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Revista Gaúcha de Enfermagem

On-line version ISSN 1983-1447

Rev. Gaúcha Enferm. vol.38 no.3 Porto Alegre  2017  Epub Apr 12, 2018

http://dx.doi.org/10.1590/1983-1447.2017.03.58737 

Original Article

The sense of spiritual care in the integrality of attention in palliative care

Isabel Cristina de Oliveira Arrieiraa 

Maira Buss Thoferhnb 

Osmar Miguel Schaeferc 

Adriana Dora da Fonsecad 

Luciane Prado Kantorskib 

Daniela Habekost Cardosob 

a Universidade Católica de Pelotas (UCPel), Hospital Escola da Universidade Federal de Pelotas. Pelotas, Rio Grande do Sul, Brasil.

b Universidade Federal de Pelotas (UFPel), Faculdade de Enfermagem. Pelotas, Rio Grande do Sul, Brasil.

c Universidade Católica de Pelotas (UCPel). Pelotas, Rio Grande do Sul, Brasil.

d Universidade Federal do Rio Grande (FURG), Faculdade de Enfermagem. Rio Grande, Rio Grande do Sul, Brasil.

ABSTRACT

Objective

To understand the sense of the spiritual care for the integrality of attention to the person and to the interdisciplinary team of palliative care.

Methods

Qualitative research with theoretical framework according to Viktor Frankl theory. Participants were nine people in palliative care and six professionals from the Interdisciplinary Home Health Care Program who attended these people. Information was collected at the participants’ domicile, through observation, and phenomenological interviews that were conducted in the period from June to October 2014, recorded, transcribed and turned into interpreted text with a hermeneutical phenomenological approach.

Results

The following categories emerged: The sense of integrality of care and The sense of spirituality for professionals who care for people in palliative care, with their subcategories.

Conclusion

The spiritual care provides comfort and the existential encounter between the person in palliative care and professional staff that take care of the person.

Key words: Spirituality; Palliative care; Terminal patient; Nursing; Integrality in health

INTRODUCTION

In the healthcare working process, the recognition of the right to health through the implementation of the National Policy of Humanization was accepted as an inclusion policy for all individuals in the development of individual and collective health. In addition, continuing education programs have been carried out, which highlight the need for developing skills according to the reality imposed in daily work, considering this as a space for discussion and appropriation of new knowledge to achieve interdisciplinary and comprehensive care(1). Comprehensive care is understood as the overall action that has been often associated with dignified, respectful treatment, with quality, embracement, and bonding, understanding human beings in their biopsychosocial and spiritual dimensions(2).

Currently, there are many palliative care development initiatives worldwide. In Brazil, this movement has been growing, but less intensely. One of these initiatives emerged in 2005 in the city of Pelotas, in the state of Rio Grande do Sul, when the Oncology Interdisciplinary Home Care Program (PIDI, as per its acronym in Portuguese) was launched with the aim of providing care to patients undergoing cancer treatment with indication for palliative care. The World Health Organization (WHO) defines palliative care as an approach that improves the quality of life of patients and their families facing problems caused by incurable diseases with limited prognosis and/or serious life-threatening illnesses, through the prevention and relief of suffering by means of early identification, appropriate assessment, and rigorous treatment of physical problems such as pain, and also other psychosocial and spiritual problems(3). This definition was also adopted in Brazil.

Existential crises caused by diseases lead individuals and their social group to important questions on their lives. These questions are often full of emotion, which may result in extensive positive changes or major personal and family catastrophes, which are also followed by healthcare professionals(4).

Considering the understanding of human beings as integral beings, the spiritual dimension is an integral part of individuals and essential for the way of thinking, acting, and consequently the way of providing care for or taking care of themselves(5).

In the present study, spirituality is related to questions that transcend daily life in the search for sense and meaning for the process of living and dying, with the emergence of genuine feelings such as compassion, solidarity, and unconditional love(1). Moreover, spiritual care may be understood as respect for patients in friendly and pleasant interactions, sharing of rituals, helping patients and professionals in finding inner strength(6).

