the pain is related to tissue ischemia caused by vessel occlusion. The chronic pain is more complex and, usually, is associated to aseptic necrosis of the head of the humerus or of the femur, caused by chronic ischemia in the poorly vascularized places1. People with sickle-cell anemia require extended and continuous care, alternating, throughout the illness process, periods of disease exacerbation or stability.

The perception of pain is influenced by the way through which each person and those around it interpret the cause and significance of the presented situation, the existing changes in its daily life and the several care procedures to alleviate the suffering. Thus, the way of describing the pain is influenced by several factors, including the parlance, the familiarity with medical terms, the individual experiences of pain and the beliefs about the body operation2.

The coping strategies of the disease do not always follow a planning with a sequence of actions. The choices express subjective, individual and collective constructions that are influenced by many factors and contexts3.

There is still little awareness of the care and treatments provided for people with sickle-cell anemia outside of biomedicine, which hinders the open communication among health care professionals, these patients and their families. By taking care of people living with chronic conditions, it is necessary to go beyond the knowledge of the physical and psychological conditions, being that it becomes indispensable to understand the actual situation in which these people live and what steps they run through in the pursuit of health care shares, considering the cultural, religious, social and psychological factors, as well as the prior experiences.

Therefore, it is believed that studies on therapeutic itineraries might be important ways to know the trajectory that the people and their relatives go through in search for health care shares.

Accordingly, the study was guided by the following research question: What are the therapeutic itineraries of people with sickle-cell anemia in moments of painful crises? The objective was to know the therapeutic itineraries of people with sick-cell anemia during the painful crises, considering the three subsystems of health care: family, professional and popular.

THEORETICAL BENCHMARK

The behavior and choices of people with sickle-cell anemia in the search for health care procedures, during the painful crises are addressed in this study on the basis of the Health Care System of Kleiman4 and on the concept of therapeutic itineraries5.
The activities of health care are more or less interrelated, building a special cultural system - the Health Care System -, which allows people to get ways to interpret their illness and the possible actions in the pursuit of treatment. Health behaviors and beliefs and are governed by cultural rules that are interconnected in every culture, forming the system and targeting the activities of their components4.

Similarly, this care system organizes actions and interpretations related to the health context, being that it is constituted by the interaction of three subsystems: family, professional and popular. People move through these three subsystems, choosing whether or not the treatments and care actions that they will perform.

The family subsystem includes the family, the individual, the social network and the community members. It is here that the disease is identified and the actions and decisions are taken, thereby starting the therapeutic process. The professional subsystem is represented by legally organized and recognized propositions of healing. In the Western World, it is mainly represented by biomedicine. The popular subsystem is comprised of the non-formal healing agents, i.e., with no legal recognition. It has wide recognition in the community and is strongly associated to the family subsystem4.
The studies on therapeutic itinerary were originated in the anthropological field, and the early works were focused on the behavior of sick people. These approaches were very criticized for presenting a reductionist and utilitarian health viewpoint of the health problems, since it restrained the human behavior in the face of illness to the related issues only to the psychological aspects. Many of these studies were linked to the biomedical concept of disease and aimed at understanding the social factors influencing the use of health care services6.

Another strand of research has investigated the influence of cultural values in the choice of answers to health issues, identifying the cognitive elements and the cultural values as determinant factors of the pursuit of a particular health care service or treatment6.

As it happens with other concepts from the field of social sciences, one can find several definitions and explanations for the concept of therapeutic itinerary. The strategies produced by people to deal with disease not always follow a planning as in a sequence of actions, because there are different gazes and ways of interpreting the disease. The choices express individual and collective subjective constructions that are influenced by several factors and contexts7.

In this study, the therapeutic itinerary is understood from the different pathways and choices that people with sickle-cell anemia and their families build in the pursuit of care shares and treatments for the relief of pain and that are located in the subsystems: family, professional and popular.

METHODOLOGY

This is an exploratory study with qualitative approach, whose locus of investigation was a municipality in the metropolitan region of the city of Salvador/BA/Brazil. In this city, we have identified 12 adults with sickle-cell anemia who were constituted in subjects of this study. As to inclusion criteria, we have selected individuals of both genders diagnosed with sickle-cell anemia and aged over 18 years. The exclusion criterion was related to people aged below 18 years. Thus, in the period from February to July 2011, we have identified across the municipality, including rural and urban areas, 12 adult subjects with a minimum age of 18 years, with diagnosis of sickle-cell disease and living in the city at stake.

The insertion into the community took place through active participation in the research project “Quality of life and quality of health care: implications for morbidity and mortality of patients with sickle-cell anemia”, developed with financial support from the Research Support Foundation of the State of Bahia. The data collection was conducted in three moments: the first consisted in the active search of people with sickle-cell disease, from information obtained by means of health care professionals from the family basic health units, the general hospital of the city and the contact with the community and its residents, especially the community leaderships.

