Hatton, Chris and Akram, Yasmeen and Robertson, Janet M. and Shah, Robina and Emerson, Eric (2003) The disclosure process and its impact on South Asian families with a child with severe intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 16 (3). pp. 177-188. ISSN 1360-2322Full text not available from this repository.
Although several research studies have investigated parental experiences of the disclosure process in White families with a child with severe disabilities, little work has focused on the experiences of South Asian families. Materials and methods This study aimed to provide a rich picture of the disclosure experiences of South Asian parents of a child with severe intellectual disabilities, using semi-structured qualitative interviews with 26 parents over two time points, and structured quantitative interviews with 136 parents. Results Parents reported variable experiences of the disclosure process, with many parents experiencing disclosure in the wrong language for them and most parents reporting little post-disclosure support. Parents identified good practice in disclosure as prompt disclosure in the appropriate language, with the partner present (where possible), with emotional support as part of the process, with clear and practical information, and linked to post-disclosure support from a keyworker. Conclusions Good practice in disclosure was also associated with parental understanding of their child, and parents being more likely to mobilize informal and formal supports. The implications of these findings are discussed.
|Journal or Publication Title:||Journal of Applied Research in Intellectual Disabilities|
|Uncontrolled Keywords:||culture • disclosure • intellectual disabilities|
|Subjects:||R Medicine > R Medicine (General)|
|Departments:||Faculty of Health and Medicine > Health Research|
|Deposited By:||Mr Richard Ingham|
|Deposited On:||15 Sep 2008 17:01|
|Last Modified:||07 Jan 2015 12:54|
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