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Perspectives – Journal of Humanities in Rehabilitation https://jhrehabredesign.ecdsdev.org A creative exploration of the human experience of disability and healing Thu, 04 Sep 2025 04:52:44 +0000 en-US hourly 1 https://wordpress.org/?v=7.0 The Advancing Accessibility and Disability Equity Summit: An Introduction and Reflection on Key Take-Aways https://jhrehabredesign.ecdsdev.org/2025/09/04/the-advancing-accessibility-and-disability-equity-summit-an-introduction-and-reflection-on-key-take-aways/ https://jhrehabredesign.ecdsdev.org/2025/09/04/the-advancing-accessibility-and-disability-equity-summit-an-introduction-and-reflection-on-key-take-aways/#respond Thu, 04 Sep 2025 04:49:34 +0000 https://jhrehabredesign.ecdsdev.org/?p=14700

The Advancing Accessibility and Disability Equity Summit: An Introduction and Reflection on Key Take-Aways

Amanda Sharp, PT, DPT, PhD

Table of Contents

Introduction

In June 2024, a first-of-its-kind event for physical therapy—the Advancing Accessibility and Disability Equity Summit—was held in Chicago, Illinois. Over the course of two days, a network of professionals with diverse areas of expertise, interests, and relationships to the physical therapy profession collaborated in learning and exploring ways to advance access and equity for people with disabilities.

The purpose of this first-in-a-series issue of the Journal of Humanities in Rehabilitation is to detail the work leading up to the Summit, summarize the content delivered during the event, share key discussions that occurred on-site, and contextualize the importance of the Summit in the current landscape of the profession through narratives, perspectives, and reflections.

 

Background

Initial support for the Summit came from The American Council of Academic Physical Therapy (ACAPT), the primary academic voice for physical therapist education. As an association, ACAPT serves 95% of accredited physical therapist programs. Central funding, organization, and communication for the Summit was a result of ACAPT’s commitment to excellence in physical therapist education, including innovation in diversity, equity, and inclusion.

Establishing need and delineating the structure of the Summit came in the form of a proposal that was submitted and approved by ACAPT in late 2023. The primary aim of the Summit was to: “promote equal access for students with disabilities in physical therapy education by identifying and addressing challenges with technical standards and accommodations, known barriers faced by students, and equipping educators with the tools necessary to address equity in their programs.”

To address this aim, Summit organizers envisioned convening a diverse group of attendees including educators, administrators, disability support staff, students and clinicians with disabilities, representatives from professional organizations, and leaders in disability access. Speakers were directly invited based on their expertise and based on their relationship with disability or the physical therapy profession. Attendee recruitment was led by ACAPT, who distributed an email Call for Attendees to their member institutions and on their website.

A second recruitment email was specifically developed for students who were invited to apply to attend the Summit by describing their interest in disability and diversity in the physical therapy profession. Organizers believed that such a dynamic composition of attendees would ensure that: perspectives would not be limited; thus be better able to consider and discuss improvement in access and inclusion for students with disabilities; and develop recommendations for physical therapy education.

Consistent with the belief that accessibility is essential, the Summit was planned with access in mind. Attendees were asked in advance of any access needs, captions were utilized on all presentations, slide decks were available, and visual descriptions were provided for each speaker as a component of introductions, among other considerations. The structure of the Summit was intentional so that participants would not only consider facilitators and barriers to access in education and ethics but also have time to hear firsthand experiences from students and individuals with disabilities. The structure also would allow time to engage in generative discussions, and opportunities to brainstorm solutions to known questions about disability inclusion in physical therapy.

 

The Summit: Day 1

The Summit included approximately 60 attendees seated at round tables on the 10th floor of the Shirley Ryan Ability Lab in Chicago, Illinois. Dr. Lisa Meeks, MA, PhD, a highly-regarded expert on disability inclusion in medical education, spoke first. During her keynote, Dr. Meeks challenged attendees to consider their understanding of disability and access. She provided data on the prevalence of disability and introduced the definition of ableism—a form of discrimination against people with disabilities based on the belief that a ‘normal’ body and mind are preferable—to highlight the ways that ableism perpetuates bias in multiple facets of healthcare education.

Building on the foundation set by Dr. Meeks, Dr. Amanda Sharp, PT, DPT, PhD, transitioned the lens to focus on the physical therapy profession. Dr. Sharp provided examples of successfully-practicing disabled physical therapists, and highlighted guiding documents from the American Physical Therapy Association (APTA), including the Mission, Vision, and Core Values, to make the case for disability diversity and inclusion. In the final section of the keynote, Dr. Sharp identified the lack of current research on disability in the profession and encouraged attendees to truly reflect and engage on the future of the profession as one with a more diverse and inclusive population.

Panel Discussion 1

The first of several Summit panel discussions, “Breaking Barriers: Strategies for Ensuring Equal Access and Accommodations for Students with Disabilities,” moderated by Dr. Krista Van Der Laan, PT, DPT, involved three disability resource professionals: Matthew Sullivan, PhD; Aggie McGrane, MS; and Hugo Trevino, M.Ed. Through their shared expertise in working to develop accommodations in clinical and didactic settings for healthcare students, several important concepts came through.

They first highlighted the definition of an accommodation through the lens of what is and is not reasonable. For example, an accommodation is an adjustment that removes a barrier to enabling a person with a disability access. An accommodation considered reasonable is one that does not fundamentally alter curriculum, pose a safety risk, or result in undue financial or administrative burden. In considering what is reasonable in physical therapy practice, they highlighted the importance of individual accommodations developed in an iterative process that engages the student, disability professional, and program. Discussion around program expectations in the form of technical standards enhanced the dialogue as panelists further highlighted the need for proactive collaboration.

In the subsequent session, Dr. Meeks, Dr. Sharp, and Enjie Hall, MA, presented on technical standards. According to Federal Guidance on Section 504, technical standards (TS) encompass all non-academic criteria associated with participation in an educational program. Speakers provided a brief historical context for the development of TS and identified the following as key areas for TS according to published work by the Association of American Medical Colleges (AAMC): Intellectual-conceptual abilities, behavioral and social attributes, communication, observation, motor capabilities, and more recently, an ethics or professionalism category. Best practices in writing TS emphasize the use of functional TS, those that focus on the abilities of a learner, over organic TS, which focus on how a student completes a task.

Participants were challenged to consider the introductory language, disability disclosure processes, and the tone of language used in their program-specific TS. A summary of available literature on TS in physical therapy was provided; points emphasized included the lack of recent studies, the high degree of variability in the categories used in these TS, and the identified challenges in even locating TS on many program websites. Finally, this session emphasized the differences between technical standards—which refer to the academic setting; and essential functions—which refer to employment settings. These two areas are frequently confused in discussions and the literature.

Panel Discussion 2

The day’s second panel highlighted accommodations from the perspective of Directors of Clinical Education, Academicians, and a Site Coordinator for Clinical Education (SCCE). One major theme of this panel was the importance of proactive planning and collaboration with disability professionals, like the messaging earlier in the day. Dr. Van der Laan, a Panel 1 participant, spoke about managing faculty resistance to accommodations by addressing misconceptions about logistics, fairness, and providing options. As an SCCE, Dr. Clay Schewe, PT, DPT, further highlighted the importance of clear communication on accommodations as well as using the creativity inherent in physical therapy practice to solve access barriers faced by students with disabilities. As the session progressed the conversation continued to emphasize collaboration, shifting of perspectives, and clear, transparent communication. Summitt attendees shared their own experiences, stories, and problems solved in a dynamic question-and-answer session.

Small Group Discussions

Next, small group discussions began. During the first of several planned roundtable sessions of the Summit, attendees collaborated in consideration of the following prompts:

  1. How can programs ensure access and inclusion for students with disabilities (visible and non-visible)?
  2. What resources, if any, are needed to facilitate implementation of accommodations across the academic setting (non-clinical)? Consider training, awareness, technology, disability offices, etc.
  3. How can the profession re-envision education and access under a generalist education framework?

 

The energy in the room for the roundtable discussions was high. Rather than quiet reflection or wasted time, participants readily discussed the items at hand. Each group utilized a document to collect notes, which will be utilized to qualitatively analyze their shared ideas and perspectives.

Panel Discussion 3

In what was collectively recognized as the pinnacle of the day, five physical therapy students with disabilities participated in a lived-experiences panel moderated by Faye Weinstein, PT, MMSc, MS. Students Emily Reester, Mackenzie Kennedy, Gregory Zambrano, McCall Rae, and Amanda Michel shared openly and honestly about their experiences as disabled students. Discrimination, ableism, and ‘othering’ rang through the stories of each panelist. One student described a lack of support and having to develop their self-named, “black market” accommodations. Others shared ways they hid their disabilities for fear of repercussions. Several attendees, shocked at the harm that had been done to these learners by our own profession, were seen wiping tears away. However, students—and particularly these students—are remarkable and resilient.

As the session ended, all in attendance were left with eight key pieces of advice regarding their interactions with students with disabilities. Presented by Amanda Michel, from Northeastern University, they are:

  1. Assume positive intent.
  2. Assume competence.
  3. Stop using the concept of professionalism to exclude people with disabilities.
  4. Work with students to develop creative solutions to problems that come up.
  5. Re-examine the terminology used to discuss disability and individuals with disabilities.
  6. Aim for disability representation in faculty and staff in physical therapy education programs.
  7. Increase representation of disability in advertisements, social media, and recruiting materials for physical therapy education programs and practice.
  8. Change your attitudes! It’s not just a chore to accommodate. Having more practicing providers with disabilities will benefit the field overall.

 

Day one closed with a summary before a poster and networking event. Attendees spent time informally connecting and reflecting on the Summit so far. Speakers, panelists, and the students all shared their thoughts on what was an energetic and thoughtful first day.