The second moment was the presentation of researchers and the sensitization of people towards the study, with the participation of community health agents. The third moment was the accomplishment of the interview after scheduling, being that they were guided by a script containing closed questions regarding the sociodemographic data and open questions about living and health conditions. The conduction of the interviews occurred after scheduling with each participant, through the completion of two visits in each residence, with recording and transcription of speeches.
The data processing was performed by using the technique of content thematic analysis. We have identified thematic units that gave rise to the categories understood as the set of expressions with similar characteristics8.

The development of the study followed the ethical principles advocated by the Resolution nº 196/96 of the Brazilian National Health Council, given that the research project was approved by the Research Ethics Committee from the Nursing School at the Federal University of Bahia (Opinion 010/2010). The request for participation in the study was verbally and accompanied by the Free and Informed Consent Form (FICF). By presenting the results, the speeches are identified by the letter E (entrevistado, which is a term that means interviewed in Portuguese language), followed by the sequential number of participant in the study, with the purpose of ensuring, among other aspects, the preservation of the identity of the interviewed subjects.

RESULTS AND DISCUSSION

The sample was comprised of seven women and five men, who coexist with sickle-cell anemia, aged from 18 to 45 years and who have declared themselves black (black and mixed). The data analysis has raised two categories: “Decisions about the disease and care procedures” and “The therapeutic trajectory in the health subsystems”.

Decisions about the disease and care procedures

This first category was built from the understanding of people about what they do to care for or treat painful crises. It is observed that there is not a linear sequence, but a process with distinct moments, which begins with the realization that something different is happening in their bodies. The most varied forms of signs and symptoms, such as physical fatigue, weakness, sleep-related disturbances, fever, yellowing eyes and reports of widespread malaise, are strongly present in the speeches of people with sickle-cell anemia and characterize the beginning of the painful crisis.

The speeches show that the professional subsystem worked as a parameter for the understanding of the characteristics that precede a painful crisis and what to do to solve the problem.

It makes the eyes become yellowed, it arises pains in back, knees, pain in the arms and in the whole body. (E3)

Hence, it is a general malaise; I start to see that something is wrong and I know I'll have some crisis. (E5)

Faced with the onset of symptoms, we begin the search for possibilities for what to do. We start the experiments from individual and collective knowledge about health care procedures.

With the perception of the onset of a crisis, people make use of several treatments and care procedures. They perform such care in the home environment, without a sequence, according to the opportunities and results obtained during previous crises. Some of these actions are more frequent and were identified by the entirety of the speeches of the interviewed subjects.

Teas, massages and protection against the cold are highlighted measures, which are practiced by all the people who have been part in the research, or simultaneously used with other therapeutic resources.

By understanding that care actions against the chronic disease are extended beyond the guidelines of health care services and are not restricted to the information provided by health care professionals, it is worth highlighting that these people seek alternative manners to relief or improvement of the painful crises.

Even when using the same type of tea (citronella herb, pterospartum tridentatum), respondents do so in a different way regarding the dosage, method of leaves usage and use. If the painful crisis worsens, the search by formal health care services is started. These behaviors were coincident with other studies and therapeutic itineraries and that combine the adopted behaviors before the severity of the health problems presented by the group9.

Due to not having success in family and community practices, people seek health care professionals who have some difficulties in establishing a plan of care for the treatment of painful crises.

The consultations are held at the reference blood center or emergency hospital of the city, they are emergency medical consultations conducted during the painful crises and routine examinations usually in reference service from the State’s capital. Nonetheless, the willingness to seek health care services regularly varies in a great way among the individuals.

For these adults, the constant need to be assessed by the health service is very tiring, stressful and often there is an inability because of the socioeconomic status. Thus, these people are not only running the guidelines already developed by health care professionals, they build new skills from knowledge acquired throughout life, with relatives and acquaintances, which are attached to technical and scientific skills acquired over time spent in the health care services10.

The number of admissions has great variability. Most of the interviewed responded that, during childhood, they were repeatedly admitted, however, currently, the number of hospitalizations is very low, approximately one hospitalization per year. Many of them responded that seek the hospital to use medications, without necessarily going through hospitalization.

But if the pain starts to increase, then I go to the hospital and take some strong medications; I lost count of how many times I was admitted. (E10)
To go there is a lot of sacrifice, because I have to leave here at 5 o'clock in the morning to find some vacancy. (E4)

Spiritual practices are also used as a form of care and treatment and they include prayers, belief in faith healing and miracles. Faith is an element that is present in all spiritual practices undertaken by adults with sickle-cell anemia. Whether faith is not present, they believe that the treatments do not resolve the painful crises. Miracles also appear in the speeches with the possibility of healing the illness, i.e., make the body expel sickle-cell anemia. To believe that one can rely on spiritual forces brings sense of comfort for these people and their families11.

I continue taking medications and pray to God to give help.. (E1)

I seek in my family and also seek in religion; I believe in God very much and I know He hears me, and that will heal me. (E2)

Faith is the evidence of things hoped for, and the conviction of things not seen. You have to really believe even not seeing it happen. (E11)

Chronic diseases produce suffering in people and in their family members and the popular subsystem is the scope in which religion and spirituality are highlighted11.

When these people make use of religious practices of care, they adopt a cultural and social form of caring that is close to their reality, as a way to sustain life and relieve suffering5,12.

