RESEARCH ARTICLES
Nurses’ work with children with cancer: palliative care
Ana Claudia Moreira MonteiroI; Benedita Maria Rêgo Deusdará RodriguesII; Sandra Teixeira de Araújo PachecoIII; Luana Sena PimentaIV
IMaster. Substitute Professor, Department of Maternal and Child Nursing, School of Nursing at the State University of Rio de Janeiro. Professor at the University Estacio de Sá. Rio de Janeiro, Brazil. E-mail: ana-burguesa@hotmail.com
IIProfessor, Department of Maternal and Child Nursing, School of Nursing at the State University of Rio de Janeiro. Brazil. E-mail: benedeusdara@gmail.com
IIIAssociate Professor, Department of Maternal and Child Nursing, School of Nursing, State University of Rio de Janeiro. Brazil. E-mail: stapacheco@yahoo.com.br
IVMasters Student at the School of Nursing at the State University of Rio de Janeiro. Nurse Care at Center for Bone Marrow Transplantation of the National Cancer Institute José de Alencar Gomes da Silva. Rio de Janeiro, Brazil. E-mail: luanaipb@yahoo.com.br
VClipping of dissertation entitled Nursing care for hospitalized children, carrier of oncological diseases and with no chance of current healing and their family, School of Nursing, State University of Rio de Janeiro, 2012.
DOI: http://dx.doi.org/10.12957/reuerj.2014.15665
ABSTRACT: This qualitative study aimed to learn about the work of nurses caring for children with cancer in palliative care. The research was carried out during June and July 2011 with 14 nurses assigned to a pediatric hematology-oncology ward at a federal hospital in the municipality of Rio de Janeiro. Their statements were taken through semi-structured interviews. The data were submitted to Bardin content analysis, as a result of which, six analytical categories emerged: comforting the child; caring for the of family; meeting the child’s needs; providing the child with quality of life; providing spiritual, emotional and religious support; and being closer to the child, and actively available. In conclusion, nurses treat children in palliative care in a unique manner guided by understanding, tenderness and respect for child’s and the family’s needs.
Keywords: Oncologic nursing; child; pediatric oncology; palliative care.
INTRODUCTION
Pediatric cancer is the set of cancers that affect children under 15 years old; they generally have embryonic origin, from reticule-endothelial system, central nervous system, connective tissue and viscera1.
Childhood cancer was considered an acute disease with poor prognosis. Currently, it has high possibility of cure, with increased potential for survival in approximately 70% of cases. This progress was due to the sophistication of clinical trials, of advanced technology and the multidisciplinary care provided to these children, focusing on the humanization of care and concern of the staff with the patient and their family2.
Even with the technological advancement of current therapies in pediatric oncology, many children fail to achieve cure, so palliative care was implemented.
These initial considerations enable reflection on the care of the nurse with the child in palliative care and arose the following question – what kind of care does the nurse perform to this child?
The study investigated the actions of nursing care to the child with cancer in palliative care.
LITERATURE REVIEW
Treatment is specialized according to child's metabolism, tumor biology and therapeutic approaches, achieving goals of healing even in disseminated disease, increasing survival rates and minimizing the late effects of treatment. Therapeutic success depends on local and systemic control of the disease and support for the side effects. Chemotherapy, surgery, radiation therapy and clinical support are part of the treatment3.
The World Health Organization (WHO) defines palliative care as an approach that improves the quality of life of patients and their families facing the terminal illness, through the prevention and relief of suffering by means of early identification, impeccable assessment and treatment of pain and other physical, psychosocial and spiritual problems4.
In pediatrics, palliative care is defined as an organized program, geared toward children with limited life due to a currently incurable disease. It becomes effective in controlling symptoms and when psychological and spiritual support is provided for the patient and support to the family in making decisions2.
Therefore, the nurse working in palliative care should play them from a humanistic vision, that despite the impossibility of cure, their relationship with the patient should not stop happening, which may bring benefits to both5.
METHODOLOGY
This descriptive study with qualitative approach was developed in the onco-hematology wards of pediatric inpatient sector of a public federal hospital specialized in oncology, located in the municipality of Rio de Janeiro.
This hospital was chosen because it is a national reference in oncology and has contributed to innovations in service, research and professional training in this area.
Study participants were 14 nurses who met the inclusion criteria, i.e., who performed direct care to children with cancer in palliative care and their families, who worked with this customer for over a year and that showed interest in participating in this research.
