Participation at home of adults with multiple disabilities and influencing factors from their parents’ perspective
Creators: name: Cutnam, Gabrielle
name: Kroumova, Elisa Iavorova
name: Rochette, Annie
Publisher: name: Taylor & Francis
Year: 2025
Subjects: subject: Neuroscience
subject: Ecology
subject: FOS: Biological sciences
subject: Science Policy
subject: Sociology
subject: FOS: Sociology
subject: Biological Sciences not elsewhere classified
subject: Mental Health

description: 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. Despite the assistance required to carry out all activities at home, adults with multiple disabilities can be involved on a daily basis according to their residual abilities.Rehabilitation professionals should be sensitive to non-verbal communication as it has been identified by the parents as the main indicator of participation and involvement.Rehabilitation professionals should pay attention to gestures, sounds and facial expressions of adults with multiple disabilities.Rehabilitation professionals should consider context of realization (e.g., location, time) of activities as it contributes to make these meaningful and to forge stronger bonds with those interacting within these activities. Despite the assistance required to carry out all activities at home, adults with multiple disabilities can be involved on a daily basis according to their residual abilities. Rehabilitation professionals should be sensitive to non-verbal communication as it has been identified by the parents as the main indicator of participation and involvement. Rehabilitation professionals should pay attention to gestures, sounds and facial expressions of adults with multiple disabilities. Rehabilitation professionals should consider context of realization (e.g., location, time) of activities as it contributes to make these meaningful and to forge stronger bonds with those interacting within these activities.