Canadian Council on Learning | Conseil Canadien sur l'Apprentissage

Collaboration among families with disabled members: Study of a learning and knowledge transfer system

Under the direction of Jean-Claude KALUBI

Work conducted by the team of Jean-Claude Kalubi, Paul Boudreault, Jean-Marie Bouchard, Diane Pelchat, Hélène Lefebvre, Isabelle Gélinas and Bernard Michallet

Background

The number of persons reporting that they live with one or more disabilities increased significantly between the last two post-censal surveys of the Canadian population conducted by Statistics Canada (PALS 2001; PALS 2006). This increase can be attributed in part to the aging population, but also to other factors, notably greater social acceptance of declared disabilities.

Goal

This research project examines the knowledge and learning developed by parents of disabled children and family members caring for persons with disabilities. The goal is not simply to identify the learning and knowledge of a specific social group with distinct experiences, but to also identify what facilitates and what impedes this process. In addition, the project looks at the results of the knowledge acquired by the family as it adapts to the disabilities of one of its members, in order to support this adaptation and the transfer of learning between players.

Results

During the data analysis, the key ideas and statements were cross-tabulated with variables from the ecosystem model, and then risk and protective factors were identified to clearly explain the resilience mechanisms of parents with disabled children. On the basis of the themes that emerged and the priority statements identified by participants, 16 conditions were identified as being likely to promote parental learning and structure the roles played by families in learning.

The most important of these conditions is that of peer support, given the isolation experienced by most of these parents. The “group effect” clearly appeared to be a catalyst for the active role and social development of parents, who are called upon to use all their resources and energy to offset the child’s deficiencies, disabilities and handicaps. The price of social inclusion depends on what they learn as well as how they respond to their child’s complex and special needs. In this regard, the parental experience resembles that of family caregivers. For both, uncertainty about the services available and an unknown future constantly challenge the key elements dealt with in this study: transferable knowledge and learning, learning in a group and as a group, and the development of learning communities and communities with common interests.