Quality of life of families who have children with Cornelia de Lange syndrome in B...
| Full text | |
| Author(s): |
Rodrigues, Stephania A.
[1]
;
Fontanella, Bruno J. B.
[1]
;
de Avo, Lucimar R. S.
[1]
;
Germano, Carla M. R.
[1]
;
Melo, Debora G.
[1]
Total Authors: 5
|
| Affiliation: | [1] Univ Fed Sao Carlos, Dept Med, Sao Carlos, SP - Brazil
Total Affiliations: 1
|
| Document type: | Journal article |
| Source: | JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES; v. 32, n. 2, p. 413-426, MAR 2019. |
| Web of Science Citations: | 0 |
| 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. (AU) | |
| FAPESP's process: | 13/24498-8 - Quality of life in families of patients with intellectual disabilities |
| Grantee: | Débora Gusmão Melo |
| Support type: | Regular Research Grants |
| FAPESP's process: | 13/25193-6 - Quality of life in families of patients with severe to profound intellectual disabilities |
| Grantee: | Stephania de Araújo Rodrigues |
| Support type: | Scholarships in Brazil - Scientific Initiation |