Hope in the Aphasia Clinical Process

Episode 143

Hope in Aphasia Clinical Process with Jaqueline Hinckley

In this episode you will learn about:

• the science of hope and theories of hope,
• scales that can be used to measure hope,
• realistic hope and false hope and the importance of having conversations that support realistic hope, and
• ideas to embed hope theories, hope measurement and conversations about hope into clinical aphasiology.

Janet Patterson: Welcome to this edition of Aphasia Access Podversations, a series of conversations about community aphasia programs that follow the LPAA model. My name is Janet Patterson, and I am a Research Speech-Language Pathologist at the VA Northern California Health Care System in Martinez, California, and am a member of the Aphasia Access Podcast Working Group, a community dedicated to supporting better aphasia care. Today, I have the honor of speaking with my longtime friend and colleague, Jackie Hinkley. Jackie is Professor in Speech-Language Pathology and Program Director at Nova Southeastern University. She's currently serving as Chair of the Board of Directors of the National Aphasia Association and is also serving on the Certification Board of the Academy of Neurologic Communication Disorders and Sciences. She is Editor for Language for the Journal of Speech, Language, and Hearing Research, and has several other editorial roles. She is the program lead for Project Bridge and is currently co-project lead on another project funded by PCORI, which is the Patient-Centered Outcomes Research Institute, in which people with aphasia, clinicians, and researchers are co-developing a core impact set for aphasia through the NAA.

The focus of our conversation today is hope and aphasia. As we talk about hope, Jackie and I think of our friend and colleague Sandy Glista, who was an integral part of Aphasia Access, and who exemplified hope in her work and interactions with people with aphasia, students, care partners, and clinicians. Recently, Jackie and I co-wrote a paper examining the science and practice of hope, which forms the basis of our conversation today. Welcome, Jackie, and thank you so much for joining me to talk about our exploration into hope and how we can embed hope into the clinical practice of aphasiology.

Jackie Hinckley: Thank you, Janet. I'm so happy and honored to be talking about hope with you. We've worked together for so long, and hope is such an integral part of what we do, whether we think about it and acknowledge it explicitly or not. So, I'm excited about this topic.

Janet: Let's begin our conversation then with a basic question: What is hope? So, Jackie, a while ago, when we began talking about hope and aphasia, we thought about hope as being something everyone knows about. In speech-language pathology, clinicians and researchers talk about hope as important to a person's aphasia journey. Yet few have looked beneath the surface to understand what hope really means, how it supports rehabilitation outcomes, and examine the science behind hope. We embrace that topic, beginning by looking at hope from a theoretical perspective. The first, and most influential theory we found, is hope theory. Will you describe that theory, Jackie, and give us a glimpse at how it has influenced the science of hope.

Jackie: Yes, while investigating the science of hope, we found that hope theory, which was developed by Snyder and colleagues, was by far the most influential in terms of the amount of literature and references. And in addition, hope theory has been the foundation for tools to measure hope, and has also been the inspiration for recommendations on how we can think about hope in the context of rehabilitation. It really boils down to three main components. The first component in hope theory is the target or goal of hope. So, it's the thing that we want to have happen. The second component of hope theory is termed the pathway. This is the action or a set of actions, some route we have to take to get to that goal that we want to happen. If we don't know how to attain our goal, it will be difficult to maintain hope. The third element is agency, or our belief in our ability to do what will be required on the pathway to achieve the goal. I think that one reason hope theory has been discussed in the context of rehabilitation is because these elements map so intuitively onto important aspects of what we do in therapy.

Janet: Jackie. I think you've said it so clearly and concisely. Cognition, though, also has a role in hope. Our thoughts about past and present actions and feelings can inform our current thinking about goals and pathways. This point is particularly important as it underscores the changing nature of hope. That is, hope is dynamic. It can be used to guide people as they form goals and pathways and agencies. An individual's state of hope can change based on past beliefs, actions, and outcomes for themselves, and also those that they observe in others. But we do need evidence to support this idea, though. Jackie, will you talk about that evidence that hope can change?

Jackie: Sure. Let's start with a simple example first. We can hope that it will not rain on Saturday during our picnic. Of course, that kind of hope is very general because we don't have control over whether it will rain or not. But then, when it does start to rain during the picnic, we can hope that the rain will end soon. I'm sure we can all think of more examples of general hopes that can change from one hour to the next. But the same is true for more specific hopes. A person with aphasia might hope to be able to give a toast at their daughter's wedding. Perhaps thanks to a speech pathologist, that person has a known pathway for how to practice and prepare for giving the toast. The person with aphasia trusts the speech pathologist and believes that this kind of practice and preparation will result in being able to give the toast. But the simplicity of that hope will not remain stable from day to day, week to week, or even necessarily hour to hour. Perhaps after a session that the person with aphasia perceives as unsuccessful, hope may diminish. The person may start to lose hope that they will be able to do the toast. In this example, there are both external and internal factors that mediate hope at any moment in time. First, externally, the practice may not have been that great on that day, but internally the person with aphasia thinks about and emotionally responds to that session in their own particular way. Both external and internal factors will also play a role in what the person with aphasia does. The clinician, as an external factor, may provide helpful or harmful, possibly, responses or supports. Internally, the person with aphasia will bring their own personal history of hope and emotional responses, and these will also help to drive whether hope is completely lost or if hope is restored. In our research, there are some great examples of that by some other investigators.

