A Qualitative Study about Quality of Life in Brazilian Families with Children Who Have Severe or Profound Intellectual Disability

Autor/inn/en	Rodrigues, Stephania A.; Fontanella, Bruno J. B.; Avó, Lucimar R. S.; Germano, Carla M. R.; Melo, Débora G.
Titel	A Qualitative Study about Quality of Life in Brazilian Families with Children Who Have Severe or Profound Intellectual Disability
Quelle	In: Journal of Applied Research in Intellectual Disabilities, 32 (2019) 2, S.413-426 (14 Seiten)Infoseite zur Zeitschrift PDF als Volltext Verfügbarkeit
Zusatzinformation	ORCID (Melo, Débora G.)
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1360-2322
DOI	10.1111/jar.12539
Schlagwörter	Foreign Countries; Quality of Life; Severe Intellectual Disability; Family Environment; Mothers; Access to Health Care; Transportation; Recreational Activities; Social Life; Child Rearing; Religion; Coping; Psychological Patterns; Adjustment (to Environment); Emotional Response; Family Income; Brazil + Suchen Sie Ihr Suchwort? Ausland; Lebensqualität; Familienmilieu; Mother; Mutter; Verkehrswesen; Freizeitgestaltung; Soziales Leben; Kindererziehung; Bewältigung; Emotionales Verhalten; Familieneinkommen; Brasilien
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. (As Provided).
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Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2020/1/01