ABSTRACT
INTRODUCTION: Both the moment and the way chosen to break the news that a child aged 0-6 years is suffering, or may suffer, from a developmental disorder or disability have an effect on the parents and on the familial system that goes beyond the actual fact of knowing about the circumstance in itself. It is a very significant social act that represents the first encounter in which the parents explore and anticipate the social attitudes of inclusion or exclusion towards the child. AIMS: To gather information about the practices usually employed by professionals when it comes to breaking the news to the families, to evaluate what aspects of the process could be improved, to determine the families' needs in these circumstances and to gain a deeper understanding of the affective-emotional processes experienced by the parents. SUBJECTS AND METHODS: The research was conducted using a questionnaire with 43 items, which was specifically designed for the population under examination in the study. Altogether, 418 parents from 15 different autonomous regions of Spain took part in the study. At the same time, the existing literature on diagnostic information in Spanish was reviewed. RESULTS AND CONCLUSIONS: It can be concluded that, to 'break the bad news', professionals must know the family; they must take the utmost care in choosing when, where and how to give that news; the parents must be together when they are told; and they must take into account the type of disability the child suffers from as well as its intensity. These guidelines of conduct become manifest in strategies and keys to be applied to each situation, in the contents of the messages to be communicated and in the attitudes of professionals.
Subject(s)
Developmental Disabilities/psychology , Disabled Children/psychology , Parents/psychology , Professional-Family Relations , Truth Disclosure , Child , Child, Preschool , Communication , Emotions , Family/psychology , Female , Grief , Health Education , Health Services Needs and Demand , Humans , Infant , Infant, Newborn , Male , Personal Satisfaction , Psychological Distance , Qualitative Research , Spain , Surveys and QuestionnairesABSTRACT
Introducción. El momento y la forma de transmitir la noticia de que un hijo de 0-6 años sufre, o puede sufrir, un trastorno en el desarrollo o discapacidad produce un efecto en los padres y en el sistema familiar que trasciende en sí el hecho de conocer esta circunstancia; es un acto social muy relevante que representa el primer encuentro en el que los padres exploran y anticipan las actitudes sociales de inclusión o exclusión hacia el niño. Objetivos. Recabar información sobre las prácticas habituales de los profesionales a la hora de dar la primera noticia a las familias, evaluar qué aspectos del proceso podrían mejorarse, conocer las necesidades de las familias en estas circunstancias y profundizar en la comprensión de los procesos afectivo-emocionales que experimentan los padres. Sujetos y métodos. Para el desarrollo de la investigación se ha utilizado un cuestionario con 43 ítems, diseñado específicamente para la población objeto de estudio, en el que han participado un total de 418 progenitores, quedando representadas 15 comunidades autónomas. Al mismo tiempo, se ha revisado la bibliografía existente en lengua española referida a la información diagnóstica. Resultados y conclusiones. Se concluye que, para transmitir la primera noticia, es necesario que los profesionales conozcan a la familia, que cuiden al máximo cuándo, dónde y cómo se da esta noticia, que los padres estén juntos al recibirla, y que tengan en cuenta el tipo de discapacidad que padece el niño y su intensidad. Esas pautas de actuación se concretan en estrategias y claves de situación, de contenido del mensaje y de actitudes del profesional (AU)
Introduction. Both the moment and the way chosen to break the news that a child aged 0-6 years is suffering, or may suffer, from a developmental disorder or disability have an effect on the parents and on the familial system that goes beyond the actual fact of knowing about the circumstance in itself. It is a very significant social act that represents the first encounter in which the parents explore and anticipate the social attitudes of inclusion or exclusion towards the child. Aims. To gather information about the practices usually employed by professionals when it comes to breaking the news to the families, to evaluate what aspects of the process could be improved, to determine the families needs in these circumstances and to gain a deeper understanding of the affective-emotional processes experienced by the parents. Subjects and methods. The research was conducted using a questionnaire with 43 items, which was specifically designed for the population under examination in the study. Altogether, 418 parents from 15 different autonomous regions of Spain took part in the study. At the same time, the existing literature on diagnostic information in Spanish was reviewed. Results and conclusions. It can be concluded that, to break the bad news, professionals must know the family; they must take the utmost care in choosing when, where and how to give that news; the parents must be together when they are told; and they must take into account the type of disability the child suffers from as well as its intensity. These guidelines of conduct become manifest in strategies and keys to be applied to each situation, in the contents of the messages to be communicated and in the attitudes of professionals (AU)