 

The Summit: Day 2

Panel 1

Having developed a foundation based on key concepts—such as access and technical standards—and the shared wisdom from those with lived experiences, Day 2 began with a targeted session titled, “Addressing Implicit Bias and Promoting Diversity in Physical Therapy Education.” Much like the other sessions, this panel was composed of a diverse group of speakers with and without disabilities. Speakers Sarah Caston, PT, DPT; Jae Jin Pak, Laura Van Puymbrouck, PhD, OTR/L, FAOTA; and session moderator Deana Herrman, PT, PhD covered a broad range of topics. From bias awareness, to naming ableism as a form of oppression, Summit attendees were challenged to consider their ethical responsibility to examine disability bias in physical therapy. Resources including art, poetry, performance, film, books, and research were provided and actionable steps suggested. The session ended with an important final thought from the speakers: We can act to combat ableism.

Panel 2

The second lived-experiences panel of the Summit was held next, where practicing physical therapists with disabilities shared their perspectives. Panelists Angela Fritz, PT, DPT; Samantha Newell, PT, DPT; Stacy Flynn, PT, DPT; and Cathron Donaldson, PT, DPT, MS represented both visible and invisible disabilities, and described ways their disability identities related to their education and to their current practice. Each of the panelists are actively practicing therapists; some hold multiple positions spanning academic and clinical environments. Their experiences helped attendees to better appreciate the diverse ways that physical therapists practice and engage in their roles.

A key takeaway shared by all panelists was a reflection on the importance of representation. These providers, disabled, send a powerful message to disabled children that they can also be physical therapists. It will be through increased representation, they reflected, that care delivery is enhanced.

Concurrent Roundtables

In the final section of the Summit, two concurrent roundtable options were offered; attendees were invited to select the topic that best aligned with their interest and/or expertise. One option, “Designing Accessible Clinical Education Experiences,” offered the following prompts for discussion:

  1. How can physical therapy educators, clinical instructors, and students collaborate to advocate for, and implement changes that promote, accessibility in clinical education?
  2. What role can professional organizations and accrediting bodies play in setting standards and providing resources to support accessible clinical education experiences?
  3. What are the most common barriers to accessibility that physical therapy students encounter during their clinical education, and how can educational institutions proactively identify and address these barriers?
  4. How can clinical instructors be better trained and educated to support the needs of students with disabilities or those requiring accommodations?
  5. What ongoing professional development opportunities should be provided to ensure that instructors are knowledgeable about best practices in accessible education?

 

The second option, “Identifying Best Practices for Inclusive Physical Therapy Education,” asked attendees to consider the following prompts:

  1. What elements should be included in the physical therapy curriculum to ensure it is inclusive and reflective of diverse patient populations and student needs?
    1. How do current Accreditation standards support or not support an inclusive curriculum design?
    2. How can case studies, simulations, and practical experiences be designed to incorporate diverse perspectives and conditions?
  2. How can assessment and evaluation methods be designed to be more inclusive and equitable for all physical therapy students, including those with diverse learning styles and abilities?
    1. What alternative assessment strategies can be employed to ensure fair evaluation of student competence, safety, etc.?
    •  
  •  
  1.  

Full Group Discussion

At the end of the roundtable discussions, attendees spent time sharing their thoughts with the full group. This dialogue pulled from both days, all sessions, and helped to center the shared experience. Tangible requests over what happens next or how to facilitate change were common. Evident was the sense of community and shared purpose that was engendered over the course of the event. In the months that have followed, both the community and its purpose have grown.

 

Moving Forward

The Summit’s student attendees remain in contact and continue to reshape perspectives as they move through their clinical education experiences. They have used information from the Summit to advocate for themselves and for others. Similarly, attendees have engaged broadly with their peers and their home institutions. Every action taken—from speaking up, to learning more, to helping reframe ableist thinking, or simply making space for diversity—adds another brick to the path toward having a more accessible and inclusive profession.

The JHR Special Edition Series

Much like the Summit, the purpose of this special edition series is to highlight key issues and experiences, and to provide a space for continued work, centered on disability. This is an intentional space provided to begin a necessary and ongoing conversation. From perspectives and narratives to analyses of Summit roundtable discussions, this series of publications in the Journal of Humanities in Rehabilitation will take readers on a journey. All are invited to reconsider disability within and external to physical therapy.

About the Author(s)

Amanda Sharp, PT, DPT, PhD

Amanda Sharp, PT, DPT, PhD is the Associate Vice Provost for Professional Education at the University of Minnesota. In the Division of Physical Therapy, she serves as the Associate Program Director and is an Associate Professor where she directs several courses related to professional development with an emphasis on historical and contemporary issues related to practice. She emphasizes self-awareness, reflection, and advocacy, striving to ensure students consider the complex role of clinical practice; seeing beyond a diagnosis or treatment plan to truly engage with their clients. Dr. Sharp is an educational researcher with a PhD in Higher Education from the University of Minnesota. Her research centers on disability diversity in physical therapy education and she is a regular consultant to students, colleagues, and other professionals on ways to support disability diverse learners in healthcare education.

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We Are No Longer Alone: Student Panelist Reflections on the Advancing Accessibility and Disability Equity Summit https://jhrehabredesign.ecdsdev.org/2025/09/04/we-are-no-longer-alone-student-panelist-reflections-on-the-advancing-accessibility-and-disability-equity-summit/ https://jhrehabredesign.ecdsdev.org/2025/09/04/we-are-no-longer-alone-student-panelist-reflections-on-the-advancing-accessibility-and-disability-equity-summit/#respond Thu, 04 Sep 2025 04:29:49 +0000 https://jhrehabredesign.ecdsdev.org/?p=14672

We Are No Longer Alone: Student Panelist Reflections on the Advancing Accessibility and Disability Equity Summit

Amanda Michel & Emily Reester & McCall Rae & Mackenzie Kennedy & Gregory Zambrano

Table of Contents

Introduction

The American Council of Academic Physical Therapy (ACAPT) Advancing Accessibility and Disability Equity Summit was designed to explore the lived experiences of disabled therapists and therapy students. An open call was issued to all ACAPT member programs in the months preceding the event, inviting disabled DPT students to apply and attend. Multiple students applied by providing a brief biographical overview and statement on why they desired to engage in the Summit. Five students were subsequently invited to attend and share their experiences on a student panel during the first day of the event. What follows are their own written reflections and observations of this experience, in their own words.

 

The Students Speak

The five of us were incredibly honored to speak on a panel at the ACAPT Advancing Accessibility and Disability Equity Summit about our experiences as DPT students with disabilities. Each of us come from different backgrounds and represent the diverse experiences of living as a person with a disability, but as we reflected on what the Summit meant to us, three common themes emerged from our conversation: Community, Empowerment, and Optimism.

Community

Amanda:

In disability advocacy spaces, I tend to be the only DPT student. When surrounded by DPT students, I tend to be the only student with a disability. This Summit marked my first time being surrounded by a diverse and talented community of disabled clinicians and students. It was the first healthcare space where I felt I could truly be my whole self without judgment. Knowing that I am not alone and that I have such a supportive community encouraging me to succeed has helped me become more confident as a clinician and as a human.

Emily:

My fellow panelists and other attendees with my same diagnosis were validating and encouraging, and it is difficult to put into words the comfort those connections had and continue to have on my life. I am eternally grateful.

Greg:

One of the most rewarding aspects of the conference was meeting other students and professionals with disabilities. Conversations with these individuals revealed a shared determination to break down barriers and challenge stereotypes. Many shared practical advice on navigating clinical rotations, advocating for accommodations, and pursuing leadership roles in the field.

Mackenzie:

I was reminded how lovely the disabled and physical therapy communities are, and how the intersection between the two is exactly where I belong. Meeting and talking to the four other speakers felt as if I was catching up with old friends already. These other students innately and intimately understood my experiences and struggles in ways my classmates and other academic peers could not.

McCall:

Before the conference, I felt that if I was not doing the work to advocate for myself and other PT students with disabilities after me, then no one else was doing the work and it would never get done. The Summit showed me that there were others bearing the burden with me and that I am not alone. To say the least, it was incredible to be in a room with so many people who were there as advocates for PTs and PT students with disabilities. They were there for me, doing the work that at times I feel is not getting done. They were all there not just as advocates, but as accomplices. I had more meaningful conversations in the short time spent at the Summit with a room full of strangers than I had had in a long time. I felt a deep sense of peace, joy, and belonging.

Empowerment

Amanda:

I was shocked and delighted to find that the conference attendees actually wanted to learn about our experiences and hear our ideas! As someone with ideas that are frequently perceived by others as “unrealistic,” the engagement from the audience during our student panel was incredibly validating, and reinforced my belief that disability equity is not as complicated or impossible as people make it seem.

Emily:

This Summit created space for preliminary conversations to happen. The continued steps are to dismantle complacency and implicit bias, creating an inclusive reality where needs are met and legal rights are honored. Let’s work together to include each disabled individual as a whole—not who they are because of their disability, not what they can and cannot do because of their disability, but for who they are as a human being.

Greg:

This experience has deepened my understanding of how disability enriches rather than detracts from professional practice. It has also clarified my aspirations. I aim to be a voice for students and patients with disabilities, ensuring that their needs are represented in both education and clinical care. My goal is to collaborate with institutions to implement systemic changes that make physical therapy education and practice more inclusive. I hope to mentor future generations of physical therapists, sharing the knowledge and experiences I have gained.

