Reliability and validity of the revised impact on family scale (RIOFS) in the hospital context.

BACKGROUND: The lack of formal instruments to measure Burden in primary caregivers of Children in a hospital context is limited because mostly of published instruments are related to cancer survivors, ambulatory environment or general context for children with chronic conditions, but none of them adapted property to prolonged hospitalization context. This leaves the rising population of hospitalized chronic children's caregivers without a proper assessment. The aim of this study was to develop a version of the Revised Impact on Family Scale adapted to primary caregivers of chronic hospitalized children. A cross-sectional study with two main stages was conducted. The first one describes the linguistic and contextual adaptation process of the instrument, and the second refers to the psychometric testing and analysis.. RESULTS: Less than 15% of the participants expressed problems with some adapted items in the scale. Eighty-six caregivers were evaluated at Josefina Martinez Hospital, mostly female (34.2 ± 11.6 years old). Majority of participants were graduated from high school, salaried employee and mothers of the chronic child. The scale exhibits a high level of internal consistency (Cronbach's alpha 0.73), excellent intra-observer reliability (Intraclass Correlation Coefficient 0.9), acceptable empirical evaluation of content validity and low and negative construct validity (Pearson's correlation coefficient - 0.23). CONCLUSIONS: This adapted version of the Revised Impact on Family Scale to the hospital context is a reliable, valid, self-administered and simple instrument to implement in order to assess the burden of primary caregivers with chronic hospitalized children.

[Anemia and iron deficiency in children with chronic respiratory diseases]. / Anemia y déficit de hierro en niños con enfermedades respiratorias crónicas.

INTRODUCTION: Children with chronic respiratory disease (CRD) are at increased risk of iron deficiency and anemia, which is under-diagnosed. AIM: To describe the iron (Fe) status in children with CRD and to evaluate the effects of its prophylactic indication. METHOD: Prospective study of children with CRD and adequate Fe intake in the diet. At baseline we measured hemogram, C-reactive protein and Fe profile. Subsequently, those with normal plasma hemoglobin (Hb) were not supplemented with Fe (Group A) and those with iron deficiency anemia or at risk of developing it (group B) were supplemented. We evaluated them 3 months later and, after supplementing all, at 4th month. RESULTS: Of 40 patients, median 30 months old (0.5 to 178), 60% were male, 80% eutrophic. Ventilation or oxygen were required in 45%. Diagnoses: 50% Chronic Lung Damage, 17.5% airway diseases, 10% Bronchopulmonary Dysplasia, 7.5% Cystic Fibrosis and 13.5% other. At baseline 20% were anemic (mostly ferropenic) and 12.5% had an abnormal iron profile. At all, 25 children completed the study: in group A, serum ferritin decreased to 3(th) month (-22.9 ± 30) and incremented to 4(th)month (+12.8 ± 26) µg/L (p = 0.013), without difference in Hb. Group B had a rise in Hb (91 ± 12 to 102 ± 12% of the mean for age, p = 0.04). CONCLUSION: Anemia and ferropenia are frequent in children with CRD. Decrease of their iron reserves can be prevented if they are supplemented. We suggest monitoring properly and treating early or supplement them prophylactically.

Introducción: Los niños con enfermedades respiratorias crónicas (ERC) tienen mayor riesgo de desarrollar anemia ferropriva, sin embargo, la ferropenia está infradiagnosticada. Objetivos: Describir el status de hierro (Fe) en niños con ERC y evaluar la respuesta a su suplementación profiláctica. Método: Estudio prospectivo de niños con ERC y adecuada ingesta de Fe en la dieta: se realizó hemograma, velocidad de eritro-sedimentación, proteína Creactiva y perfil de Fe. Posteriormente, aquellos con hemoglobina plasmática (Hb) normal no se suplementaron con Fe (Grupo A) y los que presentaban anemia ferropriva o factores de riesgo sí lo fueron (grupo B). Se evaluaron al 3º mes, después se suplementaron todos y se re-evaluaron al 4ºmes. Resultados: De 40 pacientes, con mediana de edad 30 meses (0,5 a 178), 60% eran hombres, 80% eutróficos. Requerían ventilación prolongada u oxigenoterapia 45%. Diagnósticos: 50% Bronquiolitis Obliterante post-infecciosa, 17,5% enfermedades de la vía aérea, 10% Displasia Broncopulmonar, 7,5% Fibrosis Quística y 15% otros. Basalmente 12,5% tuvo bajos depósitos de Fe y 20% anemia (la mayoría ferropriva). Completaron el estudio 25 niños: el grupo A disminuyó la ferritina sérica al 3ºmes (- 22,9 ± 30) y aumentó al 4ºmes (+12,8 ± 26) µg/L, (p = 0,013), sin cambio en la Hb. El grupo B tuvo ascenso de la Hb (91 ± 12 a 102 ± 12% del promedio para la edad, p = 0,04). Conclusión: La anemia ferropriva y la ferropenia son frecuentes en niños con ERC, quienes deterioran reversiblemente sus depósitos si no son suplementados. Sugerimos monitorizar con perfil de Fe y tratar precozmente, o suplementarlos en forma profiláctica.

