RESEARCH ARTICLES

Palliative care to child with cancer

Jael Rúbia Figueiredo de Sá França^I; Solange Fátima Geraldo da Costa^II; Maria Miriam Lima da Nóbrega^III; Maria Emília Limeira Lopes^IV

^I Nurse. Master. PhD Student in Nursing from the Federal University of Paraiba. Joao Pessoa, Paraiba, Brazil. Researcher of theNucleo de Estudos e Pesquisas em Bioetica (Center for Studies and Research in Bioethics). E-mail: jaelrubia@gmail.com.br
^II Nurse. PhD in Nursing. Researcher Coordinator of Nucleo de Estudos e Pesquisas em Bioetica. Member of the Graduate and Post-graduate Programs in Nursing. Nursing Department of the Health Sciences Center, Federal University of Paraiba. Joao Pessoa, Paraiba, Brazil. E-mail: solangefgc@gmail.com.br
^III Nurse. PhD in Nursing. CNPq Researcher. Member of the Graduate and Post-graduate Programs in Nursing. Nursing Department of the Health Sciences Center, Federal University of Paraiba. Joao Pessoa, Paraiba, Brazil. E-mail: miriam@ccs.ufpb.br
^IV Nurse. PhD in Education. Researcher at the Nucleo de Estudos e Pesquisas em Bioetica. Member of the Graduate and Post-graduate Programs in Nursing. Nursing Department of the Health Sciences Center, Federal University of Paraiba. Joao Pessoa, Paraiba, Brazil. E-mail: mlimeiralopes@yahoo.com.br

ABSTRACT

This study aimed at understanding the nurses' existential experience in the care of children in terminal stages of cancer. It is a piece of field research of qualitative nature based on the Humanistic Theory of Nursing. It was conducted with ten nurses working at a pediatric unit of a public hospital in João Pessoa, PB, Brazil, from April to June, 2010. Data were collected by means of semi-structured interview and treated with categorical content analysis. Two categories emerged as follows: [1] communication and interpersonal relationship of the nurse with the child with cancer in end-stage and [2] strategies based on palliative care to attenuate the existential suffering of the child with cancer. The research emphasizes palliative care turns out to be a productive tool to the child with cancer insofar as it can generate true communication and bond in the nurse-child relation. It might develop a therapeutic process based on universal humanist values and bring on benefits to both.

Keywords : Nursing; palliative care; communication; child.

INTRODUCTION

Caring is part of human existence. From birth to death, this is a primary need of man - a humanistic component that, in its fullness, promotes the continuity of the human species healthily¹. It is a relational practice that requires dedication and proximity (on the presence of the caregiver and the person who is being cared), since it incorporates subjectivity, affection, love, humanization, courage, respect, dialogue, body gestures, touching and perception, besides the technical aspect². Thus, care includes self-care, knowing and being busy with oneself ³.

The nurse, as a member of the multidisciplinary team, is present in different stages of care - prevention, diagnosis, prolonged treatment and palliative care⁴ - targeted to patients with terminal diseases such as cancer, for example. In this context, nursing care involves controlling pain and other signs and symptoms of the disease in order to provide humanized care in a holistic way⁴.

So, one must understand the importance of care to cancer patients, particularly children, for promoting their welfare is essential, considering their individuality, uniqueness, attitude, beliefs and cultural values⁵.

Despite the importance of palliative care, there is also an urgent need to advance research towards this issue, particularly in the field of nursing. This justifies our interest in developing this work, whose guiding principle is the Humanistic Nursing Theory⁶, because such Theory enables the construction of a new form of care to children with terminal cancer in palliative care.

Based on the foregoing, this study aimed to understand the existential experience of nurses in the care of children with cancer who have no therapeutic possibilities.

THEORETICAL FRAMEWORK

The chosen theory was called by Paterson and Zderad as the Humanistic Nursing Theory, and it was developed through inter-human event of nurses by the description and conceptualization of experienced phenomena, considering that the relationship between nurses and clients aims at the welfare and recovery of the latter, who is an active subject of the process and that sees in these professionals possibilities to help and support⁶.

The theoretical framework of palliative care - known as the philosophy of the modern hospice movement - and the care of the human being who has no therapeutic possibilities of cure gained emphasis in the 1960s, when care to the sick being was enhanced with mercy and sympathy⁷.

Hospice is a philosophy of palliative care developed to provide a differentiated care for patients with advanced disease until the end of their lives, in hospitals and at home. It addresses the concept of care grounded in the patient-family binomial, called the hospice movement, which was originated in the Christian era, with Fabiola, a Roman matron who performed works involving sick, poor and foreign people, for whom she opened her home and offered clothing, food and shelter^7,8.

