January 1, 2013 Columns

World Beat: A United International Voice for Aphasia

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People with aphasia benefit from different resources based on the country where they live. For example, an American with aphasia can access one of the world's oldest consumer organizations for aphasia, the National Aphasia Association. An Australian with aphasia can access a nationwide network of aphasia clinicians and researchers through the Center for Clinical Research Excellence in Aphasia Rehabilitation.

World beat: A United International Voice for Aphasia

What if these organizations could pool their knowledge and experiences to share with fledgling groups in other countries seeking to do the same? 

A unified international group could fill a clear need for such sharing: The number of people with aphasia will only grow with a global increase in the aging population, according to a recent report on disability from the World Health Organization. That's where the newly established association, Aphasia United, comes in. Its mission is to share aphasia knowledge and facilitate resource development across the globe.

Across borders

Groups in several countries, including the United States, the United Kingdom and Australia, have created stroke practice guidelines that include recommendations for improving post-stroke communication abilities. Organizations dedicated to serving those with aphasia include the National Aphasia Association in the United States and Speakability in the United Kingdom. The Association Internationale Aphasia represents aphasia consumer organizations at an international—mostly European—level. 

There is an overwhelming need for an overarching body to move the aphasia agenda forward by linking consumer, research and professional organizations worldwide. If we are to truly improve the lives of people living with aphasia—not just in one country, but also all over the world—we must find a united direction.

Aphasia United's goals are to increase the visibility of people with aphasia, create formal global networks that connect people living with aphasia and the clinicians and researchers who support them, strengthen international research partnerships, set a global research agenda to improve the lives of people with aphasia, and encourage best standards of practice in aphasia care. Aphasia United aims to serve as an umbrella organization for aphasia consumer, research and professional organizations throughout the world.

The work begins

On Oct. 11, 2012, the inaugural Aphasia United Summit in Melbourne, Australia, convened researchers, clinicians and people with aphasia to begin developing an international strategy for advancing aphasia science and services. Participants drafted a mission statement and established task forces to begin the organization's work to: 

  • Build capacity among consumer organizations and researchers. The World Report on Disability emphasizes the need for people with disability to play a central role in decisions that affect them. To map a direction for the global aphasia community, people with aphasia must be comprehensively and authentically involved in this process. Therefore, Aphasia United will direct efforts to build capacity in aphasia consumer organizations to involve people with aphasia at an international level.
  • Build consensus. There are no formal evidence-based clinical guidelines for aphasia rehabilitation, or consensus on what constitutes a rehabilitation pathway for people with aphasia. To promote best practice in aphasia care, Aphasia United will need to find a way to establish consensus in these areas.
  • Make an impact and sustain Aphasia United. To achieve financial sustainability, Aphasia United has been endorsed by the World Stroke Organization. Engagement in a mutually beneficial relationship may enable Aphasia United to underwrite conference costs, while maintaining a surplus.
  • Set an international research agenda. Clinical research can be facilitated by combining existing knowledge, developing processes for transferring knowledge across cultural and national boundaries, and identifying priority research needs that can be productively addressed by the international community. Aphasia United seeks to combine the perspectives of researchers, clinicians and consumers in determining international research priorities.

If the challenges of establishing a global organization can be met, there is potential to drive real change for people living with aphasia throughout the world.

Jacqueline Hinckley, PhD, CCC-SLP, a training and research consultant, is associate professor emeritus in communication sciences and disorders at the University of South Florida and an affiliate of ASHA Special Interest Group 2, Neurophysiology and Neurogenic Disorders. jhinckle@usf.edu

Linda Worrall, PhD, is co-director of the Communication Disability Center at the University of Queensland, Australia. l.worrall@uq.edu.au

Ellayne Ganzfried, MS, CCC-SLP, is executive director of the National Aphasia Association. She is an affiliate of SIG 2, Neurophysiology and Neurogenic Disorders, and SIG 11, Administration and Supervision. ganzfried@aphasia.org

Nina Simmons-Mackie, PhD, CCC-SLP, is professor and scholar in residence in the Department of Communication Sciences and Disorders at Southeastern Louisiana University. She is an affiliate of SIG 2. nmackie@selu.edu 

cite as: Hinckley, J. , Worrall, L. , Ganzfried, E.  & Simmons-Mackie, N. (2013, January 01). World Beat: A United International Voice for Aphasia. The ASHA Leader.

Sources

Wensing, M., Grimshaw, J. M., & Eccles, M. P. (2012). Does the world need a scientific society for research on how to improve healthcare? Implementation Science, 7, 10.

World Health Organization. (2011). World Report on Disability. World Health Organization, Geneva. Available at: www.who.int. Accessed 20 May 2012.



  

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