Scientific Production of Nursing Care for Children with Chronic Conditions: Integrative Review Produção Científica Do Cuidado Do Enfermeiro À Criança Com Condição Crônica: Revisão Integrativa Producción Científica Del Cuidado Del Enfermero Al Niño Con Condición Crónica: Revisión Integrativa

Objective: to investigate the scientific production about the direct and/or indirect nursing care for children with chronic conditions. Method: it is an integrative review conducted in February 2012 in the databases LILACS (Latin America and Caribbean Health Sciences Literature), IBECS (Spanish Bibliographic Index of Health Sciences), BDENF (Brazilian Nursing Database), MEDLINE (Medical Literature Analysis and Retrieval System Online), using the followings descriptors “Pediatric Nursing”, “Chronic Disease” and “Nursing Care”, in a accordance with the inclusion criteria. Results: the final sample consisted of eleven papers. The studies selected have revealed an appreciation of the family, as a unit of assistance and recognition in relation to the care for children with chronic conditions, as something complex. Conclusion: the data analysis allows us to infer that there is the need for bigger studies about this theme with the purpose of deeply exploring the complexity of the nursing care towards this clientele. Descriptors: Pediatric Nursing; Chronic Disease; Nursing Care. RESUMO Objetivo: investigar a produção científica acerca do cuidado direto e/ou indireto do enfermeiro à criança com condição crônica. Método: revisão integrativa da literatura realizada em fevereiro de 2012 nas bases de dados LILACS (Literatura Latino-Americana e do Caribe em Ciências da Saúde), IBECS (Índice Bibliográfico Espanhol de Ciências da Saúde), BDENF (Bases de Dados de Enfermagem) e MEDLINE (Medical Literature Analysis and Retrieval System Online), utilizando os descritores “Enfermagem Pediátrica”, “Doença Crônica”, “Cuidados de Enfermagem”, em conformidade com critérios de inclusão. Resultados: amostra final foi de onze estudos. Observou-se nos estudos selecionados uma valorização da família como unidade de cuidado e reconhecimento do cuidado à criança com condição crônica como complexo. Conclusão: a análise dos dados possibilita inferir que há necessidade de maiores estudos acerca da temática visando explorar em riqueza a complexidade do cuidado do enfermeiro a essa clientela. Descritores: Enfermagem Pediátrica; Doença Crônica; Cuidados de Enfermagem. RESUMEN Objetivo: investigar la producción científica acerca del cuidado directo y/o indirecto del enfermero al niño con condición crónica. Método: revisión integrativa de la literatura realizada en febrero de 2012 en las bases de datos: LILACS (Literatura Latino-Americana y del Caribe en Ciencias de la Salud); IBECS (Índice Bibliográfico Español de Ciencias de la Salud); BDENF (Bases de Datos de Enfermería) utilizando los descriptores: Enfermería Pediátrica, Enfermedad Crónica, Cuidados de Enfermería en conformidad con determinados criterios de inclusión. Resultados: la muestra final totalizó 11 estudios. Se observó en los estudios seleccionados una valorización de la familia como unidad de cuidado, y reconocimiento del cuidado al niño con condición crónica como siendo complejo. Conclusión: el análisis de los datos posibilita inferir que hay necesidad de mayores estudios acerca de la temática, visando explotar en riqueza la complejidad del cuidado del enfermero a esa clientela. Descriptores: Enfermería Pediátrica; Enfermedad Crónica; Cuidados de Enfermería. Nurse, LD PHD and Emeritus Titular Professor at the Federal University of Rio de Janeiro State/Unirio. Professor of the Permanent Staff from the Post-Graduation Program at the Anna Nery Nursing School/UFRJ, Member of the GESPEn/UFRJ and of the GEPECOPEN at the EERP-USP. E-mail: [email protected]; Nurse, Master’s Student at the Anna Nery Nursing School /UFRJ, Member of the GEPSFCA/UFMA and of the GESPEn/UFRJ, Scholarship Student from CAPES. E-mail: [email protected]; Nurse, Master’s Student at the Anna Nery Nursing School /UFRJ, Member of the GEPSFCA/UFRJ and of the GEPSFCA/UFMA. E-mail: í[email protected] ORIGINAL ARTICLE Leite JL, Silva TP, Ítalo Rodolfo Silva. Scientific production of nursing care for... English/Portuguese J Nurs UFPE on line., Recife, 7(8):5330-9, Aug., 2013 5331 DOI: 10.5205/reuol.3452-28790-4-ED.0708201334 ISSN: 1981-8963 The nursing care for children with chronic condition is revealed as a single and intense experience that requires sensitivity, competence and scientific knowledge from professionals with sights to provide children a quality care. From this perspective, it should be emphasized that care cannot be fragmented, technicist and incomplete, thus needing to be managed in order to contemplate the dimensions of the child with a chronic condition. To do so, it should be highlighted the importance of multidimensional and complex knowledge, with a view to subsidizing a comprehensive and humanized care. Complex knowledge requires a thought that is able to know and appreciate the many dimensions that comprise the complex reality and that might effectively capture mutual relationships, interrelationships and implications of multidimensional phenomena, starting from a non-linear viewpoint, but integrator, i.e., articulator in the pursuit for multidimensional knowledge. 