Scientific production of nursing care for children with chronic conditions: integrative review

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: joluzia@gmail.com; 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: thiago-p-silva@hotmail.com; Nurse, Master’s Student at the Anna Nery Nursing School /UFRJ, Member of the GEPSFCA/UFRJ and of the GEPSFCA/UFMA. E-mail: ítalo-rs3@hotmail.com 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 li