In England, in 1967, the modern hospice movement began with Cecily Mary Strode Saunders (nurse, social worker and doctor), responsible for the founding of St. Christopher's Hospice in London, with the development of care, teaching and research activities directed to terminally ill patients and their families. It also implemented palliative care, whose philosophy is:

Ensuring life and facing death as a normal process; without hastening nor postponing death; seeking to alleviate pain and other distressing symptoms; integrating the psychological and spiritual aspects of care for patients; offering a support system to help them to actively live as much as possible, until death; offering a support system to help the family to cope with the patient's illness and their own grief^8:669.

Thus, palliative care aim to cover all patients' needs (in the limits of what is possible) in an existential encounter, in which there must be inter-relationship and maximum security between the caregiver and the person who is being cared.

Palliative care is an interdisciplinary field of total, active and comprehensive care, provided to patients with chronic degenerative diseases from initial stage to the terminal phase⁹. Professionals establish a relationship with terminally ill patients and their families, in order to prevent and to ease their suffering, based on early identification and correct assessment of physical, psychosocial and spiritual problems. Therefore, it is more than a therapeutic option.

Such care should have a theory that values each being in their uniqueness, with a lively dialogue, as support. The Humanistic Nursing Theory has these features, and involves the encounter between someone to meet and someone to be met; the presence in the quality of being receptive and reciprocal to another person; the relationship, in which a person goes towards the other, which enables an authentic presence; and a call and a response, which are configured in the form of verbal and nonverbal communication¹⁰_.

That theory values this phenomenon wherever it occurs, in the way we live every day, considering nursing in its essence and adding that this appreciation covers all nursing situations as a particular way of human dialogue, which is used in the existential sense¹⁰. Thus, the relational care ⁹ outlines the authentic and genuine experience of being and, in the experienced time and lived space, the individual time of each being connects with the shared time for both, which are interrelated. From this perspective, care comprises those living in two different worlds: an internal world (I) and an external world (thou), where thou is present. Both have the special features of relating to each other – the I-Thou (subject-subject) relationship, the I-it (subject-object) relationship and the I-we relationship¹¹.

The I-it relationship is expressed as a reflection of man about his past relationships between the I and the thou, in which he, in reflecting on these relationships, values the "it" as an object to be known. In the I-we relationship, as the theoretical, man acquires his identity through his relational situation with the family, the community and others, which contributes to his individuality¹¹.

METHODOLOGY

This is a field study, with a qualitative approach, based on the Phenomenological Nursing methodology proposed by Paterson and Zderad, which comprised five stages: the knowing nurse is prepared to come to the knowledge; the nurse intuitively knows the other; the nurse scientifically knows the other; the nurse complementarily summarizes the known realities; the multiple succeeds paradoxical unit as an internal process of the nurse¹⁰.

The investigation scenario was the Pediatrics Unit of a public hospital in the city of Joao Pessoa - (PB), which is considered a reference in Paraiba in the treatment of cancer in children from birth to 19 years old and adults.

The total number of participants was not stipulated a priori; it was established throughout the research process, according to sufficiency criteria, that is, when an empirical material allows drawing a comprehensive picture of the investigated issue¹². Therefore, the study included 10 nurses. The criteria used to select the sample were: availability; being in professional activity during the period of data collection, so that they could talk more easily about their existential experience in caring for children with terminal cancer; and having at least one year of work in that unit, since the adopted theoretical and methodological approach requires some experience of the subjects in the care actions related to the investigated phenomenon.

In March 2010, we approached the nurses of the pediatric unit and presented the research proposal, explaining the relevance of the study and its contribution to the practice of palliative care of nursing in pediatric oncology and to life.

Data were collected from April to June 2010, in the morning, evening and night shifts, given the participants' availability. This process was started only after the research project was approved by the Ethics Research Committee of the Federal University of Paraiba (Protocol 062/10). It is noteworthy that we respected the ethical regulations set in Resolution No. 196/96, particularly with regard to informed consent and autonomy of individuals¹³.

To collect the data, we obtained the empirical material through semi-structured interview technique, using the recording system, with the following guiding questions: How do you use communication in palliative care to assist children with terminal cancer? What strategies do you use to promote palliative care targeted to children with terminal cancer? This phase of the study was carried out only after the participants signed an Informed Consent Form. They were approached in the hospital, and interviews were conducted in its facilities, in appropriate place and time.

