LIFE PARTICIPATION APPROACH TO APHASIA: AN OVERVIEW

Language Disorders in Adults Grand Rounds: Life Participation Approaches to Aphasia

Roberta J. Elman, Ph.D., CCC-SLP, BC-NCD

Presented to the American Speech-Language-Hearing Association Convention

November, 2000

Selected References

Bernstein-Ellis, E. and Elman, R. (1999). Group communication treatment for individuals with aphasia: The Aphasia Center of California approach. In R. Elman (Ed.). Group treatment for neurogenic communication disorders: The expert clinician’s approach. pp. 47-56. Woburn, MA: Butterworth-Heinemann. <www.bh.com>

Elman, R. (1998). Memories of the ‘plateau’: Health care changes provide an opportunity to redefine aphasia treatment and discharge. Aphasiology. 12(3), 227-231.

Elman, R. (Ed.). (1999a). Group treatment of neurogenic communication disorders: The expert clinician’s approach. Woburn, MA: Butterworth-Heinemann <www.bh.com>.

Elman, R. (1999b). Practicing outside the box. Asha, 41(6), 38-42.

Elman, R. (1999c). Aphasia group treatment at the Aphasia Center of California. Gerontology Special Interest Division 15 Newsletter , 4(1), 20-24. Rockville: American Speech-Language-Hearing Association.

Elman, R. (1999d). Long-term care approaches to aphasia treatment and management. In R. Elman (Ed.). ASHA Special Interest Division 2 Newsletter: Neurophysiology and Neurogenic Speech and Language Disorders, 9 (5), 15-17.

Elman, R. (In press). Working with groups: Neurogenic communication disorders and the managed care challenge. [Videotape.] Rockville, MD: American Speech-Language Hearing Association.

Elman, R., and Bernstein-Ellis, E. (1995). What is functional? American Journal of Speech-Language Pathology, 4(4), 115-117.

Elman, R. and Bernstein-Ellis, E. (1999a). The efficacy of group communication treatment in adults with chronic aphasia. Journal of Speech, Language, and Hearing Research, 42, 411-419.

Elman, R. and Bernstein-Ellis, E. (1999b). Psychosocial aspects of group communication treatment: Preliminary findings. Seminars in Speech & Language, 20(1) 65-72.

Elman, R., Ogar, J., and Elman, S. (2000). Aphasia: Awareness, advocacy, and activism. Aphasiology, 14(5/6), 455-459.

Ewing, S. (1999). Group process, group dynamics, and group techniques with neurogenic communication disorders. In R. Elman (Ed.). Group treatment for neurogenic communication disorders: The expert clinician’s approach. pp. 9-16. Woburn, MA: Butterworth-Heinemann. <www.bh.com>

LPAA Project Group (2000). Life participation approach to aphasia: A statement of values for the future. ASHA Leader, 5(3). 4-6. <www.asha.org/publications/ashalinks.htm>

Correspondence to:

Roberta J. Elman, Ph.D., CCC-SLP, BC-NCD

Aphasia Center of California, 3996 Lyman Road, Oakland, CA USA 94602

Phone: 510-336-0112

e-mail: RJElman@aol.com

website: www.aphasiacenter.org

LIFE PARTICIPATION APPROACH TO APHASIA: AN OVERVIEW

Nina Simmons-Mackie

ASHA Convention, Washington D.C., 2000

Introduction

Life Participation Approach to Aphasia* (LPAA, 2000) is a consumer-driven service delivery philosophy that focuses on maximizing re-engagement in life for all those affected by aphasia. LPAA can serve as an "umbrella" or guiding philosophy that unites a variety of approaches around the globe. The philosophy of LPAA provides a framework for assessment and intervention, research and advocacy efforts in the field of aphasia.

World Health Organization "Components of Health" (ICIDH-2)

The Body Level

Integrity of body structures (e.g. brain)

Integrity of body functions (e.g. language processing)
Problem at this level is an impairment (e.g. anomia, alexia).

