Options
Title
Community participation: Conversations with parent-carers of young women with Rett syndrome
Fields of Research (FoR) 2008:
Author(s)
Publication Date
2014
Socio-Economic Objective (SEO) 2008
Abstract
Background: People who have profound intellectual and multiple disabilities face significant challenges to participating in their community and are reported to have few friends. In this paper, the issue of how this is addressed by parent-carers of young women with Rett syndrome is explored. Method: Transcripts of in-depth interviews with 6 families registered with the population-based Australian Rett Syndrome Database were examined, guided by a theory of social construction, for themes of participation. Results: The majority of parent-carers saw social participation as an unrealistic expectation due to their daughters' difficulties with communication. At the same time, parent-carers spontaneously recounted details of their daughters' social connections within their local communities. This was positively associated with the presence of siblings. Conclusions: Young women with Rett syndrome participate socially in their community. Encouraging parent-carers to continue with small-scale strategies that pay heed to their concerns and fears has the potential to enhance their daughters' access to the benefits associated with friendship.
Publication Type
Journal Article
Source of Publication
Journal of Intellectual and Developmental Disability, 39(3), p. 243-252
Publisher
Informa Healthcare
Place of Publication
Australia
ISSN
1469-9532
1366-8250
Fields of Research (FoR) 2020
Socio-Economic Objective (SEO) 2020
Peer Reviewed
Yes
HERDC Category Description
Peer Reviewed
Yes
Statistics to Oct 2018:
Visitors: 559<br />Views: 562<br />Downloads: 0
Permanent link to this record