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A family perspective of the value of a diagnosis for Intellectual Disability: experiences from a genetic research study

Lookup NU author(s): Dr Nina Hallowell

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Abstract

Many professionals working with individuals with intellectual disability are unconcerned with why someone has the impairment. Genetic aspects may be viewed as, at best irrelevant, but more often, potentially negative. However, where the intellectual disability may be inherited, there are implications for family members and the individual. The data reported here derive from a study of the experiences of families with many boys or men with intellectual disability who were participating in genetic research aimed at finding new causes of intellectual disability. A qualitative design was used, interviewing 120 members of 37 kinships and using framework analysis to explore the data. These family members were positive about participating in the genetic research. They wanted an explanation for what was going on in their family and to enable other family members to have choices about reproduction although the genetic research was unlikely to benefit individuals with intellectual disability.

Publication metadata

Author(s): Statham HW, Ponder M, Hallowell N, Richards MPM, Raymond L

Publication type: Article

Publication status: Published

Journal: British Journal of Learning Disabilities

Year: 2011

Volume: 39

Issue: 1

Pages: 46–56

Print publication date: 04/03/2010

ISSN (print): 1354-4187

ISSN (electronic): 1468-3156

Publisher: Wiley-Blackwell Publishing Ltd.

URL: http://dx.doi.org/10.1111/j.1468-3156.2010.00615.x

DOI: 10.1111/j.1468-3156.2010.00615.x

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