Community participation: Conversations with parent-carers of young women with Rett syndrome

† This manuscript was accepted under the Editorship of Susan Balandin.

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.

Keywords:

• social participation
• friends
• family
• intellectual disability
• Rett syndrome
• communication

Notes

† This manuscript was accepted under the Editorship of Susan Balandin.