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Artigo 2 a2 2013 spirituality in-childhood-cancer-care 100813

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  • 1. Neuropsychiatric Disease and Treatment Dovepress open access to scientific and medical research Review Open Access Full Text Article Spirituality in childhood cancer care This article was published in the following Dove Press journal: Neuropsychiatric Disease and Treatment 8 October 2013 Number of times this article has been viewed Nádia Nara Rolim Lima 1 Vânia Barbosa do Nascimento 1 Sionara Melo Figueiredo de Carvalho 1 Modesto Leite Rolim Neto 2 Marcial Moreno Moreira 2 Aline Quental Brasil 2 Francisco Telésforo Celestino Junior 2 Gislene Farias de Oliveira 2 Alberto Olavo Advíncula Reis 3 Health Sciences Postgraduate Program, ABC Region Medical School, Santo André, São Paulo, Brazil; 2 Department of Medicine, Federal University of Ceará, Barbalha, Ceará, Brazil; 3Public Health Postgraduate Program, University of São Paulo, São Paulo, Brazil 1 Abstract: To deal with the suffering caused by childhood cancer, patients and their families use different coping strategies, among which, spirituality appears a way of minimizing possible damage. In this context, the purpose of the present study was to analyze the influence of spirituality in childhood cancer care, involving biopsychosocial aspects of the child, the family, and the health care team facing the disease. To accomplish this purpose, a nonsystematic review of literature of articles on national and international electronic databases (Scientific Electronic Library Online [SciELO], PubMed, and Latin American and Caribbean Health Sciences Literature [LILACS]) was conducted using the search terms “spirituality,” “child psychology,” “child,” and “cancer,” as well as on other available resources. After the search, 20 articles met the eligibility criteria and were included in the final sample. Our review showed that the relation between spirituality and health has lately become a subject of growing interest among researchers, as a positive influence of spirituality in the people’s welfare was noted. Studies that were retrieved using the mentioned search strategy in electronic databases, independently assessed by the authors according to the systematic review, showed that spirituality emerges as a driving force that helps pediatric patients and their families in coping with cancer. Health care workers have been increasingly attentive to this dimension of care. However, it is necessary to improve their knowledge regarding the subject. The search highlighted that spirituality is considered a source of comfort and hope, contributing to a better acceptance of his/her chronic condition by the child with cancer, as well as by the family. Further up-to-date studies facing the subject are, thus, needed. It is also necessary to better train health care practitioners, so as to provide humanized care to the child with cancer. Keywords: spirituality, child, child psychology, neoplasms, cancer Introduction Correspondence: Modesto Leite Rolim Neto Faculty of Medicine, Federal University of Ceará, Rua Divino Salvador, S/N, Rosário, Barbalha, Ceará, Brazil Tel +55 88 9691 1385 Fax +55 88 3572 7201 Email modestorolim@yahoo.com.br Childhood cancer has an enormous impact on the lives of children and their families, forcing them to face stressful experiences, full of anguish, fear and suffering.1,2 Generally, cancer involves a prolonged treatment that demands care and implies several changes, such as adaptations to new routines, new discourses, new situational settings regarding uncertainties about the treatment course, anxiety and fear of dying, changes in affective and emotional contexts, and concerns about financial welfare and family cohesion, bringing feelings of doubt and impotence.3 This context can lead the child and the relatives to depressive states, discouragement, hopelessness, confusion, and exaustion.2 Receiving a cancer diagnosis is an intense personal experience, based on universal, cultural, and familiar meanings. To deal with the suffering caused by cancer, patients 1539 submit your manuscript | www.dovepress.com Neuropsychiatric Disease and Treatment 2013:9 1539–1544 Dovepress © 2013 Lima et al. This work is published by Dove Medical Press Ltd, and licensed under Creative Commons Attribution – Non Commercial (unported, v3.0) License. The full terms of the License are available at http://creativecommons.org/licenses/by-nc/3.0/. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Ltd, provided the work is properly attributed. Permissions beyond the scope of the License are administered by Dove Medical Press Ltd. Information on how to request permission may be found at: http://www.dovepress.com/permissions.php http://dx.doi.org/10.2147/NDT.S42404
