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, specifically in relation to a communication disability.
Why did they do this study?
‘Will I get better?’ is something most people with aphasia want to know. Aphasia is a language impairment that can leave someone unable to use or understand words. It’s most commonly caused by a stroke. Conversations about how much and when things 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, but that’s only one side of the story. Not much is known about the patient’s side of things. That’s what this study looked at. 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 eight people who had aphasia. They were 3-12 months after a stroke and ranged from having mild to very severe difficulties with using and understanding words. The researcher who did the interviews was a qualified speech pathologist. She used communication support techniques to help the people with aphasia understand the interview questions and express their point of view.
What did they find in this study?
There were two main messages in what the people with aphasia said. The first was ‘How would you know without knowing me?’. The second was ‘I need to know, but I don’t want to know’. Here is more detail along with quotes from the people with aphasia (all names are pseudonyms).
How would you know without knowing me?
The people with aphasia said having aphasia is a very personal thing. Each person has a unique set of difficulties with using or understanding words. More importantly, each person is impacted by those difficulties in a different way. For example, Mark had more difficulties with his words than Wendy. But, he didn’t feel disabled because he could still do all the things he normally would in his everyday life, like catching the bus. Wendy, on the other hand, couldn’t go back to her job as an English language teacher even though she only had very mild difficulties, so she still felt disabled.
The people with aphasia also said having trouble finding or understanding words is something that’s “invisible” (Michelle). Others often can’t see how much someone with aphasia is still struggling with their impairment. Michelle, for example, was told she would have a full recovery. The neurologist told Michelle this, but the neurologist didn’t actually see the specific issues Michelle was experiencing with aphasia.
Because aphasia is different for each person and is invisible, the people with aphasia said talking about recovery is “a matter of trust” (Wendy). They felt that it’s hard to get information about a problem that others don’t even realise exists. Like Michelle, some of them got this feeling from the doctors and therapists who were looking after them. For Wendy, this feeling came from doing therapy that didn’t target areas that mattered to her. This made conversations about prognosis feel pointless.
Things that concerned me most… they just sort of brushed them off… I wasn’t being answered… so I thought, why am I bothering asking?... what’s the point? (Wendy)
Still, the people with aphasia said having a doctor or therapist who is warm and positive makes a big difference. They said this was one reason why they still trusted their doctor or their therapist to know what’s best for them in terms of treatment. Another thing is that they all trusted the doctor the most, by default.
I need to know but I don’t want to know
The people with aphasia all struggled to remember exactly what happened after their stroke, and what they were told. But, they all felt frustrated by not knowing what would happen. Thinking about the first six months after his stroke, Nigel said, “two hundred and twenty days felt like fucking two years!”, and Andrew said that not getting information felt “shithouse”.
They all said they needed this information about recovery and what to expect. They needed to know whether they could return to work, how much help they would need day-to-day, whether they needed therapy, and what they could do to help recovery. Not having this information left them in a “limbo” (Michelle).
They also said they need this information for comfort and reassurance. All of them felt vulnerable and scared after having a stroke. Bruno also said he felt a growing “sense of loneliness”. They said not knowing how much or when things might get better makes it hard to be motivated for therapy. It also makes them feel powerless, like they have no control over their situation because they don’t know what’s going on. Nonetheless, each of them seemed to have reached some level of acceptance of uncertainty. Whether or not they were told how much better they would get, most of them had a feeling based on their own judgement of how they were going.
It was also clear that at the same time as wanting to know, they didn’t want to know because it could be bad news. This part of an interview here shows just how devastating conversations about prognosis can be:
Nigel: I didn’t, um. Want to accept. You know (nods, purses lips, folds arms, holds back tears)… (shakes head, folds arms) because I– yeah. No. I was dreaming on, um, 6 months.
…
Nigel: Two weeks ago, ‘your problem aphasia forever’ (gestures arms wide), you know. Oh shit, what?! (shocked expression)… Don’t know what, not want to accept it (shakes head, tears up, looks down in silence).
…
Nigel: Um (… …). Um (… …) (wipes away tears). Um (…). Two years, I can accept it, you know (speaks through tears). Bounce back, um, uh, uh, two years, I can accept it. Um, uh, um (…) My children, you know, can accept that, but, you know (…). Yes. (downcast expression).
The people with aphasia couldn’t say exactly when was the best time to have these difficult conversations. But, they did say that it should be an ongoing conversation. Also, they all said never say never. All of them held on to the hope of returning to normal. Not having definitive answers about how much or when things might get better was frustrating, but it was better than being told that things would never get better.
What do the findings mean?
Adjusting to life after stroke can be a difficult and emotional process. It’s a process that can be triggered by knowing how much or when things might, or might not, get better. That’s what makes conversations about prognosis emotional and sometimes traumatic. But, done properly, talking about how much or when things might get better could be a way to help someone adjust to life after stroke. It could also be a way to know who needs more specialised help, like from a psychologist.
People with aphasia shouldn’t be given a prognosis that puts a full stop on their recovery. In fact, they shouldn’t need to. Even if aphasia isn’t cured, each person with aphasia can improve in ways that make their life better. People want to know when things will go back to normal. But, actually, it’s about finding a new normal.
To talk about prognosis in more sensitive and helpful ways, there needs to be a trusting relationship between a patient and their therapist. One where they reach the same understanding about what’s important to the patient. And one where they set goals together, as a team.
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 people with aphasia on receiving information about recovery. Neuropsychological Rehabilitation. https://dx.doi.org/10.1080/09602011.2022.2051565
You can read the original paper here:
You can also listen to a podcast about this research here:
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