To consider the proposed ethical principles for conducting research with human subjects, the project was referred to the Ethics and Research Committee of the institution where it was developed, and it was approved with Opinion No. 043/11.
The anonymity was guaranteed with the use of a pseudonym with flower name of their choice, and all participants were informed about the confidentiality of information collected, as well as the right to withdraw their participation at any stage of the research. After reading the Informed Consent aloud, along with the research subject, and made the necessary clarifications, the signature of each term was asked, and the term was signed and dated by the participants.
The capture of the speeches was performed with semi-structured interviews conducted in the period from June to July 2011, and was guided by the question: What care actions do you develop with the child in palliative care?
Interviews were recorded in music player (mp3), in order not to not lose any of the content of the statements and so that respondents could establish a more direct and empathetic relationship with the interviewer. After its completion, they were transcribed for later analysis.
Limitation of the number of participants obeyed the saturation data technique – it was closed when the testimonies began to repeat themselves.
The treatment of information obtained during the interview, is grounded in the content analysis of Bardin6, thematic mode, allowing the encoding, deployment, clustering and summary of statements, resulting in six analytical categories: Giving comfort to the child; Taking care of family; Meeting the needs of the child; Providing quality of life to the child; Providing spiritual, emotional and religious support; Being closer to the child, showing availability.
RESULTS AND DISCUSSION
Giving comfort to the child
The nurses interviewed, when performing care to children, have emphasized as a major concern the need to comfort this child before his state of illness. The action of comforting is a possibility of providing benefits, improving the child's condition.
Providing comfort. We provide comfort. So, what I do is to provide comfort, I think that is the main thing for the child. (Rose)
The first concern, when I take care of children with no chance of cure, is to provide comfort, to bring to the child as much benefit as I can for them. (Lily)
Importantly, in palliative care, measures of support and comfort for the relief of suffering, due to the advancement of the disease, should be prioritized seeking the well-being of this child2.
Strategies that require attention from the staff imply commitment to offer comprehensive care to improve the quality of life of children and their families, highlighting interactive actions that are based on the relationship of respect and appreciation of the cared being, aiming to systematically promote healthy supplies to provide comfort7-9.
The objective of pediatric palliative care includes physical, psychological, educational, social and spiritual goals. This care is aimed at improving lives, reducing suffering and comforting the child-family binomial7-9.
Meeting the needs of the child
Nurses recognize in their act of care the importance of meeting the needs of the child, not just in relation to the presented symptoms, making the diagnosis than they need, but especially for what they are feeling at that moment.
A child considered with no chance of cure, I seek to know her need, at that moment ... [...] we try to provide directed care, based on what the patient needs daily. Today, a conversation can be important, the care, feeding and the shoulder itself, so I try to monitor, to diagnose what the child and family need ... [...] (Lily)
I care to know what her greatest need at that moment is. If it is pain, or if it is just eating something that she is in the mood, or if she wants to see somebody of family she is missing. So we should not think that her need is what we are evaluating at the moment [...]. (Orchid)
Care actions must not only cling to accomplish technical assignments, performing procedures on palliative practices, but should also represent a link, informing, guiding, devoting time to family and to the child; letting them express their feelings, fears, desires and hopes; thus allowing them to experience and create conditions for coping this process10.
Caring involves simple attitudes and actions such as touching, listening, being sensitive and perceptive to the suffering of others, helping them in performing their daily activities, that the person at that time of life, cannot accomplish. This needs to be provided with affection and attention9,10.
Therefore, assistance to children with cancer should encompass the physical, psychological and social needs, including personalized assistance, promotion of a traumatic care, preparation of procedures and the adoption of measures for the relief of pain and discomfort, and including the family in the care process11-13.
In this sense, it is perceived that professionals are aware of the humanistic character of care implementation, evaluating and providing welfare to those customers, always trying to minimize suffering, conducting a targeted and individualized care for each child.
Always controlling pain, oxygen, gastrointestinal aspects, because as she [the child] takes too much medication, soon they [at the institution] come and give her [child] opioid, and she [child] will stay with a more pronounced constipation. You have to see the food supply also, because since she already has all changed, she will not feel hungry, then she will not want to eat. Then you pass a probe on that child or you will give what she most likes to eat [...] because it is a cancer patient, the child feels a lot of pain, so we try to minimize this pain [...] (Rose)
I do the drugs, so that there is no pain, no suffering. I pass a probe, if the child is no longer able to feed, so that she does feel hungry, I think we try to put the needs of each child as stable as possible, good hydration, good analgesia, a respiratory support. (Red Rose).