Mackenzie:

One moment from that morning that is etched into my mind permanently was when we were presented the story and experience of a therapist who is legally blind. I immediately recalled a conversation with a professor in my program where they told me about how a previous student had been encouraged to—and did—drop out after being diagnosed with a condition causing progressive vision loss. The statement made was, “You need to see to be a physical therapist.” Yet here, in front of me, was the proof that that was false. That previous student had been needlessly denied an opportunity—and their dream—because of systematic ableism. It became abundantly clear in that moment that my knowledge of the ADA—although not widely upheld or enforced—was the only thing protecting me from sharing that student’s fate.

McCall:

There are still people who believe that I cannot or should not be a PT, even after being a successful student throughout school. The weekend of the Summit was full of people who know my Cerebral Palsy will make me a better PT, not a weaker one. On that weekend in Chicago, everything said and everyone there reassured me that I am where I am supposed to be and that I am going to be a great PT. I did not realize how much that was exactly what I needed at the time.

Optimism

Amanda:

In healthcare and academia, it usually seems like DEI-related improvements are implemented too slowly, or not at all, and it is easy to become pessimistic as an advocate. Although there is still much work to be done to ensure that disabled students and clinicians are welcomed and appreciated within healthcare spaces, I believe that this Summit will result in some concrete positive changes in the physical therapy profession, especially regarding implementation and wording of technical standards.

Emily:

It was an awfully dark place I was in prior to attending ACAPT’s Accessibility Summit in June 2024, struggling with access to my accommodations and relentlessly advocating for my rights as a disabled student in a DPT program. I was feeling isolated beyond compare and so broken. One of the ways I cope is writing, and this is a reflection of my feelings:

they take away my humanity when they do this to me

they make me hate myself when they do this to me

they make me the one to blame

and they’re blaming me for something i cannot control

something i have laws protecting me for

and yet, i am always pinned down

struck out

and strung out to dry

fighting for my life

to keep the breath in my lungs

completely, utterly alone

the insanity comes rushing in

and i enter the asylum saying,

“i wish i was never made this way.”

over and over and over and over again.

I came to the Summit seeking connection, honesty, vulnerability, and most importantly, hope. I left with more than hope. I was inspired to continue to stand tall and take up space in every room I walk into regardless of my disability. I gained a newfound self-confidence through the Summit’s teachings on how to better articulate conversations around access and inclusivity.

Greg:

Hearing from seasoned professionals who had overcome similar challenges gave me a renewed sense of confidence. Their stories of resilience underscored the importance of representation in shaping an inclusive future for physical therapy. Speaking at this conference was more than a professional milestone; it was a profoundly personal journey of growth and connection. It reinforced my belief that diversity, including disability, is a strength that enhances our profession’s ability to deliver compassionate, innovative, and effective care. The insights gained from this experience will continue to shape my approach as a student and, eventually, as a licensed physical therapist. Most importantly, the conference reminded me that we are not alone in our struggles or our triumphs. By sharing our stories and learning from one another, we can create a more inclusive and equitable future for all.

Mackenzie:

I realized how much bigger this event was than just talking about our experiences. We were discussing re-writing technical standards, identifying systemic ableism in curriculum, modifying admissions requirements and processes, etc. This was a real meeting of the minds to solve the issues blocking the accessibility of our profession. I quickly began taking notes on these topics to take back to my program.

McCall:

I left knowing that I had people in my corner to ask for resources, give me advice, fight on my behalf, or even just listen and be outraged with me when I experience ableist and unjust acts. I left knowing that it is not a weakness for me to ask for the accommodations I need to succeed in the classroom, clinical setting, or workplace. I left calling people friends who were strangers just a few days before. I left knowing that I have a voice and should not be scared to use it, and with fear being replaced with hope for my future as a physical therapist with a disability and the physical therapy students with disabilities who will come after me.

 

Call to Action

This Summit created an opportunity for us to find each other, and we now know that we are no longer alone. Although we shared the lived experiences of five individuals, there are many stories yet to be told—each deserving of the opportunity to be seen and heard. There are still barriers to break down and commonalities to be found. We ask that you:

  • Continue moving forward, creating waves, and raising your voice to advocate relentlessly for the rights of physical therapy students with disabilities.
  • Continue to strive toward equity in all walks of life.
  • Continue to find community in those who support your mission.
  • Continue to be empowered within your identity.
  • Continue to resist those who try to suppress your identity, and those of other marginalized groups.
  • Never lose hope.

About the Author(s)

Amanda Michel

Amanda Michel (she/her) is a DPT student at Simmons University (graduating May 2025) with a passion for disability justice. She received PT and OT services as a child for developmental motor delays and was later diagnosed with autism and ADHD. Amanda uses her experiences as a patient in the medical system to relate to individuals with disabilities currently seeking care and to advocate on an individual, community, and policy level. Before beginning higher education, Amanda worked as a professional ballet dancer while leading efforts to increase the accessibility of dance education for students with disabilities. As a PT student, she worked as an adaptive sports coach and served as a student intern with the APTA of MA DEI Committee and as a member of APTA’s Disability Justice and Anti-Ableism Catalyst Group. She has presented research at APTA’s Combined Sections Meeting and the APTA of MA Annual Conference, and she served as a student panelist at ACAPT’s Inclusive Horizons Summitt. She was also featured in APTA Magazine’s July 2024 issue. Amanda’s clinical interests include pediatrics, neurology, and acute care, and her research interests include the intersection of disability identity and therapeutic alliance. As an artist and avid reader, Amanda believes that the humanities are essential in delivering engaging, patient-centered care.

Emily Reester

Emily Reester (she/her) is a student at Saint Joseph’s University in Philadelphia, PA, pursuing a Doctorate in Physical Therapy with an anticipated graduation in January 2026. At age four, Emily was diagnosed with bilateral sensorineural hearing loss, and she has worn hearing aids since to engage with the world around her. Her advocacy journey began early, from participating in IEP and 504 planning meetings in her primary education to presenting at the Alexander Graham Bell (AG Bell) Association for the Deaf and Hard of Hearing’s bi-annual conference at sixteen. She continued sharing her story at local colleges and participated in advocacy events through AG Bell. She recently spoke at ACAPT’s Inclusive Horizons Summit in June 2024. Inspired by physical therapy in high school, she’s passionate about helping others despite facing challenges as a person with an “invisible” disability. Emily believes that her disability has shaped her into the person she is today. To Emily, the humanities are an integral part of understanding lived experiences of individuals and help foster connections of community that are meaningful, beautiful, and vulnerable.

McCall Rae

McCall Rae (she/her) is a DPT student at Tennessee State University graduating in Summer 2025. She was born with Spastic Diplegia Cerebral Palsy and received physical and occupational therapy throughout childhood. At the point in her life when she began to contemplate what career she would like to pursue, physical therapy stuck out because she knew the significant impact it made in her life and wanted to walk with others as they worked through their own rehabilitation journey. Knowing the importance of having incredible advocates at every point in her life who played a part in her pursuing her goals, she strives to be an advocate for others and to be the person who encourages them to go after their goals, no matter how big, small, or impossible they may seem. One of the many things McCall enjoys about the field of physical therapy is the opportunity to spend one-on-one time with people, getting to know them and hear their stories while also providing the treatment they need. During her time at a campus ministry as an undergraduate student and later as employee at that same ministry, she began to see the significance that taking the time to see, listen to, and get to know someone by spending intentional time with them and being present can have. Here, she also gained exposure to the humanities and began to recognize the power that they have to bring people together, cultivate relationships, and allow us to feel seen, known, and foster a sense of connection to the people and the world around us.

Mackenzie Kennedy

Mackenzie Kennedy (she/her) is a student physical therapist at the University of North Georgia, currently pursuing her DPT and holding the credential of an ACSM Certified Exercise Physiologist. With a strong foundation built upon shadowing, volunteering, and working within the physical therapy field since 2018 across numerous settings, Mackenzie brings both practical experience and a deep commitment to fostering inclusivity to her academic pursuits. Recognizing the importance of accessibility and disability equity, she has pioneered new guidelines and ideas for inclusivity within the UNG physical therapy program, actively paving the way for future students. Looking ahead, Mackenzie will be transitioning to a full-time therapist role with Benchmark Physical Therapy in the greater metro Atlanta area, where she intends to continue her vital work in promoting inclusivity, with a particular focus on bringing in LGBTQ+ inclusive practices. Drawing from her own lived experience navigating the world with Ehlers Danlos Syndrome, she offers a personal perspective to the crucial conversations surrounding accessibility and disability equity within healthcare. As a student panelist at the “Advancing Accessibility and Disability Equity Summit,” she shared reflections on her journey and the importance of fostering a more inclusive environment for both patients and future clinicians. Mackenzie’s clinical interests include pediatrics, chronic pain management, and the complexities of connective tissue disorders, areas deeply informed by her personal understanding of navigating healthcare with a disability.

Gregory Zambrano

Gregory Zambrano (he/him) is a Doctor of Physical Therapy (DPT) student at the Massachusetts College of Pharmaceutical and Health Sciences, living with Hereditary Spastic Paraplegia (HSP) and receiving physical therapy for as long as he can remember. His personal experiences with disability drive his passion for improving accessibility and inclusion within healthcare. Gregory emphasizes the importance of empathy in patient care, using his own journey to advocate for better understanding and inclusion. Through his studies and advocacy, he strives to foster compassionate care and improve rehabilitation outcomes for individuals with disabilities.

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Forging a New Future https://jhrehabredesign.ecdsdev.org/2025/09/03/forging-a-new-future/ https://jhrehabredesign.ecdsdev.org/2025/09/03/forging-a-new-future/#respond Wed, 03 Sep 2025 13:28:27 +0000 https://jhrehabredesign.ecdsdev.org/?p=14624

Forging a New Future

Deana Herrman, PT, PhD & Sarah Caston, PT, DPT & Priyanka Bhakta, SPT

Table of Contents

Introduction

I met pioneering disability rights activist Judy Heumann once. Our brief meeting coincided with a lobbying action event by a disability rights organization to encourage the United States Congress to pass the Disability Integration Act,1 a bill to legislate more choice in utilizing home and community-based services. My daughter, a curious disabled pre-teen, attended the event as a media intern with the organization and had a chance to interview Ms. Heumann. I was the parent along for the ride.