The therapeutic trajectory in the health subsystems

The chronic condition demands continued and prolonged care and is incorporated into the process of living of the people. In this process, the family is crucial, by assuming the role of main caregiver and responsible for the treatment.

The family has an important role in the support and care to people suffering from illness and, when hospitalization is necessary, one should emphasize the importance of its presence, with support and care shares. During crises and admissions, the family subsystem was here identified to take the patient to the hospital and accompany it during the hospital admission, besides offering psychological support and provision of care.

When I am admitted, I have support from my mother, my uncles and my wife. (E6)

My family supports as far as it can. (E8)

Even my own friends, they never stopped supporting me. (E7)

When I have some problem, they help me; when I am not taking medications, they call me attention. (E9)

It is important to note that the social network of people with sickle-cell anemia is not restricted to the family support. Thus, the network of friendships is also regarded as important by the respondents. People who were part of this study started their search for care procedures and treatments by realizing the signs and symptoms that precede a painful crisis. In case of the sickle-cell anemia, these crises are among the most frequent complications. Accordingly, people, family members and neighbors begin managements to reduce the intensity of pain - family subsystem. Whether the crisis goes on, they seek the emergency services - professional subsystem - as a place where they might find care actions and treatment for the painful crisis.

In the construction of therapeutic itineraries, the pursuits for solutions do not follow a linear sequence, but are constituted in choices, where there are many treatments and care shares, chosen according to the opportunities and achieved outcomes. This process is started with the individual's perception that there is something different in its body, something that interferes with its well-being11.

Therefore, pain assessment and the measures taken to live with it should have a satisfactory management in the family subsystem. To that end, it becomes necessary that these people have access to health education, with a view to maintain the activities that are already performed at home. In the professional subsystem, they need to develop new attitudes towards the assessment of the painful crisis and resources used for its control. The acute pain control in the early stage might prevent or minimize more severe tissue damages.

In this group, it was observed in some individuals that the trajectories are closer to the biomedical model, while others move through instances grounded in personal, family, popular or religious knowledge. These people continually seek to develop care practices, building therapeutic itineraries that in their majority run through the family, popular and professional subsystems, though not necessarily in the aforementioned ordination, thus several reinterpretations of the professional subsystem have been occurring, especially with regard to care shares and treatments4,13.

The attendance performed in family health units was sorted as ineffective with regard to the care and treatment of pain. Given this assessment, the basic units are little sought due to the lack of resoluteness and non-appreciation of complaints. Furthermore, there is no activity on health education for this population.

In the FHP [Family Health Program] they do not care much, do little case, do not make lectures on anemia. The care was greatly improved in polyclinics, but the hospital and the FHP did not improve their shares. (E12)

We have found through the research data a distinct pursuit for health care services between men and women. Women seek more the basic health unit and men seek more the emergency unit, justifying their attitude by the greater easiness to receive the medication that controls the pain14.

The care for the chronically ill patient is essentially produced and managed by the family members, especially in times considered of silencing or normality14. The care practices in relation to pain denote that the subjectivity, sensitivity and listening skills are emphasized as essentials during the health care shares15.

I think the most important thing is to talk, ask about my status, host very well; I think that was the difference in attendance [...]. (E4)

In this context, the search for health care actions and treatment is difficult to be understood, if it is not taken into account the context of people's lives, especially before the available possibilities (or not) in terms of health care for the population of low income. The therapeutic itineraries are undertaken in line with the possible choices in the face of everyday confrontations that these people experience in the three subsystems. These trajectories are often marked by suffering, which might be intensified in the condition of a genetic disease15.

The health care should be constituted in a relationship among people and that lead to the achievement of an improved health status, as well as quality of life of those involved. Thus, professional practices should not be restricted to the technical activities, but rather include elements such as empathy and active listening, which are crucial for getting safe and ethical interpersonal relationships16.

We need to alert those who are caregivers for the need for performing an assessment of all the means used by people when they seek the formal services, so that they might encourage actions that promote health.

The results here presented are not amenable to generalizations, because the research participants were selected by facing a particular experience, in this case, the painful crises arising from the sickle-cell anemia.

CONCLUSION

This research has allowed us to reflect on the multiple therapeutic choice alternatives that are selected in function of the availability of services and individual’s interpretation about their health condition. In the pursuit of pain relief and improved quality of life, people with sickle-cell anemia resort to several forms of care, which encompass the formal and informal ones.

The findings enable to reflect that, despite the strong appreciation of the professional subsystem, the interaction among this subsystem and the other subsystems occur regardless of the acceptance or rejection of the prevalent subsystem. People living with sickle-cell anemia produce knowledge and draw new streams, in addition to rebuilding the formal streams, in order to achieve a humanized care that minimizes the discomfort caused by pain and improves the quality of life.

By taking as reference the knowledge constructed from the interpretation of what people with sickle-cell anemia do in the face of a painful crisis, one should think that the commitment of the health care professional should have a broader approach of the individual, including sociocultural values, experiences and perceptions in the subsystems of health care.

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