As for the anonymity of the nurses, they were identified by the letter N, followed by numbers one to ten. Empirical data obtained from the interviews were analyzed qualitatively by categorical content analysis - a set of communication analysis techniques whose aim is to obtain systematic and objective procedures to describe the contents of the messages and indicators that allow the induction of information on the categories of production of these messages. It comprises the following steps: pre-analysis, material exploration, grouping categories and treatment of results¹⁴.

The analysis revealed the following categories: Communication and interpersonal relationship between nurses and children with terminal cancer and Strategies based in palliative care to minimize the existential suffering of children with cancer.

RESULTS

The following results show the existential experience of nurses in the care of children with cancer, based on palliative care and with emphasis on speeches expressed during the empirical phase of the study.

Communication and interpersonal relationship between nurses and children with terminal cancer

Recognizing the importance of communication between nurses and children with cancer who have no therapeutic possibilities through an authentic I-Thou relationship is greatly relevant, since the situation in which these children are puts them sometimes in situations that are difficult to understand, characterized by pain and suffering, which causes them anxiety and depression, as shown by these excerpts from reports:

If the child is conscious, I say: keep calm, everything will be OK. [...]. Another thing, we serve children and adolescents. Teenagers are usually more oriented, they ask more. [...]. Thus, the communication has to be directed to all senses. (N1)

We try to get an overview of the child and we also seek to know what they are feeling, communicating with them. (N2)

[...] talking, telling a joke that makes the child smiles, I think this is everything. [...]. We have to know what we're doing, whom we're dealing with, how to deal, knowing what we're going to talk. (N3)

[...] we have to take the opportunities, going there, talking, smiling, playing, showing a happy face. [...] If you have a good time, live it! Do not leave for tomorrow, no. So if the child is well, let's enjoy it, let's give love, let's smile. (N4)

I think it's very important because when there is a child who is terminally ill that we're going to lose him or her and you communicate, you give them support through verbal or non-verbal communication, it makes the child calmer [...]. (N5)

Strategies based in palliative care to minimize the existential suffering of children with cancer

When communication and observation are not carried out, it is possible to identify behavior change presented in children and to recognize if they are feeling good or bad, as the speeches of the deponents show:

There was a child that I weighed the other day and she used to send kisses all the time, but that day she did not even look at me. Her communication was not good, [...]. So if she is not well, we need to check why she is that way. [...] There's something happening. (N6)

Children, sometimes, in end-stage disease, do not communicate through words, but they communicate with through the look, through the touch. We have to understand this, it is a call that they put before us. (N7)

With regard to the care given to the children's specificities, based on verbal and non-verbal communication, the following statements confirm the occurrence of dialogic relationship:

On a daily basis, at the time of the visit we go there, talk to them, with different look, and not acting coldly, just because that patient is in serious condition, without possibility of cure. (N8)

[...] we try to listen, to understand, to touch the patient, to alleviate their suffering, [...]. (N9)

It is the affection. It is a kind word, it is caring about them. (N0)

DISCUSSION

In the transcribed speeches regarding the category Communication and interpersonal relationship between nurses and children with terminal cancer, nurses highlighted the importance of authentic communication, which is an effective way to take care of children with cancer who have no therapeutic possibilities. The statements set out that communication should be directed to all senses - verbally and non-verbally - and that cognitive ability and the level of awareness and consciousness of the child are essential for communication to be compatible with their level of understanding.

The speeches expressed that communication between nurses and children with cancer who have no possibility of cure must have a real presence and willingness to be with the other, understanding them and helping them in this phase of life. In her speech, a participant emphasized that she seeks to have an overview of how the child is feeling through communication. In another speech nurses revealed that the conversation and jokes that make the child smile are greatly important in the care process, so nurses must know how to express themselves and how to deal with this situation, because the child is experiencing the last days of his/her life. A study reveals that the practice of Humanistic Theory is designed with emphasis on the importance of interpersonal relationships so that the practice of care is transformed and the patient is served in a comprehensive way¹⁵.

It is especially through smile and good humour that nurses let emerge up their way to care for them, when they show joy and affection to children. In this regard, the respondents expressed that jokes and good humour should be part of the care to children with cancer, so that they can enjoy every moment of their lives. Humor is a valuable component of communication and loving care in palliative care, in which that good disposition is considered as a dimension of emotional care¹⁶.

