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

Abstract

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.

Implications for Rehabilitation

• 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.

• Children and adolescents
• parents
• participation
• personal assistants
• profound intellectual and multiple disabilities
• qualitative

Acknowledgements

We are grateful to all the parents and personal assistants who participated in this study and for the cooperation with the disability organizations JAG, RBU and FUB.