Aphasia Centers in North America: A Survey

ABSTRACT

There is a growing trend toward dedicated programs designed to improve the lives of people with aphasia and their families. We are referring to these programs collectively as “aphasia centers.” These programs purportedly differ from more traditional medically based aphasia rehabilitation. However, there is no directory of aphasia centers and no definition of what constitutes such a program. Therefore, an online survey was designed to identify and describe aphasia centers in the United States and Canada. A 37-question survey was posted online via SurveyMonkey. An introductory letter was distributed by electronic mail to a listserv and mailing lists of programs associated with aphasia. Potential respondents who considered themselves an aphasia center were asked to complete the survey. A total of 33 survey responses were analyzed, and descriptive data were compiled resulting in a description of the following aspects of aphasia centers: demographic information, mission, admission and discharge policies, assessment practices, program logistics, staffing patterns, marketing, funding, and services offered. In addition, a qualitative analysis of written text responses revealed the following key themes that appear to characterize the responding programs: services that differ from traditional aphasia rehabilitation; a sense of community; a holistic focus on quality of life, psychosocial well-being, participation, and social support; the centrality of group interaction; and variety/intensity of services.

KEYWORDS

Aphasia - therapy - groups

REFERENCES

• 1 LPAA Project Group. Life participation approaches to aphasia: a statement of values for the future.  ASHA Leader. 2000;  3 4-6 Available at: http://www.asha.org/public/speech/disorders/LPAA.htm Accessed January 11, 2011; 
• 2 Pound C, Parr S, Lindsay J, Woolf C. Beyond Aphasia: Therapies for Living with Communication Disability. Bicester, United Kingdom: Speechmark; 2000
• 3 Sarno M T. The psychological and social sequelae of aphasia. In: Sarno M T, ed. Acquired Aphasia. 2nd ed. San Diego, CA: Academic Press; 1991: 521-582
• 4 Sarno M T. Aphasia therapies: historical perspectives and moral imperatives. In: Duchan J, Byng S, eds. Challenging Aphasia Therapies. Hove, United Kingdom: Psychology Press; 2004: 17-31
• 5 Simmons-Mackie N. Social approaches to the management of aphasia. In: Worrall L, Frattali C, eds. Neurogenic Communication Disorders: A Functional Approach. New York, NY: Thieme; 2000: 162-187
• 6 Simmons-Mackie N. Social approaches to aphasia intervention. In: Chapey R, ed. Language Intervention Strategies in Aphasia and Related Neurogenic Communication Disorders. 5th ed. Philadelphia, PA: Lippincott Williams & Wilkins; 2008: 290-318
• 7 Cruice M, Worrall L, Hickson L, Murison R. Finding a focus for quality of life with aphasia: social and emotional health, and psychological well-being.  Aphasiology. 2003;  17 333-353
• 8 Dijkers M. Quality of life after spinal cord injury: a meta analysis of the effects of disablement components.  Spinal Cord. 1997;  35 (12) 829-840
• 9 Ross K, Wertz R T. Quality of life with and without aphasia.  Aphasiology. 2003;  17 355-364
• 10 Spradley J. Participant Observation. New York, NY: Holt, Rinehart & Winston; 1980
• 11 Avent J. Manual of Cooperative Group Treatment for Aphasia. Boston, MA: Butterworth-Heinemann; 1997
• 12 Elman R J. The importance of aphasia group treatment for rebuilding community and health.  Top Lang Disord. 2007;  27 300-308
• 13 Elman R J ed.. Group Treatment of Neurogenic Communication Disorders: The Expert Clinician's Approach. 2nd ed. San Diego, CA: Plural; 2007
• 14 Elman R J, Bernstein-Ellis E. The efficacy of group communication treatment in adults with chronic aphasia.  J Speech Lang Hear Res. 1999;  42 (2) 411-419
• 15 Elman R J, Bernstein-Ellis E. Psychosocial aspects of group communication treatment. Preliminary findings.  Semin Speech Lang. 1999;  20 (1) 65-71 quiz 71-72
• 16 Holland A. The power of aphasia groups: celebrating Roger Ross. In: Elman R J, ed. Group Treatment of Neurogenic Communication Disorders: The Expert Clinician's Approach. 2nd ed. San Diego, CA: Plural; 2007
• 17 Marshall R. Introduction to Group Treatment for Aphasia: Design and Management. Woburn, MA: Butterworth-Heinemann; 1999
• 18 Kagan A. Aphasia centres and community: more than just a sum of parts. In: Parr S, Duchan J, Pound C, eds. Aphasia Inside Out. Berkshire, England: Open University Press; 2003: 41-50
• 19 Holland A. Counseling in Communication Disorders: A Wellness Perspective. San Diego, CA: Plural Publishing Inc.; 2007
• 20 Müller D. Managing psychosocial adjustment to aphasia.  Semin Speech Lang. 1999;  20 (1) 85-91 quiz 92
• 21 Simmons-Mackie N. A solution to the discharge dilemma in aphasia: social approaches to aphasia management.  Aphasiology. 1998;  12 231-239
• 22 Simmons-Mackie N, Damico J S. Exploring clinical interaction in speech-language therapy: narrative, discourse and relationships. In: Fourie R, ed. Therapeutic Processes for Communication Disorders: A Guide for Clinicians and Students. Hove, East Sussex, UK: Psychology Press; 2010: 35-52
• 23 Simmons-Mackie N, Threats T T, Kagan A. Outcome assessment in aphasia: a survey.  J Commun Disord. 2005;  38 (1) 1-27
• 24 Byng S, Duchan J F. Social model philosophies and principles: their applications to therapies for aphasia.  Aphasiology. 2005;  19 906-922

APPENDIX A Content of the On-Line Survey of Aphasia Centers