  • 2. Dovepress Lima et al and their relatives use different coping strategies, and patients frequently use spirituality to cope with the disease.1,4,5 Spirituality is described in a broader sense than religion, being related to issues such as the meaning and purpose of life, and using spiritualistic beliefs to seek these answers.6 In 1988, the World Health Organization (WHO) deepened investigations regarding spirituality, which was included in the WHO multidimensional definition of health. Nowadays, spiritual welfare is still considered a health dimension, among physical, psychic, and social dimensions.7 Especially regarding cancer patients, spirituality seems to involve the search of the meaning and purpose of life, improving the quality of life of the child and his/her family. Scientific studies are being carried out to investigate possible influences of spirituality in human health. Spirituality has also been considered a dimension that must be included in a global care to the patient.8 The purpose of this study was to analyze the influence of spirituality in childhood cancer care, involving biopsychosocial aspects of the child, the family, and the health care team facing the disease. Methods The present study is a nonsystematic review of literature. At first, a search of the literature was conducted via national and international electronic databases (Scientific Electronic Library Online [SciELO], PubMed, and Latin American and Caribbean Health Sciences Literature [LILACS]) using different combinations of Medical Subject Headings (MeSH) terms “spirituality,” “child psychology,” “child,” and “cancer,” and equivalents in Portuguese. Additional references were also gathered from the reference lists of the retrieved articles. The title and abstracts of the retrieved articles were entirely read, and a matrix including title of journal/article, year of publication, subject, and type of publication was done. The search strategy and the retrieved articles were reviewed separately by the authors to ensure adequate sampling. The article analysis followed previously determined eligibility criteria. Inclusion criteria were as follows: (A) articles about spirituality in childhood cancer care; (B) manuscripts written in English or Portuguese; (C) recent manuscripts regarding the subject; (D) original articles with online accessible full text available in Coordination of Improvement of Higher Education Personnel (CAPES) Journal Portal, a virtual library linked to Brazil’s Ministry of Education and subjected to content subscription;9 (E) prospective or retrospective observational (analytical or descriptive, except case reports), 1540 submit your manuscript | www.dovepress.com Dovepress experimental or quasi-experimental studies, and reviews of literature. Exclusion criteria were: (A) other designs, such as case reports and series of cases; and (B) nonoriginal studies, including editorials, brief communication, and letters to the editor. Results After carrying out the search strategies and analyzing title and abstract according to the eligibility criteria, 20 articles were retrieved and included in the final sample. From this total, ten (50.0%) manuscripts1,10–18 were found in PubMed database, four (20.0%)5,19–21 retrieved in SciELO database, one (5.0%)4 was found in LILACS database, and five (25.0%)2,7,8,22,23 manuscripts were found in the reference lists of the retrieved articles. Table 1 provides an overview of all studies included in the final sample and of all data elements used during the data analysis process. Study designs included only nonexperimental studies. The 20  studies were distributed in the previously determined two categories as follows: importance of spirituality to patients, their families and caregivers; and strengthening of spirituality in the health care context. Discussion The relation between spirituality and health has lately become a subject of growing interest among researchers, as a positive influence of spirituality in the people’s welfare was noted. The studies retrieved in the present review adopt a global view of health, dealing with subjects in their different dimensions and overcoming the biomedical model, which only highlights the physical aspect of the health–disease process and acts as a mechanistic idea of the body and its functions, being responsible for a fragmented treatment.22 An observational study by Batista et  al4 show that the patient’s quality of life regarding peace aspects is higher the more the patient’s level of spirituality. This evidences that, more than only focusing on the disease, it is also important to consider the patient’s subjective aspects, to transmit inner peace.4 Importance of spirituality to patients, their families, and their caregivers Consciously or unconsciously, children may somehow participate in a spiritual life. They express their spirituality by a variety of behaviors, such as rite simulation and games involving creativity. Studies show that children who develop their spirituality and have spiritual care have more Neuropsychiatric Disease and Treatment 2013:9
