SAPPA Project (February 2020 – No 01)
February 2020 Edition (01)
SAPPA offers Support and
Rebuilds Conversations for Persons
with Aphasia and their Family
An Interview Summary with Claire Croteau
Associate Professor, School of Speech-Language Therapy and Audiology, Université de Montréal
Researcher and Site Leader, CRIR – Institut universitaire sur la réadaptation en déficience physique de Montréal (IURDPM),
Lindsay pavillion, CIUSSS du Centre-Sud-de-l’Île-de-Montréal
What questions or challenges prompted you to study the communication needs of persons with aphasia and their family members?
My mother developed aphasia 30 years ago following a stroke and sought help. At the end of her treatment, the speech-language pathologist told me: « Your mother speaks really well now. When I show her images, she easily finds words. » But at home, the situation was very different. My mother stopped speaking. We did not know how to communicate with her. There was a huge gap between what the speech-language pathologist said and what we were living as a family! This personal experience informed my research interests. For the past 25 years, my research has focused on how families communicate with persons with aphasia and how speech-language pathology care can be improved.
Aphasia is an acquired language problem that usually occurs as the result of a stroke or brain trauma. It can affect language production and comprehension and always affects conversational interaction. Each year in Canada about 1 in every 3 stroke survivors will suffer from aphasia. That is approximately 166,000 Canadians, or the equivalent in size of 2 Montreal municipalities.
Caring for a family member with aphasia can be a difficult and stressful experience with many challenges. Caregivers report the loss of intimacy and meaningful exchanges with their spouse. Conversations are often reduced to everyday things like the weather.
What is SAPPA and how is it linked to your research?
In 2013, my research team and I developed a project called Service aux proches d’une personne aphasique (SAPPA) with the Association québécoise des personnes aphasiques (AQPA) funded by L’APPUI de Montréal.
SAPPA offers clinical services in the community. It hires speech-language pathologists and a social worker for home visits. SAPPA clinicians work with persons with aphasia and family members. They provide advice, assistance, and effective and personalized communication strategies to build conversations and break down barriers. They also facilitate support groups for communication at AQPA. Each year about 100 families receive this free service on the island of Montreal.
Speech-language pathology focuses on the evaluation and treatment of communication disorders. Our previous research with persons with aphasia and family members allowed us to identify needs, provide clinical support, and measure intervention effects. We also devised guides to evaluate communication needs in families. We created a series of short scenarios about the predicaments of two fictional characters, « Marie » and « Paul. » Families enjoy discussing solutions and these scenarios are now part of SAPPA practice.
What kind of impact has your research had on persons with aphasia and their families?
The SAPPA clinical project builds on previous research. SAPPA speech-language pathology interventions have significant effects for many families. When we started the SAPPA service, clinicians would occasionally find some persons with aphasia alone in their room, with the door closed! This approach was needed in addition to regular speechlanguage pathology. For the most part, regular services involve the clinician and the user. Needs and communication challenges faced by family members are not specifically considered.
The SAPPA project made it possible for persons with aphasia to sit with family members around the table and talk. They are able to have enjoyable discussions! Also, family members report improved relationships.
How is your research innovative?
Thirty years ago as today, interventions often focus on relearning or reactivating language skills by repeating words and proceeding to build sentences. Although this is a good practice, we could do better. I decided to test a different clinical approach, one that starts with conversation. Would stimulating, interesting conversations between family members lead to words? Some SAPPA clinicians report that over time this approach leads to less
frustration and more words used in longer sentences. We have started a research project to study these observations.
This research also lead to the development of a quantitative evaluative method used to analyze and evaluate videotaped conversations. Researchers in different countries have started to use it and it can be employed in clinical practice as well.
What kind of impact has your research had on speech-language pathology?
Since 2013, 40 speech-language pathologists have received training and tools in this new clinical approach. These training seminars are periodically offered to clinicians across the province. For the past 5 years a community of practice, composed of SAPPA clinicians, a coordinator and myself, meets regularly to improve quality of care and the SAPPA approach.
What other outcomes stem from your research with SAPPA?
A You Tube Projet SAPPA channel and a Facebook group SAPPA offer general information to caregivers and advice on how to improve communication with a person with aphasia.
What is the next step?
I am working toward the SAPPA service being available everywhere in Quebec. In addition, I would like to see the methods and tools developed integrated in regular speech-language pathology in order to improve quality of life of persons with aphasia.
For more information, please contact the Association québécoise des personnes aphasiques (AQPA): 514 277-5678 (extension 6) or by email: sappa@aphasie.ca.
Interview and text: Spyridoula Xenocostas, Coordinator–Partnerships and Knowledge Mobilization, CRIR at partenariat.crir@ssss.gouv.qc.ca
