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

Abstract

To understand participation at home of adults with multiple disabilities and the indicatorsof their engagement from the parents’ perspective as well as to explore the influencing environmentalfactors.Methods: A qualitative, descriptive design was used. Participants had to be the parent of an adultpresenting multiple disabilities aged between 21 and 65 with no degenerative diagnosis. Semi-structuredinterviews 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 a6-step qualitative analysis process.Results: The majority (5/8) of participating parents were aged between 56 and 61 years and were theparents of an adult with multiple disabilities aged between 21 and 41. Two themes for participationwere generated: communication to build relationships, and they are disabled, but not so much whereasfour themes relating to environmental factors were generated: context as a determinant of meaningfulactivity, the effects of the caregiver’s attitude on social participation, the importance of the relationship oftrust, and facilitating participation through adaptations.Conclusion: Non-verbal communication and context of realization of activities of adults with multipledisabilities should be considered as they contribute to making participation meaningful.