  • 3. Dovepress Spirituality in childhood cancer care Table 1 Spirituality in childhood cancer care: studies and main findings Authors Journal Category Main findings Batista et al Revista Bioética Importance of spirituality to patients, their families, and their caregivers Foster et al10 Seminars in Oncology Nursing Strengthening of spirituality in the health care context Kamper et al11 Journal for Specialists in Pediatric Nursing Importance of spirituality to patients, their families, and their caregivers Faria et al1 Estudos de Psicologia (Natal) Importance of spirituality to patients, their families, and their caregivers Angelo et al2 O Mundo da Saúde Fornazari et al5 Psicologia: Teoria e Pesquisa Pedrão et al8 Einstein Importance of spirituality to patients, their families, and their caregivers Importance of spirituality to patients, their families, and their caregivers Strengthening of spirituality in the health care context Alves et al22 O Mundo da Saúde Strengthening of spirituality in the health care context Mueller et al15 Pediatric Nursing Strengthening of spirituality in the health care context Nascimento et al20 Angelo et al23 Acta Paulista de Enfermagem Escola Anna Nery Revista de Enfermagem Strengthening of spirituality in the health care context Importance of spirituality to patients, their families, and their caregivers Hinds et al12 Journal of Clinical Oncology Importance of spirituality to patients, their families, and their caregivers Schneider and Mannell13 Issues in Comprehensive Pediatric Nursing Importance of spirituality to patients, their families, and their caregivers The study showed that the higher level of spirituality, the greater quality of life regarding peace. This conclusion leads to the reflection that it is important to focus not only on the disease, but also on the subjective aspects that provide inner peace. Spiritual care includes the creation of environments in which children and their families can continue to grow, especially throughout the illness experience. Attending to a person’s spirit respects the inherent inseparable relationship of mind–body–spirit and honors and responds to the core being of each person, recognizing his or her uniqueness. Children’s care will be enhanced when given the opportunity to express their spiritual and relational concerns. Children’s responses were primarily relational in nature, particularly to their parents. Seventy-eight percent of the interviewees reported they did something to “feel close to God.” Children prayed for a “sense of normalcy” (59%) and relational concerns (31%). The study confirms, through a qualitative approach, that the possibility of giving a meaning to the disease (eg, God’s will), diminishes feelings of guilt of the caregiver. Beliefs and spirituality give meaning to life, mitigating conflicts created by suffering and unexpected situations. Results of the study evidenced that suffering from cancer diagnosis of a child stimulates in the family a new way of looking at life, and that spirituality can have different meanings to the family while dealing with the disease. All participants referred to having a belief before receiving the diagnosis. However, this belief was deepened, and they hold to it more frequently after diagnosis. The assessment of spiritual welfare of nurses showed that the majority of the nurses presented positive scores. It was considered important to offer the patient spiritual assistance. However, the majority of the interviewed nurses reported not having received a professional training on spiritual assistance in their graduation courses. Spirituality/religiosity of patients is not fully comprehended. This can be due to lack of training or sensibility of health care professional. The study shows that it is important to overcome the biomedic model and the fragmented view of the patient, so as he/she can be treated as a whole. Children are born with “spiritual competence,” an inner quality or power for faith development. Increased demands on time and rapidly changing complex medical cases allow less time and energy directed toward spiritual issues for the nurse, while at the same time increasing the possibility of spiritual needs of the child and family. Religion and spirituality are sources of comfort and hope and have helped children and adolescents to better accept their chronic condition. The mother needs to find support in faith, in “something” that transcends her strength and people’s support. It is important for the mother to have a place where she could feel comforted in the moments of fragility and practice her spirituality. Among parents whose child died in a pediatric intensive care unit, 73% identified faith-based sources of comfort at the end of their child’s life. Four religious themes were identified: prayer, faith, access to clergy, and belief that the parent–child relationship endures beyond death. Faith is important to some parents at this point in their child’s care. Clinicians can support parents’ faith-related practices by asking about parents’ beliefs, religious symbols, or practices and asking how clinicians can best show their respect. Data show that spirituality and faith, no matter how they are defined, appear to be important factors in the childhood cancer journey. Most parents in this study described their spirituality as being an effective coping mechanism. Not all parents defined spirituality from a purely religious perspective, though. During these difficult times, parents questioned their beliefs but did not turn away from their faith. 4 (Continued  ) Neuropsychiatric Disease and Treatment 2013:9 submit your manuscript | www.dovepress.com Dovepress 1541