Anemia y déficit de hierro en niños con enfermedades respiratorias crónicas / Anemia and iron deficiency in children with chronic respiratory diseases

Introducción: Los niños con enfermedades respiratorias crónicas (ERC) tienen mayor riesgo de desarrollar anemia ferropriva, sin embargo, la ferropenia está infradiagnosticada. Objetivos: Describir el status de hierro (Fe) en niños con ERC y evaluar la respuesta a su suplementación profiláctica. Método: Estudio prospectivo de niños con ERC y adecuada ingesta de Fe en la dieta: se realizó hemograma, velocidad de eritro-sedimentación, proteína Creactiva y perfil de Fe. Posteriormente, aquellos con hemoglobina plasmática (Hb) normal no se suplementaron con Fe (Grupo A) y los que presentaban anemia ferropriva o factores de riesgo sí lo fueron (grupo B). Se evaluaron al 3º mes, después se suplementaron todos y se re-evaluaron al 4ºmes. Resultados: De 40 pacientes, con mediana de edad 30 meses (0,5 a 178), 60% eran hombres, 80% eutróficos. Requerían ventilación prolongada u oxigenoterapia 45%. Diagnósticos: 50% Bronquiolitis Obliterante post-infecciosa, 17,5% enfermedades de la vía aérea, 10% Displasia Broncopulmonar, 7,5% Fibrosis Quística y 15% otros. Basalmente 12,5% tuvo bajos depósitos de Fe y 20% anemia (la mayoría ferropriva). Completaron el estudio 25 niños: el grupo A disminuyó la ferritina sérica al 3ºmes (- 22,9 ± 30) y aumentó al 4ºmes (+12,8 ± 26) μg/L, (p = 0,013), sin cambio en la Hb. El grupo B tuvo ascenso de la Hb (91 ± 12 a 102 ± 12% del promedio para la edad, p = 0,04). Conclusión: La anemia ferropriva y la ferropenia son frecuentes en niños con ERC, quienes deterioran reversiblemente sus depósitos si no son suplementados. Sugerimos monitorizar con perfil de Fe y tratar precozmente, o suplementarlos en forma profiláctica (AU)

INTRODUCTION: Children with chronic respiratory disease (CRD) are at increased risk of iron deficiency and anemia, which is under-diagnosed. Aim: To describe the iron (Fe) status in children with CRD and to evaluate the effects of its prophylactic indication. METHOD: Prospective study of children with CRD and adequate Fe intake in the diet. At baseline we measured hemogram, C-reactive protein and Fe profile. Subsequently, those with normal plasma hemoglobin (Hb) were not supplemented with Fe (Group A) and those with iron deficiency anemia or at risk of developing it (group B) were supplemented. We evaluated them 3 months later and, after supplementing all, at 4th month. RESULTS: Of 40 patients, median 30 months old (0.5 to 178), 60% were male, 80% eutrophic. Ventilation or oxygen were required in 45%. Diagnoses: 50% Chronic Lung Damage, 17.5% airway diseases, 10% Bronchopulmonary Dysplasia, 7.5% Cystic Fibrosis and 13.5% other. At baseline 20% were anemic (mostly ferropenic) and 12.5% had an abnormal iron profile. At all, 25 children completed the study: in group A, serum ferritin decreased to 3(th) month (-22.9 ± 30) and incremented to 4(th)month (+12.8 ± 26) μg/L (p = 0.013), without difference in Hb. Group B had a rise in Hb (91 ± 12 to 102 ± 12% of the mean for age, p = 0.04).CONCLUSION: Anemia and ferropenia are frequent in children with CRD. Decrease of their iron reserves can be prevented if they are supplemented. We suggest monitoring properly and treating early or supplement them prophylactically (AU)

Asistencia a la familia de un niño con enfermedad crónica: un desafío de enfermería / Family assistance of children with chronic illness

Los avances científicos han permitido prolongar la vida y no, necesariamente, la calidad de ésta. La enfermedad crónica de un niño no sólo le provoca una alteración física, sino también alteración en la dinámica familiar, por lo que el cuidado de ellos va más allá de un tratamiento médico, se requiere un cuidado adicional a las necesidades específicas familiares, donde se trabaje hacia una parentalidad positiva, apoyo de redes, mantención de las relaciones interpersonales y autocuidado. El propósito de esta revisión es entender la problemática de la familia ante la vivencia del cuidado de un niño con enfermedad crónica a fin de fundamentar un modelo de atención de enfermería que permita una intervención holística, que ayude a la adaptación familiar en este proceso.