According to a study, people who develop certain values and practices, such as prayer and meditation, have better quality of life and react more satisfactorily when submitted to specific health treatments(7). In another study carried out in the state of Texas with caregivers of patients with advanced cancer, all of them reported that spirituality helped them in dealing with the disease, and for most participants, the presence of these values had a positive impact on the symptoms of their loved ones, in addition to improving physical and emotional aspects. These results show the importance of assessment and spiritual support for caregivers of patients with advanced diseases(8).

In this context, the theme spirituality has been focus of attention, and the psychiatrist Viktor Frankl was an important author on the theme. He was the founder of Logotherapy, also known as the Psychotherapy of the Meaning of Life, being the search for meaning the main driving force in human beings, including in the dying process. For the author, suffering is inherent to human beings, and he highlights the tragic triad of existence-pain, guilt and death. However, regardless of the suffering, freedom of spirituality enables human beings to configure the meaning of their existence. The way individuals face suffering makes all the difference, since finding a meaning for it is one of the ways to relieve it. Frankl tried to give a humanistic interpretation to suffering, in which sick patients should not only become passive beings, but have a dignified and motivated attitude with the help of the healthcare team(9).

Hence, appreciating the spiritual dimension is not a matter of believing or not in God, but especially of considering the subjective and social reality that has an objective existence(4).

Therefore, although studies have been carried out(7-8), it is understood that there is still a gap in scientific knowledge related to the search for the meaning of spiritual care for people who are receiving palliative care and also for the team that provides this care. The relevance of the present study stands in its guiding question: What is the meaning of spiritual care for the comprehensiveness of care to individuals and interdisciplinary palliative care teams?

To respond to this question, the aim of the present study was to understand the meaning of spiritual care for the comprehensiveness of care to individuals and interdisciplinary palliative care teams.

METHODOLOGY

A qualitative study was conducted with a phenomenological and existentialist approach based on Viktor Frankl’s theoretical framework. This author’s philosophy proposes the coordination of research in social and human sciences. The meaning of spirituality for the integrality of patients receiving palliative care, which is the object of the present study, is based on this framework.

Research in the perspective of existentialism and phenomenology enables the understanding of human beings in their multiple facets, perceptions, experiences, and relationships with the world when unveiling the phenomenon experienced in its essence, considering being ill, dying, and relating with others as phenomena that cannot be understood isolated from individuals who experience them in the whole of their existence(10).

The present study was carried out in the city of Pelotas, located in the South of the state of Rio Grande do Sul, in the Oncology Interdisciplinary Home Care Program of the teaching hospital of the Federal University of Pelotas. This program is made up of two interdisciplinary teams for patients receiving palliative care. Implemented in April 2005 with one team and expanded in 2011 into two teams, the program contributed to the care for patients associated with the oncology services in the city, being part of the comprehensive care cycle, from diagnosis, treatment, and cure up to palliative care for patients with no chance of cure, in their home environment.

The participants of this study were nine patients included in the Oncology Program who were receiving palliative care for having cancer in advanced stage and six healthcare professionals of the interdisciplinary team who provided care for these patients and their families in the dying process. The inclusion criteria for patients receiving palliative care were: being included in the program, being aged 18 years or older, and having clinical conditions to respond to the research. The exclusion criteria were: having clinical conditions preventing their participation, physically weak patients.

For the healthcare professionals, the inclusion criterion was being part of the program team for at least one year. Healthcare professionals who belonged to the team for less than one year were excluded.

For the development of the study, previous contact with eleven patients receiving palliative care was carried out by means of accompaniment of the teams in home care, when the researcher presented herself, explained the objective of the study, and invited them to participate in it. After this approach, two people said they would not like to report their experiences on the theme. Nine patients agreed to participate in the study, and interviews were scheduled in their homes. They were guided by one approaching question and two guiding questions. All information was recorded in digital media and immediately transcribed.

Data were collected from June to October 2014, by means of observation, a field diary, and interviews. The field diary was used to note all information observed, record informal talks, behaviors during talks, and views of the researcher. The interview enabled better interaction with the participants, allowing individual approaches with the purpose of rescuing the reality of the experiences of these people receiving palliative care, since the researcher was able to obtain descriptions of the experiences of the participants interviewed, and then reflect about them.

The interview script included one approaching question and two guiding questions. The approaching question used for patients receiving palliative care was: What does spirituality or faith mean for you at this time of your life? The guiding questions were: Tell me about this experience, and Do you think it is important that healthcare professionals who are providing you care talk about spirituality?