2 In this sense, and with regard to health care, it becomes necessary that the nursing professional is aware of the multidimensional aspects of children with chronic conditions, assuming a closer gaze towards the biological, social, psychological, emotional, cultural and spiritual aspects of these children and their family members. Thus, the nursing care for children with chronic conditions is presented as a challenge, since it requires from professionals the adoption of attitudes that address the multidimensionality and the needs of these patients. This is a caution pervaded by doubts and uncertainties, particularly those related to the children patients’ future and their new limitations, which is a fact that suggests to nurses to develop strategies to better cope with adversities and unpredictabilities that emerge from their relationship of care with the children and the children's families. Allied to this perspective, there is sometimes a difficulty from nurses in dealing with families and the situation of imminent risk of death of these family's children, which is generally common when it comes to a chronic condition. In this respect, nurses might unveil feelings of helplessness, sense of inadequacy and a disbelief in the available therapeutic measures, which might impact on the quality of care to be offered. 3 Therefore, it becomes crucial having an investment in relational, interactive and retroactive processes during the nursing training, as well as institutions' efforts to promote psychological support to nursing professionals in dealing with these situations. On the other hand, nursing care for children should be extended to the family scope. Thus, literature, especially in relation to Nursing, reveals a failure to provide quality care to children with chronic conditions without including the family in the plan of care. For this purpose, it becomes necessary to know the family and its daily life in order to identify contextual elements relevant to nursing care. Accordingly, it might be understood as a system composed of affective, social and economic bonds, which integrate a specific dynamics. Hence, it should be emphasized that each family is unique and holds its own characteristics, which differentiate them from each other. In general, chronic conditions are considered as long-term and require that people affected by it reorganize their daily lives in such way to find new manners of living life. Thus, the onset of a chronic condition in childhood causes changes in the child's life, as well as in the daily life of all members of the family, which requires adaptation strategies to the new routine imposed by the disease. Under this perspective, it should be inferred that the chronic condition in childhood causes a change in family structure and dynamics, which reaches the routine of family members, as well as its relationships, given that it might be presented in the form of overload and provoke a considerable emotional impairment in those involved subjects, requiring sensitivity and a careful listening from professionals for these situations. Accordingly, the family feels responsible to minimize suffering and ease the effects of the chronic condition of the child, striving to subsidize a growth and development as satisfactory as possible to this creature. It is often a painful experience for parents and, frequently, they need the support from various strands, whether they are material, emotional, informational and emotional, or even, a social exchange. Under this viewpoint, the care, when directed to the family, should provide spaces for dialogue, knowledge, reflection, acceptance, support and strengthening of bonds. To know the family in its particularity and needs, in fact, means, to give value to the otherness as a fundamental dimension in relationships of care. In view of this and aiming at providing a nursing care supported by concepts and critical and/or scientific reflections that promote the theoretical and practical INTRODUCTION Leite JL, Silva TP, Ítalo Rodolfo Silva. Scientific production of nursing care for... English/Portuguese J Nurs UFPE on line., Recife, 7(8):5330-9, Aug., 2013 5332 DOI: 10.5205/reuol.3452-28790-4-ED.0708201334 ISSN: 1981-8963 progress of the profession at stake, it becomes imperative to investigate the scientific production of the nursing care for children with chronic conditions with sights to allow improvements in the production of care towards this clientele. Thus, the following study object was delimited: