ABSTRACT
Introducción: El cáncer infantil causa un gran impacto no sólo para los niños sino para sus cuidadores familiares. Objetivo: Determinar el estado actual de la evidencia acerca de los cuidadores familiares de niños con cáncer, a partir de revisiones de literatura publicadas entre el 2010 y 2020. Materiales y métodos: Se realizó una revisión tipo "Umbrella", incluyendo revisiones de literatura, sistemáticas y metaanálisis sobre el cuidador familiar del niño con cáncer como tema principal. Se buscó en las bases de datos Academic Search complete, Scopus, Science Direct, Complementary index, Google Scholar y Scielo. Se incluyeron 21 artículos en la revisión. Resultados: Se determinaron 6 temas de investigación prevalentes: 1) Síntomas psicosociales: Impacto del cáncer en el cuidador familiar, 2) Necesidades del cuidador familiar en la transición del rol de cuidador, 3) Comunicación parental en el contexto de cáncer infantil, 4) Afrontamiento del cuidador ante la enfermedad del niño, 5) Sobrecarga del cuidador familiar, 6) Duelo del cuidador familiar al final de la vida del niño con cáncer. Conclusiones: Se describe las necesidades, el impacto de tipo psicosocial y emocional derivados de la enfermedad, el duelo y la comunicación. Se requiere mayor investigación sobre las estrategias de afrontamiento para estos cuidadores.
Introduction: Childhood cancer has a large impact not only on children but also on their family caregivers. Objective: To determine the current state of the evidence on family caregivers of children with cancer through literature reviews conducted between 2010 and 2020. Materials and methods: An umbrella-type review was carried out, including literature and systematic reviews as well as meta-analysis, which had as a main topic family caregivers of children with cancer. The Academic Search complete, Scopus, Science Direct, Complementary index, Google Scholar and Scielo databases were searched, finding 21 relevant articles. Results: 6 prevalent research topics were determined: 1) Psychosocial symptoms: impact of cancer on the family caregiver; 2) Needs of the caregiver in the transition of the role of caregiver; 3) Parental communication in the context of childhood cancer; 4) Coping with the child's disease; 5) Overload of the family caregiver; 6) Grief of the family caregiver at the moment of the child's death. Conclusions: The evidence mostly describes the needs of caregivers, the psychosocial- and emotional-type impacts derived from the disease, grief, and communication. More research is required on the coping strategies of these caregivers.
Introdução: O câncer infantil causa grande impacto não só para as crianças, mas também para seus cuidadores familiares. Objetivo: Determinar o estado atual das evidências sobre cuidadores familiares de crianças com câncer a partir de revisões de literatura realizadas entre 2010 e 2020. Materiais e métodos: Foi realizada uma revisão "Umbrela", incluindo revisões de literatura, revisões sistemáticas e meta-análise sobre o cuidador familiar de crianças com câncer como tema principal. Foram pesquisadas as bases de dados Academic Search complete, Scopus, Science Direct, Complementary index, Google Scholar e Scielo. Vinte e um artigos foram incluídos na revisão. Resultados: Foram determinados seis temas de investigação prevalentes: 1) Sintomas psicossociais: impacto do câncer no cuidador familiar, 2) Necessidades do cuidador familiar na transição do papel de cuidador, 3) Comunicação parental no contexto do câncer infantil, 4) Enfretamento do cuidador perante o adoecimento da criança, 5) Sobrecarga do cuidador familiar, 6) Luto do cuidador familiar no final da vida da criança com câncer. Conclusões: A evidência descreve principalmente as suas necessidades, o impacto psicossocial e emocional derivado da doença, luto e comunicação. Mais pesquisas são necessárias sobre estratégias de enfrentamento para esses cuidadores.
