| مصطلحات موضوعية: |
5802.01 Educación de Adultos, Formation, Neurodesarrollo, Niños recién nacidos, Formación, Prematuridad, Prematurity is one of the most prevalent health problems in the child population of developed countries, accounting for 75 per cent of infant mortality, and 50 per cent of disability in childhood. Among the survivors, up to 10 percent of children born prematurely develop major neurological and sensory deficiencies, and 50 to 60 percent develop disorders cognitive, behavioral, and learning disabilities. Prematurity, therefore, is a condition that does not go unnoticed in a child's life. But what about his family? Our research aimed to support and give voice to the families of children born very rematurely, as a way to understand what they need and how they need it, such as support for the elaboration of a proposal for socioeducational intervention adapted to them. To achieve this purpose, research of a mixed nature was carried out with a population of families who had a child born very prematurely (born under 32 weeks of gestation and/or weighing less than 1500 grams), which were in the Intermediate Neonatal Care at the University Hospital 12 de Octubre Triangulation is carried out through three methods of information collection: the questionnaire (validated by experts), the interview, and the discussion group. After the analysis of the information obtained, it was possible to describe a compendium of needs that the families perceived, both formative and socio-emotional, to which the appropriate response was not offered, or simply, as was the case of attention and stimulation of neurodevelopment, they did not receive any response at all. Most families were unaware of both the need to adapt the stimuli offered and the role they played, tending to underestimate their child's abilities, using descriptions in their speeches such as "he is still small", "he is very fragile", "he is special" or "he is not normal". Expressions, which can not only limit the opportunities for advancement that the child has in all areas of neurodevelopment, but can lay the foundation for a child's upbringing based on overprotection, guilt and a view of vulnerability. Faced with this training need, health professionals faced several obstacles: the prioritisation of care, the lack of training and the reluctance of families. In short, the families in our context neither knew nor received a response to the need for training, and the proposal of a socio-educational intervention on care and stimulation of neurodevelopment was necessary. The Small Giants Programme was intended to be a resource for support, security and satisfaction about the parental role exercised, with the families themselves being the main actors who would know how to help your child acquire his or her abilities, with appropriate stimulation, within a construct of respect for your own rhythm as a unique and unrivalled person. The programme included training in stimulation activities, which families could incorporate into the interaction with your child, throughout the first 3 months of corrected age, The areas to be stimulated are: fine and gross motor, cognitive, language and socio-emotional. After acceptance of participation in the programme, families received training individual pre-discharge, together with a post-discharge group training session. In addition to the programme, families were provided with material resources and virtual support. After two months of implementation, the adequacy of the programme to the needs of the families, as well as the quality of the same and possible proposals for improvement, using interview. After the first recorded experiences, we can say that, with the validated Small Giants Programme, it has been possible not only to provide the participants with information and skills in attention and stimulation of neurodevelopment, but also to empower the families, giving them feelings of security, satisfaction, and confidence about the parental role exercised, as well as the perception of receiving social support both formally, from the health professionals belonging to the research team, and informally, creating cohesion and a feeling of group relevance among the participating families. The Small Giants Programme continues to grow, improve and adapt to the needs of families that have experienced a premature birth, and there are now more than a hundred families that have been able to enjoy its benefits, the questionnaire (validated by experts), the interview, and the discussion group. After the analysis of the information obtained, it was possible to describe a compendium of needs that the families perceived, both formative and socio-emotional, to which the appropriate response was not offered, or simply, as was the case of attention and stimulation of neurodevelopment, they did not receive any response at all. Most families were unaware of both the need to adapt the stimuli offered and the role they played, tending to underestimate their child's abilities, using descriptions in their speeches such as "he is still small", "he is very fragile", "he is special" or "he is not normal". Expressions, which can not only limit the opportunities for advancement that the child has in all areas of neurodevelopment, but can lay the foundation for a child's upbringing based on overprotection, guilt and a view of vulnerability. Faced with this training need, health professionals faced several obstacles: the prioritisation of care, the lack of training and the reluctance of families. In short, the families in our context neither knew nor received a response to the need for training, and the proposal of a socio-educational intervention on care and stimulation of neurodevelopment was necessary. The Small Giants Programme was intended to be a resource for support, security and satisfaction about the parental role exercised, with the families themselves being the main actors who would know how to help your child acquire his or her abilities, with appropriate stimulation, within a construct of respect for your own rhythm as a unique and unrivalled person. The programme included training in stimulation activities, which families could incorporate into the interaction with your child, throughout the first 3 months of corrected age, The areas to be stimulated are: fine and gross motor, cognitive, language and socio-emotional. After acceptance of participation in the programme, families received training individual pre-discharge, together with a post-discharge group training session. In addition to the programme, families were provided with material resources and virtual support. After two months of implementation, the adequacy of the programme to the needs of the families, as well as the quality of the same and possible proposals