the scientific production of nursing care for children with chronic conditions, having as the guiding question: What has the literature on nursing care for children with chronic conditions? We have outlined as study object the fact of investigating the scientific production about direct and/or indirect nursing care for children with chronic conditions. The relevance of this study lies in the appreciation of the issue in question, which might mediate the relationships of care among nurses, children and families. We hope that the results can identify gaps in scientific production, in addition to deepen the knowledge of nursing care for children with chronic conditions. It is an integrative literature review, which allows the synthesis of the state of knowledge of a given topic, enabling the identification of knowledge gaps that need to be filled with the accomplishment of new researches. 9 This research method allows the synthesis of several published studies and enables to draw general conclusions with regard to a particular area under study. 10 Accordingly, the integrative review allow us to build a knowledge in Nursing, thereby producing a based and uniform knowledge for nurses performing a quality practice. For its preparation, we have observed the following steps: identification of the theme and development of the study question; establishment of criteria for inclusion and exclusion of studies; categorization of studies; assessment of the studies included in the integrative review; interpretation of results and synthesis of knowledge. After identification of the theme and preparation of the guiding question of the study, we proceeded to the search for information in the literature in the following databases from the site of the Virtual Health Library (VHL): LILACS (Latin America and Caribbean Health Sciences Literature), IBECS (Spanish Bibliographic Index of Health Sciences), BDENF (Brazilian Nursing Database) and MEDLINE (Medical Literature Analysis and Retrieval System Online). The data survey was conducted in February 2012 by using the following indexing descriptors contained in MeSH (Medical Subject Headings): “Pediatric Nursing”, “Chronic Disease” and “Nursing Care”. As to the inclusion criteria for studies, we have considered complete studies with abstracts available in databases in English, Portuguese and Spanish, addressing direct and/or indirect nursing care for children with chronic conditions as the study object and that were indexed in the last ten years. After this stage, in order to ensure a proper collection and organization of data, we have produced a tool containing the following variables: journal, publication year, contexts and situations of care, methodology and main contributions to the Nursing field. Next, we organized them into themes by observing their similarities and differences, going through the following steps: pre-analysis, material exploration and data handling. 12 This organization gave rise to three categories: recognizing the complexity of care for children with chronic conditions; strategies for caring of children with chronic conditions and valuing the family as the unit of care. Of the 26 pre-selected studies, eleven met the inclusion criteria, being that five were from LILACS, three from BDENF, one from IBCES and two MEDLINE. In view of a better description of the results, the data are organized and presented in Figure 1, considering the variables: journal, publication year, contexts and situations of care, methodology and main contributions to the Nursing field. METHOD RESULTS AND DISCUSSION Leite JL, Silva TP, Ítalo Rodolfo Silva. Scientific production of nursing care for... English/Portuguese J Nurs UFPE on line., Recife, 7(8):5330-9, Aug., 2013 5333 DOI: 10.5205/reuol.3452-28790-4-ED.0708201334 ISSN: 1981-8963 Journal/publica tion year Contexts and study objects Methodology Main contributions to the Nursing field Rev. Eletr. Enf./ 2006 Admission Unit of a hospital in Curitiba-PR; the chronicity of illness of admitted children and its intersection to the effectiveness of supportive care Content analysis, qualitative approach; field research The supportive care in the professional practice of nurses enables a humanized nursing care in its different dimensions, free from automatism, as well as from impersonal and uninvolved care Rev. Enferm. UFPE on line/2010 Pediatric Oncology Unit of a hospital in João Pessoa-PB; relationship between the practice and the pursuit for knowledge production in Pediatric Oncology Thematic analysis; qualitative approach; field research The pursuit for knowledge in the professional practice of nurses is presented as a crucial issue to provide a sensitive care, open to listening and dialogue, with wisdom, dignity and competence. For the construction of the knowledge in pediatric oncology, it is important to build knowledge and also develop skills to elaborate surveys Rev. Gaúcha Enferm./2007 