'No no, you cannot say that!' Perceptions and experiences of parents of preschool children with intellectual disabilities in Sweden

Using semi-structured interviews this study investigated the personal experiences of parents of pre-school children with intellectual disabilities within the Swedish social support system. Thirteen parents of 10 children participated. Interview transcripts were qualitatively analysed using interpretative phenomenological analysis. Three themes emerged: orchestrating formal support; early intervention; and informal support. Parents described orchestrating different organisations within the formal support system and thinking through how they articulated their needs in order to obtain desired supports. Syndrome specific parental groups provided information which parents used to obtain support from the municipality and/or habilitation. The importance of adapting early intervention to both child and family needs is highlighted. The implications of these findings from a family-centred perspective are discussed.