Abstracts
Résumé
Être parent d’une personne ayant une déficience intellectuelle (DI) implique une responsabilité s’étendant sur plusieurs décennies; responsabilité qui se transfère parfois vers la fratrie en raison du vieillissement des parents. Peu d’études s’intéressent au point de vue des proches (parents, fratrie, autres membres de la famille) concernant la période couvrant la fin de vie de la personne présentant une DI. Afin de favoriser une meilleure compréhension de cette situation et de soutenir le développement des pratiques, cette étude de la portée visait la description des expériences et des besoins des proches d’une personne ayant une DI lors de sa fin de vie. Cinq bases de données pertinentes ont été interrogées (CINHAL, Medline, PyscInfo, Social Services Abstracts et Sociological Abstracts). Puis, 21 articles, publiés entre 1997 et 2021, correspondant aux critères d’inclusion, ont été sélectionnés. Le logiciel d’analyse de recherche qualitative NVivo a été utilisé pour effectuer une analyse thématique de ces études. L’accompagnement de la personne présentant une DI en fin de vie ainsi que le deuil subséquent étaient les deux thématiques principalement abordées par les proches consultés. Cette étude a mené au constat que ces derniers perçoivent leurs expériences de proche aidance et de deuil comme différentes de celles vécues par des proches d’une personne sans DI, suscitant ainsi des besoins particuliers de support formel et informel. Il apparaît ainsi crucial de développer des connaissances sur ces besoins afin d’optimiser les pratiques de soutien auprès des proches d’une personne ayant une DI en fin de vie ou décédée.
Mots-clés :
- deuil,
- fin de vie,
- déficience intellectuelle,
- proche aidant,
- étude de la portée
Abstract
Parenting a child with intellectual disability (ID) involves a responsibility spanning decades; responsibility which is sometimes transferred to siblings due to the aging of parents. Few studies are interested in this particular parental trajectory, especially with regard to the point of view of relatives (parents, siblings, other family members) concerning the period covering the end of life of the person with an ID and the bereavement that follows. In order to develop a better understanding of this situation and to support the development of practices, this scoping review aimed to describe the experiences and needs of family caregivers of a person with ID receiving end-of-life care. Five databases were searched (CINHAL, Medline, PyscInfo, Social Services Abstracts and Sociological Abstracts). 21 studies corresponding to the inclusion criteria were selected. Qualitative research analysis software NVivo was used to conduct a thematic analysis of the 21 studies included. The support offered during the end-of-life as well as the bereavement that follows were the two themes mainly addressed by the participants. This study led to the observation that relatives perceived their experiences of close support and bereavement as different from those experienced by relatives of a person without ID, thus creating specific needs for formal and informal support. It therefore appears crucial to develop knowledge of these needs in order to optimize support practices for the relatives of a person with ID at the end of life.
Keywords:
- bereavement,
- end-of-life,
- intellectual disability,
- family caregiver,
- scoping review
Appendices
Références
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