Format

Send to:

Choose Destination
See comment in PubMed Commons below
Cien Saude Colet. 2013 Aug;18(8):2359-68.

[Social representations of patients and relatives regarding Type 1 Neurofibromatosis].

[Article in Portuguese]

Author information

  • 1Faculdade de Medicina, Universidade Federal de Minas Gerais, Belo Horizonte, MG, 30.130-100, Brazil. alecerello@ufmg.br

Abstract

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.

PMID:
23896918
[PubMed - indexed for MEDLINE]
Free full text
PubMed Commons home

PubMed Commons

0 comments
How to join PubMed Commons

    Supplemental Content

    Full text links

    Icon for Scientific Electronic Library Online
    Loading ...
    Write to the Help Desk