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.
Act Concerning Support and Service for Persons with Certain Functional Impairments 1993:387. Stockholm, Sweden: Ministry of Health and Social Affairs, Sweden.
2.
Blumer (1962) in CharonJ M(2010) Symbolic Interactionism: An introduction, and interpretation, an integration. 10th ed. Upper Saddle River, NJ: Pearson Prentice Hall.
3.
Blumer (1986) in CharonJ M(2010) Symbolic Interactionism: An introduction, and interpretation, an integration. 10th ed.Upper Saddle River, NJ: Pearson Prentice Hall.
4.
BrettJ (2002) The experience of intellectual disability from the perspectives of parents of children with profound impairment: is it time for an alternative model of intellectual disability?Intellectual Disability and Society17(7): 825–843.
5.
DowlingMDolanL (2001) Families with children with disabilities-inequalities and the social model. Intellectual disability and Society16(1): 21–35.
6.
EinfeltSLEllisLADoranCMEmersonEHorsteadSKMaddenRH. (2010) Behavior problems increase cost of care of children with intellectual disabilities. Journal of Mental Health Research in Intellectual Disabilities3(4): 202–209.
7.
EmersonEHattonC (2010) Socio-economic position, poverty and family research. In: LMGliddenMMSeltzer (eds) On Families: International Review of Research on Mental Retardation. New York, NY: Academic Press.
8.
FlynnR (2002) Short Breaks: Providing Better Access and More Choice for the Black Disabled Children and Their Parents. Bristol, UK: The policy Press.
9.
GreenSE (2007) “We’re tired, not sad”: benefits and burdens of mothering a child with disability. Social Science and Medicine64: 150–163.
10.
GordonDParkerRLoughranFHeslopP (1996) Chidren with Disabilities in Private Households: Are-Analysis of the OPCS Investigation. London, UK: The Stationary Office.
11.
HavemanMBerkumGVan ReijndersRHellerT (1997) Differences in service needs, time demands, and caregiving burden among parents of persons with mental retardation across the life cycle. Family Relations46(4): 417–425.
KvaleSBrinkmannS (2009) Den Kvalitativa Forskningsintervjun. Lund, Sweden: Studentlitteratur.
14.
LärkaPSBernehällCIBrodinJ (2001) Hur ser stödet till familjer med barn med muskelsjukdomar ut?Social Medicinsk Tidskrift78(2): 161–171.
15.
NachshenJSJamiesonJ (2000) Advocacy, stress and quality of life in parents of children with developmental disabilities. Developmental disabilities Bulletin (28): 39–55.
16.
NalavanyBAGliddenLMRyanSD (2009) Parental satisfaction in the adoption of chidren with learning disorders: the role of behavior problems. Family Relation58: 621–633.
17.
Olauson and Havalstedt (2001) Depression in mothers and fathers of children with intellectual disability. Journal of Intellectual Disability Research45(6): 535–543.
18.
OlssonMBHwangCP (2003) The influence of macro structure of society on the life situation of families with a child with intellectual disability-Sweden as an example. Journal of Intellectual Disability Research47(4/5): 328–341.
19.
OlssonMBHwangCP (2006) Well-being, involvement in paid work and divisionof child care in parents of children with intellectual disabilities in Sweden. Journal of Intellectual Disability Research50: 963–969.
20.
OlssonMBHwangCP (2008) Socioeconomic and psychological variables as risk and protective factors for parental well-being in families of children with intellectual disabilities. Journal of Intellectual disability Research52(12): 1102–1113.
21.
ParishSLCloudM (2006) Financial well-being of young children with disabilities and their families. Social Work51(3): 223–232.
22.
ParishSLSeltzerMGreenburgJSFloydF (2004) Economic implications of caregiving at midlife: comparing parents with and without children who have developmental disabilities. Mental Retardation42(6): 413–426.
23.
PascaleM (2010) Cartography of Knowledge: Exploring Qualitative Epistemologies. Thousand Oaks, LA: Sage Publications, Inc.
24.
SamuelPSHobdenKLLeRoyBWLaceyKK (2012) Analysing family service needs of typically underserved families in the USA. Journal of Intellectual Disability Research56(1): 111–128.
25.
SharmaN (2002) Still Missing Out? Ending Poverty and Social Exclusion: Messages to Government from Families with Disabled Children. Ilford, UK: Barnardos.
26.
ShearnJToddS (2000) Maternal employment and family responsibilities: the perspectives of mothers of children with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities13: 109–131.
27.
SimkissDEBlackburnCMukoroFOReadJSpencerN (2011) Childhood disability and socioeconomic circumstance in low and middle income countries: systematic review. BMC Pediatrics11: 1471–2431.
28.
SummersJAMarquisJMannanHTurnbullAFlemingKPostonD. (2007) Relationship of perceived adequacy of services, family professional partnership, and family quality of life in early childhood service programmes. International Journal of Disability, Development and Education54(3): 319–338.
29.
Swedish Code of Statutes (1993) Act Concerning Support and Service for Persons with Certain Functional Impairments. SFS 1993: 387.
30.
TotsikaVHastingsRPEmersonEBerridgeDMLancasterGA (2011) Behavior problems at five years of age and maternal mental health in Autism and intellectual disability. Journal of Abnormal Child Psychology39: 1137–1147.
31.
WangMMannanHPostonDTurnbullAPSummersJA (2004) Parents perception of advocacy activities and their impact on quality of life. Research and Practice for Persons with Severe Disabilities29(2): 144–155.
32.
WernerSEdwardsMBaumNBrownI (2009) Family quality of life among families with a member who has an intellectual disability: an exploratory examination of key domains and dimensions of the revised FQOL survey. Journal of Intellectual Disability Research53(6): 501–511.
33.
ZhengXChenRLiNDuWPeiLZhangJ. (2012) Socioeconomic status and children with intellectual disability in China. Journal of Intellectual Disability Research56: 212–222.
