Participation at home of adults with multiple disabilities and influencing factors from their parents' perspective.

Abstract

Purpose: To understand participation at home of adults with multiple disabilities and the indicators of their engagement from the parents' perspective as well as to explore the influencing environmental factors.

Methods: A qualitative, descriptive design was used. Participants had to be the parent of an adult presenting multiple disabilities aged between 21 and 65 with no degenerative diagnosis. Semi-structured interviews were conducted using an interview guide, anchored in the Human Development Model - Disability Creation Process and developed through an iterative process. Data were analyzed using a 6-step qualitative analysis process.

Results: The majority (5/8) of participating parents were aged between 56 and 61 years and were the parents of an adult with multiple disabilities aged between 21 and 41. Two themes for participation were generated: communication to build relationships, and they are disabled, but not so much whereas four themes relating to environmental factors were generated: context as a determinant of meaningful activity, the effects of the caregiver's attitude on social participation, the importance of the relationship of trust, and facilitating participation through adaptations.

Conclusion: Non-verbal communication and context of realization of activities of adults with multiple disabilities should be considered as they contribute to making participation meaningful.