Hälsa och funktion i kvalitetsregistret för uppföljning av cererbral pares - CPUP : En genomlysning utifrån den internationella klassifikationen av funktion, funktionshinder och hälsa för barn och ungdom

Sammanfattning: Abstract: Objective: This study aimed at describing the health concept in the Swedish follow up programme for cerebral palsy (CPUP), with main focus on how aspects of participation is expressed in the agenda of the programme. Design: Document analysis: The home-page of CPUP was searched for three types of written material; references to the nature and aim of the programme, protocols used for data collection and abstracts from articles and reports on the list of publications. Within these all expressions of health, with bio-psycho-social understanding of the concept, were extracted and condensed with manifest content analysis. The meaning units obtained were linked to the International Classification of Function, Disability and Health – Child/Youth (ICF-CY). All resulting codes of participation were further compaired to an alternative model for describing the activity/participation component where the notion of "social participation" requires an aspect of role taking. The involvement of children/ youths and parents by the follow up routines were estimated and related to the results of the coding process. Results: 1276 meaning units were identified.The health focus of the CPUP involving data collected from children was on body and movement functions. The aspects in which parents were involved included more health aspects, especially if an optional assessment protocol aiming performance was used. Defined as peformance participation accounted for 19% of the meaning units (7% whitout the optional instrument). Defined as "societal participation" the rate of participation was under 3%. Conclusion: CPUP focuses on body-related aspects of health. The participation perspective needs strengthening to ensure the information needed to plan and implement interventions that have an impact on the self image of involved children. Thereby CPUP would gain an even stronger relation with the overall goal of Swedish habilitation services.