Foundational Questions: A Researcher’s ASHF-Launched Quest for Answers Name: Carolyn Baylor, PhD, CCC-SLP Title: Assistant Professor, Department of Rehabilitation Medicine, University of Washington Contact: cbaylor@u.washington.edu ASHFoundation Awards: I focus on understanding the impact of communication disorders on life participation for adults with speech and language disorders—and how we, professionals in the field, can further improve our ... Foundational Questions
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Foundational Questions  |   September 01, 2016
Foundational Questions: A Researcher’s ASHF-Launched Quest for Answers
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ASHA News & Member Stories / Foundational Questions
Foundational Questions   |   September 01, 2016
Foundational Questions: A Researcher’s ASHF-Launched Quest for Answers
The ASHA Leader, September 2016, Vol. 21, online only. doi:10.1044/leader.FQ.21092016.np
The ASHA Leader, September 2016, Vol. 21, online only. doi:10.1044/leader.FQ.21092016.np
Name: Carolyn Baylor, PhD, CCC-SLP
Title: Assistant Professor, Department of Rehabilitation Medicine, University of Washington
ASHFoundation Awards:
  • 2012 Clinical Research Grant ($75,000), “Validating the Communicative Participation Item Bank for the Aphasia Population”

  • 1992 Graduate Student Scholarship ($4,000)

What is the focus of your research?
I focus on understanding the impact of communication disorders on life participation for adults with speech and language disorders—and how we, professionals in the field, can further improve our services to help people meet their goals for what they want and need to do in their life roles.
Many of us in this field are well aware of how speech, language and hearing disorders can impact people’s lives. As clinicians and researchers, we all hear about the loss of jobs, relationships, social activities and other life activities for people with communication disorders. Traditionally, our professions—like other health care professions—took a largely medical or impairment-focused approach to intervention, focusing on fixing the injury and improving our clients’ speech, language or hearing function. While that work is very important, our field—like others—has evolved over the past years to a more biopsychosocial approach. Many clinicians now take a broader view of communication disorders to think about the life impact of the condition and the many different ways we might help people engage in their life roles, particularly if a “cure” of the communication disorder is not feasible.
One branch of my research focuses on qualitative studies, interviewing adults with communication disorders about the life impact of their disorder, and what aspects of intervention have or have not been helpful. We want to understand how we might improve our clinical services to better help people meet their life participation goals. Another branch of my research is quantitative. Our team has been developing a patient-reported outcome measure called the Communicative Participation Item Bank (CPIB), designed to capture the extent to which communication disorders create interference and barriers to life participation for adults from their own perspective. We hope that the CIPB will provide a valid and meaningful tool for identifying clients’ challenges to life participation, guiding treatment goals, and measuring outcomes for participation.
One of the key themes in my research is that adults with different communication disorders face similar restrictions in life participation. Whether the disorder is aphasia due to stroke, dysarthria due to Parkinson’s disease, voice changes due to spasmodic dysphonia, or even hearing loss, many people face similar experiences of loss of jobs, loss of friends, stigma that alienates them from their communities, and challenges navigating the noisy, fast-paced world in which we live. One of my major long-term goals is to explore ways to increase awareness of communication barriers in our environments and ways to advocate for reducing them that would be beneficial to people across different communication disorders. Although different interventions are needed for different diagnoses, many environmental modifications—such as educating communication partners and increasing public awareness—could benefit most people who struggle with communication.
One area that we have started is with developing and implementing a training program for medical and allied health students in how to communicate effectively with patients with different communication disorders in order to promote safe, high quality healthcare and patient autonomy in healthcare settings for this population (see “Simulating Patient Communication Strategies”).
I would like to note that although I am referencing “my” research, this article should acknowledge Kathryn Yorkston, my long-time mentor and colleague at the University of Washington. She started this line of research a number of years ago and should be credited with her ongoing major role.
How did your award from the ASHFoundation lead to your current work?