Pediatric Oncology Unit of a university hospital in Porto AlegreRS. Perceptions of undergraduate students experienced during internship in the Pediatric Oncology Unit Experience report The Pediatric Oncology Unit is unveiled as a place full of life, filled with hopes and pursuits. One needs to look at this environment under new lenses; to realize the needs for comfort of patients and family members; to understand the changes taking place in their lives and how all these factors determine the care to be developed Rev. Eletr. Enf./ 2006 Pediatric Oncology Unit of a Hospital in João Pessoa-PB; dialogue between nurses and mothers of children with cancer in the light of the Theory of Humanistic Nursing of Paterson and Zderad Phenomenological Nursing; qualitative approach; field research The dialogue, when intuitively and scientifically conducted, allows mothers to receive care that promote their well-being and being-best in the situation with the children. Moreover, it allows reflection, conceptualization in being and doing of nurses in a humanistic relationship with mothers of children with cancer Esc. Anna Nery Rev./2008 Pediatric Admission Unit of a hospital in Santa Maria-RS; aspects of existentiality of world-life of children with HIV Phenomenological approach from the Theory of Humanistic Nursing; field research Nurses in the caring circumstances should understand the existentiality of children and families as the unit of care Arq. Ciênc. Saúde/2005 Pediatric Unit of a hospital in São José do Rio Preto-SP; perceptions and feelings of nurses in caring for children with cancer Empirical categorization; qualitative approach; field research The nursing staff should give account of the importance of its role within the institution and, based upon this, to articulate itself by mobilizing the potential of its professionals in a creative and dynamic way; need for support and security to caregivers when dealing with stressful situations; need for greater scientific knowledge of nurses in Pediatric Oncology Rev. Gaúcha Enferm./2007 Pediatric Admission Unit of a hospital in Campinas-SP; meaning for nurses of caring for chronically ill children who were admitted and accompanied by family members Content analysis; qualitative approach; field research The nursing professional should seek to know better the work process, to know what its role within it in order to be able to actively act and intervene on it Rev. Enferm. UFPE on line/2010 Pediatric Chemotherapic Outpatient Unit of a hospital in Rio de Janeiro-RJ; experience report of nurses about the management of nursing care Experience report The management of the care for children with cancer is benefited when is dynamic and accomplished in accordance to the experienced situation, making use of capacity for judgment, decision, Leite JL, Silva TP, Ítalo Rodolfo Silva. Scientific production of nursing care for... English/Portuguese J Nurs UFPE on line., Recife, 7(8):5330-9, Aug., 2013 5334 DOI: 10.5205/reuol.3452-28790-4-ED.0708201334 ISSN: 1981-8963 reflection, integration, intentionality and creativity Rev. Gaúcha Enferm./2005 Pediatric Admission Unit of a university hospital in Santa MariaRS; meaning for the nursing staff for the act of caring for a child with AIDS Qualitative study, existential and phenomenological approach with hermeneutic analysis proposed by Motta and Crossetti in the light of Ricoeur; field research The care might be understood as an act of life that unveils a being that goes beyond the doing; authentic care unveils the act of perceiving the being living with AIDS as a child and might be developed through a dialogued and lived meeting. Through lived dialogue, human beings seek to understand what is said and not said in the interrelationship. The being who cares also needs support and attention of an interdisciplinary team Online Braz. J.Nurs./ 2005 Surgical Clinic of a hospital in Rio de Janeiro-RJ; acting of Pediatric Nursing before the integrated and systematized care in the postoperative of correction of transposition of the great arteries (TGA) Experience report The postoperative care to pediatric patients should be based on a systematic script of action to guide the medical and nursing staffs, in order to avoid risk situations. It is crucial having the presence of a specialized multidisciplinary team Index Enferm./2010 Unit of Preschoolers and Pediatric Hematology-Oncology; care quality perceived by parents in the aforementioned unit Cross-sectional study, qualitative approach; field research The study brings as contribution the importance of humanity and kindness in treating the child and the need for reference for professionals to offer support to parents and children in difficult situations. It highlights the need to intensify efforts to promote the comfort and well-being of children and families Figure 1. Presentation of selected papers according to journal, publication year, contexts