for improvement, using interview. After the first recorded experiences, we can say that, with the validated Small Giants Programme, it has been possible not only to provide the participants with information and skills in attention and stimulation of neurodevelopment, but also to empower the families, giving them feelings of security, satisfaction, and confidence about the parental role exercised, as well as the perception of receiving social support both formally, from the health professionals belonging to the research team, and informally, creating cohesion and a feeling of group relevance among the participating families. The Small Giants Programme continues to grow, improve and adapt to the needs of families that have experienced a premature birth, and there are now more than a hundred families that have been able to enjoy its benefits. [Prematurity is one of the most prevalent health problems in the child population of developed countries, accounting for 75 per cent of infant mortality, and 50 per cent of disability in childhood. Among the survivors, up to 10 percent of children born prematurely develop major neurological and sensory deficiencies, and 50 to 60 percent develop disorders cognitive, behavioral, and learning disabilities. Prematurity, therefore, is a condition that does not go unnoticed in a child's life. But what about his family? Our research aimed to support and give voice to the families of children born very rematurely, as a way to understand what they need and how they need it, such as support for the elaboration of a proposal for socioeducational intervention adapted to them. To achieve this purpose, research of a mixed nature was carried out with a population of families who had a child born very prematurely (born under 32 weeks of gestation and/or weighing less than 1500 grams), which were in the Intermediate Neonatal Care at the University Hospital 12 de Octubre Triangulation is carried out through three methods of information collection], 6309.03 Familia, Parentesco, Stimulation, Neurodevelopmental, 5801.07 Métodos Pedagógicos, Familia, Estimulación, Family, Prematurity |
| الوصف: |
La prematuridad, es uno de los problemas de salud más prevalentes en la población infantil de los países desarrollados, justificando el 75 por ciento de la mortalidad infantil, y el 50 por ciento, de la discapacidad en la infancia. Entre los supervivientes, hasta el 10 por ciento de los niños que nacen prematuros, desarrollan deficiencias neurológicas y sensoriales mayores, y de un 50 a 60 por ciento, alteraciones cognitivas, de conducta, y problemas de aprendizaje. La prematuridad, por tanto, es una condición que no pasa desapercibida en la vida del niño. Pero, ¿qué ocurre con su familia? Con nuestra investigación, se pretendió apoyar y dar voz a las familias de los niños nacidos muy prematuros, como forma de poder comprender qué necesitan y cómo lo necesitan, como sustento para la elaboración de una propuesta de intervención socioeducativa adaptada a las mismas. Para conseguir dicho propósito, se llevó a cabo una investigación de naturaleza mixta con una población de familias que tenían un hijo nacido muy prematuro (nacido con menos de 32 semanas de gestación y/o con peso inferior a 1.500 gramos), que se encontraban en la Unidad de Cuidados Intermedios Neonatales del Hospital Universitario 12 de Octubre. La triangulación se realizó a través de tres métodos de recogida de información: el cuestionario (validado por expertos), la entrevista, y el grupo de discusión. Tras el análisis de la información obtenida, se pudo describir un compendio de necesidades que las familias percibían, tanto formativas como socioemocionales, a las cuáles no se ofrecía la respuesta adecuada, o simplemente, como fue en el caso de la atención y estimulación del neurodesarrollo, no recibían respuesta alguna. La mayoría de las familias, desconocían tanto la necesidad de adecuar los estímulos ofrecidos, como el papel que representaban, tendiendo a infravalorar las capacidades de su hijo, utilizando en sus discursos descripciones como “aún es pequeño”, “es muy frágil”, “es especial” o “no es normal”. Expresiones, que no sólo pueden limitar las oportunidades de avanzar que tiene el niño en todas las áreas de neurodesarrollo, sino que pueden asentar los cimientos de una crianza basada en la sobreprotección, la culpabilidad y la visión de vulnerabilidad. Ante esta necesidad formativa, los profesionales sanitarios se encontraban con varios obstáculos: la priorización de los cuidados, la falta de formación, y la reticencia de las familias. En definitiva, las familias de nuestro contexto, ni sabían, ni recibían respuesta a su necesidad formativa, mostrándose la propuesta de una intervención socioeducativa sobre atención y estimulación del neurodesarrollo, necesaria. El Programa Pequeños Gigantes, perseguía ser un recurso de apoyo, seguridad y satisfacción sobre el rol parental ejercido, siendo las propias familias, los agentes protagonistas que podrían ayudar a su hijo a ir adquiriendo sus capacidades, con una estimulación adecuada, dentro del respeto por su propio ritmo como persona única e inigualable. El programa recogía la formación en actividades de estimulación, que las familias podían incorporar en la interacción con su hijo, a lo largo de los 3 primeros meses de edad corregida, siendo las áreas a estimular: motricidad fina y gruesa, cognitivo, lenguaje y socioemocional. Tras la aceptación de la participación en el programa, las familias recibían formación individual previa al alta, junto con una sesión formativa grupal posterior a la misma. Además del programa, las familias contaban con recursos materiales y de apoyo virtual. Tras dos meses de aplicación, se valoró la adecuación del programa a las necesidades de las familias, así como la calidad del mismo y las posibles propuestas de mejora, utilizando para ello, la entrevista. Tras las primeras experiencias registradas, podemos decir que, con el programa formativo validado Pequeños Gigantes, se ha logrado, no sólo dotar a los participantes de información y competencias en atención y estimulación del neurodesarrollo, sino que ha sido fuente de empoderamiento de las familias, otorgándoles sentimientos de seguridad, satisfacción, y confianza sobre el rol parental ejercido, así como la percepción de recibir apoyo social tanto formal, de los propios profesionales sanitarios pertenecientes al equipo de investigación, como informal, creando cohesión y sentimiento de pertenencia de grupo entre las familias participantes. El Programa Pequeños Gigantes, sigue creciendo, mejorando, y adaptándose a las necesidades presentes en las personas que han experimentado un nacimiento prematuro, siendo en la actualidad más de cien, las familias que han podido disfrutar de sus beneficios. |