For the group of healthcare professionals, the approaching question was: What does spirituality mean for you as a professional who provide care for patients receiving palliative care? The guiding questions were: Tell me about your experience living with these patients, and How do you see the influence of your spirituality during your working process?

Paul Ricouer’s hermeneutic theory of interpretation was used to analyze this information(11), which began with the elaboration of the text, a written production based on descriptions of the information collected through interviews with patients receiving palliative care. This was the first contact of the researcher with the text searching for the meaning of experiences lived by the participants to be existentially understood. In this stage the principle of phenomenology “to the things themselves” is considered, trying to identify senses and meanings that emerged beyond words, such as in gestures of people receiving palliative care, followed by close rereading of the texts, time of involvement of the researcher with the text, seeking to associate the understanding with meanings, considering that phenomenology is based on the description of experiences of the participants without trying to explain them, highlighting the meanings contained in the text based on what was expressed by the participants in an existential time.

The following stage was the interpretation of the text to establish meaning units, gathering the highlighted sense units. The meaning units were placed in phrases that were associated among them, indicating distinguishable times in the whole text of the description, and, finally, the understanding, which is also called manifested sensitivity, considered the last phase in hermeneutics. In this phase, something that was unknown before emerges through the synthesis of meanings expressed by the participants, with the search for relevant constitutive elements indicated in the description of the experience lived. Both what was said and what was not said during the speaking were considered, and categories were established to understand the meaning of spirituality for people receiving palliative care.

Seeking to understand the meaning of spirituality for comprehensive care to people receiving palliative care based on Viktor Frankl’s theoretical framework, the experiences of the participants were classified into two categories, and the first category was subcategorized.

Ethical principles were present in all stages of the study, in accordance with the National Health Council Resolution no. 466/2012 of the Brazilian Ministry of Health on research involving human beings(12).

All participants were ensured anonymity and were identified by the letters CP followed by a number according to the order of data collection. The present study was approved by the research ethics committee of the School of Medicine of the Federal University of Pelotas on May 29, 2014, under protocol no. 668.915. All participants signed an informed consent form.

RESULTS AND DISCUSSION

Characteristics of the participants

In the group made up of patients receiving palliative care, six were men aged between 44 and 72 years and three were women aged between 36 and 68 years. Among these patients, three were retired and the others were on sick leave. Regarding religiosity, two reported not belonging to any religion, one reported being spiritist, two reported being evangelical, and four reported being catholic.

The group of healthcare professionals was made up of one nurse, one dental surgeon, one psychologist, one clinic physician, one nutritionist, and one social worker, with ages ranging between 29 and 59 years. The minimum length of work in the Oncology Program among the healthcare professionals interviewed was two years and the maximum was nine years. Regarding the participants’ religiosity, two reported being spiritist and four reported being catholic.

Meaning of comprehensive care

Comfort and faith provided by spirituality

Faith brings comfort and explains what seems to be inexplicable in the confrontation of difficult situations experienced by critical patients and their families, who, facing feelings of insecurity and sadness, find in their beliefs and spiritual practices, support for the confrontation and responses to questions, which are almost never explicit, on living and dying(13).

In the experience of the participants in this study, spirituality gives the sense of comfort and complement for the conventional treatment. This was attributed to spiritual surgery, a sense of spiritual presence of the late Pope, faith in God, assistance of spiritualists, evangelic pastors, and the Bible.

We underwent spiritual surgery. It happened every Wednesday, three for surgeries and three for dressings. I felt better after spiritual surgery. At the second time, I felt a lot of pain during the spiritual surgery, which was the pain I felt before undergoing physical surgery, when they opened and closed me. I was feeling pain at 10:00 P.M. when the surgery was scheduled. The day after spiritual surgery, I was also in pain. After this, the pain relieved and I never felt the same pain I used to feel before (CP4).

Pope John Paulo II was always with me in my bed headboard. I had a lot of faith in him well before he was canonized. I always liked him. I never saw him, but I felt he was with me. I felt his presence and spirituality. Every time I went to the ICU, my wife used to tell me “Mary, guide us”, and I felt peace. I have a picture of the Pope and I always take it with me (CP5).

We must have a lot of faith, because we believe in something we never saw like we never saw God. Faith is so great that it can cure us (CP6).

