Social representations of patients and relatives regarding Type 1 Neurofibromatosis

• Published in: Ciência & saude coletiva 2013-08, Vol.18 (8), p.2359-2368
• Main Authors: Cerello, Alessandra Craig, Ingrid Faria Gianordoli-Nascimento, Alline Hellen Moreira, Virgínia Silva Rocha, Luciana deMoura Ribeiro, Nilton Alves de Rezende
• Format: Article
• Language: Portuguese
• Subjects: Content analysis
• ISSN: 1413-8123; 1678-4561
• DOI: 10.1590/S1413-81232013000800020

Type 1 Neurofibromatosis (NF1) is a disease with diverse manifestations. Few studies have addressed the psychological aspects associated with it from the perspective of those who have NF1 or their relatives. In this study 46 subjects were interviewed, 28 people with NF1 (Group P) and 18 relatives (Group F) seeking to identify the understanding of the day-to-day reality experienced by these two groups and possible distinctions between them, based on the social representations of each group. Data analysis was conducted using Classic Content Analysis. The respondents' answers were organized into categories and subcategories based on their meanings. The results revealed that the quantitative distribution of the categories had similar frequencies for both groups. However, important qualitative differences were observed in terms of the meanings of the answers. Difficulty in obtaining information about NF1 along with few references about social support networks by people with the disease or their family members contributed to the identification of a veil of social invisibility around NF1. These aspects highlight the need for greater investment in research and intervention related to NF1 in order to expand the social coping conditions for those afflicted with the disease.