Dimensions subjectives de l'expérience de planification d'arrangements de vie futurs chez les parents perpétuels vieillissants vivant avec un adulte présentant un syndrome de Down

Abstract

This project consists of an exploratory research pertaining to the issues linked to the future life planning of elderly parents of an adult with Down syndrome. The studies we inventoried mainly focused on the amount of residential, financial and legal planning undertaken by these elderly parents. In our study, a fourth planning modality emerged, namely affective planning.This fourth modality, which posses a greater relational dimension, is highly significant in the eyes of the perpetual parents. To apprehend this concept in more depth, it appeared important to us to question ourselves about the reasons that drive a parent to engage or not in future planning. From a life-course perspective, this study had, as its first specific objective, to identify the subjective dimensions of experience that facilitate or act as obstacles to the initiation of a life planning process and, as its second specific objective, to explore the perceived needs for formal or informal support of the elderly parents in regards to planning. Our results demonstrate that many dimensions modulate the engagement of parents in such a process. Amongst the elements acting as barriers, we find, notably, the negative experiences and representations of formal services, the negative representations of alternative long-term care institutions and the religious, family or continuity values of the parents. The favorable aspects notably include the regular recourse to respite services and formal services. We've also demonstrated the importance of siblings in regards to immediate instrumental and affective support, but also their capital role concerning future planning. In terms of the perceived needs of the parents, needs for general information about potential alternatives, for financial support and for respite were frequently expressed by the ageing parents.