Life Participation Approach to Aphasia
A Statement of Values for the Future
by the LPAA Project Group (in alphabetical order: Roberta Chapey, Judith F. Duchan, Roberta J. Elman, Linda J. Garcia, Aura Kagan, Jon Lyon, and Nina Simmons Mackie)
Unprecedented changes are occurring in the way treatment for aphasia is viewed and reimbursed. These changes, resulting from both internal and external pressures, are influencing how speech-language pathologists (SLPs) carry out their jobs.
Internal influences include a growing interest in treatments that produce meaningful real life outcomes leading to enhanced quality of life. Externally, we are influenced by disability rights activists encouraging adjustments in philosophy and treatment, and by consumers frustrated by unmet needs and unfulfilled goals. Most recently, a strong external influence is emanating from the curtailment of funding for our work that has caused a significant reduction in available services to people affected by aphasia.
To accommodate these varied influences on service delivery, it is important to take a proactive stance. We therefore propose a philosophy of service delivery that meets the needs of people affected by aphasia and confronts the pressures from our profession, providers, and funding sources.
Our statement of values has been guided by the ideas and work of SLPs as well as by individuals in psychology, sociology, and medicine. We intend neither to prescribe exact methods for achieving specific outcomes, nor to provide a quick fix to the challenges facing our profession. Rather, we offer a statement of values and ideas relevant to assessment, intervention, policy making, advocacy, and research that we hope will stimulate discussion related to restructuring of services and lead to innovative clinical methods for supporting those affected by aphasia.
Defining the Approach
The "life participation approach to aphasia" (LPAA) is a consumer-driven service-delivery approach that supports individuals with aphasia and others affected by it in achieving their immediate and longer term life goals (note that "approach" refers here to a general philosophy and model of service delivery, rather than to a specific clinical approach). LPAA calls for a broadening and refocusing of clinical practice and research on the consequences of aphasia. It focuses on re-engagement in life, beginning with initial assessment and intervention, and continuing, after hospital discharge, until the consumer no longer elects to have communication support.
LPAA places the life concerns of those affected by aphasia at the center of all decision making. It empowers the consumer to select and participate in the recovery process and to collaborate on the design of interventions that aim for a more rapid return to active life. These interventions thus have the potential to reduce the consequences of disease and injury that contribute to long-term health costs.
The Essence of LPAA
We encourage clinicians and researchers to focus on the real-life goals of people affected by aphasia. For example, in the initial stages following a cerebrovascular accident, a goal may be to establish effective communication with the surrounding nursing staff and physicians. At a later stage, a life goal may be to return to employment or participation in the local community.
Regardless of the stage of management, LPAA emphasizes the attainment of re-engagement in life by strengthening daily participation in activities of choice. Residual skill is thus seen as only one of many requisites. For example, full participation is dependent on motivation and a consistent and dependable support system.
A highly supportive environment can lessen the consequences of aphasia on one' s life, whatever the language impairment. A non-supportive environment, on the other hand, can substantially increase the chance of aphasia affecting daily routines. Someone with mild aphasia in a non-supportive environment might experience greater daily encumbrances than another with severe aphasia who is highly supported.
In this broadening and refocusing of services, LPAA recommends that clinicians and researchers consider the dual function of communication-transmitting and receiving messages and establishing and maintaining social links. Furthermore, life activities do not need to be in the realm of communication in order to deserve or receive intervention. What is important is to judge whether aphasia affects the execution of activities of choice and one' s involvement in them.
The following list provides a few examples of how LPAA may lead to a broadening and refocusing of services:
- Assessment includes determining relevant life participation needs and discovering competencies of clients.
- In addition to assessing language and communication deficits, clinicians are equally interested in assessing how the person with aphasia does with support.
- Treatment includes facilitating the achievement of life goals.
- In addition to work on improving and/or compensating for the language impairment, clinicians are prepared to work on anything where aphasia is a barrier to life participation (even if the activity is not directly related to communication).
- Intervention routinely targets environmental factors outside of the individual.
- In addition to working with the individual on language or compensatory functional communication techniques, clinicians might train communication partners or work on other ways of reducing barriers to make the environment more "aphasia-friendly."
- All those affected by aphasia are regarded as legitimate targets for intervention.
- In addition to working with the individual who has aphasia, clinicians would also work on life participation goals for family and others who are affected by the aphasia, including friends, service providers, work colleagues etc.
- Clinician roles are expanded beyond those of teacher or therapist.
- In addition to doing therapy, clinicians might take on the role of:
- "communication partner" and give the person with aphasia the opportunity to engage in conversation about life goals, concerns about the future, barriers to life participation etc.
- "coach," "problem solver," or "support person" in relation to overcoming challenges in re-engaging in a particular life activity.
- Outcome evaluation involves routinely documenting quality of life and life participation changes.
In addition to documenting change in language and communication, clinicians would routinely evaluate the following in partnership with clients:
- life activities and how satisfying they are
- social connections and how satisfying they are
- emotional well-being
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For more information, contact Aura Kagan for the LPAA Project Group at [email protected] or The Aphasia Institute.