A qualitative study on unfavorable prognosis communication
Research by Amati et al. (2019), in plain language
What’s this study about?
This study looks at what health professionals think about hope when talking to patients in rehab about chances of recovery.
Why did they do this study?
Talking to patients about chances of recovery, or ‘prognosis’, can be tricky, especially when a patient has very different expectations than what a health professional thinks is likely. In this situation, it’s important to think about the role of hope. Hope has been shown to play an important part in the recovery process. It’s thought to help patients adjust to illness and disability, and has also been linked to patients feeling more satisfied with their care and being better able to manage for themselves. But, not much is known about how health professionals maintain hope when talking to patients about their prognosis.
Even though there are some guidelines for health professionals on how to deliver a prognosis, many have the recommendation of giving realistic hope without actually describing specifically how this should be done. What’s more, most of the research looking into prognosis delivery revolves around cancer and other life-threatening situations. On the other hand, there’s not much research looking into prognosis delivery in situations that aren’t life-threatening but life-changing, like recovering in rehab after a stroke. Prognosis delivery in rehab can still involve bad news, which usually relates to lower chances of full recovery and the possibility of having to live with long-term disabilities.
In this study, the researchers wanted to know what health professionals in rehab think about the role of hope, and the strategies they use to maintain hope when talking to patients about prognosis.
How did they do this study?
The researchers interviewed 11 health professionals who were six nurses (five female, one male) and five doctors (all male). Nurses were included because they’re often the ones who get asked questions about recovery by patients. The researchers wanted to interview a diverse group of health professionals to hear different perspectives. The health professionals they interviewed ranged from 24-59 years of age, and their level of work experience ranged from under 1 year to over 20 years. The health professionals were from two rehabilitation clinics in Southern Switzerland. They were interviewed at their clinic during working hours, and the interviews lasted 58 minutes on average. The researchers asked each health professional the same list of interview questions, which covered how they talk about prognosis, what they think about the role of hope in rehab, what makes prognosis delivery easier or harder, and what training they get or need in prognosis delivery. All the interviews were recorded then transcribed. In this study, the researchers and the health professionals spoke Italian. The researchers analysed what the health professionals said by looking for patterns of shared meaning and coming up with key messages.
What did they find in this study?
The role of hope in rehab
The health professionals said that hope is important for keeping patients motivated and engaged in rehab. They said that there’s always room for hope since there’s always room for improvement. They felt that it’s easier to give hope when there are good support and services for patients, which they have in Switzerland. They also felt that since it’s impossible to know for sure what a patient’s recovery will be like, the uncertainty actually leaves room for hope. But, they said that it’s a problem when patients have false hope. This is normally the case when the patient expects that they’ll have a full recovery and completely return to normal, which is quite unrealistic in rehab. In this situation, false hope leads to disappointment and frustration, and makes it harder for the patient to accept their disability.
The health professionals felt that a prognosis isn’t just about how much better a patient will get medically. Rather, it depends a lot on how the patient themself sees their difficulties, and how those difficulties impact them in their day-to-day life. The same prognosis might not be as bad for one patient as it is for another. For example, having a long-term hand disability might not be a huge issue for one patient, but it might be life-changing for another patient who’s a musician. So, health professionals have to be very careful to give hope without giving false hope. If they sense that a patient has unrealistic expectations, they’ll try to bring them back down a bit, whereas if a patient is scared, they’ll try to encourage them more to help them move forward. The health professionals said it’s important to maintain this balance in order to have a trusting relationship with the patient. In this way, the health professionals felt that hope is like a double-edged sword, in that it has potential but it also has risks.
Strategies for maintaining the right amount of hope
None of the health professional had received any training on how to maintain the right amount of hope. There seemed to be three main strategies they use. They said that these strategies are particularly relevant when a patient isn’t ready to accept their prognosis. The first strategy is to give the patient space to think about their difficulties on their own. This means letting the patient experience their difficulties in their day-to-day life. Through this, the patient can start to realise what their prognosis might be and slowly adjust their level of hope to something more realistic.
The second strategy for maintaining the right amount of hope is to talk about prognosis in a way that’s specifically suited to each individual patient. This means personalising when and how they talk about prognosis with a patient. In order to do this, the health professional needs to know the patient’s perspective on their condition, including what they know about the condition, what they’ve understood from previous conversations, and what they expect recovery to be like. Knowing the patient’s perspective very much counts on having good communication between all the health professionals seeing the patient. This is needed to piece together everything known about a patient, based on what each different health professional has seen. The nurses in this study felt that this is where their input is important, because nurses tend to be around patients the most. Since it’s helpful to know what other health professionals have already said to the patient, it’s important for health professionals in rehab to communicate with health professionals in hospital who see patients early on in their recovery.
The right time to talk about prognosis varies from patient to patient, depending on whether a patient’s ready or not. One health professional said that the right time could be not the very start of rehab nor the very end but somewhere in the middle. In this way, there’s been some time to help the patient become aware of what’s realistic for their recovery, and then some time left before discharge to support them in accepting their prognosis.
The third strategy for maintaining the right amount of hope is to support the patient in dealing with their prognosis. One way of supporting patients is to set small and realistic goals for rehab, because setting goals makes the patient think about what they expect and hope for in their recovery. Achieving small and realistic goals also helps patients realise what they’re capable of and motivates them. Another way is to help patients see the positives in their situation, even if their chances for a full recovery are low. Health professionals might do this by pointing out areas where improvement is possible, and focusing on improving the patient’s quality of life. Lastly, giving emotional support is extremely important. Acknowledging the patient’s experience, taking them seriously, and letting them ask questions are all things that help patients deal with their prognosis and maintain hope and motivation. These things also help to make sure patients don’t get the wrong idea about recovery. Even though doctors tend to be the first to talk to patients about prognosis, teamwork is needed to monitor patients and give support when needed. Because of this, all members of the health professional team play a part in giving emotional support.
What do the findings mean?
When talking about chances of recovery in rehab, hope can be a double-edged sword. It can be helpful for motivating patients, but potentially harmful if a patient’s expectations for recovery are unrealistic. It’s important to talk about prognosis in a way that’s specifically suited to each individual patient. One key thing is to have good communication and cooperation in a team of health professionals. This is particularly the case in rehab, where patients are being seen by multiple different health professionals.
Where can I learn more?
This blog post is based on the following paper:
Amati, M., Grignoli, N., Rubinelli, S., Amann, J., & Zanini, C. (2019). The role of hope for health professionals in rehabilitation: A qualitative study on unfavorable prognosis communication. PloS One, 14(10), e0224394. doi:10.1371/journal.pone.0224394
You can read the original research paper here:
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