RESUMEN
Introducción: el envejecimiento poblacional, junto al aumento de enfermedades crónicas no transmisibles han llevado a un incremento en la prevalencia de las personas en situación de dependencia severa, requiriendo que familiares, amigos o vecinos asuman roles de cuidadores. Este estudio se enfoca en identificar a la población de cuidadores de personas con dependencia severa y facilitar su adherencia en programas de capacitación para en un Centro de Salud Familiar (CESFAM) en Puente Alto, Santiago de Chile. Métodos: se detectaron 82 cuidadores de pacientes con dependencia severa, de los cuales 47 seguían siendo cuidadores activos. Se encuestó telefónicamente a 35 cuidadores de pacientes con dependencia severa. Se recopiló información sobre acceso a internet, tiempo disponible y conocimiento sobre la disponibilidad de capacitaciones. Además, se evaluó el nivel de sobrecarga en los cuidadores utilizando la escala de Zarit abreviada (EZA). Resultados: el 83% de los cuidadores encuestados tenía acceso a internet, aunque se identificaron barreras como la falta de tiempo y conocimiento sobre las capacitaciones disponibles. Se encontró que el 62,8% de los cuidadores experimentaba sobrecarga severa. Estos resultados sugieren la falta de mecanismos para el cuidado de pacientes dependientes y la necesidad de facilitar la participación en programas de capacitación. Conclusiones: el estudio ofrece una breve representación sobre los cuidadores de personas con dependencia severa en un contexto de atención primaria. Se concluye que se requieren intervenciones multidisciplinarias para acercar instancias de capacitación y optimizar el cuidado del cuidador. Como parte de estas intervenciones, se desarrolló un manual del cuidador que servirá como recurso para el equipo de salud del CESFAM Madre Teresa de Calcuta, con el fin de brindar apoyo efectivo a los cuidadores.
Introduction: Population aging and the increase in non-communicable chronic diseases have led to a rise in severe dependency, requiring that family members, friends, or neighbors take on caregiving roles. This study focuses on improving participation in training programs for caregivers of individuals with severe dependency at a Family Health Center (CESFAM) in Puente Alto, Santiago, Chile. Methods: To characterize this population and determine barriers to accessing distance training, 35 caregivers of patients with severe dependency were contacted by phone. All the information was gathered on internet access, available time, and awareness of training availability. Additionally, caregiver burden levels were evaluated using de abbreviated Zarit scale (EZA). Results: 83% of surveyed caregivers had internet access, although barriers such as lack of time and knowledge about available training were identified, and 62.8% of caregivers experienced severe burdens. These results highlight the need for interventions to facilitate participation in training programs and improve the care provided by caregivers. Conclusions: The study provides a specific insight into caregivers of individuals with severe dependency in a primary care context. Multidisciplinary interventions are required to bring training opportunities closer and optimize caregiver support. As part of these interventions, a caregiver manual was created to serve as a resource for the CESFAM Madre Teresa de Calcuta health team, aiming to provide adequate support to caregivers.
RESUMEN
Caregivers of autistic children in low-to-middle-income countries experience many barriers to access resources to support their child's development. Caregiver training is considered an evidence-based practice and may be a cost-effective way to support caregivers of autistic children in such settings. This study focuses on the cultural adaptation of Parents Taking Action (PTA; Magaña et al., Family Process, 56, 57-74, 2017) to support caregivers of autistic children in Paraguay. We conducted focus groups and individual interviews with 28 caregivers, autistic individuals, and professionals in Paraguay to understand caregivers' needs and to explore needed cultural adaptations of PTA to achieve contextual fit. Participants identified caregivers' need for accurate and reliable information, strategies to support children's growth, and emotional support and strategies to manage stress. Additionally, participants provided recommendations for adapting PTA considering the dimensions within the Cultural Adaptation Checklist (Lee et al., International Journal of Developmental Disabilities, 2023). This study is the first step in the iterative process of culturally adapting an intervention and the process described in this study may be appropriate for culturally adapting other interventions.