I already had spiritual treatment. I went there several times and there is a lot of prayer, there is nothing to do with “pai de santo”. I underwent astral surgery and he said there was no way to cut me. I learned about spirituality, faith, the importance of praying, how to deal with others. He delivers a lecture half an hour before beginning services and he tells you things about how life is. There is a team of thirty people working with him, and the only thing he accepts is that you take a chair to seat (CP7).

I am improving and always with follow-up of the church’s staff. The pastor of the Universal Church prays for me. This is full strength. My faith goes beyond my bones (CP8).

I have so much faith that I read the Bible every day. This helps me a lot and people pray for me at the church. A girl and a woman used to go to the hospital to pray (CP9).

In spite of the different manifestations of spirituality reported by patients receiving palliative care, the recognition of comfort and help they received was unanimous, in addition to the relief of physical symptoms after the spiritual surgery, there was clarification by means of lectures and Bible reading, a sense of peace, and even hope for cure. This brought the meaning of complementarity between the biopsychosocial and the spiritual dimensions, leading to comprehensive care, considering all dimensions of individuals.

In the report by CP4, who affirms to be catholic, he claims that with the disease, he found sense in his spiritual quest through spiritual surgery. This shows that spirituality is not necessarily associated with religiosity, but with the individual’s need for meaning in their quest.

Faith and science are interdependent, because if faith is unable to confront science, it has the risk of becoming “superstition”. Beginning and end, origin and improvement of all things are exclusive skills of spirituality. This happens because it is through divergence that a broader view becomes possible. Therefore, in spite of having different segments, both spirituality and science seek the well-being of human beings(14).

Presence of God

Faith and support promoted by spirituality provide a better inner control before death situations. It is known that religions offer solutions for the dilemma of death, often associated with the presence of God, regardless of the religious belief of individuals. The spiritual practice becomes a recovery strategy of strength lost during the suffering experience. In this context, religious beliefs and practices meet the need of individuals in having an expectation for the future(15).

The sense of presence of God is experienced by the participants in different ways, which have meanings through love, strength, faith, peace, protection, possibility of wining, and overcoming of obstacles.

First, if one side or the other does not work, they both have to work together. I must have faith in medical care in the earth and in spiritual care (CP1).

Then, today I would not live without God. I have much faith in God. God opened my mind. The world was created and built through love. I learned this very late, I suffered a lot until understanding that God is love and that we have to get into his line. Therefore, right hand and this is my understanding (CP2).

Now, I believe there is a force that makes us improve. It helps. I believe that somebody is helping. I believe that they are spirits with the consent of God, because God and Jesus Christ are above all (CP3).

The reply I had from God was my peacefulness. I was not afraid of anything. Several friends called me saying they were praying for me. They prayed when they visited me and I had faith. Even when I came out of coma, I realized that I was peaceful (CP5).

In the experience of people receiving palliative care who find themselves in situation of imminence of death, the presence of God in their lives is very strong. Moreover, many of them recognize that it strengthened with the disease, and in addition, they make an analogy to physical and spiritual health, considering the need for this complementarity.

Experiencing spirituality is the loving way to feel time, with the privilege of seeing God, the last mystery, everywhere. Spirituality broadens one’s view, enabling the association of transcendence with this universal force(16).

In situations of disease and death, families also attribute to God or occult forces not only the cause of the event, but also the possibility of overcoming the experience, which is a way of not losing hope. When attributing the will of God, the acceptance of situations of suffering becomes more plausible and it is easier to go ahead, diminishing the weight of responsibility on the disease or death(15).

The presence of God as someone close, of easy access, leads to the sense of well-being in the reports of patients undergoing cancer treatment, since it makes patients feel unique and special when facing this force. According to them, without this presence, it is more difficult to face the disease(14).

Spiritual care

Healthcare professionals cannot ignore the spiritual aspect in patient care. Currently, this spiritual need is much more present, which leads to the emergence of spiritual mercenaries offering services in a misleading way to people who are already vulnerable due to the disease(17).

In the opinion of people receiving palliative care, the spiritual care promoted by professionals is perceived through physiognomy, care, and love expressed by their actions. It is clear that these attitudes help in their treatment. In one of the reports, there is a comment saying that the spirituality approach by healthcare professionals is easier to be found in home care than in hospitals. In addition, it was recognized that this care is currently better understood by doctors, and in general, most healthcare professionals understand the need for spiritual care.

