Relações de amizade de adultos com osteogênese imperfeita
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Data
2020-03-23
Autores
Almeida, Isabela Medeiros de
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Universidade Federal do Espírito Santo
Resumo
The Imperfecta Osteogenesis (IO), best-known as brittle bone disease, is a cronic, rare and congenital illness. Its main characteristic is a bone fragility, that impacts on the social practice of some activities and hight probability of bone‟s fractures and deformations. Considering this pathology, the study‟s general objetive is to investigate friend‟s participation on IO carrier‟s life and its role dealing with the disease. A qualitative study, was realized, through the trasncript episodic interviews about friendship. Questions were organize in three areas: (a) Imperfecta Osteogenesis‟ coping, (b) Network Friendship (c) Friendship and Imperfecta Osteogenesis. Participated in the study seven adults with IO diagnosis and in treatment from hospital in Grande Vitória . Samples were collected on the hospital facilities, and the individuals were indicated by hospital professionals. For the data analysis, the method used was thematic analysis. The narratives were organized in emerging issues and categorized according to its substance. Main findings pointed out participants‟ high ability of adaptation and coping. Main strategies used were learning about their health conditions, acceptance, empowerment, maturity and autonomy development. About friendship, its importance were also observed on the IO wide care and in the social support of the patient. Friends contributed also for a better socialization in general society, support the development of a leading atitude in social context. Nevertheless, a low socialization was perceived, note by a restrict relationship network beyond the family and social isolation due to exaggerated concerns and fears. This dissertation recognizes the lack of studies on the social context of patients with rare diseases, focusing on IO. Inthat way, highlights its crucial role: coping with the disease and monitoring their treatment, considering the individual's personal development and its social position on society.
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Osteogênese imperfeita , Inclusão social , Relacionamento interpessoal