The award from the ASHFoundation directly supported the branch of our work focused on developing and validating the CPIB patient-reported outcomes measure. Because we are exploring similarities and differences in life participation restrictions across different communication disorders, one of our primary goals for the CPIB was that it would be validated for use with different communication disorders. Most patient-reported outcomes are designed for a specific population—such as the VHI for voice disorders and the OASES for stuttering. However, there are many clinical settings and research questions in which it would be useful and interesting to compare the life impact across different disorders. Disorder-generic patient-reported outcomes measures are rare in the field.
We initially developed the CPIB with people with motor speech and voice disorders, but we had a major goal of validating it for people with aphasia. The ASHFoundation grant funded our first study exploring the validity of the CPIB for people with aphasia. This funding facilitated a major step forward, providing initial quantitative evidence that the CPIB is anticipated to be valid and accessible for use with people with aphasia. With this evidence of the validity of the CPIB for people with aphasia, we can move forward with using it for further clinical and research endeavors with this population.
What are you demonstrating with your research?
Through our qualitative and quantitative research, we are documenting the nature and extent to which communication disorders impact life participation. This is not new information to most clinicians and researchers, but we are helping to shed more light on specific issues, such as understanding and appreciating the common challenges and barriers faced by people across different disorders. Recognizing the common experiences and barriers may really help professionals look beyond our disorder-specific silos to consider new or different approaches to helping people improve their life participation. We hope this research might help clinicians and clients reach across permeable boundaries to explore how we can increase awareness and accommodations for the barriers our clients face. We also think that our research will help us examine ourselves as a profession, to help us reflect on what we are doing well and where we may be failing to meet the life participation needs and goals of our clients. We all strive to help our clients, but we need to listen carefully to what our clients have to say about our professions so that we can continue to grow and evolve to meet their needs.
Why did you choose this research focus?
Before returning to school to pursue my PhD and an academic career, I worked for several years as a clinical speech-language pathologist in medical settings, particularly in the area of voice disorders and head and neck cancer. I received my clinical training before patient-reported outcomes and focus on life participation was a major part of clinical training. Hence, my voice evaluations were fairly traditional and focused on measures of voice quality and vocal function. Although I continue to believe that many of those traditional measures are important for understanding how the voice works, I found that while we needed to do vocal exercises and change vocal behaviors, there was also a considerable amount of work that needed to be done to help clients manage communication demands in their lives and cope with the challenges of voice injuries. When it came time to write progress reports and discharge summaries, I was frustrated that I had formal methods to report data on vocal function and voice behaviors, but no structured, formal way to represent the client’s very important work on the life participation and coping aspects of the voice injury. As SLPs we played an extremely important role in helping our clients navigate life in the context of their injury, but there was no way to measure or reflect this work to key stakeholders in the manner in which they want to see data reported. Thus, it seemed that a very powerful part of what we do is invisible to stakeholders.
This story may sound old now, because here—many years later—we are more accustomed to using patient-reported outcomes, but this was the context in which I began my PhD. I reconnected with Kathryn Yorkston, with whom I had worked during my master’s thesis, and found that she was starting a program of research related to communicative participation and outcomes measurement. Her work resonated with what I felt I had been missing as a clinician and the rest is history.
Most of us know that we can do truly great work and bring profound benefit to the lives of our clients. However, we need to stop periodically to reflect on that work and double-check that we really are having the positive impact we hope to have. And we need a way to demonstrate that impact to key stakeholders.
How has ASHFoundation funding affected your professional life?
I am extremely grateful for the funding I have received from both the NIH and the ASHFoundation. The ASHFoundation support holds a special place in my professional development because it represents validation and encouragement from within the profession. I am aware that the ASHFoundation believes heavily in investing in the next generation of our professions. I first benefitted from this when I received an ASHSFoundation graduate student scholarship as a master’s student. Receiving a research grant many years later is very affirming that I have the potential to make a meaningful contribution to the field. It provides a wonderful sense of belonging and encouragement to know that our own organization recognizes and appreciates our work, and ultimately instills a sense of calling for me to do the same for students and new researchers who will be coming up after me.
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September 2016
Volume 21, Issue 9