How do speech pathologists formulate and deliver information about recovery?
Research by Cheng et al. (2020), in plain language
What’s this study about?
This study looks at how speech pathologists answer the question ‘Will I get better?’ asked by people who have difficulties with language after a stroke.
Why did they do this study?
After a stroke, people can have problems with talking, understanding, reading and writing. This is a language impairment called ‘aphasia’, which is treated by speech pathologists. Many patients and families ask ‘Will I get better?’. To answer this, speech pathologists need to, first, predict how recovery will go (formulate the ‘prognosis’), then, tell the person asking (deliver the ‘prognosis’). This two-part task is called ‘prognostication’. Prognostication is important – it gives patients and families an idea of what to expect, and it helps speech pathologists choose the most suitable treatment. But, prognostication is complicated.
One complication is that recovery in aphasia is hard to predict. Some ways of predicting aphasia recovery are to look at the patient’s performance on language tests, the nature of their stroke and their difficulties after stroke, and their personal background and circumstances. There are also new ways of predicting aphasia recovery using brains scans. These methods are getting more accurate, but they’re still not foolproof, so speech pathologists often need to draw on their own experience and judgement to formulate a prognosis. This can be a problem if their predictions are based on factors that aren’t scientifically proven.
Besides formulating the prognosis, delivering the prognosis to patients and families is another difficult task. Prognosis is a sensitive topic and it’s important to think about not just what to say, but when to say it, and how to say it. Other researchers have looked at this, mostly in the area of cancer, heart failure, and multiple sclerosis. Research shows that many people ask about prognosis, but not everyone is emotionally ready to hear it, and the conversation can be a traumatising experience. What information is wanted, and when it is wanted, can be different for different people and change over time. Some people feel unsure about whether or not they want to know, even though the prognosis can help them make plans for their treatment and their future. The first six months after a stroke is a particularly difficult time to talk about prognosis, because it often sets up expectations about recovery and leaves a lasting impression on patients and families.
In terms of how a prognosis is delivered, research shows that clinicians have different ways of framing their response. Sometimes they use numbers or probability words to describe the chances of recovery, other times they give a best and worst-case scenario, or frame it as their opinion. They can also be vague, or say that they’re unsure. But, it seems that many clinicians don’t check to see whether patients and families understood the information. This is another complication, because patients and families might be unhappy with the information they received, or have undesirable reactions to their prognosis, like losing hope or, the opposite, being too hopeful in a way that’s unrealistic.
Even though prognosis is such a hard topic to tackle, we don’t have research on the best way to have these conversations with people living with aphasia. Right now, speech pathologists don’t receive training on how to address prognosis, and many feel anxious about the task. In other settings, like cancer, clinicians have guidelines and training to make sure they talk about prognosis in the most helpful way. To figure out the best way to talk about prognosis with people living with aphasia, the first step is to look at how speech pathologists currently answer the question ‘Will I get better?’. This study aimed to find out the factors speech pathologists consider important when formulating and delivering prognoses, what they say in response to ‘Will I get better?’, how they say it, and how they feel about prognostication.
How did they do this study?
This study was conducted as an online survey. 54 Australian speech pathologists participated. They ranged in age (from under 25 years to over 60 years), level of experience working in aphasia (from under 2 years to over 10 years), and work setting (hospital and community rehabilitation included). The survey had three parts: hypothetical scenarios, short response questions, and rating questions. For the hypothetical scenarios, the speech pathologists read about a patient and had to say what response they would give if the person asked ‘Will I get better?’. There were three hypothetical scenarios with a different patient in each one, some in better shape than others. For the short response questions, they had to list the factors they think are important for formulating and delivering prognoses. For the rating questions, they used a five-point scale, from highly agree to highly disagree, to show how they feel about prognostication.
What did they find in this study?
