Osteogenese imperfeita: o desafio de gerar e gerir facilitadores. Estudo de caso
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2016
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A presente investigação teve como objeto de estudo a vivência de um indivíduo com Osteogénese Imperfeita (O.I.), doença crónica rara, caraterizada por fraturas frequentes dos ossos muitas vezes espontâneas, comprometendo a mobilidade e a autonomia do indivíduo. Definimos como objetivo geral: compreender como um indivíduo com Osteogénese Imperfeita consegue realizar o seu projeto de vida, em termos pessoais e profissionais, e como consegue gerar e gerir os facilitadores pessoais, sociais e familiares do seu quotidiano, em contextos diferentes, para atingir os seus objetivos. Tendo em conta que o nosso estudo necessita de ser adequado, fundamentado e refletido, optou-se pela metodologia de investigação qualitativa, numa abordagem de estudo de caso. Para a recolha e análise de dados seleccionámos as seguintes técnicas: pesquisa documental, entrevista semi diretiva, observação naturalista e análise de conteúdo. Através deste estudo foi possível identificar as estratégias e suportes que levaram o indivíduo em estudo, com 22 anos, a concluir o seu percurso escolar e fazer face à doença. Os suportes de ajuda permanentes por parte dos amigos e sobretudo da família, através de estratégias de coping e o recurso a ajuda de técnicos especializados geraram possibilidades que possibilitaram ao sujeito alcançar uma performance equilibrada. Através do cruzamento de dados recolhidos foi possível concluir que a vivência da O.I. afeta a autonomia deste sujeito, porém não o impede de se integrar, não só na comunidade onde reside, como na vida ativa. Assim, com a ajuda dos que lhe estão mais próximos e potenciando as suas áreas fortes, nomeadamente ao nível cognitivo, foi possível participar em algumas das atividades da comunidade onde reside. Pudemos apurar com este estudo as dificuldades sentidas nas acessibilidades no decorrer da sua vida escolar, social e familiar e graças às redes de suporte de que sempre beneficiou conseguiu superar o desafio de gerir e gerar facilitadores que o conduziram à pessoa que hoje é. Graças igualmente às tecnologias de apoio a que recorre diariamente, pode através de casa, realizar projetos na sua área profissional e gerir um negócio de turismo rural.
This research project had as its aim to study the experience of an individual with osteogenesis imperfecta (HI), a rare chronic disease characterized by frequent bone fractures often spontaneous, compromising the mobility and autonomy of the individual. We intend, in our study,to identify the facilitators that promote inclusion and accessibility in personal, social and professional life of the subject in study. We defined the general objective: to understand how an individual with osteogenesis imperfecta can make his life plan and more specifically identify social and family facilitators that the subject can mobilize in their daily lives, according to the perspective of family and friends; analyzing the subject's performances under study in different social contexts; demonstrates how an individual with osteogenesis imperfecta can be held personally and professionally. Given that our study needs to be appropriate, justified and reflected, it was decided that the most effective way to analyze the individual was through qualitative research methodology. In terms of the case study`s data collection and analysis we selected the following techniques: documentary research, several semi directive interviews and naturalistic observation. Through this study, it was possible to identify the strategies and extrenal support that led the individual under study, to complete their schooling through the last 22 years and endure the disease. Through continuous coping strategies and specialized technical assistance provided by the subject`s friends and family allowed him to achieve a balanced and happy life. Through the intersection of collected data it was concluded that the experience of O.I. affect the autonomy of the subject , but does not prevent you to integrate not only in the community where he resides as the active life . So with the help of which you are closer and enhancing its strong areas, namely the cognitive level , it was possible to participate in some community activities in which you reside . We were able to determine with this study the difficulties in accessibility in the course of their school , social and family life and thanks to the support networks have always benefited managed to overcome the challenge of managing and generating facilitators that led to the person he is today. Thanks also to assistive technologies it uses daily, can through home carry out projects in their professional area and manage a rural tourism business.
This research project had as its aim to study the experience of an individual with osteogenesis imperfecta (HI), a rare chronic disease characterized by frequent bone fractures often spontaneous, compromising the mobility and autonomy of the individual. We intend, in our study,to identify the facilitators that promote inclusion and accessibility in personal, social and professional life of the subject in study. We defined the general objective: to understand how an individual with osteogenesis imperfecta can make his life plan and more specifically identify social and family facilitators that the subject can mobilize in their daily lives, according to the perspective of family and friends; analyzing the subject's performances under study in different social contexts; demonstrates how an individual with osteogenesis imperfecta can be held personally and professionally. Given that our study needs to be appropriate, justified and reflected, it was decided that the most effective way to analyze the individual was through qualitative research methodology. In terms of the case study`s data collection and analysis we selected the following techniques: documentary research, several semi directive interviews and naturalistic observation. Through this study, it was possible to identify the strategies and extrenal support that led the individual under study, to complete their schooling through the last 22 years and endure the disease. Through continuous coping strategies and specialized technical assistance provided by the subject`s friends and family allowed him to achieve a balanced and happy life. Through the intersection of collected data it was concluded that the experience of O.I. affect the autonomy of the subject , but does not prevent you to integrate not only in the community where he resides as the active life . So with the help of which you are closer and enhancing its strong areas, namely the cognitive level , it was possible to participate in some community activities in which you reside . We were able to determine with this study the difficulties in accessibility in the course of their school , social and family life and thanks to the support networks have always benefited managed to overcome the challenge of managing and generating facilitators that led to the person he is today. Thanks also to assistive technologies it uses daily, can through home carry out projects in their professional area and manage a rural tourism business.
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Orientação: Isabel Sanches
Palavras-chave
MESTRADO EM CIÊNCIAS DA EDUCAÇÃO - EDUCAÇÃO ESPECIAL: DOMÍNIO COGNITIVO E MOTOR, EDUCAÇÃO, OSTEOGÉNESE IMPERFEITA, INCLUSÃO SOCIAL, ACESSIBILIDADE, ESTUDOS DE CASO, SUPORTE SOCIAL, EDUCATION, OSTEOGENESIS IMPERFECTA, SOCIAL INCLUSION, ACCESSIBILITY, CASE STUDIES, SOCIAL SUPPORT