title: Parents' experience of support in Sweden: its availability, accessibility, and quality.
abstract: Semi-structured interviews were conducted with six parents of children with intellectual disabilities, in the Western region of Sweden. The aim of the study was to explore and to gain a deeper understanding of parents' experiences of received support for them and their children with intellectual disabilities. We focused particularly on their experiences of the availability, accessibility, and the quality of services. Parents in this study were unsure about what the diagnosis meant specifically for their child as well as for their whole family. Moreover, the parents experienced great difficulty in obtaining information about available services, which resulted in feelings of helplessness to some. Parents also reported that although services are available, they were not easily accessible. Lastly, parents felt that the quality of care and support were to some extent inadequate, as no attention was paid by professionals to their actual needs or wishes.
authors: Research and Development Center, Gårdavägen 2, Gothenburg, Sweden. hera.nowak@grkom.se
authors: Herawati I
authors: HI
authors: Nowak
authors: Malin
authors: M
authors: Broberg
authors: Mikaela
authors: M
authors: Starke
mesh_terms: D022126:Access to Information; D000328:Adult; D001290:Attitude; D002648:Child; D002675:Child, Preschool; D003258:Consumer Behavior; D004495:Education of Persons with Intellectual Disabilities; D005260:Female; D006297:Health Services Accessibility; D006380:Helplessness, Learned; D006801:Humans; D008607:Intellectual Disability / Q000175:diagnosis / Q000523:psychology* / Q000534:rehabilitation; D007406:Interview, Psychological; D008297:Male; D010290:Parents / Q000193:education / Q000523:psychology*; D011787:Quality of Health Care; D012944:Social Support; D013548:Sweden
keywords: Children; disability; intellectual; parents; support