Quality of life of parents of autistic adults: experience before, during, and after the transition to a specialized resource

Principal investigator

Malena Argumedes

Researchers

Martin Caouette, Marie-Michèle Dufour, Valérie Martin

Project status:

Ongoing

Years:

June 2025 - May 2027

Abstract

This project focuses on the quality of life of parents who have an adult child (aged 21 and over) with autism. More specifically, it examines parents’ perceptions regarding their child’s difficulties, their own parental resources, and their reactions during a major family transition: the placement of their child in a specialized residential facility outside the family home. The overall objective of this research project is to describe the changes in various components related to parental quality of life following the integration of their autistic child into a specialized resource. More specifically, the project aims to understand how parents perceive stressors, resources, their overall situation, and their quality of life at three distinct points in time: (1) prior to the integration of their adult autistic child into a specialized resource, (2) during the integration process, and (3) after the integration. A qualitative research design will be employed, aligned with the Double ABCX model. The study will involve a semi-structured individual interview focusing on aspects related to parental quality of life before, during, and after their child’s transition into a specialized residential setting. Additionally, a socio-demographic questionnaire will be administered to gather information on the characteristics of both the parents and their autistic child. A maximum of 30 parents will be recruited, in line with recommendations for achieving sufficient information power (Malterud et al., 2016).

Funding Organization:

Conseil de recherches en sciences humaines (CRSH) – Développement Savoir