The establishment of good humour in the environment where patients without therapeutic possibilities are treated emphasizes the patient's welfare and the importance of relationships, which meets the philosophy of palliative care⁷_. In this practice, humor is an important component of communication and loving care, since it is considered as a dimension of emotional care, provides therapeutic relationships that minimize the distress related to the complex terminally condition of patient and protects their dignity and their values. In another speech, the interviewee highlighted the importance of good communication and points out that it calms down the child in this end-of-life process.

In this perspective, palliative care are based on a comprehensive and active conception of therapy, from practical aspects of daily life to the existential questions, because these aspects and issues affect the human being in all dimensions and are characterized by total pain, which was defined by Cicly Saunders in 1964 as a complex set of physical, emotional, social and spiritual elements, since he understands that the painful experience lived by the patient demands care that transcend the physical dimension of the body and perceive the man as a complex being, because he has a wide subjective dimension that is part of a context of relationships¹⁵.

Based on this understanding, regarding the category Strategies based in palliative care to minimize the existential suffering of children with cancer, we can infer that it is essential for nurses to identify precisely the needs of these children with cancer through authentic communication and observation during their care practice.

In her previous testimony, a respondent said that when caring for these children, she is concerned to identify their needs and meet them. However, she emphasizes that nurses should be attentive to nonverbal communication and that she values her perception in expressing herself through the look and the touch.

Paterson and Zderad consider that participation in this process depends on the accessibility established between the people involved, since it promotes proximity in the relationship. The authors state that each person has its own uniqueness. Thus, interrelation occurs when the nurse serves the patient and performs activities along with them¹⁰.

Therefore, in palliative care, patient care should be more humane and holistic, through touch, look, word and listening to meet patients' needs, considering them as a single being in the I-thou relationship, established (in the case of this study, among the nurses and the child) with the encounter, preceded by the child's call.

In this dialogical relationship, represented by the authentic communication that happens when nurses are willing to answer children's calls, the being-with and being-there are present. In this communicative act, the nurses make themselves available to meet children in their specificities, using the skills of verbal attention, which is characterized as the dialogical aspect of Nursing, and of nonverbal attention, in which the patient is perceived as a single being in interpersonal relationships of care. In a study conducted in Sydney, Australia, it is reported that effective communication is a vital component of nursing care¹⁷_.

The needs of children who are hospitalized are provided by nurses when they care about what they are feeling. That means that verbal or non-verbal communication promotes a bond between the child and the nurses and strengthens the emotional bond between nurses and patients, providing an inter-subjective relationship with emphasis on the individual needs of each patient¹⁸. In another study, it was demonstrated that nurses who experience the end of life of a child with cancer in palliative care establish links within this framework, which allows them to develop a care with special meaning and attention, through the provision of a loving care¹⁹.

So either the act of caring is verbal, nonverbal or both, a silent look or a physical presence imply some degree of inter-subjectivity, which guarantees the recognition²⁰_. Therefore, the act of looking, seeing and perceiving the other, in its fullness, is a co-relation of revealing the welfare of that other⁸, and the nurse must meet not only to the child's needs, but also those of their families, in a relationship of love and affection. The importance of expressions of affection was found in a work about human relationships, in which authors stated that when the nurse provides such a feeling to that patient who experiences the end of life, this professional feels inner peace²¹_. Thus, nurses who care for those children should direct their care mainly to answer their calls, providing them more physical, emotional and spiritual comfort.

CONCLUSIONS

Guided in palliative care and with emphasis in the dialogical relationship between the nurse and the child with cancer, the practice of nursing care directs this professional to the therapeutic process grounded in a universal humanistic system of values, such as respect, affection (for oneself and for others) and care, that favor their growth and the growth of the being who is cared for (in this case, the child).

The present research revealed, in the first category, that nurses recognized the importance of verbal and nonverbal communication with children with cancer in palliative care, according to their level of understanding, with good humour and jokes, and through an authentic I-thou relationship. It also evidenced that communication, directly or indirectly, appears as an effective element of care for the child who experiences the process of end of life and that it is fundamental to promote a humanistic nursing care.

In the second category, the results announced the importance of recognizing the real bio-psycho-spiritual state of children in order to meet them according to their specific needs. Thus, it was emphasized attention to nonverbal communication of children, through look and touch.

As for the limitations of this study, we can mention the small number of participants, which prevents generalization of the results, and the paucity of empirical data similar to the Brazilian nursing, which made it impossible for the data generated to be compared with more depth.

Thus, further studies are recommended, so that new elements may emerge in order to raise the expansion of knowledge about palliative care guided by the Humanistic Theory, as a key strategy to support its practice directed to children with terminal cancer.

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