  • 4. Dovepress Lima et al Table 1 (Continued) Authors Journal Category Main findings Moreira-Almeida et al19 Revista Brasileira de Psiquiatria There is enough evidence that religious involvement is frequently associated with a better mental health state. Ross16 Journal of Clinical Nursing Paro et al18 Arquivos de Ciências da Saúde Importance of spirituality to patients, their families, and their caregivers Importance of spirituality to patients, their families, and their caregivers Strengthening of spirituality in the health care context Kane et al14 Journal of Pediatric Oncology Nursing Strengthening of spirituality in the health care context Lemos et al21 Revista LatinoAmericana de Enfermagem Cancer Nursing Strengthening of spirituality in the health care context Social Science and Medicine Strengthening of spirituality in the health care context Taylor17 WHO7 Strengthening of spirituality in the health care context Clients and their families should benefit from care which is more holistic and addresses their deepest concerns and needs. The study identified that the caregiver is a complex being with feelings, needs, difficulties, and perceptions regarding his/her surroundings, but with a limited ability to cope with and change stressing situations, such as death in childhood. The concept of stress-buffering may also be relevant in spiritual support. Many agree that the keys to emotional coping with serious illness and disability are frequently found within the matrix of spirituality. Improved understanding of the social and spiritual support process will allow us to implement interventions designed to minimize the suffering and improve the quality of life of children living with and dying from serious illnesses and their families. The study involved patients subjected to intrathecal chemotherapy and showed that patients find in spirituality, whether through beliefs or prayers, a coping strategy to face the challenges presented by the disease. The study identified spiritual needs associated with an “ultimate other;” the need for positivity, hope, and gratitude; the need to give and to receive love; the need to review beliefs, the need to have meaning; and needs related to religiosity and preparation for death. The WHOQOL includes a spiritual dimension (the person’s perception of “meaning in life” or the overarching personal beliefs that structure and qualify experience). We have argued elsewhere that the broad physical, psychological, social, and spiritual domains of quality of life are universal values across cultures, and there is some evidence that this is so. Based on the focus group data, several revisions were made to the proposed structure of the instrument. For example, religion and spirituality were consistently suggested as important dimensions of quality of life. Abbreviations: WHO, World Health Organization; WHOQOL, World Health Organization Quality of Life. positive coping strategies, sharing resilience as a protection factor.15 The practice of spirituality in childhood cancer care involves not only the patient, but also the family of the pediatric patient. Schneider and Mannell,13 in a study conducted among parents of children with cancer, demonstrated that there is a need for orientation by a spiritual counselor, highlighting the importance of spirituality to the family, in a situation of disease. The majority of the parents find it difficult to deal with their faith when the child’s health state worsens; faith was also cited as a source of comfort and as an extremely personal issue. During difficult times, some parents questioned their beliefs, but they did not have their faith shaken. In this sense, the health care professional can give support to the spiritual practices of the parents, volunteering to pray with them, if they feel at ease doing so.13 In cancer, suffering often becomes a part of the routine of the children and their families. The experience of childhood 1542 submit your manuscript | www.dovepress.com Dovepress cancer suffering has been described, highlighting the narratives of uncertainty related to the treatment process. The impact of uncertainty to the family reflects in the moments of confusion, despair, worries, exhaustion, discouragement, that are peculiar to the suffering regarding the battle against cancer.2 Another study, one that focused on the mothers’ needs while facing the difficulties of
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