Family of People With Spina Bifida: Goals and Strategies

Abstract

ABSTRACT:We aim to describe the goals and strategies of action that parents have established for their child and young adults with spina bifida. Participants were 17 families who answered an online questionnaire. The instrument included topics about sociodemographic characteristics and the following questions: "How do you imagine your son's or daughter's life in the future?" and "What do you think he or she needs to develop these characteristics?". Data of socialization goals were analyzed according to the categories: Self-improvement, Self-control, Emotionality, Social Expectations and Good Behavior. Data of strategies of action were classified in the categories: Self-centered, Context-centered and Person-centered. Main results showed that the most valued socialization goal is selfimprovement which is similar to other German families, suggesting that the disability condition does not interfere in the culturally shared beliefs. In order to achieve their goals, parents use, primarily, the self-centered strategy, which represents parents want to serve as a model to their son or daughter with spina bifida. In addition, it was possible to identify that those mothers and fathers also tend to combine different strategies in order not only to maximize the developmental gains, but also to obtain social support in the parental role. In fact, parents of people with spina bifina should be supported in their needs since disability condition seems to be the major factor in the establishment of goals and strategies. Keywords: family, socialization goals, spina bifida, strategies of action. ___________________________________________________________________________ FAMÍLIAS COM ESPINHA BÍFIDA: OBJETIVOS E ESTRATÉGIASRESUMO: O objetivo deste trabalho é descrever as metas e estratégias de ação que pais e mães estabeleceram para sua criança ou adolescente com espinha bífida. Participaram 17 famílias que responderam a um questionário online. O instrumento incluiu tópicos sobre características sociodemográficas e as seguintes perguntas: "Como você imagina a vida de do seu filho ou filha no futuro?" e "O que você acha que é necessário para ele ou ela desenvolver estas características?" Dados de metas de socialização foram analisados de acordo com as categorias: Autoaperfeiçoamento, Autocontrole, Emotividade, Expectativas Sociais e Bom Comportamento. Os dados de estratégias de ação foram classificadas nas categorias: Centrada em si, Centrada na pessoa e Centrada no contexto. Os Principais resultados mostraram que a meta de socialização mais valorizada é autoaperfeiçoamento, o que é semelhante a outras famílias alemãs, sugerindo que a condição de deficiência não interfere nas crenças culturalmente compartilhadas. A fim de atingir seus objetivos, os pais usam, principalmente,

Seeking tirelessly for better health and life conditions for the child with myelomeningocele

“…On the other hand, over time, the family moves towards adapting to the new routine, striving to insert the child into routine and leisure activities, seeking to act normally and feel part of society ( 29 ) . Thus, they impetuously desire that the child, despite their limitations, gains autonomy and social insertion ( 41 ) ; standing out as a strategy for this purpose is physical activity, which, in addition to health benefits and functional development, promotes independence, motivation and social participation ( 42 ) , such experiences also being apprehended in this study.…”

“…The care required by MMC considerably exceeds that required by a child with typical development, and lasts for a lifetime ( 8 ) , also inferring greater difficulty in psychosocial interaction and lower quality of life in relation to their physical health ( 9 ) , which generates feelings of fear, insecurity and anxiety in the family, the main social support to ensure the childs growth and potential development ( 10 ) . Thus, given the repercussion of MMC in the life of the child and his family, it is necessary to get closer to know the familys potentials, weaknesses and rearrangements, understanding the meaning of the care relationships ( 11 ) , so as to instrumentalize the performance of the nursing professional for qualified care for these families, considering the increase in the life expectancy of this population, and the gap in the literature with this focus ( 8 , 12 ) . In this sense, the objective was to understand the experience of families in the care of children with myelomeningocele.…”

Estudo epidemiológico de nascidos vivos com Espinha Bífida no Brasil/ Epidemiological study of live births with Spina Bifida in Brazil

“…A Espinha Bífida corresponde a condição mais comum, correspondendo a 75% dos casos de DTN, afetando a coluna vertebral, e os outros defeitos são a Anencefalia e a Encefalocele, os quais afetam o crânio 2 . Essa malformação ocorre entre a terceira e quarta semana de gestação, podendo afetar qualquer região da medula espinhal, sendo a localização mais comum a lombossacral, influenciando diretamente o desenvolvimento funcional dos membros inferiores 3 .…”