title: Strategies that facilitate participation in family activities of children and adolescents with profound intellectual and multiple disabilities: parents' and personal assistants' experiences.
abstract: OBJECTIVE
  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.
  
  
  CONCLUSIONS
  Participation-facilitating strategies related to the child/adolescent and his or her proximal environments are identified to improve participation in children and adolescents with profound intellectual and multiple disabilities (PIMD). Examples of strategies for the child's/adolescents' proximal environment include "good knowledge about the child/adolescent", and, for the child/adolescent, include creating "sense of belonging" and "opportunities to influence". Identifying and making these strategies explicit may assist in enhancing the participation of children and adolescents with PIMD in family activities. People in the child's/adolescent's proximal environment need to set the scene for participation.
authors.affiliation: Swedish Institute for Disability Research, Jönköping University/CHILD , Jönköping , Sweden and.
authors.forename: Anna Karin
authors.initials: AK
authors.lastname: Axelsson
authors.forename: Christine
authors.initials: C
authors.lastname: Imms
authors.forename: Jenny
authors.initials: J
authors.lastname: Wilder
mesh_terms: D000293:Adolescent; D001290:Attitude; D002648:Child; D019988:Children with Disabilities / Q000523:psychology*; D005190:Family; D005260:Female; D006801:Humans; D008607:Intellectual Disability / Q000523:psychology*; D007407:Interviews as Topic; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology; D000297:Psychology, Adolescent; D035502:Trust; D055815:Young Adult
keywords: Children and adolescents; parents; participation; personal assistants; profound intellectual and multiple disabilities; qualitative