Compartilhamento da informação em comunidades de apoio na internet: experiências impactantes na vida de pessoas com Doença de Stargardt

Abstract

This work aims at understanding how information sharing in support communities on the internet is capable of promoting changes in the ways of feeling, thinking and acting in the daily lives of Visually Impaired People. Initially, there is a literature review on Social Support, Social Networks on the Internet and Visually Impaired People. Next, approaching Phenomenology for its investigative stance and Behavior Change Studies due to their theoretical structures, we seek to debate the following key concepts: Consciousness, Perception, Intersubjectivity, Empathy, Attitude, Motivational Process, Habit and Social Influence. In order to identify life experiences related to visual impairment and remarkable experiences in support communities on the Internet, we designed a qualitative exploratory in-depth empirical research. Empirical Phenomenology was combined with Critical Incident Technique to collect, describe and systematize the experiences of members of a support community for people with low vision: the Stargardt Virtual Group. A survey recruited and interviewed 12 participants, and 11 of them were compatible with the survey’s pre-established inclusion requirements. Interviews happened by phone calls, were recorded and transcribed with a semi-structured script. After we described and summarized the material, it resulted in the identification of nine life milestones experiences about visual impairment and seven remarkable experiences within support communities on the internet. As for the results, we learned that support communities on the Internet play a relevant role as a source of information, a tool in the construction of a sense of acceptance and self-declaration of the disease and strengthening the sense of belonging to a community. When participants reach these aspects in life, they stated a gradual reduction in the feeling of need to participate of these support communities intensively. On the other hand, several conflicts and contradictions were reported within these communities, highlighting moderators’ behaviors regarding the control of scientifically proven information, a loss of thematic focus and the relationship between speeches building dramatic narratives and overcoming stories in experience reports.