Realizing Ms. Heumann was likely sitting for her millionth unpaid interview, after they finished speaking I went over to thank her. Ms. Heumann told me that my child was “amazing” and “the future.” I swelled with pride and expressed gratitude for her time, her work, and her overall availability and accessibility to inspire the next generation of disabled youth to make society live up to the values of inclusion and access.

In that moment of pride when the mother of the disability rights movement recognized my daughter’s drive and promise, I also felt like I was hiding a secret. I was late to realize the importance of disability rights and justice, disability identity, disability community, and I was a physical therapist. By this point I was aware of the criticism of rehabilitation related to disability.2-6 Judy Heumann’s own history with physical therapy at school briefly describes a less than inclusive environment resulting in decreased instructional time at school and separation from peers.7

 

Still Fighting for Justice

While a common call is “the future is accessible,” a reality is that the future is disabled.8,9 Disability is not simply erased with access. Disabled people are still working toward realizing their rights and achieving justice. Another reality is that physical therapy has perhaps been a bit slow to support the advocacy work and expertise of disabled people. Instead, it has been upholding ableist norms that may actually have stifled progress toward an accessible future.2-6,10-17

What Can We Do Right Now?

As we think about the immediate future where bodily autonomy is on the line; the Affordable Care Act’s protections may be stripped; and environmental disasters may cause precarity, disablement and loss; what do we as physical therapists do to ensure an equitable, accessible, and inclusive future for all? How can we respectfully and genuinely honor the knowledge and expertise of disabled people in our own work to move us toward an anti-ableist practice?

Judy Heumann is a prominent figure in this resource list. She has authored books, participated in podcasts, is revered in a historical perspective, and is a central figure in the 2020 documentary, Crip Camp.18 For some people, Crip Camp was the entry point to learning about disability history—and the power of the disability community. We need to know history, so we avoid future mistakes, recognize who is missing from that history, and where we need to fill in gaps of knowledge.

Ms. Heumann’s trust in the future generation of disabled youth driving messages of access, inclusion, and anti-ableism forward weighs on me as someone who has watched their own disabled child navigate inaccessible systems and spaces; seen my disabled college students redefine paths to become healthcare providers; and felt the impact of the disability community in changing language, events, societal views, and policy.

 

A Starting Point: Educational Resources

While this resource list originated out of the Access Summit as a take-home tangible piece of info for attendees, it is important that we think about what we will do with these resources to influence the future. This list is not comprehensive; the authors may provide an updated list in the final part of this special issue series of JHR. There is a lot on our to-do list, and perhaps it seems overwhelming. Luckily, resources here give you a path forward.9,14,19-21

How to Begin…

Below are suggestions to help you navigate the resource list:

Reflect. First, know your starting point in relation to disability. Consider if you are informed solely by being a physical therapist and what that can mean for your understanding of disability. Are there any biases, comfort, or discomfort you have around ability and disability? Name them.

Educate yourself. Plan to learn about disability—and learn about it perhaps in a way that you hadn’t before. Read narratives, attend art shows by disabled artists, or attend other disability cultural events. For those of you at universities, disability cultural centers may offer additional spaces in which to learn. Attend bias trainings, journal clubs, informal discussions; watch film/media about disability history and rights. Attend disability culture and justice events.

Recognize. Can you identify ableism? What do you think your role is in addressing ableism? Recognize who is present and who isn’t in discussions, and what media or literature you are consuming to educate yourself.

Integrate new knowledge into everyday practices. Take what you learn and question what you do. How does the social model of disability or disability justice, or how do resources like this one, get brought to our profession to influence it? Ensure representation of disabled people across educational and practice contexts. Amplify disabled voices and stories. What can we do with personal narratives beyond just being “aware” that persons with disabilities have rich, full lives but also still face challenges in society across all areas of work, life, and leisure?

…Forging a New Future for the Profession

As physical therapists we are expected to be lifelong learners; this applies to learning about disability and ableism as well. It is never too late to start, and it is always okay to keep learning, recognize when we don’t know enough, and strive to do better – for the future.

Acknowledgement: Thank you to Cal Montgomery for arranging the interview with Judy Heumann for my daughter and for his leadership in disability advocacy spaces.

 

Resource List

Books

Disability Visibility – Alice Wong

Year of the Tiger – Alice Wong

Disability Intimacy – Alice Wong

Brilliant Imperfection – Eli Clare

Golem Girl (memoir) – Riva Lehrer

Haben: The Deafblind Woman Who Conquered Harvard Law – Haben Germa

Exile & Pride: Disability, Queerness, and Liberation (Duke University Press, 2015) – Eli Clare

The Anti- Ableist Manifesto: Smashing Stereotypes, Forging Change, and Building a Disability- Inclusive World – Tiffany Yu

Demystifying Disability – Emily Ladau

Normal Sucks: How to Live, Learn and Thrive Outside the Lines – Jonathan Mooney

The Pretty One – Keah Brown

Easy Beauty – Chloe Cooper Jones

Just Care – Akemi Nishida

Being Heumann – Judy Heumann

Care Work – Leak Lakshmi Piepzna-Samarasinha

Black Disability Politics – Sami Schalk

Feminist Queer Crip – Alison Kafer

Marbles: Mania, Depression, Michelangelo & Me – Ellen Forney

Capitalism & Disability – Marta Russell

How to Tell When We Will Die: On Pain, Disability and Doom – Johanna Hedva

We’re Not Broken: Changing the Autism Conversation – Eric Garcia

McBride, J The Heaven & Earth Grocery Store (fiction)

True Biz – Sara Novic (fiction)

Good Kings Bad Kings: A Novel – Susan Nussbaum (fiction)

The Anti-Ableist Manifesto – Tiffany Yu

Why I Burned My Book & Other Essays on Disability – Paul Longmore

 

Visual Arts / Art History

Riva Lehrer

Ted Meyer

 

Disabled Musicians

Stevie Wonder

Ray Charles

Django Reinhardt

Rick Allen (Drummer from Def Leppard)

Beethoven

Itzhak Perlman

Eric Howk

The Ying Yang Twins

Jacqueline du Pré

Ren

Lewis Capaldi

Halsey

The Blind Boys of Alabama

 

Social Media / Podcasts

Alice Wong @disability_visibility (IG)

Cole Sydnor @Roll.with.Cole (IG)

Jessica Blinkhorn @Spankbox.atl (IG)

Imani Barbarin @crutches_and_spice (IG)

Sins Invalid @sinsinvalid (IG) (website)

Ellie Goldstein @elliejg16_zebedeemodel (IG)

Chella Man @chellaman (IG)

Lauren Spencer @itslololove (IG)

Mia Mingus @miamingus (IG)

The Disability Tangent Podcast

The Heumann Perspective Podcast

The Disability Visibility Project (link)

 

News Media

Johnson, H. M.  Unspeakable conversations. New York Times. (2003, February 16).

New York Times’ Disability Column

Disabled journalists who cover disability:

Eric Michael Garcia

Sara Luterman

 

Film and Television

Crip Camp (documentary)

Code of the Freaks (documentary)

Fixed: The Science/Fiction of Human Enhancement (documentary)

Reelabilities – film festival

Comedy Central’s Drunk History: Section 504 Rehab Act (sketch comedy)

Speechless (series, ABC)

Special (series, Netflix)

Sex Education (series, Netflix)

 

Advocacy Organizations

Diversability (website link)

Talila A. Lewis (website link)

American Association of People with Disabilities (AAPD)

American Disabled for Attendant Programs Today (ADAPT)

National Council on Independent Living (NCIL)

Disability Justice & Anti-Ableism Catalyst group of the APTA (DJAAC)

Chicagoland Disabled People of Color Coalition (website)

Disability Lead (website)

Autistic Self Advocacy Network (ASAN)

 

Critical Disability Studies Texts

Ellis, K., Garland-Thomson, R., Kent, M., & Robertson, R. (Eds.). (2019). Manifestos for the future of critical disability studies (Vol. 1). Oxon: Routledge.

Gibson, B. (2016). Rehabilitation: A post-critical approach. CRC Press.

Rethinking Rehabilitation: Theory and Practice, edited by Kathryn McPherson, Barbara E. Gibson, Alain Leplege, 2015. (textbook)

“The Art of Flourishing: Conversations on Disability”, The Hastings Center, 2019 -2022

The Disability Studies Reader, Lennard J. Davis, 2015

Keywords for Disability Studies, edited by Rachel Adams, Benjamin Reiss and David Serlin, 2015.

Disability as diversity: A guidebook for inclusion in medicine, nursing, and the health professions. Meeks, L. M., & Neal-Boylan, L. Springer (2020)

Herrman, D., Sharp, A., … & Berg, K. (2024). Dismantling Ableism in Interprofessional Medical Education to Promote Health Equity for People With Disabilities. Eds. Bonilla-Silva, Haozous, E, Meeks, L., et al. In: Reimagining Medical Education: The Future of Health Equity and Social Justice. The AMA MedEd Innovation Series. Elsevier:Philadelphia, PA; 63-74.

 

Suggested Search Terms for Academic Resources

  • ableism
  • anti-ableism
  • disability
  • access or accessibility
  • accommodation
  • disability rights
  • accommodation
  • disability justice

About the Author(s)

Deana Herrman, PT, PhD

Deana Herrman PT, PhD is an assistant professor in the Doctor of Physical Therapy program at Northern Illinois University. Her research incorporates disability studies principles to examine practices in physical therapy and health professions education, and healthcare interventions and practice. Deana believes the humanities should be an integral part of health professions to foster a praxis of reflection, openness and change to better meet societal health needs.

