Organiserande av stöd och service till barn med funktionshinder : Om projektnät, språkliga förpackningar och institutionella paradoxer

Sammanfattning: This study explores the organising of services for disabled children and their families in Sweden. It is based on 83 interviews with parents and involved staff surrounding four disabled children, with both physical and intellectual disabilities, and between two and nine years old. Further, 15 meetings between parents and staff were observed, primarily serving as background material. The service providing organisations include child habilitation centres, technical aid centres, special schools for intellectually disabled children, regular pre-school, and personal assistance organisations. In the study, organising is understood as accomplished through sensemaking. Reality is conceived as intrinsically complex and ambiguous, and organised action as formed through establishment of common understandings. Sensemaking was investigated through a discursively oriented analysis, using "discursive packaging" as a concept denoting common resources for making sense of actual service practice and thus stabilising interaction. The service for the four children and their families emerged through the interviews as projects, within which activities are related and dependent. The service for each child consists of 3-6 loosely connected and relatively independent projects. Analysis revealed four central aspects of the organising of these projects. Firstly, actors label their activities in specific ways, and secondly, they contextualise these labels in ways that supplies meaning and consequences. Thirdly, discursive constructions of the child are used for describing and explaining the activities. Fourthly, the actors position themselves through labelling, contextualising and using constructions of the child. The four aspects function as mutual and intertwined resources in the ongoing organising of the service. Further, the foundations of organising were explored. Six institutionalised elements were identified, functioning as taken-for-granted patterns and values for the service: family centring, child focus, development orientation, expert rationality, use of professional discourses, and standardisation of service forms as "training once a week". This institutional order also comprises paradoxes and contradictions, as well as discursive devices for de-paradoxification. Four paradoxes are discussed, that influence the way service is shaped: fragmentation through professional discourses, the paradoxical practice of child focusing, the tension between expert rationality and family centring, and the tension between institutional projects and local reality. To describe the service, including the institutional patterning of projects and positions, the concept "project net" was formulated. The results are finally discussed in relation to literature, and implications for development of practice are discussed.