Did you know that there’s more to speech therapy for Parkinson’s disease than boosting volume? More than helping our patients identify real-world situations where they should try their improved voice? Research-based voice programs are great, but our patients want more from us. SLPs are in a great position to teach self-management and self-efficacy. Read on to learn how we can include self-management training in our clinical practice.
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Outline:
- Summary of Yorkston et al. (2017).
- Participant’s expectations before speech therapy.
- What participants said after speech therapy.
- Participants want more tools.
- Beyond speech exercise.
- 5 skills for self-management training.
- Self-management depends on self-efficacy.
- Will you include self-management training in your practice?
- Related Eat, Speak, & Think posts.
- References.
Summary of Yorkston et al., 2017
First off, if you haven’t read Yorkston et al. (2017) yet, I highly recommend that you do. I found it to be eye-opening in so many ways. Basically, Yorkston and colleagues wanted to find out how well SLPs are doing with patient-centered care. They decided to interview people with Parkinson’s disease before and after speech therapy.
The bottom line is that while the SLPs did a fairly good job of training their patients to be louder, they did a fairly poor job of addressing “the broader range of cognitive, linguistic, and emotional issues related to communication” (Yorkson et al, 2017, p. 2).
In this paper, they report on pre- and post-therapy interviews with 11 English-speaking adults living in the community. All of the participants past a cognitive screener, had self-reported speech changes, and were married. Nine were men, the mean age was 67, and the average time post-diagnosis was 7 years.
I always find it interesting and potentially helpful to hear patients talking about what they liked and didn’t like in therapy, and what they would recommend for future SLP-patient interactions. Read on to find out some of what these people had to say!
Participants’ expectations before speech therapy
Patients didn’t expect to get much out of speech therapy. Yorkston and colleagues (2017) suspect that patients assumed speech therapy wouldn’t help much since there wasn’t a cure for Parkinson’s. Here are a couple of quotes from their article:
I’m not sure what I’m going to get out of all of those visits. I’m a little skeptical (participant [P] 01).
At least keep my speech where it’s at, but even hopefully get louder again (P07).
Yorkston et al., 2017, p. 3
Some patients hoped to learn strategies to help them with difficult communication situations. And other patients wanted to feel more comfortable with their speech, even if they couldn’t improve it.
What participants said after speech therapy
Yorkston et al. (2017) found that most participants described their speech therapy as trying to get them to talk louder. It’s a fair bet that people probably went through a SPEAK OUT! or LSVT LOUD program. And the participants generally felt they got louder as a result.
Here’s what a couple of them said about the benefits from speech therapy:
It’s made me more aware, and I do make an effort to speak a little bit more loudly in situations. I think [it] helps my communication and keeps people from asking me, “What did you say?” (P01).
I’m more aware than I used to be that people have trouble understanding me, so I try to slow down and I try to talk louder…, and I can talk loud! (P04)
Yorkston et al., 2017, p. 4
Some people reported increased confidence and comfort:
I think it really helped me to just be more confident with my voice than what it used to be. Yeah, you just kind of make sure everything still works and sounds the same. And that feels good (P07).
“I’m open now to my wife or my daughters telling me at times, just giving me a signal that I’m not talking loud… I feel like I’ve been more actively involved in what’s going on, not just sort of letting things go by (P09).
Yorkston et al., 2017, p. 4
But not everyone felt like they benefited from speech therapy. For example:
Well I think speech therapy did a lot of intensive training of the vocal cords, but I don’t think it did much good (P05).
I think the jury’s still out (P08).
Training’s supposed to make it easier and it doesn’t (P03).
Yorkston et al., 2017, p. 4
Finally, participants generally found the voice exercises to be boring and preferred actual conversational practice, as long as someone was pushing them to speak loudly. (Notice these are not the same people as those just above).
It’s more boring than it needs to be… The part I liked best is the conversation part… that’s actually using speech and being heard in a meaningful sense. The trouble with ahh is that it doesn’t mean anything (P04).
It seemed dumb to do these practices (P01).
The part I like best… is the students and the people I’m working with. I look forward to seeing them. I don’t look forward to the aahing (P11).
Yorkston et al., 2017, p. 4-5
Participants want more tools
Participants generally viewed speaking louder as a tool they could use in certain situations (Yorkston et al., 2017). Here are some quotes:
Everybody must hope that it’s gonna be magic, and the fact is it isn’t, and it’s a tool (P13).
The only way that it’s going to change for me is if I continue to use the tools that I learned there. Basically the tool is to speak up (P08).
Yorkston et al., 2017, p. 5
While participants understood that they needed to continue their exercises to maintain the benefit, they reported barriers to doing so. Yorkston et al. (2017) reported the following complaints: “feeling self-conscious, feeling overburdened, and questioning the value of the exercises.”
It puts quite a burden on people who already have it rough with just day to day walking and living with Parkinson’s (P05).
Yorkston et al., 2017, p. 5
Many participants requested tools for their loved ones and for themselves.
Give them some practical guidelines after they leave so they [family] can be more of a support (P03).
There’s more to me than my voice (P04).
