Professor Mats Granlund Director, CHILD research group, Jonkoping University, Sweden. Co-Director, Swedish Institute of Disability Research – Europe’s leading institute on disability research. The CHILD research program was founded in 1997, and involves 40+ researchers. The focus of Prof Granlund’s work is on participating in everyday life of children with impairments or long term health conditions and their families; and The development and application of the ICF-CY health classification system

Participation as a process and an outcome in childhood disability research Professor Mats Granlund CHILD Research Group

Universal aspects of participation Being there – to participate requires attendance Attending is not enough – involvement while attending is necessary Context for participation is dependent on culture and the task

Theoretical and political roots Civil rights – having the same rights -> availability and accessibility Political conventions – UNCCR & UNCRPD -> ICF-CY Legislation Focus on attending Developmental psychology and eudaimonic philosophy Doing because its worth doing -> involvement as a prerequisite for change Proximal processes -> time spent actively involved in interaction with persons, objects or activities that over time become more complex Focus on aspects of involvement in activities while attending

Participation as a process and an outcome Participation as a process can lead to competence, sense of self and preferences -> wellbeing and health Problems with frequency, duration and diversity of attendance affects outcomes Problems with involvement affects outcomes Participation as an outcome is dependent on competence, sense of self preferences and environment -> wellbeing and health Problems with participation affects participation Problems with competence, sense of self, preferences and environment affects participation outcomes

What do we know about attending? Few aspects of attending are strongly related to specific impairments or diagnostic categories Severity of impairment is related to aspects of attending Sense of self and preferences are important for attending Environmental conditions are strongly related to attendance Attending is the focus of the social model and can be intervened with through legislation and design of service systems Many people with disabilities and their families in the world still have problems with attending (frequency, duration and diversity)

What do we know about involvement? Involvement is related to attendance Involvement might have stronger relations to certain types of impairment and/or diagnostic categories Involvement might be related to level of severity of impairment Sense of self and preferences are strongly related to involvement Other environmental aspects than for attendance are related to involvement (adaptability and acceptability of context) Few interventions for increasing engagement are evidence based

What is the relationship between attendance and involvement? The need for linking studies focused on attending and involvement (linking the social and medical models into a bio-psycho-social model?) The need for methods that can handle many causes and effects over time The need for valid measures of the dimensions that allow linking of time points The need for longitudinal studies over the life span

Questions & Discussion