The importance of the involvement of healthcare professionals together with the chaplain in approaching spirituality, including prayers, was also highlighted. These actions raise the confidence of patients in the team and bring them safety. Considering spiritual care as a way of alleviating suffering, if patients are able to find it in healthcare professionals, they become a means of relief, and everything they start practicing for the patient makes sense.

I can see the spirituality of healthcare professionals through their physiognomy, when they are caring, loving. I love them so much that I miss them if they do not visit me. I also found some spiritualized professionals during my hospitalizations. I call them guardian angels. I feel love for them (CP2).

Each healthcare professional is a being, but it is good to like spirituality. Because it helps other people and it will help those who are sick (CP3).

I think it is very important that healthcare professionals recognize the importance of the patients’ spirituality, and I think that most professionals recognize it, because there is no way of deviating from this (CP4).

I think that healthcare professionals must consider the patients’ spirituality. None of the professionals of the hospital talked to me specifically about my spirituality, but they said I should be relaxed and have faith, because everything would be fine. Therefore, I received the visit from the chaplain in the program and I liked it. It was very nice. He even brought me some readings with important things to learn. I loved it (CP5).

I think it is important that healthcare professionals consider the patient’s spirituality. I met doctors who did not believe in spirituality. The other day, I was pleased because the chaplain came here and the doctor was present. I was pleased because he started a dialogue with me and she participated, and I thought it was wonderful. I felt that what he was giving to me, he was also giving to her. She was interacting. He said a prayer and I noticed that she was also praying. I thought it was beautiful. This makes us feel safer, knowing that that professional also trusts in God (CP6).

I have been paying attention to that, before doctors did not believe if we talked about faith in the cure of God. They thought it was all nonsense, but I have noticed that they now believe, it is different now and this is important (CP8).

I think it is very important that the people who care for me also have faith. I see that few healthcare professionals care about it. What a pity! Because this is so important (CP9).

It is worth highlighting the importance of healthcare professionals in understanding and accepting that others are full of beliefs and values that cannot be neglected during their illnesses, since it is understood that spirituality, religiosity, or religious beliefs help to give meaning to experiences of illnesses and death. They provide social, emotional, and spiritual support, bringing comfort, consolation, motivation, and hope, invigorating their energies in addition to directing the behavior of the own individuals and their families during the process of illness and death acceptance(15).

In a study carried out with 101 patients of a general hospital, who reported their perception on the approach of spirituality carried out by doctors and other healthcare professionals, most patients considered their spiritual dimension in the health-illness process important and showed interest in receiving support in this matter when necessary. This fact was also found in other national and international studies, leading to the conclusion that the role of healthcare professionals is to make this care easier, respecting the principles of autonomy and beneficence(18-19).

Frankl states that is through spirituality that people distinguish themselves from other animals(20). Therefore, it is understood that spirituality is an exclusively human manifestation and is a way or resource in the search for meaning. This justifies the need for spiritual care, whose importance is reinforced by the participants who are receiving palliative care.

The meaning of life reinvents itself with the proximity of death, and this is the way most people find to “settle matters” with God. Fear of God is what religions most spread; therefore, it is difficult to feel it.

Meaning of spirituality for professionals who provide palliative care

Meaning to life

For the professionals who work in palliative care, it is possible to attribute meaning for care through spirituality, when other possibilities of treatment were already ruled out. It serves as grant for this life that had an origin and will certainly have a destination, enabling healthcare professionals to reflect on their own lives, questioning their values and changing their attitudes.

I think that spirituality gives a meaning to life. This is what I see in my patients. When nothing else is possible, spirituality is what gives them strength, encouragement, and support so that they keep living (P1).

It helps your life when you learn that you have an origin, a destination, and this, as a healthcare professional, I have to respect. I must have this equity regardless of this spirituality being associated with any religiosity or not (P2).

Everything we experience with our patients who are in an advanced stage of the disease makes us appreciate other things and think and act in a different way (P3).

The suffering of others necessarily makes us think and act in a different way, that is, it enables us to question our own spirituality, values, and the meaning attributed to life and spirituality as being different from religiosity. Spirituality provides a sense of support. Whether religious or not, all individuals basically search for a meaning, and the existential emptiness is what most torments them(20).