Yorkston et al., 2017, p. 5
In particular, participants pointed out that speech therapy didn’t really address cognitive issues.
For us with Parkinson’s, cognitive issues can be immense. And we only brushed on them in the voice part (P09).
Ask people about the cognitive parts. Are things changing, and help them know that they are, and help them with that. That’s a hard one ’cause that affects my relationships with people (P02).
Yorkston et al., 2017, p. 5-6
It’s so interesting to hear what patients have to say, isn’t it? There’s more in the article. Yorkston and colleagues go on to share concrete ideas for how SLPs can improve self-management training for people with Parkinson’s.
Beyond speech exercise
Yorkston et al. (2017) point out that while voice/motor speech exercises are essential, they are not sufficient if we take our patient’s perspectives into account. They suggest that we teach our patients self-management strategies.
Self-management is a well-known concept in the medical field. Do an online search using terms like “self-management for diabetes” or “self-management for hypertension” to see examples of materials and programs. (Swigert, 2014, p. 67)
…self-management of a condition expands to include not only the medical management of the underlying physical impairment, but also developing accommodations to allow meaningful participation in valued life roles, and also dealing with the emotional journey through a chronic illness.
Yorkston et al., 2017, p. 6
An important point is that we should not assume we know what to focus on in therapy.
The purpose of self-management programs is … to help the client solve what he or she sees as the major concerns for his or her own life.
Yorkston et al., 2017, p. 7
There are multiple ways to find out what our patients’ concerns are, including motivational interviewing, patient-reported outcome measures, and goal attainment scaling.
The 5 skills of self-management
Yorkson et al. (2017) base their discussion of self-management skills on an open access paper by Lorig and Holman (2003). There are five skills that we can help our patients develop:
- Problem-solving.
- Decision-making.
- Identifying and using resources.
- Forming partnerships with health care providers.
- Taking action.
Problem-solving
Teaching a patient to speak louder is not a cure-all for communication problems. We can improve our service to our patients by teaching problem-solving skills. Specifically, we could:
…provide coaching and guidance in how to analyze communication breakdowns, consider a wide range of contributing factors, and brainstorm possible solutions.
Yorkston et al., 2017, p. 8
Yorkston et al. (2017) give a wonderful example about a client who was having trouble talking to his family when they visited on weekends. Yes, the client was improving the loudness of their voice, but it wasn’t enough. I won’t spoil the story for you (plus it’s long), but they came up with very practical, very actionable solutions.
Decision-making
The second skill a patient must learn for optimal self-management is good decision-making. In order to make good decisions:
… the client (and family) must have a good foundational knowledge about the condition and what to expect during its course.
Yorkston et al., 2017, p. 8
SLPs can share information with their clients regarding:
- How Parkinson’s affects speech.
- What makes speech fluctuate.
- How medication affects speech.
- Validating cognitive or language challenges.
- What to expect over time.
- How to prepare for future changes.
- Validating frustration, isolation, or other feelings.
Identifying and using resources
The third self-management skill we can help patients develop is learning how to identify and use resources. The first step is to start with our patient’s interests. Yorkston et al. offer some ideas to consider:
- Join a support group.
- Read literature to educate themselves.
- Find books (or videos) by other people with Parkinson’s disease.
- Participate in a research study.
SLPs can easily incorporate accessing resources into speech therapy. For instance, patients can practice their speech by calling an organization or practice their cognitive skills by writing an email or filling out a contact form. (Yorkston et al, 2017, p. 9)
Relationships with health care providers
SLPs are uniquely situated to help patients improve their relationships with their medical providers, particularly patients with communication or cognitive impairment. We know that people who have communication problems are at higher risk for all sorts of negative outcomes related to accessing medical care and implementing medical advice. (Yorkston et al., 2017, p. 9)
For example, we can help our patients prepare for making a phone call or going to an appointment by:
- Making a short “how to communicate with me” card.
- Writing down questions.
- Making a list of symptoms and concerns.
- Creating a phone call template or “cheat sheet.”
Taking action
The last self-management skill is taking action. Gathering resources, ideas, and exercises won’t do any good if they’re not used. All providers should assist their patients with identifying concrete, actionable steps rather than loading them down with a lot of information. (Yorkston et al., 2017, p. 9)
SLPs are well-situated for teaching patients how to manage their time to achieve their own goals. We can teach our patients how to:
- Identify their own goals.
- Prioritize to figure out which goal to focus on first.
- Determine the steps to achieve their goal.
- Plan when and how they will take action.
Yorkston et al. (2017) point out that identifying a small number of very concrete steps that can be implemented in 1-2 weeks can be very effective. Not only are patients more likely to take action, but this quick success will help build self-efficacy.
Self-efficacy is:
…the confidence one has in his or her own ability to accomplish the plan.
Yorkston et al., 2017, p. 9
We can ask our patients how confident they feel about carrying out their plan. If they report low confidence, then we should work with them to change the plan. (This goes for the assigned home exercise program, too!)
Self-management depends on self-efficacy
Yorkston and colleagues suggest that the success of self-management plans seems to be related to high self-efficacy. In other words, people who feel confident that they can accomplish their plan do a better job of managing their symptoms.
