Família e comunidade como apoio às pessoas no enfrentamento da paraparesia espástica tropical

Abstract

The objetive of the present research is to identify the strategies used by people who suffer with HTLV-1 Associated Myelopathy or Tropical Spastic Paraparesis (HAM/TSP), a progressive and neurodegenerative condition which takes to the need of help for walking or wheel chairs, for facing the problems consequents to this life condition. It’s based on the qualitative approach and by means of focus groups and semi-structured interview whose statements were recorded, transcribed and submitted to the analysis of the content of Bardin, which signaled the need for guidance on the strategies used to cope with the disease. The results showed categories, each one, with their analysis themes or subcategories. As a proposal for the work, the foundation, presentation and discussion are based on the category: Relationship of otherness of others: I-others in networks of interhuman care and relationship. In the immersion of the decease the family and the community - especially in the association - and the reliance on superior forces were shown as the main foundations for giving meaning to life in this health condition. Health professionals can take this contents to themselves for a most integral and humanized approach on caring people suffering with HAM/TSP. The conclusion is that the care of people who suffer with HAM/TSP requires the strengthening of the links between social relationship, more especificly with Family, patient association, health professionals and spiritual development.