RESUMO
BACKGROUND: Pediatric rheumatic disease (PRD) patients and their caregivers face a number of challenges, including the consequences of the PRD in patients and the impact on multiple dimensions of the caregivers' daily lives. The objective of this study is to measure the economic, psychological and social impact that PRD has on the caregivers of Mexican children. METHODS: This is a multicenter, cross-sectional study including primary caregivers of children and adolescents with PRD (JIA, JDM and JSLE) during April and November, 2019. A trained interviewer conducted the CAREGIVERS questionnaire, a specific, 28-item multidimensional tool validated to measure the impact on different dimensions of the lives of caregivers. Sociodemographic, clinical, and healthcare system data were collected for further analysis. RESULTS: Two hundred participants were recruited (women 169, 84.5%, aged 38 [IQR 33-44] years); 109 (54.5%) cared for patients with JIA, 28 (14%) JDM and 63 (31.5%) JSLE. The healthcare system was found to be determinant on the impact of the disease. The emotional impact was higher in all the participants, regardless of the specific diagnoses. The social dimension showed significant differences regarding PRD, healthcare system, time to reach the center, presence of disability, active disease, cutaneous and systemic manifestations, treatment and partner. Financial and work impacts were more frequent in those caring for JSLE and less so in those with a partner. Family relationships changed in 81 caregivers (25 [12.5%] worsened and 56 [28%] improved). No variables affecting spirituality were found. For caregivers without a partner, the social networks impact increased. CONCLUSION: The influence of sociodemographic factors can be devastating on families with children with a PRD. These data will help physicians to identify the areas with the greatest need for intervention to achieve comprehensive care for caregivers and their patients.
Assuntos
Cuidadores/economia , Cuidadores/psicologia , Efeitos Psicossociais da Doença , Doenças Reumáticas , Adulto , Criança , Estudos Transversais , Feminino , Humanos , Masculino , México , AutorrelatoRESUMO
BACKGROUND: Most of the strategies or programs that support early child development in Mexico are independent efforts that vary in scale, services offered and means of providing them. For the evaluation of the quality of these programs, an important aspect is the curriculum content. The aim of this study was to analyze and compare the curriculum content of the different strategies or programs focused on the promotion and intervention of early child development, which are offered by the Federal Government in Health and Education sectors in Mexico. METHODS: We conducted a review of the curriculum content of the strategies and programs. The qualitative phase consisted of a comparative analysis where 75 indicators proposed by the Inter-American Development Bank were identified. The quantitative phase consisted of a descriptive analysis of the indicators. Finally, the analyses were compared to establish the performance of each one. RESULTS: Six strategies or programs were identified. In the analysis of the presence of indicators, the Oportunidades de Aprendizaje (Learning Opportunities, LO) strategy showed a larger number of indicators. In the amplitude analysis, both PEI-CONAFE and LO were the best balanced. Finally, in-depth analysis of the indicators LO and Skills for life were the best balanced while PEI-CONAFE was the best balanced in the social-emotional area, CeNSIA program for language and LO for cognitive development area. CONCLUSIONS: LO strategy showed the closest level of contents established by the Inter-American Development Bank.
RESUMO
Resumen: Introducción: La mayoría de las estrategias o programas que apoyan el desarrollo de la primera infancia en México son esfuerzos independientes que varían en escala, servicios que ofrecen y modo de proporcionarlos. Para la evaluación de la calidad de estos programas, un aspecto de suma importancia es el contenido curricular. El objetivo de este estudio fue realizar un análisis y comparación curricular de las distintas estrategias o programas enfocados en la promoción e intervención del desarrollo infantil temprano que ofrece el Gobierno Federal en los sectores Salud y Educación en México. Método: Se realizó una revisión de la información de los contenidos curriculares de las estrategias o programas. La fase cualitativa consistió en un análisis documental comparativo con un ejercicio hermenéutico donde se identificaron los 75 indicadores propuestos por el Banco Interamericano de Desarrollo. La fase cuantitativa consistió en el análisis descriptivo de los indicadores. Finalmente, se compararon los análisis para establecer el desempeño de cada uno. Resultados: Se identificaron seis estrategias o programas. En el análisis de la presencia de indicadores, la estrategia Oportunidades de Aprendizaje (OA) fue la que presentó un mayor número de indicadores. En el análisis de amplitud, tanto PEI-CONAFE como OA fueron los mejor balanceados. Por último, en el análisis de profundidad de los indicadores, OA y Habilidades para la Vida fueron los mejor balanceados, mientras que PEI-CONAFE resultó el mejor balanceado para el área socio-emocional, CeNSIA para lenguaje y OA para el área cognitiva. Conclusiones: La estrategia OA fue la que garantizó un mayor acercamiento a los contenidos establecidos por el Banco Interamericano de Desarrollo.
Abstract: Background: Most of the strategies or programs that support early child development in Mexico are independent efforts that vary in scale, services offered and means of providing them. For the evaluation of the quality of these programs, an important aspect is the curriculum content. The aim of this study was to analyze and compare the curriculum content of the different strategies or programs focused on the promotion and intervention of early child development, which are offered by the Federal Government in Health and Education sectors in Mexico. Methods: We conducted a review of the curriculum content of the strategies and programs. The qualitative phase consisted of a comparative analysis where 75 indicators proposed by the Inter-American Development Bank were identified. The quantitative phase consisted of a descriptive analysis of the indicators. Finally, the analyses were compared to establish the performance of each one. Results: Six strategies or programs were identified. In the analysis of the presence of indicators, the Oportunidades de Aprendizaje (Learning Opportunities, LO) strategy showed a larger number of indicators. In the amplitude analysis, both PEI-CONAFE and LO were the best balanced. Finally, in-depth analysis of the indicators LO and Skills for life were the best balanced while PEI-CONAFE was the best balanced in the social-emotional area, CeNSIA program for language and LO for cognitive development area. Conclusions: LO strategy showed the closest level of contents established by the Inter-American Development Bank.