SLPs can help patients improve their self-efficacy through four elements:
- Performance mastery.
- Finding a model.
- Re-interpreting symptoms.
- Social persuasion
Performance mastery
SLPs do an excellent job at helping patients gain confidence that they can speak in a louder voice. Going back to the participants in the study:
It gives me confidence with my voice. (P07)
The best part of it [therapy] is, it told me that I could talk louder. (P03)
Yorkston et al., 2017, p. 10
SLPs can help patients improve their performance mastery by having them do real-life communication tasks during sessions. Being present while they make a phone call, for example, helps them gain the confidence that they really can be understood over the phone. (Yorkston et al, 2017, p. 10)
I think this would make a great therapy activity. After identifying a real call the patient has to make:
- Rehearse the phone call.
- Make a visual reminder to speak loud or with intent.
- Write down key words or questions.
- Provide moral support.
- Use nonverbal feedback during the call (point to a visual aid, cue to speak louder).
- Support patient in an after-action self-assessment.
- Provide feedback.
- Make a plan for the next phone call.
Finding a model
Another way SLPs can help patients gain confidence is by helping them find peer models. Peer models have similar challenges and are succeeding in achieving their goals. As one participant put it:
One of their motivations for participating in therapy was to learn “what people who have successfully addressed the issue do.” (P13)
Yorkston et al., 2017, p. 10
Yorkston and colleagues point out that SLP can assist patients in finding:
- Support groups (in person or virtual).
- Conversation groups (in person or virtual).
- Share anonymous stories and examples of other clients.
Other possibilities are sharing YouTube videos, blogs, podcasts, or books by people living with similar conditions.
Re-interpreting symptoms
Sometimes people may attribute failure to a symptom they can’t change. Such a viewpoint may cause a person to feel helpless, and that it’s “out of their hands.”
Often, a failure is due to multiple factors, some of which can be attributed to other people or the environment. SLPs can help patients re-interpreting their symptoms, which opens up opportunities for achieving the goal.
Yorkston et al. (2017) provide a good example, referring back to the participant who was having trouble communicating with their family during weekend visits.
Social persuasion
The final way that self-efficacy can be improved is through social persuasion.
People are more likely to do what others around them are doing.
Yorkston et al., 2017, p. 11
Social persuasion is a major reason why SPEAK OUT! and LSVT LOUD offer conversation classes after completing their speech programs. People are more likely to continue speaking with increased loudness if they see other people around them also speaking with effort.
SLPs can help patients find a community where they can see other people with Parkinson’s having success. This might be online or in-person support groups, conversation groups, or singing groups. Social media may offer opportunities, as well.
Will you include self-management training in your practice?
In conclusion, SLPs are very good at helping people realize they can speak loudly enough to be heard and understood. We already encourage patients to use that voice in their daily life. But research shows that this is not enough for people with Parkinson’s disease. They want more tools for their toolbox. Yorkston et al. (2017) share concrete suggestions for how SLPs can include self-management training in their clinical practice.
Did you find any new ideas for how to assist your patients improve their self-management or self-efficacy? What other ideas can you share with readers? I’d love to hear from you! Please leave a comment below.
Related Eat, Speak, & Think posts
- Assess readiness to change for better therapy outcomes.
- Collaborative goal-setting to identify meaningful cognitive goals.
- A PROMising shift: SLPs offer person-centered care.
- Goal Attainment Scaling tutorial.
References
- Lorig, K. R., & Holman, H. R. (2003). Self-management education: History, definition, outcomes, and mechanisms. Annals of Behavioral Medicine, 26(1), 1–7. https://doi.org/10.1207/S15324796ABM2601_01
- Swigert, N. (2014). Patient Outcomes, NOMS, and Goal Writing for Pediatrics and Adults. Perspectives on Swallowing and Swallowing Disorders (Dysphagia), 23(2), 65–71. https://doi.org/10.1044/sasd23.2.65
- Yorkston, K., Baylor, C., & Britton, D. (2017). Incorporating the Principles of Self-Management into Treatment of Dysarthria Associated with Parkinson’s Disease. Seminars in speech and language, 38(3), 210–219. https://doi.org/10.1055/s-0037-1602840
Free DIRECT download: Self-management training in Parkinson’s (cheat sheet). (Email subscribers get free access to all the resources in the Free Subscription Library.)
Featured image by Ron Lach from Pexels.
Lisa earned her M.A. in Speech-Language Pathology from the University of Maryland, College Park and her M.A. in Linguistics from the University of California, San Diego.
She participated in research studies with the National Institute on Deafness and other Communication Disorders (NIDCD) and the University of Maryland in the areas of aphasia, Parkinson’s Disease, epilepsy, and fluency disorders.
Lisa has been working as a medical speech-language pathologist since 2008. She has a strong passion for evidence-based assessment and therapy, having earned five ASHA Awards for Professional Participation in Continuing Education.
She launched EatSpeakThink.com in June 2018 to help other clinicians be more successful working in home health, as well as to provide strategies and resources to people living with problems eating, speaking, or thinking.
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