Sarah Caston, PT, DPT

Sarah Caston, PT, DPT is an assistant professor in Emory University’s Division of Physical Therapy, and a member of ACAPT’s Consortium for Humanities, Ethics, and Professionalism. She is a board certified neurologic clinical specialist in physical therapy. Dr. Caston incorporates humanities and narrative reflections into her areas of teaching. Dr. Caston demonstrates her passion for DPT student growth and well-being through co-directing Emory DPT’s Learning Community Program, and directing research on methods to improve student well-being. Dr. Caston’s additional scholarly interests include the intersection of the lived experience of individuals with disability with rehabilitation education and practice, ethics in rehabilitation, and DPT student well- being. She is passionate about promoting humanities practices and student self- reflection around the lived experiences of individuals in marginalized populations, social justice, and rehabilitation ethics.

Priyanka Bhakta, PT, DPT

Priyanka Bhakta is a 2025 graduate of the Doctor of Physical Therapy program at Emory University in Atlanta, Georgia. She graduated with the Class of 2021 from UCLA with her Bachelor of Science in Physiological Science and a minor in Disability Studies. She has worked as Senior Digital Graduate Editorial Associate for the Journal of Humanities in Rehabilitation. She is passionate about finding ways to integrate anti-ableism into physical therapy education and practice and hopes to integrate disability justice into the field of physical therapy and her future work as a clinician.

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Utilizing Drama to Teach Intervention Strategies for Patients With Alzheimer’s Disease: The Intersection of Humanities and Clinical Science https://jhrehabredesign.ecdsdev.org/2025/03/04/utilizing-drama-to-teach-intervention-strategies-for-patients-with-alzheimers-disease-the-intersection-of-humanities-and-clinical-science/ Tue, 04 Mar 2025 14:14:43 +0000 https://jhrehabredesign.ecdsdev.org/?p=11149

Utilizing Drama to Teach Intervention Strategies for Patients With Alzheimer’s Disease: The Intersection of Humanities and Clinical Science

Stephen Carp, PT, PhD & Rebecca Stein, BS, R.T.(R)(MR), CHSE & Kathleen L. Ehrhardt MMS, PA-C, DFAAPA & Susana L. Keller, CScD, MBA, MS

Table of Contents

 

Introduction

Over the past 20 years, interprofessional education (IPE),1 clinical simulation (CS),2 standardized patients (SPs),3 and humanities education4 have markedly altered the pedagogical landscape of healthcare higher education. The rationale for introducing these novel pedagogies was the World Health Organization’s advocating for interdisciplinary and collaborative healthcare education to improve health outcomes.5 The Interprofessional Education Collaborative (IPEC), a non-profit organization, was established in 2009 to improve and facilitate IPE. The mission of IPEC is to ensure that new and current health professionals are proficient in the competencies essential for patient-centered, community- and population-oriented, interprofessional, collaborative practice.6

The Power of Clinical Simulation

An effective facilitator of IPE in entry-level healthcare student education is clinical simulation. Medical CS replicates real-world healthcare scenarios in an educational or healthcare environment, typically on campus, that is safe for education and experimentation purposes. Clinical simulation involves the manipulation of tools, devices, and environments to mimic a particular aspect of clinical care. Within the broad heading of CS are several specific learning methods, which include standardized patients, virtual reality, computerized simulation, high-fidelity manikins, tissue simulators, and task simulators.7

In the final decades of the 20th century, entry-level healthcare education, due to the advancing complexity of clinical practice, focused curricula toward medical content at the expense of humanities education. Recent evidence suggests that the re-inclusion of health humanities content into entry-level healthcare curricula has the capacity to deepen the understanding of and care for the patient.8 Health humanities content can also provide a unique space to question, analyze, and critique contemporary practice, encourage self-reflection, enhance clinical mental and physical well-being, avoid clinical burnout, and improve personal resiliency.9,10 Current health humanities scholarship draws from fields of philosophy, bioethics, history, law, and anthropology, as well as the arts (literature/narrative, poetry, music, film studies, and visual arts).11 The unifying theme of this content is to foster a greater understanding of the human condition.11

Defining Drama in Education

The use of dramatic arts in entry-level healthcare education is not new but is hampered by a lack of a standard definition of drama in education. Role plays and simulations are commonly used in entry-level healthcare education, without the roots from drama or theater mentioned or acknowledged.12 These are typically role-playing activities involving students where one student is cast as the caregiver and the other the patient or a member of the patient’s family. Role play and simulations without the artistic underpinnings are often performed for skill training, and are “to drama as diagrams are to visual art.”13

Role playing and simulations have benefits in entry-level healthcare education but should be considered as educational activities and not dramatic arts. Drama, as summarized in Jefferies et al14 in their systematic review of drama in nursing healthcare curricula, discussed several ways drama can support student learning and professional development. Drama was found to enhance nursing students’ understanding of patient experience through the development of empathy skills. Empathy in healthcare has been defined as the process where a health worker develops an understanding of a patient’s world by the formation of cognitive and emotional connections with them.15 These results are supported by two additional studies.16,17

Bolton wrote that to be labeled “drama” requires artistic underpinnings since drama is an art form.13 The dramatic context is crucial, and drama includes content, theme, substance, emotion, subject matter, and curriculum.14 The art of drama is used to illuminate the truth about an experience or opportunity and not just for retrieving facts or practicing skills. The existence of drama as an art form depends on the participants’ engagement in both the real and fictional contexts at the same time. This dual imagery, viewing the situation from two perspectives simultaneously, is called “metaxis” and adds an important reflective dimension.18

Affective Domain Teaching

Preparing entry-level healthcare students to develop appropriate, professional, and effective personal relationships with patients with Alzheimer’s disease and their families has been problematic.19-22 Research has shown that this content is typically taught in entry-level healthcare programs via lecture (cognitive domain). Empirically, this content would seem to lend itself to presentations in the affective domain. Examples of affective domain teaching include the use of the think-pair-share technique, reflective journaling, simulation and role play, motivational interviewing, and structured controversy.23 Practicality and technology are often cited as confounding variables to this approach.23,24 Confounding variable examples include a belief that affective domain teaching preparation is more time-consuming than cognitive domain teaching preparation, a belief that students prefer being “spoon-fed” content rather than learning in a collaborative classroom, and the challenge incurred transferring classroom affective teaching modules to online learning.24

 

Methods

Since participation in this research was a curricular requirement of entry-level speech and language pathology (SLP), physician assistant (PA), and physical therapy (PT) students, the sampling was purposive and all-inclusive. Learner objectives were developed and are listed in Table 1.

Table 1. Learner Objectives

This qualitative research aims to determine if IPE combined with CS using SPs in a dramatic presentation facilitates learning of professional and effective personal interactions with patients with Alzheimer’s disease and their families.

The agenda for the dramatic presentation is described in Table 2. Although all three cohorts attending the presentation had previously received cognitive-based content on Alzheimer’s disease, the consensus was that the students would benefit from a short review of the subject before the dramatization. The play was written as a two-act drama—each act with the same roles and themes. However, Act One presents an unsuccessful outcome due primarily to the physical therapist presenting confounding variables related to his verbiage, actions, and interventions. Following Act One, there was an audience debriefing with questions developed by a long-practicing qualitative researcher.

Act Two presents a successful outcome primarily due to the effective behaviors and verbiage utilized by the physical therapist. Act Two was also followed by debriefing utilizing the same questions employed after Act One. The three actors were then brought back to the stage to each describe their reflections on playing the husband, patient, and physical therapist. The attending students were required to submit anonymous reflections through the University’s student management system within 24 hours of the presentation.

Table 2: Presentation Agenda

The 20-minute evidence-based didactic presentation about Alzheimer’s disease was produced by the research team. The presentation was given to the students just before the two-act play. Key topics of the presentation given to the students before the dramatic presentation are listed in Table 3.

Table 3: Key Topics of the Didactic Presentation on Alzheimer’s Disease

A two-act, three-person play was written by the researchers. The three actors were members of the University’s Standardized Patient Registry, and all had extensive experience on stage, screen, and television as actors. Stage choreography was developed by members of the University Drama Department. Rehearsals were held over three weeks. Both acts had the same three characters. The play is titled: Stolen Memories: An Alzheimer’s Story In A Two-Act Play. Below are the fictional biographies of the three characters in the play. The title was developed as a “play” on the characters’ last name.

Jasmine Story

Jasmine Story is a 61-year-old woman diagnosed two years ago with age-related Alzheimer’s disease. Following her most recent neurologist visit, her Alzheimer’s status was degraded from early (mild) to middle (moderate) stage. She is a retired second-grade teacher. She received her bachelor’s degree from Morehead State University in Kentucky and her master’s degree in education from the University of Pennsylvania. She retired from teaching at age 60 due to the progression of her disease. She is now receiving Social Security disability.

Jasmine resides with her husband Charles in a two-story home with the master bath on the second floor and a powder room on the first floor. She walks independently at home, holding onto furniture. She has begun falling about once per week. Charles has placed a gate at the top and bottom of the steps because he is afraid of Jasmine falling on the steps.

Jasmine can no longer perform household chores such as washing, drying, and folding clothes unless Charles is assisting. She can brush her teeth and wash her face if Charles provides verbal cueing and set-up. She is on a toileting schedule, but frequent accidents have led to the need to wear a pull-up diaper “just in case.” Jasmine can feed herself but prefers “finger foods.” Charles does not trust her to use the stove or oven.