Pain is considered one of the most constant symptoms of disseminated cancer. Pain control is considered a basic quality of life principle, but in children the treatment of pain is quite critical, due to the difficulty of measuring the magnitude of pain in this age group2,7.
The care provided by these nurses is focused on procedures to minimize pain and suffering, characteristics of this phase of the disease. What makes nurses very sensitized is the intensity of pain, seeking measures to improve it, always in the step that precedes each procedure. Thus, palliative care is developed by these professionals in order to protect the dignity of the child whose life has value even without outlook of cure3.
The pain experienced by the patient in palliative care is a complex pain, including physical, mental and spiritual aspects; before pain, the professional should value the holistic care so that the family can feel contemplated in their expectations, mainly that the child has no pain10.
Providing quality of life to the child
Nurses interviewed have in mind the quality of life of children who are under their care and always concern to do the best they can to give more life to the days left to the children, making them feel their best. They worry about the possibilities of the child, accomplishing their desires.
To give quality of life for these children, we have to give the best care ... [...] I will do my best. (Chrysanthemum)
Trying to improve the quality of her days [...] What I think it is important, it is what we try to do, to give life to the days left for these children ... [...] So, trying to give, making these days good, is to give life to these days, is to give a quality, life. Days of joy, days of satisfaction, days without pain, days without dyspnea, a day without nausea, no fatigue. (Violet)
The objective of palliative care is to achieve the best quality of life for patients and their families. Therefore, the maintenance of quality of life and the appreciation of time left for these patients constitute the fundamental principles of palliative care for cancer8-10
From the perspective of quality of life, nurses emphasize the act of playing as something to be valued in their care action. Playing promotes distraction and allows refuge of that special time child is living.
It is the patient’s welfare, above all, [...] that he can even play, because there are many patients, with no chance of healing, [...] who can play, you know? So, you have to invest in it, they have to [...] play. (Sunflower)
She should play as much as possible, interacting within her conditions, going to the playroom. (Tulip)
Recreational resources are used as a mitigating feature of the difficult process of hospitalization. Its diversity, although not preventing children to experience painful moments, enables them to pour out feelings of anger and hostility caused by the treatment and its consequences. Besides contributing to the rapprochement between all the people involved in the hospitalization process, it contributes to the enrichment and humanization of the hospital environment. For children, playing is the primary activity in the hospital, because the playful function is funny and provides distraction, joy and pleasure12-14.
The games are part of the work of children of all ages and have a prominent role in their development, being essential for mental, emotional and social well-being14.
Playing becomes more bearable and less traumatic for the child hospitalization, produces relaxation, provides a means to relieve stress and express feelings, decreases stress of separation and feelings of being away from home, helping the child to feel more secure in a strange environment14.
So, playing is a need both when the child is healthy and in a disease process, and it is important for their development. Through playing, the child creates, socializes, learns, and represents roles. For children with cancer, playing facilitates coping with situations that are difficult to control, such as the need for hospitalization, separation from family, school and friends, invasive and painful procedures. The need to play always exists, even in child's hospitalization15.
Providing spiritual, emotional and religious support
The nurses interviewed focus on the importance of spiritual, emotional and religious support as a form of human care, which is inherent in being, and how that help differentiates the essence of caring. All indicate that this support brings more acceptance, tranquility and how the power of prayer can cherish in those times of emotional breakdown.
Emotional support; if they need, spiritual support, talking about religion, even though it is not mine [...] we have to give all the support. I do not do anything, if I have to stand with a child all night, to stay there, giving emotional support ... [...] even when they want someone of their religion to go there, in order to give spiritual comfort. And I think that emotional support is not only psychology, I think it is nursing being there. (Rose)
Sometimes, I prayed for him, grabbed his hand and they hold mine so tight, and thanked me so much ... [...] but if you touch them and speak a kind word, regardless of religion, if they accept, they can overcome this moment of fear ... [...] then I think there is always a ground; there, he always has something to pass on to you, even when he said, lady, I will die, hold my hand. He said this to me, I held. Lady, pray for me, lady, do not let me die. [...] This strengthens you; you can give more hope for their mother and them ... [....] (Red Rose)
Quality of life defines all aspects of patient’s well-being, including spiritual health. Thus, aiming to cover the psychic and spiritual pain, it is necessary to consider the religious expressions of the patient, which play a crucial role in the full development of the individual9.
