Improving the Health and Well-Being of Adults With Conditions of a Genetic Origin: $small extit{Views from Professionals, Syndrome}$ $small extit{Support Groups and Parents Authors}$Report as inadecuate


Improving the Health and Well-Being of Adults With Conditions of a Genetic Origin: $small 	extit{Views from Professionals, Syndrome}$ $small 	extit{Support Groups and Parents Authors}$


Improving the Health and Well-Being of Adults With Conditions of a Genetic Origin: $small extit{Views from Professionals, Syndrome}$ $small extit{Support Groups and Parents Authors}$ - Download this document for free, or read online. Document in PDF available to download.

Publication Date: 2016-10-24

Journal Title: Journal of Applied Research in Intellectual Disabilities

Publisher: Wiley

Language: English

Type: Article

This Version: VoR

Metadata: Show full item record

Citation: Redley, M., Pannebakker, M., & Holland, A. (2016). Improving the Health and Well-Being of Adults With Conditions of a Genetic Origin: $\small \textit{Views from Professionals, Syndrome}$ $\small \textit{Support Groups and Parents Authors}$. Journal of Applied Research in Intellectual Disabilities https://doi.org/10.1111/jar.12293

Description: This is the final version of the article. It first appeared from Wiley via https://doi.org/10.1111/jar.12293

Abstract: $\textbf{Background}$ Advances in medical genetics herald the possibility that health and social care services could be more responsive to the needs arising from a person's genotype. This development may be particularly important for those men and women whose learning disability (known internationally as intellectual disability) is linked to a neurodevelopmental condition of genetic origin. $\textbf{Method}$ This possibility is tested through interviews with samples of (i) professional ‘opinion former’ with nationally recognised clinical and/or academic interests in learning disabilities and genetics; (ii) representatives of syndrome organisations prompting the interests of families where someone has a neurodevelopmental condition, and parent-members of these same organisations. $\textbf{Results}$ The reporting and discussion of the interview data considers the possibility that notwithstanding the successes of the social model of disability, the health and wellbeing of people whose learning disability is associated with a neurodevelopmental condition could be better served by a more medicalised approach to their interests. $\textbf{Conclusion}$ While a more medicalised approach to this populations’ disabilities would appear to be beneficial, so long as it is focused on interventions to improve their lives rather than catalogues their deficiencies.

Keywords: genetics, health inequalities, healthcare, neurodevelopment syndromes, social care, intellectual disability

Sponsorship: This work was supported by a grant from the Medical Research Council under its Life-Long Health and Wellbeing initiative, project reference no. G0900035. Additional support for the preparation of this article came from the Health Foundation. The research was also supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) East of England at Cambridgeshire and Peterborough NHS Foundation Trust.

Embargo Lift Date: 2100-01-01

Identifiers:

External DOI: https://doi.org/10.1111/jar.12293

This record's URL: https://www.repository.cam.ac.uk/handle/1810/261249



Rights: Attribution 4.0 International

Licence URL: http://creativecommons.org/licenses/by/4.0/





Author: Redley, MarcusPannebakker, MerelHolland, Anthony

Source: https://www.repository.cam.ac.uk/handle/1810/261249



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