Jasmine likes holding Charles’ hand and often does not make eye contact with others. At home, she likes to watch television, especially television programs from her youth such as Full House. With strangers she tends to become somewhat paranoid, timid, and fearful. She talks often with Charles but withdraws around strangers. Last week, Jasmine’s daughter Sheila was not sure that her mother recognized her.

Jasmine has been referred to outpatient physical therapy due to a recent fall resulting in a stage II sprain of her left knee medial collateral ligament (MCL), the large ligament on the inside of the left knee. There wasn’t a fracture, but the knee is swollen and painful—especially when standing and walking. MCL sprains typically take six weeks or more to completely resolve. No cast is needed; the usual treatment is a compressive wrap and encouraging ambulation and range-of-motion exercises of the knee. In very painful cases, a removable brace called a knee immobilizer may be used.

Dr. Whitenack, the Story’s family physician, recommended physical therapy for Jasmine to enhance her function and safety at home. The goal of this physical therapy session is to teach Jasmine how to use a walker (she cannot currently walk without it due to pain) and to teach knee exercises to avoid a flexion contracture and permanent weakness.

Charles Story

Charles Story is a 61-year-old accountant working in the Financial Department at a local university. He was hoping to work until 66 years of age but is very concerned that he will need to stop working to become a full-time caregiver for his wife.

Charles’s supervisor has been very accommodating with Charles and his issues with Jasmine. He has permitted him to work from home Monday, Wednesday, and Friday, but requires Charles to be on campus Tuesday and Thursday. Charles and Jasmine have one daughter, Sheila, who is married with three children, ages 2, 4, and 5. Sheila visits every Tuesday and Thursday to check on her mom when Charles is at work.

Charles is becoming frustrated that the quality of his work from home is affected by his need to care for Jasmine. Due to Sheila’s schedule, Jasmine is home alone for about three hours each Tuesday and Thursday afternoon. Three days ago, on a Tuesday, when Charles returned home from work, he found Jasmine on the floor. She had fallen and sprained her knee. Charles took her to the hospital; the sprain was diagnosed as the aforementioned knee injury, and physical therapy was ordered.

Charles is very concerned about finances. The Storys have about 6 months of cash in the bank but if Charles is forced to quit working, there will be no income and no medical insurance. Five years are remaining on their house mortgage at $1400/month, and a car payment is due monthly. Charles has a 401K, but without a pension, he will need this money for retirement income.

Charles is hoping that physical therapy is successful at teaching Jasmine to walk and prevent further falls. He is currently challenged to get her to the bathroom, and he has been carrying her up the steps to bed. His back is sore.

Chris Smith

Chris is the physical therapist assigned to care for Jasmine. In the first case scenario presented, Chris is overworked and challenged by his productivity standard. He is required to treat 13 patients per day and is constantly looking at his watch. He tends to be “all business.” Rather than developing a professional relationship with his patients he tends to focus on the physical therapy tasks, often not listening to his patient’s concerns. He is challenged by deductive thinking; he focuses on a “knee” or “hip” and often ignores other corporal systems and the patient’s verbalized needs and goals. He is a bit scattered and often forgets his patients’ names and diagnoses due to his perceived level of being busy. He is a typically overworked clinician. He is very concerned about professional burnout.

In the second case scenario, Chris is an exemplary physical therapist. He is very empathetic and patient-focused. He can successfully discern the intricacies of his patient and patient’s family beyond her knee injury. He can understand Charles’ low back pain, his caregiver needs, and his exhaustion. He senses Jasmine’s anxiety and addresses it. He uses touch appropriately and always explains what his actions are before he performs them.

 

The Dramatic Presentation

Act One Excerpts: The Poorly Interactive Physical Therapist

Chris: My name is Chris Smith, and I will be your therapist. (He reaches out and shakes Charles’ hand. He reaches his hand to Jasmine but she looks at Chris warily. She does not lift her hand. Chris reaches down and takes Jasmine’s hand in his. She pulls back quickly. She looks at Chris quizzically. She becomes frightened.)

Jasmine: Charles, who is this man? Why did he try to touch me! I want to go home. I don’t like this place. I don’t like strangers touching me!

Chris: (Defensively) I’m just trying to shake your hand. No harm no foul. (Chris is still towering over Jasmine.)

Jasmine: Huh. I don’t understand. (Charles senses Jasmine’s unease and puts his arm around her shoulder. She smiles warmly at him. She turns back to Chris and is once again anxious.) Charles, let’s go home. I want to go home. Take me home. I want to watch television!

Chris: (ignoring Jasmine’s anxiety) So how do you wish to be addressed? Jasmine or Mrs. Story or something else?

Jasmine: (to Charles) What does he mean? He wants my name? Who is this man?

Charles: (to Chris) Please call her Jasmine.

Chris: Okay, Jasmine. According to our medical record, you apparently fell two nights ago and injured your knee. You went to the emergency department, which indicated you had a grade II sprain of the left medial collateral ligament. Is that true?

Jasmine: Who is this man, Charles? I am scared. What is he talking about. Grade two…..

Charles: (to Chris) I am unsure if you know this but I am sure it is in her records. Jasmine was diagnosed with dementia two years ago. I am her caregiver with help from our daughter.

Chris: (frustrated and looking at his watch) Yes, I know. I know. I read this in the chart. We need to speed things up. I have another patient in 30 minutes. (Turns to Charles.) Rather than trying to get information from Jasmine, I’ll talk to you instead. She seems a bit confused. Is that what happened with your sister? Was there a fall?

Charles (a little aggravated) She is my wife. She is not my sister. (To Jasmine) The man wants to know your medical history. (Slowly and caringly) You had your appendix taken out, didn’t you, Jazzy?

Jasmine: (relaxing as she stares at Charles) Yes. I was eight years old. My mommy stayed in the hospital with me.

Charles: And you take medicine for your blood pressure?

Jasmine: Blood pressure. That is Dr. Whitenack, isn’t it? He takes care of my blood pressure. He is a very nice man. (turning to Chris) He never hurts me.

Charles: (hugs Jasmine). That is correct. He never hurts you. You are one smart lady (he beams, and she smiles back).

Chris: (impatiently) Let me start by taking your blood pressure. (He stands and places the cuff around Jasmine’s arm and begins inflation. She initially looks at the cuff quizzically but as the pressure increases, she begins to get anxious.)

Jasmine: Take it off!! You are hurting me!! Take it off? Charles, make him take it off!

Chris: You must be patient. I need to do this. You need to control yourself.

 

Figure 1: Mr. and Mrs. Story in the Physical Therapy Waiting Room. Mrs. Story is unsure where she is and why she is there. She reaches out to her husband, the only constant in the experience.
Figure 2: A Rushed Physical Therapist Attempting to Take Mrs. Story’s Blood Pressure. Figure 2 depicts a very frightened Mrs. Story. She does not know where she is and who this man is who is grabbing her arm. She shouts for her husband to take her home.

 

Act Two Excerpts: The Empathetic Physical Therapist

Chris: (quietly to Charles) From the way you are moving it looks like you have low back pain. I’ll talk to you about that later. (Chris leans forward to talk with Jasmine.) Hello! What a pretty blouse you have. My wife has the same one. It really matches your eyes. (He pauses and waits for Jasmine to smile). Would you like to see a picture of my wife and child?

Jasmine (tentatively) Yes…

Chris: (takes out his phone and finds a picture) My wife’s name is Annie. I have one daughter. Her name is Matilda and she is two years old. Aren’t they beautiful? Annie is a teacher.

Jasmine: (studies the screen) Beautiful. Beautiful baby. (She fingers the screen as if she is touching the baby’s skin.) Is that Sheila?

Chris: (to Charles) Sheila?

Charles: No that is Matilda, Chris’ baby. (To Chris) Sheila is our daughter’s name. She is a bit older than Matilda. (To Jasmine) You really loved that baby stage, didn’t you, Jaz? (Jasmine smiles). You love children.

Chris: My wife is a teacher.

Jasmine: Teacher?? Teacher?? (Excitedly) Charles, I am a teacher.

Charles: Yes. You are a teacher. A terrific teacher. Once a teacher always a teacher, Jazzy. (To Chris) Jazzy taught for 35 years in the Philadelphia Public Schools system. Mostly second grade. Her Master’s is from Penn.

Chris: (to Jasmine). My wife teaches second grade!! She said that is the best grade to teach.

Jasmine: (repeats Chris’s comment) Second- grade- is- the- best- grade- to- teach.

Chris: (to Jasmine, smiling) The best grade to teach. (Jasmine smiles at him and gently touches his face. She again looks at the picture on the phone.)

Jasmine: You have a beautiful daughter. (She hands back the phone.)

Chris: I am a very lucky man. And your husband is very lucky to have you.

Jasmine: (not fully understanding but repeats) Yes Charles- is very- lucky- to- have- me.

Chris: (Reaches for the table and picks up a knee brace.) Jasmine, do you know what this is? (He hands the brace to Jasmine to examine.)

Jasmine: A brace. My mommy wore one on her knee.

Chris: (Excitedly, and fist bumps Jasmine.) You are 100% right. This brace will help control your knee pain. I’d like you to wear it when you are walking. Just like your mom did. Is that okay?

Jasmine: (warily) Well, yes. Like my mom did.

Charles: I’ll see to it.

Chris: (to Charles) And she needn’t wear it while showering, sitting for long periods, or in bed. The sole purpose is to decrease her pain to permit her to walk better than she has been. (To Jasmine) May I put the brace on your leg? Again, if I hurt you, tell me to stop. You are the boss.

Jasmine: (confidently) I am the boss!!

Chris: (Chris rewraps the knee and places the brace on Jasmine’s leg.) (To Jasmine) Your knee problem is only a temporary inconvenience. It will all be better in a few weeks, and you will be as good as new. Do you know what a temporary inconvenience is?