Subject(s)
Humans , Male , Female , Child, Preschool , Child , Caregivers , Neoplasms , Caregiver Burden , Psychological Well-BeingABSTRACT
OBJECTIVE: The purpose of this study was to describe the caregiver's proxy-report of the quality of life (QoL) of children with cancer and the main family caregiver's competence, and to examine the role of said competence and other care-related variables in their proxy-reported QoL of children with cancer. METHOD: This was a cross sectional, correlation design study conducted with 97 main family caregivers of children between the ages of 8 and 12 years with cancer residing in Colombia. The following variables were collected: main family caregiver and child sociodemographic characteristics (Survey for Dyad Care; GCPC-UN-D), The Pediatric Quality of Life Inventory 4.0 Cancer Module, and the Competence Instrument (caregiver version). RESULTS: The mean of the children's QoL was 102.0 points, and the caregivers' competence score was 211.24. Caregiver's competence (t = 5.814, p < .01), marital status (t = 1.925, p < .05), time as a caregiver (t = 2.087, p < .05), number of hours spent caring for the child (t = 2.621, p < .05), and caregiver's previous caring experiences (t = 2.068, p < .05) were found to influence caregiver's proxy-report of the QoL of children with cancer. CONCLUSIONS: High competence in main family caregivers positively influence caregiver's proxy-report of the QoL of children with cancer. Study results also suggest that nurses should consider the caregivers' sociodemographic characteristics such as marital status, time as a caregiver, number of hours spent caring for the child, and caregiver's previous experiences because those aspects influence main family caregivers' proxy-report about their children's QoL.
Subject(s)
Caregivers , Neoplasms , Child , Cross-Sectional Studies , Humans , Quality of Life , Surveys and QuestionnairesABSTRACT
Introducción: El cáncer infantil tiene un impacto negativo en la calidad de vida del niño, además, implica en el cuidador adoptar un nuevo rol y con él, la competencia para brindar cuidados. La competencia para cuidar de los cuidadores puede influir en la calidad de vida de los niños con cáncer. Objetivo: Determinar si la competencia para cuidar en el hogar del cuidador familiar del niño con cáncer es una variable que influye sobre la calidad de vida relacionada con la salud del niño con cáncer. Materiales y métodos: Estudio cuantitativo, descriptivo correlacional de corte transversal. La muestra estuvo constituida por 97 cuidadores de niños con cáncer entre los 8 a 12 años. Se usaron los instrumentos: encuesta de caracterización de la diada, PedsQL™ módulo cáncer, Competencia para el cuidado versión cuidador. El análisis de los datos se realizó mediante estadística descriptiva con medidas de tendencia central y de dispersión y la determinación del coeficiente de correlación de Spearman. Resultados: Los cuidadores fueron principalmente mujeres entre los 36 y 39 años. La calidad de vida global de los niños fue alta con una media de 102,0±16,705, los dominios náuseas y problemas cognitivos mostraron la mejor calidad de vida; la competencia del cuidador global fue alta con una media de 211,24±16,295, la dimensión con mejor competencia fue relación social. La correlación entre las variables fue positiva, moderada (rho=0,430) y significativa (valor p=0,000). Conclusión: La competencia para cuidar en el hogar de los cuidadores, es una variable que influye en la calidad de vida del niño con cáncer, pues, una alta competencia para cuidar influye en la calidad de vida del niño.
Introduction: Childhood cancer has a negative impact on the quality of life of the child, also implies the caregiver to adopt a new role and with it, the competence to provide care. Competence to care for caregivers can influence the quality of life of children with cancer. Objective: To determine if the competence to care in the home of the family caregiver of the child with cancer is a variable that influences the quality of life related to the health of the child with cancer. Materials and methods: Quantitative, descriptive, cross-sectional correlational study. The sample consisted of 97 caregivers of children with cancer between 8 and 12 years old. The instruments were used: dyads characterization survey, PedsQL ™ cancer module, care competence - carer version. The analysis of the data was done by means of descriptive statistics with measures of central tendency and dispersion and the determination of the Spearman correlation coefficient. Results: The caregivers were mainly women between 36 and 39 years old. The overall quality of life of the children was high with a mean of 102.0 ± 16.705, the nausea and cognitive problems domains showed the best quality of life; the competence of the global caregiver was high with an mean of 211.24 ± 16.295, the dimension with the best competence was social relation. The correlation between the variables was positive, moderate (rho = 0.430) and significant (value p = 0.000). Conclusion: The competence to take care of the caregivers at home is a variable that influences the quality of life of the child with cancer, since a high competence to care influences the quality of life of the child.