Individual Level

Ability to perform tasks or activities in a uniform environment (e.g. functional tasks, activities of daily living)
Assessed in comparison to an accepted population standard
Problem at this level is an activity limitation (e.g. difficulty talking on the phone, difficulty reading the newspaper).

The Societal Level

The nature and extent of a person’s involvement in life situations - what an individual actually does within his/her relevant social context (e.g. practice law, attend Rotary Club).
This level captures the "personal experience" of aphasia
Problem at this level is a participation restriction (e.g. no longer reads for pleasure, has quit attending Rotary).

These three levels of health conditions should not be interpreted as a "linear" model. Although the levels interact and interrelate, they should not be viewed as "sequential" levels of intervention.

Core Components of LPAA

The explicit goal is enhancement of life participation.
All those affected by aphasia are entitled to service.
Both personal and environmental factors are targets of

assessment and intervention.

Success is measured via documented life enhancement changes.
Emphasis is placed on availability of services as needed at all stages of life with aphasia.

The explicit goal is enhancement of life participation

A Life Participation Approach focuses directly on life participation. There is no expectation that decreased impairment or increased functional skill will automatically enhance participation & well-being at the societal level.
Although therapy might include activities at the "body" and "individual" levels, these must explicitly bridge to defined life participation goals.

Recipients of services: All those affected by aphasia are entitled to service

Basic assumption that life with aphasia affects and is affected by those "around" the person with aphasia.
The "entourage" can create an enabling or disabling environment and helps determine the quality of life for all those affected.
A few examples of services for those "other than" the person with aphasia:

Training others how to support and facilitate communication (e.g. Kagan & Gailey, 1993; Lyon et al 1997)
Counseling regarding communication, life participation, and how to live life to the fullest with aphasia (e.g. Holland, 1999; Ireland &Wootten, 1996)
Support groups & advocacy programs (e.g. Byng et al, 2000)
Couples therapy –work on communication and relationship together (e.g. Boles, 1998)
Group training in supported communication (e.g. training work colleagues, training health care practitioners)

Both personal and environmental factors are targets of intervention

Personal (internal) factors pertain to physical, psychological and emotional

changes that accompany aphasia (e.g. mental, bodily, linguistic, motor, behavioral and/or sensory impairments). For example, language impairment associated with processing deficits or hemiplegia might be personal obstacles.

Environmental (external) factors refer to physical and social structures of the

outside world that facilitate or obstruct involvement in daily life.

Physical factors (e.g. architecture, geography, climate, temporal factors, visual or auditory conditions)
Social factors (e.g. beliefs/attitudes of society, political systems government, corporate rules or systems, economic factors, education/knowledge of aphasia, partners to support communication).
Factors range from disabling (barriers to participation) to enabling (facilitate participation).
Intervention in LPAA aims to reduce barriers and build facilitators/supports to participation.

Documentation: Measures of success include documented life changes

LPAA calls for the use of outcome measures that assess quality of life and degree of life participation.

Increased participation in activities or roles of choice

Enhanced social connections

Improved feelings/attitudes (e.g. well being, purpose in life).

Possible outcome measures

Quality of Life & well-being measures (see Hirsh & Holland, 2000)
Satisfaction measures (e.g. Lyon, 1998; Lyon et al, 1997)
Participation measures (e.g. Communicative Profiling System, Simmons-Mackie & Damico, in press)

Availability of services as needed at all stages of aphasia.

Recognition of the chronicity of aphasia.
Service availability based on "life needs" versus medical needs.
Limitations of health care system!!!

Alternative service delivery systems

Shift in philosophy of funding

Advocacy, advocacy, advocacy

* LPAA Project Group (in alphabetical order) Roberta Chapey, Judith Duchan, Roberta Elman, Linda Garcia, Aura Kagan, Jon Lyon, Nina Simmons-Mackie.

Selected References

Boles, L. (1998). Conducting Conversation: A Case Study Using the Spouse in Aphasia Treatment. ASHA SID 2 Newsletter: Neurophysiology and Neurogenic Speech and Language Disorders, 24-31.