and situations of care, methodology and main contributions to the Nursing field, 2012. It should be observed in Figure 1, regarding the indexed journals, that (02) two studies were published, respectively, in the Revista Eletrônica de Enfermagem, Journal of Nursing UFPE on line, (03) three studies in the Revista Gaúcha de Enfermagem, (01) one study in the Journal of the Anna Nery Nursing School, (01) one in the journal Arquivos de Ciências da Saúde, (01) one in the Online Brazilian Journal of Nursing and (01) one in the journal Index de Enfermería. As to the contexts of the selected studies, it should be evidenced that six of them were held in pediatric admission units, four in pediatric oncologyunits and one in pediatric chemotherapic outpatient unit. 15 It is worth to remember that the nursing care for children with chronic conditions might be developed in different environments, which include both hospital and outpatient context and the home and/or community context. In this study, it is observed an interest of researchers by the hospital context at the expense of the home and/or community context, however, it should be emphasized that these contexts concentrate the set of care for children with chronic conditions. Regarding the region, it should be observed that four studies were developed in the South Region, four in the Southeast Region, two in the Northeast Region and one in Seville Spain. 20 In the South Region, two studies were performed in Santa Maria-RS, one in Porto Alegre-RS and one in Curitiba-PR. In the Southeast Region, there are two in the São Paulo State and two in the Rio de Janeiro State and, in the Northeast Region, the Paraiba State presented itself with two studies. Concerning the investigated situations, it is noted in Figure 1 an interest from nurses in the meanings of care for children with chronic conditions; in perceptions and feelings of this professional in relationships of care for children with cancer; in the relationship between the practice of care and the pursuit for scientific knowledge of nurses in Pediatric Oncology; in the management of care for children with cancer; in the dialogue between nurses and mothers of children with cancer; in the care for children with HIV/AIDS; in the relationship of chronicity of diseases of admitted children with the effectiveness of the supportive care; in the role of the nursing staff together with children with chronic conditions, as well as in the care quality to be offered to children and their families. Leite JL, Silva TP, Ítalo Rodolfo Silva. Scientific production of nursing care for... English/Portuguese J Nurs UFPE on line., Recife, 7(8):5330-9, Aug., 2013 5335 DOI: 10.5205/reuol.3452-28790-4-ED.0708201334 ISSN: 1981-8963 Chronic conditions are long-term diseases that require some sort of management. From this perspective, it encompasses a broad category of health hazards that includes communicable diseases, such as HIV/AIDS, and non-communicable diseases, such as cancer, diabetes, cardiovascular diseases and structural disabilities, such as: amputations, blindness and disorders of the joints. All of them have in common the need for permanent care procedures. Thus, childish cancer was the most studied chronic condition according to the analysis of the studies. In this context, it is called childhood cancer a group of noncommunicable diseases that strikes children and teenagers from 0 to 19 years, who have in common the onset of modified cells that quickly and disorderly multiply themselves, in some body organ, interfering with its operation. In childhood, the most common cancer types are leukemia, brain tumors, lymphomas, kidney tumors and sarcomas. On the other hand, it should be highlighted that 70% of children diagnosed with cancer have a chance of healing when the diagnosis early takes place and the treatment is performed in specialized centers, which achieved progress are evident due to their scientific and technological development. 23 Nonetheless, the difficult access to information and attendance in health care services, delay the diagnosis and hinders the treatment and the healing of the disease at stake. Allied to this view, the beginning of treatment is usually accompanied by difficulties that require the involvement of families and children, as well as reorganization of family dynamics due to possible admissions, side effects arising from aggressive therapeutic methods, disruption of daily activities, limitations related to the large volume of new and complex information, possible financial misfit and feelings of anguish, pain, suffering and constant fear of the possibility of death. 