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As you explore Navigating Medical Complexity, you will have
your own ideas, reactions and questions. You can use this
worksheet to track your thoughts and questions or to help
you have conversations with your child’s providers.
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La teoría del anillo de apoyo es un marco útil para establecer roles en su equipo de apoyo.
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After reviewing this Guide you will be able to both articulate the value of Navigating Medical Complexity and its potential use in clinical training settings as well as identify appropriate opportunities to introduce the tool to families whose child has medical complexity.
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From the time that their sibling is diagnosed with a serious illness, any other children in the family will need support. New concerns and anxieties are present for both children and parent(s). Being aware of these and talking about them right from the start will help to create an environment that fosters good communication and strengthens relationships.
This Guide will help you to anticipate your other child(ren)’s reactions to their sibling’s illness, understand how to respond to and support the siblings, and prepare for potentially difficult conversations with siblings and others.
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Siblings of children with a serious medical condition need support. Within this infographic you will find some commonly expressed worries, concerns, and feelings from siblings of all ages, and ideas for how to respond.
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The Ring Theory of Support is a helpful framework for establishing roles on your support team. The idea is to determine and communicate who can ask for support as you care for your child, and from whom.
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Within this one page guide you will learn how over time, your grief (from the loss of your child) will stay much the same, but your life will begin to grow around it.
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El diagnóstico de una enfermedad grave obliga a los padres a aventurarse en un territorio desconocido y a menudo complicado, como navegar por el sistema de atención sanitaria o tomar decisiones médicas importantes. También se enfrentará a un nuevo desafío: comunicarse con su hijo sobre su enfermedad, tratamiento y pronóstico. De hecho, muchos padres consideran que este es uno de los aspectos más abrumadores de la tarea de cuidador. Sepa que no está solo en esta preocupación y que hay apoyo disponible para usted.
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Todos los futuros padres viven con cierto grado de incertidumbre, pero el conocimiento de una condición fetal que limita la vida trae un nuevo nivel de ansiedad y estrés. Esta Guía de Courageous Parents Network proporciona cuatro vías de atención después del diagnóstico de una afección fetal que limita la vida y le permite considerar qué vía, o qué aspectos de una vía, funcionarían mejor para su familia.
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The diagnosis of a serious health condition requires parents to venture into unfamiliar and often challenging territory, such as navigating the healthcare system or making important medical decisions. You will also face a new challenge: communicating with your child about their condition, treatment and prognosis. Indeed, many parents find that this is one of the most daunting aspects of the caregiver journey. Know that you are not alone in this concern and that there is support available to you.