Meeting with Marie-Christine Hallé, SAPPA Coordinator
Since 2024, the AQPA has been offering conferences-meetings for caregivers as part of the PSOC aidance project. The first conference was held last July. We interviewed Marie-Christine Hallé, Coordinator of the AQPA Service for Relatives of a Person with Aphasia (SAPPA) and facilitator of this conference, to learn more about this innovative project.
Can you tell us about the origin of this initiative?
In 2022, for the 40th anniversary of the AQPA, a series of conferences entitled "Crosswords around aphasia" was organized to allow people with aphasia and their loved ones to have access to the results of research conducted in the field of aphasia. This event was a success, particularly for the exchanges it allowed between the participants and the researchers who spoke. Encouraged by the success of this experience, we then took advantage of funding (PSOC close aidance project) to integrate a conference component into our programming. We wanted to address topics related to close aid, but also to integrate the specificity of aphasia. Finally, we wanted this event to be adapted to both people with aphasia and their loved ones.
Do these conferences meet a need among caregivers?
The needs of caregivers are numerous and include, among other things, a need for information. Although this need may evolve and vary throughout the different phases of caregivers' lives, it seems to be at the heart of this experience. In our activity programming, we have support groups for caregivers where we note that new questions regularly emerge among our participants. This confirms to us that this is a real need.
How did this first coffee meeting go?
It was a very nice experience. We actually had more participants than expected. During the conference, which I hosted, I felt that the participants were listening very attentively. I was able to share the results of my research on themes such as the transformation of relationships between aphasic people and their loved ones. During the break, several people came to tell me that they recognized themselves in the different information shared, for example regarding the emotions they were experiencing.
Can you come back to the second part of the conference which offered a moment of exchange with the participants?
The second part of the conference gave rise to a wonderful moment of sharing. The caregivers discussed their experiences. They also gave each other advice, such as their strategies for communicating with their loved one on a daily basis. We then witnessed a friendly discussion between participants, who shared their feedback. This exchange of advice seemed very appreciated. Some participants also said that they were going to apply the advice that other relatives gave them. It was very touching to see these people open up about their experiences and show such empathy.
What topics were discussed during this first coffee meeting?
We first discussed the different consequences of aphasia in the lives of loved ones, whether in terms of changes in conversations, new responsibilities or emotions. Then, we established the different profiles of caregivers. Some will seek to help the other by protecting them, for example by carrying out certain tasks in their place, while others will rather seek to promote the autonomy of their loved one. This allowed the participants to reflect on the type of caregiver they are and to provide avenues of reflection to adjust in their relationship. We then presented them with an example of a helping relationship experienced positively by the caregiver and the loved one. We finished by drawing up the range of needs that loved ones may have and by discussing the existing resources to meet them.
Do caregivers sometimes tend to forget themselves?
Absolutely. They tend to focus on the needs of their loved one, which can also lead them to neglect their own needs. However, they have needs, not only as caregivers, but also relational needs because beyond their role as caregivers, they are also spouses, sons, daughters who want to have a good relationship and good communication with the person with aphasia. They also have personal needs such as having respite or having emotional support.
Can you tell us about the next conference?
La next conference will have the theme "Taking care of yourself as a caregiver". Participants will have the opportunity to reflect on the importance of taking care of yourself when you have a loved one with aphasia, while identifying different ways to do so.
To find out more about our next coffee meeting:
📅 Date: September 20
🕒 Time: 15pm to 17pm
📍 Location: AQPA, 4450 Rue Saint-Hubert, room 533-535 on the 5th floor
To find out more about our activities for caregivers and people with aphasia:
- Would you like to know more about our workshops for caregivers? Click here
- Would you like to consult our calendar for caregivers? here.
- Would you like to know more about our workshops for people with aphasia? Click here
- Would you like to consult our calendar for people with aphasia? here.
- Would you like to register for our workshops for people with aphasia? here.
- Do you want to know more about aphasia? here.