15 From this viewpoint, the nursing care for children with cancer is revealed as a challenge by requiring sensitivity, scientific knowledge, skills and competences, especially the relational abilities to deal with the difficulties that arise from the relationship with children and their family members. Concerning the study design, eight field researches and three experience reports are evidenced. In field researches, it should be noted that seven of them opted for a qualitative approach and only one study made use of quantitative approach. In studies with qualitative approach, we have identified the following analytical techniques: content analysis, thematic analysis, empirical categorization, phenomenological analysis. 14,17,18 Thus, there is an interest from nurses in relation to studies with qualitative approaches. This appreciation reasserts that these professionals have been seeking in their professional practice to run in epistemological ways to expand the possibilities of looking at the human being as a whole, without losing sight of the individuality, thus avoiding fragmentation of such a being. Concerning the contribution, studies emphasize, as seen in Figure 1, the need for a proper and full of attention for children and their relatives; further researches to build a scientific and systematic knowledge in Nursing, which might be essential for getting sensitive care practices, with open listening, wisdom, dignity and competence; the appreciation of the family as the unit of care and the need for support and safety for caregivers when coping with stressful situations, such as, for example, the death of a child. 3,17 Allied to this viewpoint, the need for careful management of a dynamic care and related to the experienced situations, making use of the capacity for judgment, decision, reflection, integration, intentionality and creativity; and the effectiveness of a supportive nursing care, which enables a humanized care, focused on the human being and on its different dimensions.  Recognizing the complexity of care for children with chronic conditions The care understood as an interactive, dynamic, supportive and creative process, in other words, as an important part of being/doing in Nursing, translates itself into as complex issue when it seeks the relationships, interactions and connections of phenomena in a dialogical, complementary, non-dialectical and dichotomous relationship. Thus, there is complexity in the whole tissue, regardless of inseparably associated heterogeneous constituents, a tissue of happenings, actions, interactions, feedbacks, determinations, in short, chances that comprise the real world. Therefore, the complexity of care seems to be in the being and doing of nurses, leading them to search for a practice that re-directs their competences as caregivers, who are involved with other beings, standing in the caring environment, which is scenario of multiple human interactions. 25 Under this perspective, the nursing care for children with chronic conditions should be understood as a Leite JL, Silva TP, Ítalo Rodolfo Silva. Scientific production of nursing care for... English/Portuguese J Nurs UFPE on line., Recife, 7(8):5330-9, Aug., 2013 5336 DOI: 10.5205/reuol.3452-28790-4-ED.0708201334 ISSN: 1981-8963 relationship among complex beings with feelings, awareness, needs, limitations, difficulties and perceptions that are inseparably interrelated in a caring environment, determined by chance, uncertainties, doubts and unpredictabilities. Given the above, the care for children with chronic conditions is referred to as complex due to the fact that it involves many aspects, which are entwined in a relationship of interdependence that composes a integrator whole. These aspects are related to the phenomenon of being/doing of nurses in their daily work, the child with a chronic condition, in addition to the complex reality itself that is manifested to the eyes of everyone. This gaze towards the whole and the parts is focused on a complex thought of the multidimensional aspect, enabling critical reflections and understanding of phenomena. From this perspective, the care for children with chronic conditions should not be fragmented as well as superficial, impersonal and uninvolved. It is needed to look at the whole, without losing sight of the uniqueness of the parties and integrate them, in order to get knowledge and re-knowledge of the multidimensional, which allows a comprehensive and humanized care.  Strategies for the care for children with chronic conditions The nurse's role in this caring environment requires from this professional the use of strategies of action/interaction and of tools enabling to act in a committed and empathetic way in relationships of care with children in situations of chronic conditions. In the quest to provide quality care permeated by a sensitive and ethical doing, the nursing professional should know beyond acts and technical procedures, i.e., to realize children and their families in their singularities. For this purpose, it becomes necessary to win the trust and confidence of children and their relatives in the intersubjective relationships of care, fostering the proximity and formation