Strategies that facilitate participation in family activities of children and adolescents with profound intellectual and multiple disabilities: parents' and personal assistants' experiences

摘要

Purpose: Participation throughout one's life plays a significant role for development and emotional well-being. For this reason, there is a need to identify ways to facilitate participation in family activities for children and adolescents with profound intellectual and multiple disabilities (PIMD). Methods: The study design was qualitative and explorative, based on semi structured interviews with 11 parents and 9 personal assistants of children with PIMD. Results: The interviews revealed participation-facilitating strategies relating to the children's/adolescent's proximal environment, such as "Availability and acceptability of the activity'', "Good knowledge about the child'' and a "A positive attitude of people close to the child'', as well as strategies related to the children/adolescents themselves: "Sense of belonging'', "Possible for the child/adolescent to understand'', "Opportunities to influence'' and "Feeling of being needed''. Conclusions: Children and adolescents with PIMD are dependent on support obtained through their environment. The identified strategies, individually adapted through awareness and knowledge by the parents and the personal assistants, provide important evidence to assist our understanding in gaining understanding about how to improve participation in family activities of children and adolescents with PIMD.