Janet: That's true, Jackie. And in our investigation, we discovered evidence of the changing nature of hope. In the early days following stroke, an individual may feel hopeless about the future, not knowing what may happen. As rehabilitation unfolds, one might experience positive hope for a future recovery. But one might also experience hopelessness or despair. Individuals bring a lifetime of experience with hope in general, but most people have little, if any, experience with hope surrounding aphasia and rehabilitation. It is reasonable then that they may develop their state of hope based on their general nature, as say, a positive or an optimistic person, or a more pessimistic person. Clinicians have a vital role here in helping clients and families examine their state of hope and then help them to create realistic hope surrounding their aphasia. Jackie, how do you think that understanding the theory of hope and the changing nature of hope can help us in our work with people with aphasia.

Jackie: Well, Janet, the examples you just gave highlight that many people with aphasia, and other conditions, say that hope is a necessity. It's an absolute imperative for being able to persevere. As speech pathologists, our goal is to help people achieve the highest quality of life possible. When it comes to chronic aphasia, that will require perseverance over a long period of time for most people. It is hope that will get people to keep trying. Hope is not necessarily optimism, although sometimes it sounds a bit like it, and they can coexist. If hope is seen as the idea that a target is possible, then we can understand that hope could coexist even in a pessimistic or negative expectation. For example, you might say you don't think it's really going to happen, but it's possible, so we still hold out a little bit of hope. So, optimism and pessimism can be there, but they're really not the same as hope. And hope is also not necessarily the same thing as motivation. While it's true that having a goal, a pathway, and a sense of agency might bring about hope and also motivate hopeful actions, the lack of actions toward a goal does not necessarily constitute a loss of hope. So, for example, a person with aphasia could still hope for a particular outcome and still believe that the outcome is possible without taking any actions toward it. I believe that many clinicians would describe this as a lack of motivation. That's possible, but I think it's important for us to stop describing clients as "unmotivated". Using hope theory as well as other science on motivation, we can break down the critical elements. What is the client hoping for? Do they see the pathway or actions they need to take? Do they see that what you are asking them to do is part of that pathway? Do they believe that they can accomplish the task you are asking them to do? As clinicians, I think we have to understand the complex mix of thinking patterns and emotions that contribute to hope, as well as to other phenomena like motivation.

Janet: Jackie, this observation is crucial to understanding an individual's state of hope. Yes indeed, we talk about words such as motivation, engagement, optimism, and pessimism. They're not the same as hope, but they can contribute to an individual's state of hope. Thinking about all this, however, raises the question of how a clinician might measure an individual's state of hope to begin a clinical conversation about the future. In our research, we discovered that there have been several instruments created to measure hope, although none of them have been in speech-language pathology, and none of them have a ringing endorsement in the research literature. Two scales, however, were reviewed most frequently in the psychology literature, and we believe are appropriate for use with people with aphasia and their families, if they are modified to an aphasia-friendly format, Jackie, will you briefly describe one scale, the Snyder Hope Scale, and I'll then describe the other, the Herth Hope Index?

Jackie: Yes, I think these are both tools that we could use, as you say, to start some important clinical conversations. The Snyder Hope Scale, which is based on hope theory, has 12 items. Four of those are associated with the pathway to hope, and four of them relate to agency. And there are also four distractor items. Each item is endorsed on a four-point scale, so from definitely false to definitely true. As you mentioned, these were not designed to be used with people with aphasia, so the wording is maybe not what we would all pick. But let's give you an example that we wrote into our paper, and here's one of the items. "At the present time, I am energetically pursuing my goals." I think we can all imagine how this simple item, and asking the client to endorse either definitely false, somewhat false, definitely true, somewhat true, at what level this could open up the possibility of discussing with the client what actions or activities either are supporting or would support movement toward the goal in their eyes, which is so important. Janet, let's hear about another example of the hope measure.

