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(Referência obtida automaticamente do Web of Science, por meio da informação sobre o financiamento pela FAPESP e o número do processo correspondente, incluída na publicação pelos autores.)

A qualitative study about quality of life in Brazilian families with children who have severe or profound intellectual disability

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Autor(es):
Rodrigues, Stephania A. [1] ; Fontanella, Bruno J. B. [1] ; de Avo, Lucimar R. S. [1] ; Germano, Carla M. R. [1] ; Melo, Debora G. [1]
Número total de Autores: 5
Afiliação do(s) autor(es):
[1] Univ Fed Sao Carlos, Dept Med, Sao Carlos, SP - Brazil
Número total de Afiliações: 1
Tipo de documento: Artigo Científico
Fonte: JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES; v. 32, n. 2, p. 413-426, MAR 2019.
Citações Web of Science: 0
Resumo

Background This study investigated the psychocultural perspectives concerning family quality of life among Brazilian families with children who have severe or profound intellectual disability. Methods Individual in-depth semi-structured interviews conducted with 15 mothers, selected by convenience, were analysed using a categorical thematic analysis technique. The themes were examined to allow for an interpretative approach of the results. Results Mothers revealed that their children with disabilities had insufficient access to services and support related to health care, transportation and recreation. Family quality of life was negatively affected by financial restrictions and social interaction difficulties. Caring for a child with disabilities seemed to be centred on the mother and religious coping appeared as a common psychological adjustment strategy. Conclusions Improving emotional and psychological cares, as well as social and practical measures comprising income support and access to appropriate health care, were inferred to be the mothers' priorities to improve their families' quality of life. (AU)

Processo FAPESP: 13/24498-8 - Qualidade de vida de famílias com pacientes com deficiência intelectual
Beneficiário:Débora Gusmão Melo
Linha de fomento: Auxílio à Pesquisa - Regular
Processo FAPESP: 13/25193-6 - Qualidade de vida de famílias com pacientes com deficiência intelectual severa à profunda
Beneficiário:Stephania de Araújo Rodrigues
Linha de fomento: Bolsas no Brasil - Iniciação Científica