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  • Title: A qualitative study about quality of life in Brazilian families with children who have severe or profound intellectual disability.
    Author: Rodrigues SA, Fontanella BJB, de Avó LRS, Germano CMR, Melo DG.
    Journal: J Appl Res Intellect Disabil; 2019 Mar; 32(2):413-426. PubMed ID: 30353627.
    Abstract:
    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.
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