The factors the speech pathologists thought were important in prognostication fell into several categories. For formulating prognoses, the top categories were: difficulties after stroke, motivation, and family support. Difficulties after stroke included the types of difficulties and how severe they were, how well the patient could understand and think clearly, and whether they were aware of their own difficulties. Motivation referred to different behaviours and mindsets that are helpful or unhelpful to recovery. Family support referred to how much help the patient had with rehabilitation and communication at home, emotional support, and whether family and friends were available. For delivering prognoses, the top categories were: the emotional wellbeing of the person asking, their hope and expectations, and whether they were understanding the information. Emotional wellbeing referred to how the person was feeling emotionally and psychologically, what they needed in terms of emotional support, and who was available to support them. Hope and expectations referred to giving honest information, being realistic, being mindful of the person’s expectations, and balancing hopefulness with being realistic. Understanding information referred to what the person already knew about the situation after stroke, their educational background, and making sure they understood the information delivered.
The hypothetical scenarios showed that the speech pathologists had different ways of answering ‘Will I get better?’, both in terms of what they said and how they said it. In terms of what they said, most sentences talked about the chance of recovery (e.g. ‘your language is improving and I expect it to improve a lot more’), but there were also sentences that didn’t give information about the chance of recovery. These other sentences covered information about different signs and activities that affect the chances of recovery, and they also covered how long it had been since the stroke, what progress the patient had so far, and the importance of family support. For the patient in better shape, the prognoses tended to talk more about the person’s age and their occupation before the stroke. For the patient in worse shape, the prognoses tended to talk more about how severe the stroke and aphasia was, whether the patient was thinking clearly, and their living arrangements after stroke. In terms of how the speech pathologists framed their response, most used probability words to describe the chances of recovery (e.g. ‘Sue’s language may continue to improve slowly’), kept it vague (e.g. ‘Given he has had so many medical complications and has been so unwell, this has not helped with his recovery’), and said they were unsure. Sometimes, the response was framed as “it depends”, or ‘conditional outcomes’ (e.g. ‘it is great that you have a network of people to help you, if you keep working with them and by yourself, your language will still improve’). Rarely were the responses framed as opinions (e.g. ‘I think it will get better’) or absolutes (e.g. ‘yes, it will get better’), and no one gave numbers or best/worst-case scenarios. More responses were framed vaguely, with uncertainty, as conditional outcomes, and as opinions for the patient in better shape, and more responses were framed with probability words, emotion (e.g. ‘Unfortunately, indications are not good’), and as absolutes for the patient in worse shape.
According to their ratings, speech pathologists are frequently asked about prognosis, but they find it intellectually and emotionally challenging to answer. Many have changed how they answer having gained more experience working in aphasia. Even though most of the speech pathologists feel that patients and families appreciate the information they give, one in four don’t feel confident that their prognosis is accurate, and one in four don’t feel confident in knowing the scientifically proven factors that can be used to predict recovery. All of the speech pathologists wanted to know more about research on prognostication for aphasia.
What do these findings mean?
Speech pathologists have different ways of answering the question ‘Will I get better?’. There’s no consistency in the way they formulate and deliver prognoses. On the whole, speech pathologists try to balance hopefulness with being realistic, and they seem to emphasise that recovery “depends” on certain things, but their responses are mostly vague. Also, some of the factors they use to predict recovery aren’t scientifically proven and might actually be unreliable. For example, motivation is thought to be an important factor for predicting recovery, but it’s hard to tell whether a patient is motivated or not, especially if they have difficulties with talking, and we don’t have research showing motivation predicts recovery in aphasia. Based on other studies, we know that information about recovery can mean different things to different people. The same message might be heard as good news by some patients and families, but bad news by others – it’s hard to know without checking their understanding of the information.
Since prognostication is so complicated, and is probably an ongoing conversation not just a one-off answer, we need to know more about speech pathologists’ thought process behind this task. We also need to know patients’ and families’ experiences of receiving prognoses, to make sure their point of view and preferences are respected. More research can help speech pathologists say the right thing to the right person at the right time when faced with the question ‘Will I get better?’.
Where can I learn more?
This blog post is based on the following study:
Cheng, B. B. Y., Worrall, L. E., Copland, D. A., & Wallace, S. J. (2020). Prognostication in post-stroke aphasia: How do speech pathologists formulate and deliver information about recovery? International Journal of Language and Communication Disorders, 55(4), 520-536. doi:10.1111/1460-6984.12534
You can read the original research paper here:
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