Abstract
Parents of children with disabilities are faced with daily difficulties leading to organizational complications and time constraints. They are at risk of developing distress that requires support. The objective was to understand the difficulties encountered in daily life and in the moments initially devoted to rest. Information on the organization and daily difficulties and during rest periods, as well as the desired assistance, is collected from parents of children, adolescents or adults with disabilities through a dual quantitative and qualitative approach. Five classes identified daily difficulties and six classes defined difficulties associated with rest time. Requests for assistance (via the Internet, structures, allowances or relatives) have been developed. In addition, a thematic analysis identified three main themes: reasons for lack of support, barriers to access to support and wishes for support. The chronicity of the above-mentioned difficulties and the time-consuming tasks do have consequences on the parents’ personal life, even when the child grows up. They expressed their wish to benefit from home help, which seems to be the most appropriate in relation to the daily workload.
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