Qualidade de vida de familiares de pessoas surdas atendidas em um centro de reabilitação

Abstract

The aim of this study was to assess the quality of life of deaf people's relatives in a rehabilitation service. This descriptive study was conducted from March to June 2005 and a sample of fifteen parents of deaf people assisted in CEPRE/FCM/UNICAMP was interviewed. It was used a Portuguese version of the generic instrument of quality of life assessment WHOQOL--BREF (World Health Organization Quality of Life), along with an identification questionnaire and socio-demographic data. The SPSS program was used in the statistics analysis, with the scores transformed from zero to 100. The Research Ethics Committee of the School of Medical Sciences of Unicamp approved this investigation. The sample interviewed consisted in a majority of women (93.3%), all homemakers with an average of 44 years old. The evaluation of the different items at WHOQOL--BREF indicated that the relatives interviewed admitted to have a good or a very good quality of life. The study showed a better quality of life in the physical (73.8%) and social relationship aspects (72.2%). A lower perception could be seen in the environment domain (51.8%) probably because of their socio-cultural conditions, as well as in the psychological domain (63.3%), which may be related to the fact of living together with a deaf child.

Adaptação Cultural da Escala de Qualidade de Vida Familiar (Family Quality of Life Scale) para o Português Brasileiro

“…In this study, despite the particularities of domain dissatisfactions and a different family profile, families reported being satisfied with all areas of family life when the general FQL was computed, as seen in other investigations (17,18) . Thus, we believe that choosing this scale to evaluate FQL with deaf children showed us the process of role transformation within the family structure owing to the discovery of a deaf child.…”

“…The fourth aspect to be discussed is the level of satisfaction for each domain of the scale, which registers that the greatest satisfaction is family interaction, and the lowest level of satisfaction is associated with emotional well-being (12,(17)(18)(19) . The family interaction domain comprises items about support that each family member provides to the other, the items include the time the family spends together, the opening they have to talk to each other, the solution of problems in groups, family support to reach personal goals, demonstration of affection, and the way how they deal with the highs and lows of life.…”

“…Following emotional well-being, the lowest satisfaction index was registered to the disability-related support, which is a very commonly discussed theme among experts (17)(18)(19) , because this is the domain that discusses how parents deal with their children's deafness every day. When they do not have the opportunity of going to a parents' group, they do not receive counseling or reception or they even do not have anyone to talk to in order to clarify their doubts; so, these parents exhibit isolated thoughts, increasing false beliefs, with difficulties both in the child and family's development (17,(19)(20)(21)(22)(23) .…”

Implante coclear e qualidade de vida: estudo com pais e familiares de crianças surdas

“…Tais dados evidenciam o fato de que a assistência e os cuidados com a saúde das crianças continuam sendo funções desempenhadas pela mulher 16 , apesar dela ter entrado no mercado de trabalho de forma mais intensa e liderar o lar, havendo ou não a presença masculina 17,18 . A maioria dos respondentes definiu-se em situação civil estável, o que concorre para a organiza- dos respondentes, considerando-se os domínios: meio ambiente e relações sociais.…”

O que ele vai ser quando crescer? Expectativas de pais de crianças surdas

“…6 A partir do diagnóstico da surdez cada família reage de uma forma peculiar, podendo essa relação ficar vulnerável 7 , uma vez que a presença de uma criança surda no ambiente familiar se confronta com a idealização e expectativas dos pais. Os planos de futuro em relação à essa criança são alterados pela nova condição de vida imposta pela surdez.…”