Health advocacy: a vital step in attaining human rights for adults with intellectual disability

Brolan, C. E., Boyle, F. M., Dean, J. H., Taylor Gomez, M., Ware, R. S. and Lennox, N. G. (2012) Health advocacy: a vital step in attaining human rights for adults with intellectual disability. Journal of Intellectual Disability Research, 56 11: 1087-1097. doi:10.1111/j.1365-2788.2012.01637.x

Author Brolan, C. E.
Boyle, F. M.
Dean, J. H.
Taylor Gomez, M.
Ware, R. S.
Lennox, N. G.
Title Health advocacy: a vital step in attaining human rights for adults with intellectual disability
Journal name Journal of Intellectual Disability Research   Check publisher's open access policy
ISSN 0964-2633
Publication date 2012-11
Sub-type Article (original research)
DOI 10.1111/j.1365-2788.2012.01637.x
Volume 56
Issue 11
Start page 1087
End page 1097
Total pages 11
Editor Tim Stainton
Isabel Clare
Place of publication Chichester, West Sussex, United Kingdom
Publisher Wiley-Blackwell Publishing
Collection year 2013
Language eng
Formatted abstract
Background People with intellectual disability (ID) experience health inequity compared with the general population, a key contributing factor being disparities in social determinants of health. The enactment of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) provides a platform for the progression and promotion of health and other interconnected rights to address barriers to the highest attainable standard of health for this populace. Rights can be brought to life through advocacy efforts. This paper explores the meaning, perceptions and experiences of advocacy by family members and paid support workers of adults with ID and locates the findings within a health and human rights discourse.
Methods As part of a larger randomised controlled trial, 113 parents and 84 support workers of adults with ID completed a telephone interview that included open-ended questions about their understanding and experiences of advocacy. Thematic analysis was used to identify relevant themes.
Results Five key themes were identified. The first underscored how advocacy to ‘speak up’ for the person with ID is integral to both parent and support worker roles. The second and third themes considered the contexts for advocacy efforts. Access to quality health care was a core concern, along with advocacy across other areas and sectors to address the person's wider psychosocial needs. The remaining themes highlighted the many dimensions to advocacy, including differences between parent and support worker views, with parental advocacy being an expression of ‘caring’ and support workers motivated by a ‘duty of care’ to protect the individual's ‘rights’.
Conclusion Parent and support worker advocacy provides one means to address the social determinants of health and fulfilment of health rights of and for people with ID. Policy and practice in the context of governmental obligation under the CRPD should support advocacy and make health rights the reality not rhetoric for this group of men and women.
Keyword Advocacy
Disability support workers
Human rights
Q-Index Code C1
Q-Index Status Confirmed Code
Institutional Status UQ
Additional Notes Special Issue: Human Rights and People with Intellectual Disabilities

Document type: Journal Article
Sub-type: Article (original research)
Collections: Official 2013 Collection
School of Public Health Publications
School of Medicine Publications
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Citation counts: TR Web of Science Citation Count  Cited 4 times in Thomson Reuters Web of Science Article | Citations
Scopus Citation Count Cited 5 times in Scopus Article | Citations
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Created: Thu, 13 Dec 2012, 13:33:09 EST by Geraldine Fitzgerald on behalf of School of Public Health