Janet: Certainly, the Herth Hope Index is based on a multi-dimensional theoretical foundation of hope and aligns well with client-centered care and a Life Participation Approach to Aphasia. A 12-item scale represents six dimensions of hope. The cognitive-temporal dimension identifies a desired outcome that is realistically probable - the goal. The affective-behavioral dimension relates to feelings of confidence that one can initiate a plan - that's agency and pathway. Finally, the affiliative-contextual dimension recognizes the interdependence of self and others, and self and spirit. Also in our paper, we provided an example of a conversation starter with a person with aphasia using an item from this scale. One of those items is, "I feel scared about my future." Linking this statement to aphasia, the clinician might begin a conversation about the desired outcome, and what actions and relationships it might take to achieve that outcome. Jackie, these examples illustrate the value of assessing hope using these scales. We know that they were not designed for people with aphasia. They're used regularly in the psychology research literature, and I think, as we've discussed here today, these can help form statements or the beginnings of conversations that clinicians might have with clients to help understand how a client is thinking and feeling, and to help generate realistic hope. These examples illustrate how the information that we gain in this discussion or in the responses to these items can help a clinician begin difficult conversations with clients and family members and guide them to create a realistic hope state about their future with aphasia. As we investigated the science of hope, we learned another term - false hope. In aphasia rehabilitation, clinicians may be reluctant to provide specific information about aphasia or about the client's individual treatment plan, fearing that it may create a false sense of hope and be detrimental to the rehabilitation effort. Jackie, what does the science of hope say about false hope?

Jackie: This is such an important question because I think many times clinicians live in fear of giving false hope, and sometimes this leads to inaction on the part of the clinician, and so the clinician doesn't do anything or doesn't give needed information, perhaps. One way to understand false hope is through hope theory, as we've been talking about today. False hope means that the person has an unrealistic or unattainable goal in mind, and that's usually, I think, what we think about when we think about false hope. But false hope also can be that the person has a view of the pathway to that goal that is inappropriately matched to it, and/or a sense of helplessness or a loss of agency. So, with that three-part definition, it could be possible for a clinician to contribute to false hope if there is unrealistic information given, or if there is no information given. Also, if there's no information about how certain actions will lead to a desired goal, or if the clinician does not support the client's development of agency towards the goals. Now, this may also suddenly sound like there's more ways for us to potentially give false hope, and I don't think that's at all the moral of the story. It's important to remember that no single external factor, like a clinician, and the information that's either given or not given, is completely responsible for any person's hope. Each person has individual internal factors and thoughts and a personal history that interact. So, I think for part of it is that we need to stop thinking that the one thing that we say is going to determine everything. On the other hand, we should not take it lightly about what we say. But what we do need to do is to give realistic information. That is how we can help clients develop realistic hope, and that's the good news here. The antidote to false hope is realistic hope.

Janet: And yes, we all like good news. Jackie, I want to emphasize a point that you made earlier about external and internal factors, and no single one factor determines absolutely a state of hope. You know, as a clinician, we might say something, and a week or so later realize we should amend that statement. It's okay to be human as a clinician. It's okay to say, "I'm sorry, I misinterpreted this", or "I have a better idea after having thought about this". That's okay, because if we present ourselves to a client as sort of the one that is the absolute knowledge keeper, that can be just as dangerous as not giving any information. So, an important takeaway from this conversation is that there are many factors, internal and external, that contribute to a client's dynamic state of hope.

Jackie: I just want to add too, that I think this really underscores the importance of having a conversation that allows you to understand what the client is bringing to their state of hope. This is where using, even if you don't use all the items on one of those hope measures, but using a couple of those items, which really are essentially conversation starters about hope, will help you understand what the client is bringing into this picture that otherwise you won't know if you don't if you're not able to, you know, get some additional information.

Janet: So, I mean, that's exactly right, because if you look at the rehabilitation pathway, it's a partnership between the client, family members, or friends, students if they're involved, and the clinician. And the best partnership is when we all have as much information as possible, and it's bidirectional or multidirectional, not always from the clinician to the client about what is best to do. So gather as much information as you can as a clinician, and then you can help the client develop realistic hope given their current state in aphasia and what their goals are, and what they're able to do and willing to do. Excellent thought, and I hope that the clinicians listening to this podcast will reflect on that particular point. But back to the good news - you are right, Jackie, that realistic hope is important. Like we said earlier, we all have hope, and I hope it's not going to rain today, but with the grey clouds in the sky, one might expect rain more likely than not. But realistic hope is grounded in the evidence that supports achievable goals, achievable pathways, realistic pathways, and an estimation of agency. It reflects a positive attitude about a desired outcome that's grounded in acknowledging the reality of the requirements of achieving that outcome. One barrier to realistic hope we mentioned earlier, which is false hope. Another barrier is hopelessness, a cognitive state an individual can create if they believe that achieving a desired outcome is blocked by their ability to act or an expectation that that outcome may be independent of their action. This is where the clinician's actions can guide a person away from hopelessness and false hope, and toward realistic hope. We can't do anything about the rain that's going to come down from the sky this afternoon, but we certainly can frame our beliefs and our expectations about things that we can achieve in the afternoon of rain. But that takes me to thinking about the science of hope, which we've been talking about for the last several minutes. That science sets the foundation for embedding hope into our clinical practice, and we've given a few examples already. Each of us, clinician, client, family mem