The world experienced by all men shows the need for each to feel able to provide support to each other in a state of desperation, seeking subsidies in faith, in love, according to the humanitarian legacy. In this inter-subjective world, the interaction occurs between the nurse, the child and family, building us, that allows mutual understanding and consent that occur in the common situation of give and receive support, whether emotional, spiritual or religious level16.
Being closer to the child, showing availability
Respondents talked about the importance of availability, of touch, the warmth, the hug as a support for the child in a difficult time, emphasizing that affection, in its subjective character, has a significant moral effect, and that to be present, along with the child, becomes her more confident to face what lies ahead.
I try to always be present, so I always try to get a time of my duty, my daily life, in care of the child. It is not because we have nothing to do to cure the disease, that we cannot do anything for the child ... [...] And, also, I talk to the child, even without her interact with me, because I believe she may be listening, we do not know to what extent the child is conscious, or how far she is not ... [...] (Orchid).
And some children need us there, 24 hours on their side, and we stayed. Most professionals working in oncology has that availability and knows that the professional will be needed there, on the side. Always guiding, helping, because the mother alone cannot do it, and sometimes they get lost, need help from a qualified professional of nursing. [...] We are there, all the time, I think that both the nurse and the technician standing there, talking to the mother and the child, trying to cheer up, trying to improve the mood. (Rose)
The presence experienced in the face to face relationship, that occurs through an intentional turn by the nursing team to the child and his family in the attitude of being close and show available to those children and to promote a direct inter-subjective intercom. This relationship between the nurse and these people are guided in an emotional involvement between similar, is a direct result of lived experience between them 16.
Nurses emphasize care and their influence in assisting the child as a living in their everyday life that reinforces their human side face of situations that they live.
Taking care of family
When caring for a child in palliative care, nurses include family in that care, through attitudes such as a conversation, a hug, a shoulder to allow comfort to the suffering caused by such a difficult disease. Some of these professionals have revealed that in order to care of the family, they listen, knowing their problems, tranquilizing them, standing together, looking for something to mitigate that moment.
I try to perform my assistance is focused [also] in parents. Not only in children, because they also need our care, and it is up to us to focus our assistance more in parents, because it is not easy to know how to deal with this. (Chrysanthemum)
You go there, talk with the family member, try to console, try to minimize his suffering, he is suffering now because he knows that tomorrow it is going to be tricky, because the child will already start to receive palliative care. [...] So I try to give as much support for this family. Sometimes, you see that they [family] go to the nursing station, and do not want to ask anything, they just want attention because they are alone, they are in darkness, and only want a little light, then you give a shoulder, it helps a lot. (Rose)
The family is an important part of this context, actively participating in palliative care, because they are all the time with the child, causing sometimes imbalances within the family, because all the attention has been centered on the child that got ill, and that there is no more chance for healing, bringing to them a great sense of loss2.
Sensitive listening to the family and the child provides a therapeutic environment of care and attention and open communication, trust, solidarity, care, worrying and being present in supporting, managing symptoms and relieving suffering17-22.
Thus, the insertion of the family throughout the care process becomes essential for the necessary care for the child, and also to have space for expression and listening to their suffering and learning to deal with the problem17-22.
Among the limitations of the study, we highlight the complexity of the phenomenon of inter-subjectivity of sharing the experience with others. It is worth noting that the purpose of qualitative studies does not aim to generalize the findings.
CONCLUSION
From the testimonies of nurses, the following categories emerged: Giving comfort to the child; Taking care of family; Meeting the needs of the child; Providing quality of life to the child; Providing spiritual, emotional and religious support; Being closer to the child, showing availability.
This study enabled us to understand that in the face of the child in palliative care and their families, the mode of action of these nurses is based in attitudes to promote comfort and well-being, through kindness and attention, encouraging the fulfillment of wishes, provided they do not cause damage, as well as emotional and spiritual support, so important at this time.
Regarding to care, it can be emphasized sensitive listening, which is performed by nurses, in emotional support to the child and their family, in which they appear to be solicitous to inquiries and seek to listen to that family, which is in despair before an inevitable outcome, by comforting and welcoming them.
The nurses interviewed are committed to the care of children in palliative care, being available and looking to do the best possible for these clients, because even if it is not possible to obtain the cure, the child still has life and need to be cared for. At that moment, the affection and attention are highlighted in care, promoting comfort and quality of existential time left to the patient, capturing their needs to serve them properly.
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