Necesidades formativas y socioemocionales de familias con niños nacidos muy prematurosuna propuesta de intervención socioeducativa

Resumo

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.