Byng, S., & Pound, C. & Parr, S. (2000). Living with aphasia: A framework for therapy interventions. I. Papathanasiou (Ed), Acquired neurological communication disorders: A clinical perspective . London: Whurr.

Elman, R. (1999). Group treatment of neurogenic communication disorders: The expert clinicians approach. Woburn, MA: Butterworth-Heinemann.

Elman, R. & Bernstein-Ellis, E. (1995). What is Functional? American Journal of Speech-Language Pathology, 4, 115-117.

Fougeyrollas, P., Cloutier, R., Bergeron, H., Cote, J, Cote, M., and St. Michel, G. (1997). Revision of the Quebec Classification: Handicap creation process. Lac St-Charles, Quebec: International Network on the Handicap Creation Process.

Hirsch, F. & Holland, A. (2000). Beyond activity: Measuring participation in society and quality of life. . In L. Worrall & C. Frattali, (Eds). Neurogenic communication disorders: A functional approach (pages 35-54). NY: Thieme.

Holland, A. (1999). Counseling adults with neurogenic communication disorders. [Videotape]. ASHA (Producer) Rockville, Maryland: American Speech-Language-Hearing Association.

Ireland, C. & Wootten, G. (1996). Time to talk: counseling for people with dysphasia. Disability and Rehabilitation, 18(11), 585-591.

Kagan, A. (1995). Family perspectives from three aphasia centers in Ontario, Canada. Topics in Stroke Rehabilitation, 2(3), 33-52.

Kagan, A., & Gailey, G. (1993). Functional is not enough: Training conversation partners in aphasia. In A. Holland, & M. Forbes (Eds), Aphasia treatment: World perspectives (pp. 199-226). San Diego, CA: Singular.

LPAA Project Group (2000) Life Participation Approach to Aphasia: A statement of values for the future. The ASHA Leader, 5, 4-6.

Lyon, J. G. (1998). Treating Real-Life Functionality in a Couple Coping With Severe Aphasia . In N. Helm-Estabrooks & A. Holland (Eds), Approaches to the Treatment of Aphasia (pp. 203-239). San Diego: Singular.

Lyon, J. G., Cariski, D., Keisler, L., Rosenbek, J., Levine, R., Kumpula, J., Ryff, C., Coyne, S., & Blanc, M. (1997). Communication partners: enhancing participation in life and communication for adults with aphasia in natural settings. Aphasiology, 11(7), 693-708.

Muller, D. (1999). Managing psychosocial adjustment to aphasia. Seminars in Speech and Language, 20(1), 85-92.

Parr, S., Byng, S., Gilpin, S., & Ireland, C. (1997). Talking about aphasia. Buckingham, UK: Open University Press.

Rogers, M. A., Alarcon, N. B., & Olswang, L. B. (1999). Aphasia Management Considered in the Context of the WHO Model of Disablements. Physical Medicine and Rehabilitation Clinics of North America on Stroke . Philadelphia: W.B. Sanders Co.

Sarno, M. T. (1993). Aphasia rehabilitation: psychosocial and ethical considerations. Aphasiology, 7(4), 321-334.

Simmons-Mackie, N. (in press) A social approach to intervention in aphasia. In R. Chapey (Ed.) Language intervention strategies in aphasia. 4^th edition. Baltimore: Williams & Wilkins.

Simmons-Mackie, N. (2000). Social approaches to management of aphasia. In L. Worrall & C. Frattali, (Eds). Neurogenic communication disorders: A functional approach (pages 162-188). NY: Thieme.

Simmons-Mackie, N., & Damico, J. S. (1996). Accounting for handicaps in aphasia: Communicative assessment from an authentic social perspective. Disability and Rehabilitation, 18(11), 540-549.

Simmons-Mackie, N. & Damico, J. S. (in press). Intervention Outcomes: A Clinical Application of Qualitative Methods. Topics in Language Disorders.

World Health Organization (October, 2000). ICIDH-2 Prefinal Draft. Geneva, Switzerland, WHO.