| Texto completo | |
| Autor(es): |
dos Santos, Thamires Rosa
;
Carlucci, Nicoly Stefani Sevalho
;
de Avo, Lucimar Retto da Silva
;
Barbato, Ingrid Tremel
;
Pinto, Louise Lapagesse de Camargo
;
Pilotto, Rui Fernando
;
Germano, Carla Maria Ramos
;
Melo, Debora Gusmao
Número total de Autores: 8
|
| Tipo de documento: | Artigo Científico |
| Fonte: | JOURNAL OF COMMUNITY GENETICS; v. 14, n. 4, p. 12-pg., 2023-08-18. |
| Resumo | |
This study aimed to assess the Family Quality of Life (FQoL) of Brazilian families with male children with Fragile X syndrome (FXS). Data from 53 families were collected using forms that included sociodemographic and clinical information, as well as the Beach Center Family Quality of Life Scale, a 5-point Likert scale ranging from "very dissatisfied" (1) to "very satisfied" (5). The mean overall FQoL score was 3.56 & PLUSMN; 0.79; the emotional well-being domain had the lowest score (2.98 & PLUSMN; 1.11) and showed significant differences between the other domains: family interaction (3.81 & PLUSMN; 0.89; p < 0.001), parenting (3.66 & PLUSMN; 0.89; p < 0.001), physical and material well-being (3.48 & PLUSMN; 0.83; p < 0.001), and disability-related support (3.75 & PLUSMN; 0.98; p < 0.001). Physical and material well-being was the second-lowest domain and was statistically different from the family interaction domain (p = 0.013). Lower FQoL satisfaction ratings were found in families with children who had difficulty getting along with people of the same age (t(51) = -3.193, p = 0.002; d = 1.019) and difficulty in living together on a day-to-day basis (t(51) = -3.060, p = 0.004; d = 0.888). These results highlight the importance of proper emotional support for the family, emphasizing the need to provide assistance not only for individuals with FXS but also for other family members. Besides, we advocate for the adoption of public policies that provide financial assistance to families and the implementation of the Brazilian Policy of Comprehensive Care for People with Rare Diseases. (AU) | |
| Processo FAPESP: | 18/19875-0 - Qualidade de vida de famílias que têm filhos com doenças genéticas raras e/ou deficiência intelectual |
| Beneficiário: | Débora Gusmão Melo |
| Modalidade de apoio: | Auxílio à Pesquisa - Regular |
| Processo FAPESP: | 18/11901-2 - Qualidade de vida de famílias que tem filhos com síndrome do X-Frágil no Brasil |
| Beneficiário: | Thamires Rosa dos Santos |
| Modalidade de apoio: | Bolsas no Brasil - Iniciação Científica |