Jasmine: (thinks) …Poison ivy is a temporary inconvenience.

 

Results

The qualitative data from this study originated in the debriefing and through the written reflections anonymously submitted by the students.

Table 4 lists the debriefing questions offered after Act One and after Act Two. The questions were formulated by an experienced qualitative researcher. Data were analyzed through thematic analyses. Thematic analysis identifies, categorizes, analyzes and interprets patterns written or spoken narratives.

Table 5 lists the five themes identified by the researchers, and examples of each from the debriefing and written reflections.

Table 4: Debriefing Questions

Table 5: Identified Themes and Examples of Each

Evaluation of Student Comments

The healthcare students’ comments centered on five themes. The most referenced theme was Healthcare workers need to amend their evaluative and treatment algorithms to meet the needs and impairments of a patient with Alzheimer’s disease. Nearly 40% of student comments referenced this theme. Entry-level students develop conceptual frameworks or algorithms related to evaluative and intervention processes. One student shared:

I have a recipe in my head how to evaluate and treat soft tissue injuries of the knees. A to B to C to D. I can now see that this does not work with this cohort. I need to use my words, body language, smile, and tone to develop a bond with the patient.”

And another:

“When I provide education, I will need to teach the patient and the family.”

Another:

“With this group I need to take it off autopilot.”

Lastly:

“A small gain is still gain.”

Students realized that treating patients with Alzheimer’s is an art unto itself—requiring different skills than treating patients who are cognitively intact.

The second theme, The tragedy of Alzheimer’s disease, emphasized the learning by students of the scope and breadth of this disease; and how its impacts across boundaries such as human relationships, finances, time, physical effort, and planning. One student wrote:

“This is not like a rotator cuff injury in a 20-something.”

The third theme identified was The need for extraordinary communication skills by the healthcare worker. Students described the need, in this cohort, to employ “top of the license” (as one student wrote) communication skills. Another student wrote:

“In a weird way, perhaps the best parallel would be working in a hospice. In both (sic) patients on hospice and with Alzheimer’s disease, the future is clear but we just do not know where or when. Words become more important than deeds.”

The fourth theme identified was The importance of family. Students spoke and wrote eloquently of how wonderfully the husband cared for his wife. One student called him a “role model.” Another student shared in a reflection:

“I guess it is true. When all else is gone, all that is left is love.” 

 

Discussion

As healthcare workers, we are taught the difference between diagnosis and illness. The diagnosis informs us of the pathology: cellular unit dysfunction, metabolic abnormalities, diagnostics, and intervention. Illness is related to the impact of the diagnosis on the patient and the patient’s support system. An effective bridge for the healthcare worker to move from diagnosis to illness is empathy: empathy toward the patient, toward the family and even toward the members of the healthcare team struggling to treat the patient. At the metacognition level of teaching entry-level healthcare students, humanities education and particularly the dramatic arts can add an incredible amount of understanding, appreciation, and empathy to student content knowledge.

This is especially important when, as students or as licensed workers, we are asked to work with patients and families with complex disease processes. Dramatic Arts, as perhaps a prototypical example of humanities content, is an important and underused adjuvant teaching pedagogy. When used correctly in entry-level healthcare programs, this tool stimulates the learner’s creativity and problem solving. It can challenge students’ perceptions about their world, their biases, and about themselves.

The use of Dramatic Arts permits reflection-in-action and reflection-on-action. How many times have we exited a dramatic production only to relive specific aspects of the play or movie days, weeks, or months later? In addition, university educators are trained to primarily teach in the cognitive domain; actors are trained to teach in the affective domain.

Dramatic Arts in Curricula

Dramatic Arts can be inserted into entry-level curricula in several ways. The authors of this manuscript chose to write a play because we enjoy writing, and we were able to assemble the script content in such a way as to match our learning objectives. Our University is fortunate to have a healthcare simulation program with many qualified standardized patients to call upon as actors. However, the insertion of the Dramatic Arts need not be as complex as our process. Less complex methods may include live poetry and play readings using students, watch-parties for films and recordings of theater, and attendance as a class at community theater productions.

One colleague, a pathophysiology teacher, requires her students to write a one-act play, involving a family member with a specific diagnosis. The play must depict the interaction of an occupational therapist teaching the patient and family about the diagnosis. My colleague found that requiring the students to write the dialogue has become an effective learning tool about the diagnosis but also about developing the therapist-patient cooperative alliance. She also uses the assignment to teach about implicit bias that can appear in the narrative.

Drama in Healthcare Education

Drama, when employed in healthcare education, can educate students using the four teaching domains: spiritual, cognitive, affective and psychomotor. Therefore, the chance of meeting the needs of varied learner types is advanced. Dramatic exploration can provide students with an outlet for emotions, thoughts, and dreams that they might not otherwise have the means to experience, verbalize, or write. When drama includes a medical diagnosis, such as ours with Alzheimer’s disease, the learner, through empathetic bonding, can become each character—the patient, the therapist, and the spouse—and develop an appreciation of the struggles, concerns, needs, and pain of each character far beyond what can be perceived when learning in the cognitive domain.25 What an amazing learning experience!

Drama happens in a safe arena, where actions and consequences can be examined, discussed, and in a very real sense, experienced, without the dangers and pitfalls that such experimentation would obviously lead to in the “real” world.26 Drama is real life with the dull parts removed. Including an interprofessional component such as adding more than one healthcare student professional cohort to the audience and debriefing session, adds richness to the learning and to the reflective process.

A Call for New Research and Curricular Design

Although there are limitations to our study—only one data collection site, only three disciplines involved, and a lack of quantitative outcome data—we feel that our research validates the effectiveness of this novel pedagogy. We hope it will incur interest in health educators to include this educational tool in entry-level healthcare education, and to consider producing rigorous research related to the effectiveness of the use of Dramatic Arts in entry-level student education. Healthcare educators should cogently consider the addition of Dramatic Arts to curricular design.

This work is not licensed under a Creative Commons Attribution 4.0 International License. Please defer all requests for copies, distribution or derivatives will to the author at Stephen.Carp@desales.edu.

References

  1. Guraya SY, Barr H. The effectiveness of interprofessional education in healthcare: a systematic review and meta-analysis. Kaohsiung J Med Sci. 2018;34(3):160-165.
  2. Lamé G, Dixon-Woods M. Using clinical simulation to study how to improve quality and safety in healthcare. BMJ Sim Tech Learn. 2020;6(2):87.
  3. Herge EA, Lorch A, DeAngelis T, Vause-Earland T, Mollo K, Zapletal A. The standardized patient encounter: a dynamic educational approach to enhance students’ clinical healthcare skills. J Allied Health. 2013;42(4):229-235.
  4. Blanton S, Greenfield BH, Jensen GM, Swisher LL, Kirsch NR, Davis C, Purtilo R. Can reading Tolstoy make us better physical therapists? The role of the health humanities in physical therapy. Phys Ther. 2020;100(6):885-889.
  5. Yan J, Gilbert JH, Hoffman SJ. World Health Organization study group on interprofessional education and collaborative practice. Journal of interprofessional care. 2007 Dec;21(6):588-9.
  6. Collaborative IE. IPEC core competencies for interprofessional collaborative practice: Version 3. Interprofessional Education Collaborative. 2023.
  7. Jones F, Passos-Neto CE, Braghiroli OF. Simulation in medical education: brief history and methodology. Princip Pract Clin Res. 2015;Sep16:1(2).
  8. Hafferty FW, O’Donnell JF, editors. The Hidden Curriculum in Health Professional Education. Dartmouth College Press; 2015.
  9. Jones T, Blackie M, Garden R, Wear D. The almost right word: the move from medical to health humanities. Acad Med. 2017;92:932–5. https://doi.org/10.1097/ACM.00000000000015.
  10. Dhara A, Fraser S. Five ways to get a grip on teaching advocacy in medical education: the health humanities as a novel approach. Can Med Educ J. 2024;15(1):75-7.
  11. Moniz T, Golafshani M, Gaspar CM, Adams NE, Haidet P, Sukhera J, Volpe RL, De Boer C, Lingard L. How are the arts and humanities used in medical education? Results of a scoping review. Acad Med. 2021;96(8):1213-22.
  12. Gelis A, Cervello S, Rey R, Llorca G, Lambert P, Franck N, Dupeyron A, Delpont M, Rolland B. Peer role-play for training communication skills in medical students: a systematic review. Simulat Health. 2020;15(2):106-11.
  13. Bolton C. Assessment in the drama classroom: a culturally responsive and student-centered approach. (Book review.) Educ North. 2024.
  14. Jefferies D, Glew P, Karhani Z, McNally S, Ramjan LM. The educational benefits of drama in nursing education: a critical literature review. Nurse Educ Today. 2021;98:104669.
  15. Dickinson T, Mawdsley DL, Hanlon-Smith C. Using drama to teach interpersonal skills. Ment Health Pract. 2016;19(8).
  16. de Carvalho Filho MA, Ledubino A, Frutuoso L, da Silva Wanderlei J, Jaarsma D, Helmich E, Strazzacappa M. Medical education empowered by theater (MEET). Acad Med. 2020;95(8):1191-200.
  17. Matharu KS, Howell J, Fitzgerald F. Drama and empathy in medical education. Lit Comp. 2011;8(7):443-54.
  18. Wells T, Sandretto S, Tilson J. Metaxis moments prompted by authentic questions in primary classroom contexts. J Applied Theatre Perform. 2023;28(2):195-209.
  19. Tatulian SA. Challenges and hopes for Alzheimer’s disease. Drug Disc Today. 2022;27(4):1027-43.
  20. Torrence C, Bhanu A, Bertrand J, Dye C, Truong K, Madathil KC. Preparing future health care workers for interactions with people with dementia: a mixed methods study. Gerontol Geriatr Educ. 2023;44(2):223-42.
  21. Sideman AB, Alagappan C, de Jesus AH, Ma M, Dohan D, Rosen HJ, Chodos AH, Possin KL, Borson S, Rankin KP. Challenges and approaches when addressing dementia in the context of chronic comorbid conditions in primary care settings. Alzh Dement. 2023;19:e065962.
  22. Bernstein Sideman A, Al-Rousan T, Tsoy E, Piña Escudero SD, Pintado-Caipa M, Kanjanapong S, et al. Facilitators and barriers to dementia assessment and diagnosis: perspectives from dementia experts within a global health context. Front Neurol. 2022;13:769360.
  23. Donlan P. Developing affective domain learning in health professions education. J Allied Health. 2018;47(4):289-95.
  24. Casey A, Fernandez-Rio J. Cooperative learning and the affective domain. J Phys Educ, Rec, Dance. 2019;90(3):12-7.
  25. Reeves AL, Nyatanga B, Neilson SJ. Transforming empathy to empathetic practice amongst nursing and drama students. J App Theatre Perform. 2021;26(2):358-75.