Meaning to suffering and death

Spirituality also makes it possible to attribute meaning for suffering and death, since spiritual care strengthens and serves as support for families and patients who experience this moment.

I do not believe that life ends with death. I believe that this is a transcendence. I think it strengthens, because spirituality gives a meaning for death (P1).

We must be stronger and for this, we have to believe in what we cannot see (P4).

I think my spirituality strengthens me, because we are able to face the end of life in a peaceful way. Actually, for me it is not the end of life. Spirituality helps us to give some comfort to patients in their end of life with regard to the way they face it, that is, in the confrontation with the end of life, I think it is a way of helping patients (P5).

In the perspective provided by healthcare professionals, through spirituality, patients, their families, and the healthcare professionals themselves find a meaning that meets the need for finding something beyond the disease and that can sometimes strengthen the spirit, both for this and the other dimension, serving as support to develop the understanding and acceptance of the death process. If life has a meaning as a whole, suffering as a part of life also has a meaning. For Frankl, when we are no longer able to change a situation, we are challenged to change ourselves(20).

Meaning to the professionals’ work

Spirituality also brings a sense of harmony for the work of palliative care teams, because it enables a good relationship among healthcare professionals, improving patient care.

Now that I had the opportunity to approach spirituality, I think that it enriches us a lot as professionals and enriches care (P1).

I think that spirituality brings this, the meeting with the essence of individuals who have their values, principles, dreams, and desires, something that is internal (P3).

We need this support and we all need spirituality. Sometimes we have a problem, lack of money, problems at home, and we ask ourselves how we can handle everything, because we have a life outside too. Then, it is only possible with faith (P4).

The team strengthens us, relationship is essential. I always had good support from everyone. We always did a good work regarding comprehensive care, including spirituality (P5).

Spirituality is a two-way path, in which solidary and affective exchanges between professionals and patients occur, making it possible to believe in a transcendent being not necessarily related to religions. In other words, it means the connection of patients with the unconscious processes of existing in the search for meaning to life, in addition to bringing harmony to the working process of interdisciplinary teams(1).

FINAL CONSIDERATIONS

Faith and support promoted by spirituality provide a better inner control before situations of death through the sense of the presence of God, which is experienced by people receiving palliative care through different ways and meant through love, strength, faith, peacefulness, protection, and the possibility of winning and overcoming obstacles.

In the experience of people who find themselves in a situation of imminence of death, the presence of God in their lives is very strong. In addition to recognizing the influence of the disease in the strengthening of this presence, many patients still make an analogy between physical and spiritual health, considering the need for this complementarity.

In the opinion of people receiving palliative care, the spirituality of healthcare professionals is perceived through their physiognomy, and the care, and love expressed through their actions. It is clear that these attitudes help in their treatment. In addition, patients reported that the approach of spirituality by healthcare professionals is easier to be found in home care than in hospitals.

For the professionals who participated in this study, through spirituality, it is always possible to provide comfort, either by means of prayers together with patients and their families, or even individually, always in favor of the patients and their families, thus recognizing it as an important therapeutic resource. It is also a factor for the harmony of interdisciplinary teams.

To achieve comprehensive care, the inclusion of spiritual care in all settings that permeate the healthcare work is required, considering training, continuing education, care, and research. It is understood that the actions of healthcare professionals aim at the care of individuals, who are made up of physical, emotional, social, and spiritual dimensions.

The results of the present study confirm the theory that spirituality and spiritual care provide the existential meeting between people receiving palliative care and healthcare professionals who provide it, suggesting that this theory is included in all healthcare settings. Considering that death is part of life, in palliative care, it is understood that individuals have the right to have quality of life until the last moment of their existence, and their families need to be embraced and followed in the mourning process.

The present study is expected to contribute to the inclusion of spiritual care for people receiving palliative care by workers and healthcare systems, as well as to foster scientific production and education of professionals on this theme. The limitations of this study refer to the place of the study, a single home care program, which prevents the generalization of the findings, highlighting the need for studies on the theme in other care settings.

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Received: November 22, 2015; Accepted: February 06, 2017

Corresponding author: Isabel Cristina de Oliveira Arrieira. E-mail: isa_arrieira@hotmail.com

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