Research by Cheng et al. (2022), in plain language
What’s this study about?
This study takes an in-depth look at difficult conversations after stroke, from the point of view of significant others of people with a communication disability.
Why did they do this study?
One in three stroke survivors have difficulties using or understanding words. They have a language impairment called aphasia. Conversations about how much and when it might get better – the ‘prognosis’ – can be emotional and sometimes traumatic. Everyone feels differently about what they want to know and how they want to know. It’s also hard to balance hope with realistic expectations, especially when things are uncertain.
Research has looked at these difficult conversations from the clinician’s point of view and the patient’s point of view. But, not much is known about the point of view of the significant other of a patient. Whether a partner, family member, or close friend, a significant other of a patient has a vital role in recovery. The goal of this research was to find more sensitive and helpful ways of talking about prognosis after a stroke.
How did they do this study?
Researchers interviewed seven significant others of people with aphasia in the first year after a stroke. In this group, three were partners of someone with aphasia, two were parents, one was the daughter of someone with aphasia, and one was a close friend.
What did they find in this study?
There were five main messages in what the significant others said.
1. You don’t know what you don’t know
The significant others said stroke was “totally new” (Ruth) to them and they didn’t know “where to begin” (Carmen) in terms of asking for information. They felt that, as the experts, doctors and health professionals should be the ones telling them what they need to know. For example, they didn’t know to ask for information about the prognosis of aphasia, because they didn’t even know what aphasia was.
The significant others also pointed out that the use of medical jargon and technical words makes information hard to understand. They said that instead of just being told, it’s helpful to be given information in writing to revisit in your own time.
2. Having them alive is the best you can ask for
The significant others all felt an immense sense of gratitude that their loved one had survived a stroke. This was one reason why, even though they felt they hadn’t been given enough information, they didn’t ask for more, or “blame” (Eliza) clinicians.
3. Recovery in the eye of the beholder
The significant others didn’t just base their understanding of aphasia recovery on information they were given, but on things they already knew or had experienced in the past. For example, Joyce said she didn’t feel the need to ask about the prognosis to “reinforce” the therapy she already knew was “worth doing”. In the past, she had worked with children with disabilities and seen that improvement depends on practice.
The significant others also made their own judgements about how much or when aphasia might get better, based on their observation of how their loved one was doing physically and emotionally. For example, Eliza felt her loved one’s speech had “come back” and that lingering difficulties weren’t issues of aphasia but issues of memory, vision, and personality.
4. Outcomes don’t matter unless they help me help them
The significant others meant different things when they talked about getting information about recovery. Sometimes, they meant getting information about how much recovery would occur. Other times, they meant getting information about how recovery would occur – this, and knowing how to help, was most important to all of them. But, they also meant different things when they talked about knowing how to help their loved one. Sometimes, they meant knowing how to help their loved one get better from aphasia. Other times, they meant knowing how to help their loved one live better with aphasia.
For the purpose of helping their loved one get better, knowing how much better aphasia would get was unimportant compared to knowing how to get better, in terms of doing therapy exercises. In contrast, for the purpose of heling their loved one live better, knowing how much better aphasia would get was important because it would help them plan practical support, and help them help their loved one emotionally adjust to living with aphasia.
5. It’s my prognosis too if I’m living with aphasia
The different ways the significant others talked about aphasia recovery showed a hidden message. That is, what matters depends on what the significant other’s relationship is to the person with aphasia.
Those who were the partners of someone with aphasia were much more emotionally invested in how much and when aphasia would – or wouldn’t – get better. Their life was intertwined with the person with aphasia, so however recovery goes would impact them in a big way. Because of this, they seemed more afraid to ask how much recovery would occur, in case it was bad news.
In comparison, those who were the parents, daughter, or close friend of someone with aphasia were much less emotionally invested in how much and when aphasia would or wouldn’t get better. They weren’t living with the person with aphasia, so however recovery goes wouldn’t affect them nearly as much as it would affect a partner. Because of this, they were less afraid to know, and in fact wanted to know, the prognosis, so that they could help their loved one live a better life with aphasia.
What do the findings mean?
Even though the significant other of a stroke patient isn’t the one with a disability, they might still live with a disability. They too can experience significant changes to life after stroke and go through a difficult process of adjustment. They too should be included in conversations about prognosis and in therapy, as people needing care. This would have additional benefits to the patient, because the significant other can provide inside knowledge about them which can be used to make therapy more relevant and more effective.
Including significant others in conversations about prognosis and in therapy means neither the patient nor their significant other is facing the challenge of living with aphasia alone. Instead, they can go through the journey of adjustment and recovery together, and both live better with aphasia.
Where can I learn more?
This blog post is based on the following paper:
Cheng, B. B. Y., Ryan, B. J., Copland, D. A., & Wallace, S. J. (2022). Prognostication in post-stroke aphasia: Perspectives of significant others of people with aphasia on receiving information about recovery. American Journal of Speech-Language Pathology, 31(2), 1-16. doi: 10.1044/2021_AJSLP-21-00170
Read the original paper here:
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