Elisa de Oliveira Rosa

Family home care to the child with chronic diseases: an integrative review

Objective: analyzing, in the national and international literature, family care to children with chronic diseases. Method: an integrative review, with a view to answering the guiding question << What are the scientific evidences on the care practices developed by the family / caregiver in the home environment to children with chronic illness? >> The research was conducted in LILACS and BDENF databases, employing the descriptors: home care, family and child. To analyze the articles we sought to the nuclei of meaning that make up the corpus of 15 selected articles. Results: excelled in caring the maternal figure. The predominance of studies at home and productions those aimed to understand how it is managed, experienced and perceived by the family care for children with chronic illness framework. Conclusion: evidently, the presence of family in the implementation of home care, while providing continuous care, this may feel unprepared to care for a sick child, due to poor knowledge about the disease, jeopardizing the achievement of general care and complex procedures. Descriptors: Home Care; Family; Child. RESUMO Objetivo: analisar, na literatura nacional e internacional, o cuidado familiar de crianças com doenças crônicas. Método: revisão integrativa, com vistas a responder a questão norteadora << Quais as evidências científicas sobre as práticas de cuidado desenvolvido pelo familiar/cuidador no âmbito domiciliar à criança com doença crônica? >> Foi realizada a busca nas bases de dados LILACS e BDENF, empregando os descritores: assistência domiciliar, família e criança. Para a analise dos artigos buscou-se os núcleos de sentido que compõem o corpus de 15 artigos selecionados. Resultados: destacou-se no cuidado a figura materna. Predomínio de estudos no âmbito domiciliar e produções que objetivaram compreender como é gerenciado, vivenciado e percebido o cuidado pela família à criança portadora de doença crônica. Conclusão: evidenciou-se a presença da família na execução dos cuidados domiciliares, embora prestem cuidados contínuos, esta pode sentir-se despreparada para cuidar de uma criança doente devido ao precário conhecimento sobre a doença, comprometendo a realização de cuidados gerais e procedimentos complexos. Descritores: Assistência Domiciliar; Família; Criança. RESUMEN Objetivo: analizar, en la literatura nacional e internacional, el cuidado familiar de niños con enfermedades crónicas. Método: una revisión integradora, con el fin de responder a la pregunta guía << ¿Cuáles son las evidencias científicas sobre las prácticas de atención desarrolladas por la familia / cuidador en el entorno del hogar para niños con enfermedades crónicas? >> La búsqueda se realizó en las bases de datos LILACS y BDENF, empleando los descriptores: cuidados en el hogar, la familia y el niño. Para el análisis de los artículos buscó se los núcleos de significados que componen el corpus de 15 artículos seleccionados. Resultados: se destacó en el cuidado la figura materna. El predominio de los estudios en el país y producciones que tuvieron como objetivo comprender cómo se gestiona, experimenta y percibe se el cuidado de la familia para los niños con enfermedades crónicas. Conclusión: se evidenció la presencia de la familia en la aplicación de cuidados en el hogar, mientras la prestación de atención continua, esta puede sentirse despreparada para cuidar a un niño enfermo, debido al escaso conocimiento de la enfermedad, poniendo en peligro la consecución de los cuidados generales y los procedimientos complejos. Descriptores: Cuidados en el hogar; Familia; Niño. Graduate student, Nursing College, Federal University of Pampa / UNIPAMPA. Uruguaiana (RS), Brazil. Email: niseleao@gmail.com; Nurse; Master Teacher of Nursing, Nursing College, Federal University of Pampa / UNIPAMPA; Doctoral student, Postgraduate Program in Nursing, Federal University of Santa Maria / UFSM. Santa Maria (RS), Brazil. Email: andressadasilveira@gmail.comGraduate student, Nursing College, Federal University of Pampa / UNIPAMPA. Uruguayana (RS), Brazil. Email: elisarosa94@hotmail.com; Physiotherapist; Professor of Toxicological Biochemistry, Federal University of Pampa / UNIPAMPA. Uruguaiana (RS), Brazil. Email: rodrigo.balk@gmail.com; Nurse; Professor, Nursing College, Federal University of Pampa / UNIPAMPA, Doctorate in Nursing Dinter Unifesp / UFRJ / UFSM. São Paulo (SP), Brazil. Email: neilasantini@hotmail.com; Nurse; Professor, Nursing College, Federal University of Pampa / UNIPAMPA; Doctoral Student of Nursing Dinter Unifesp / UFRJ / UFSM. São Paulo (SP), Brazil. Email: odetetorres@gmail.com INTEGRATIVE REVIEW ARTICLE Leão DM, Silveira A da, Rosa EO. Family home care to the child with... English/Portuguese J Nurs UFPE on line., Recife, 8(Suppl. 1):2445-54, July., 2014 2446 ISSN: 1981-8963 DOI: 10.5205/reuol.5927-50900-1-SM.0807suppl201432 In 2011 was approved the Ordinance 2.488 of the National Primary Care Policy (BANP), setting the review and redefinition of guidelines and standards for the organization of primary care and home care. Home care aims to providing technical and structural support to the family of the patient to return home by providing conditions to occur the rehabilitation of child health. In this context, health professionals, especially nurses, should support the family in coping with chronic illness. A chronic health condition is one whose condition lasts for more than three months, affects the daily activities of the child, and requires care at home, persisting for an extended period of slow progress. Chronic diseases can be still called Chronic NonCommunicable Diseases (NCDS), seen as a global health problem that threatens the health and human development. In Brazil it is estimated that NCDS account for 72% of total deaths. It is noted that there was an increase in mortality from chronic disease among children aged one to nine years old, mainly in Brazil and in Latin America and in the Caribbean. Chronic diseases do not generate immediate mortality in children, however, lead the various types of gravity, may be asymptomatic way indefinitely and / or manifesting only in acute events. Depending on the level of exacerbation of symptoms, the presence of chronic diseases in childhood promotes organic, emotional, social structural changes and requiring intensive care and adaptation of housing context by the familiar caregiver. It is considered a caregiver the person that most directly develops carecontinuously and may or may not be a family member. Whereas the caregiver is directly involved in daily child with chronic diseases, it is necessary to agree upon knowledge, valuing prior knowledge of these caregivers. Exercising daily family care is a key element for the care of its members; in particular for the most dependent individuals as those with chronic diseases. The family has a direct influence on the health of the patient, contributing as a partner in improving practices and effectiveness of care. It can be understood as a group of individuals who are united by emotional ties and the feeling of belonging to this group and who identify as members of that family. ● Analyzing in the national and international literature, family care of children with chronic diseases. It was selected as a method of the features of evidence-based practice, integrative review, specific method, which summarize the past of empirical or theoretical literature, to providing a more comprehensive understanding of a particular phenomenon. The integrative review enables synthesis of published studies, allowing the generation of new knowledge grounded in results presented by previous researches. To review the development of six steps, there were performed: the first step was to define the guiding research question, in the second stage there were delimited the criteria for inclusion and exclusion, and in the third stage there were elected the databases and made the search of scientific productions, in the fourth stage data analysis was performed at the fifth stage was developed the data discussion, and at the sixth stage was presented the synthesis of the review. The guiding question of the study was: what scientific evidence on the care practices developed by the family / caregiver in the home environment to children with chronic