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 indicators of their engagement from the parents' perspective as well as to explore the influencing environmental factors. 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. 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: <i>communication to build relationships</i>, and <i>they are disabled, but not so much</i> whereas four themes relating to environmental factors were generated: <i>context as a determinant of meaningful activity</i>, <i>the effects of the caregiver's attitude on social participation</i>, the <i>importance of the relationship of trust</i>, and <i>facilitating participation through adaptations</i>. Non-verbal communication and context of realization of activities of adults with multiple disabilities should be considered as they contribute to making participation meaningful.