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Supporting rights through research: development of a national research strategy for intellectual disability the national federation of voluntary bodies research strategy 2008–2013
- Author:
- TIERNEY Edel
- Journal article citation:
- British Journal of Learning Disabilities, 37(4), December 2009, pp.323-325.
- Publisher:
- Wiley
This short paper outlines a participatory process in the development of a national research strategy developed by the National Federation of Voluntary Bodies in Ireland, which includes 62 member organisations which provide services and support to people with intellectual disabilities, the objective of which was to develop a vision for the research activities over a 6 year time frame. The principles of this vision include: research to support the development of high quality support services; to promote and disseminate research among member organisations; to encourage collaboration in research; to conduct research that drives national policy; and to consult with service users. This paper also outlines the consultation process used.
Convention of hope - communicating positive, realistic messages to families at the time of a child's diagnosis with disabilities
- Authors:
- HARNETT Alison, TIERNEY Edel, GUERIN Suzanne
- Journal article citation:
- British Journal of Learning Disabilities, 37(4), December 2009, pp.257-264.
- Publisher:
- Wiley
This study, as part of a larger study to develop best practice recommendations for informing families of their child's disabilities, researched the elements of best practice required when communicating this news to families. Tracing the convergence between these practice recommendations and the UN Convention on the Rights of Persons with Disabilities, in particular with regard to the provision of positive, realistic and hopeful communication, this study employed a mixed methodology involving 22 focus groups and a questionnaire survey of 1588 professionals and 584 families. Whilst the study found that the large majority of parents and professionals supported the recommendation of providing families with positive, realistic and hopeful messages at the time of diagnosis, less than half of the parents surveyed actually reported receiving communication of this type, indicating that some professionals may struggle with the fear of providing false hope, or a fear of litigation and a lack of training. However, this research also identified positive and hopeful messages that are not in conflict with providing honest and realistic communication including: acknowledging the dignity and worth of the child as an individual; indicating that there is help available for parents; and informing families about the spectrum of possible outcomes for their child rather than the worst case scenario. This provision of appropriate positive, realistic messages and hope is aligned with the principles of the UN Convention.