About the Author(s)

Stephen Carp, PT, PhD

Stephen Carp, PT, PhD is currently Associate Professor in the Doctor of Physical Therapy Program at DeSales University. His PhD is in Motor Control, and he is also a Geriatric Certified Specialist (GCS.) He teaches in the areas of Geriatrics, Clinical Medicine, Professional Development, Management of Physical Therapy Practices, and Research. His areas of research interest include: effectiveness of non-government support of the poor; doctoral program admissions; immigration medicine; and exercise and its relationship to cognition and fall-risk.

He has authored over 15 publications and has published two textbooks, with the most recent being Foundations: An Introduction to Physical Therapy, published in January of 2019. In addition, he has authored four book chapters. He has served as an item writer for the Federation of State Boards of Physical Therapy and has developed three continuing education programs for the APTA. Dr. Carp is a Combined Sections Meeting proposal reviewer for the Academy of Physical Therapy Education and Academy of Acute Care Physical Therapy. He has presented at numerous national meetings. He was awarded the 2019 Distinguished Educator Award by the Academy of Geriatrics of the American Physical Therapy Association and delivered the 2020 APTA-PA Conference keynote address.
He is a journal reviewer for six journals, including the Journal of the American Physical Therapy Association and is a grant reviewer for the U.S. Army and the Army Medical Research and Material Command and the Occupational, Safety and Health Administration.

He has a broad community service agenda, including co-directing the Norristown Immigration Clinic with Kerstin Palombaro, PT, PhD of Widener University, the Society of Saint Vincent DePaul, and directing the pro bono Rehabilitation Clinic at St. Catherine’s Infirmary in Germantown, PA. For the past seven years he has led a physical therapy student-directed service trip to Guatemala. Dr. Carp maintains a clinical practice at Chestnut Hill Hospital in Philadelphia, PA. He resides in Harleysville, Pennsylvania with his wife Diane. He and Diane have four children and two grandchildren.

Rebecca Stein, BS, R.T.(R)(MR), CHSE

Rebecca Stein, BS, R.T.(R)(MR), CHSE is the Director of Healthcare Simulation at DeSales University, where she combines her passion for healthcare education with over two decades of experience in medical imaging. She holds a Bachelor of Science in Medical Imaging from Bloomsburg University, is a member of the Society for Simulation in Healthcare and is a Certified Healthcare Simulation Educator. She holds certifications in Radiography and MRI. Rebecca is dedicated to creating innovative, inclusive, and collaborative simulation experiences that prepare future healthcare professionals for real-world practice.
Passionate about advancing healthcare education, Rebecca collaborates with faculty and administrators to enhance simulation-based learning that fosters clinical competence, critical thinking, and interprofessional collaboration. She remains committed to promoting experiential learning, clinical competence, and the integration of humanities in healthcare education to foster a more holistic approach to patient care. When not in the Simulation Center, Rebecca enjoys cooking, laughing with her family, and spending time outdoors. She is always seeking new adventures and memories with the ones she loves.

Kathleen L. Ehrhardt MMS, PA-C, DFAAPA

Kathleen Ehrhardt, MMS, PA-C, DFAAPA, Associate Professor, is a physician assistant who has worked in women’s health for over 30 years, primarily in obstetrics, gynecology, and gynecologic oncology.

She graduated from St. Francis University Physician Assistant Program in 1990 and received her Master of Medical Studies from the same university in 1994.

Kathy has been faculty in the DeSales University Physician Assistant Program since its inception in 1997. She was promoted to Program Director in 2021. Prior to this, she had served in various leadership roles in the PA Program, including Assistant Program Director, Academic Coordinator, and Chair of the Medical Studies major.

Kathy was appointed to the Board of Trustees of St. Luke’s Quakertown Hospital in April 2012 and served until October 2024. She was Chairman of the Board of Trustees for both St’ Luke’s Upper Bucks and Quakertown Campuses from October 2022 until October 2024. Various prior leadership roles included Vice President of the Board and Chair of the Quality Committee. Kathy was elected to serve on the nccPA Health Foundation Board of Directors and served from January 2016 until December 2021. Kathy has also currently serves on the DeSales Free Clinic Board of Advisors since January 2007.

Various awards include the DeSales University Provost’s Faculty Excellence Award in Service in 2020, Educator of the Year from the Pennsylvania Society of Physician Assistants (PSPA) in 2016, and Distinguished Fellow of the American Academy of Physician Assistants in 2016.

Kathy has also served on the PACKRAT test writing committee. She has been in the House of Delegates of the American Academy of Physician Assistants (AAPA), representing the Physician Assistant Education Association (PAEA). Additionally, Kathy has enjoyed speaking at international, national, state, and local levels about women’s health, PA education, and interprofessional education. Current research interests include interprofessional education and humanities in medical education. Kathy is interested in humanities as it applies to the medical education of PA students in its ability to help train future physician assistants to be more empathetic, connect with patients, and provide more patient-centered care. In her spare time, Kathy enjoys sewing, reading, and spending time with her family.

Susana L. Keller, CScD, MBA, MS

Susana L. Keller, CScD, MBA, MS brings clinical experience across the lifespan and administrative leadership in corporate and non-profit organizations. Dr. Keller is the founding program director and department chair for the Center for Communication Sciences & Disorders at DeSales University in PA. Her teaching and research explore the theory-practice gap, cultural responsibility, and technology in higher education. She also studies the impact of AI on human communication.

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Building Community Through Storytelling: A Case Report https://jhrehabredesign.ecdsdev.org/2025/02/24/building-community-through-storytelling-a-case-report/ Tue, 25 Feb 2025 04:16:48 +0000 https://jhrehabredesign.ecdsdev.org/?p=11130

Building Community Through Storytelling: A Case Report

Didi Matthews, PT, DPT & Shreya Jain, PhD & Joshua Limlingan, PT, DPT

Table of Contents

Physical therapy plays a leading role in patient-centered care, where physical therapists have the unique ability to transform patients’ lives by helping them restore mobility, build confidence, and regain independence. However, the profession faces significant diversity challenges in the United States, with 82.6% of physical therapists identifying as White compared to 58.9% of the population (US Bureau of Labor Statistics, 2020 US Census). This lack of diversity can result in potential gaps in empathy, tolerance, and understanding between physical therapists and the patients they serve. It may also impact the sense of belonging among physical therapists from underrepresented groups, who might struggle to find role models or colleagues with similar experiences and perspectives.1,2

Storytelling—the sharing of ideas, beliefs, and struggles of individuals through narratives—offers a powerful way to address some of these challenges by providing a platform for diverse voices to be shared and appreciated.3 Although the potential of storytelling for physical therapists has been recognized, no specific intervention has yet been developed.4

Storytelling has been a fundamental part of the human experience for millennia, yet it has only been recognized as a therapeutic tool by Western medicine in the past 40 years.5,6 More recently, storytelling has been used to improve psychological and physical well-being and to build more cohesive communities that appreciate diverse perspectives.4,7–9

In educational settings, stories can empower students to share experiences in a non-judgmental environment while developing important skills such as communication and attentive listening.9 Specifically in healthcare education, sharing and listening to personal stories can help healthcare professionals be better equipped to care for their patients by attuning them to their patients’ stories and journeys with illness.10–12 Storytelling events and activities prompt reflection among faculty, clinical instructors, and students, allowing the listener to gain insight into others’ experiences—ultimately fostering supportive environments and encouraging compassion and empathy.7–9

Recognizing the numerous benefits of storytelling in healthcare and education, the USC Division of Biokinesiology and Physical Therapy has hosted four annual ‘StorySlam’ events over the past five years. Our purpose in this article is to share details of our most recent StorySlam, with the hope of encouraging similar events in physical therapy education. Additionally, we seek to evaluate how this event has impacted the sense of belonging among Division members and contributed to strengthening our community.

Methods/Event Description

The Diversity, Anti-Racism, Inclusion, and Community Engagement Council of the University of Southern California Division of Biokinesiology and Physical Therapy wanted to create a space where people could come together and share their personal stories. They had been inspired by the Annals of Internal Medicine ‘Story Slam’ series, and thought “We could do that.”13 That’s how the idea of the USC StorySlam was born.

The goal of the StorySlam was simple: to give Division members a platform to share their own experiences—stories that reflected their encounters with equity, diversity, and inclusion. But the StorySlam wasn’t just about talking; it was about listening, building connections, and creating a stronger sense of community. The organizing committee wanted people to walk away feeling like they belonged to something bigger. As Spring 2023 approached, the event began to take shape. Faculty, staff, and student storytellers were excited to share their experiences in front of their peers, both in-person and virtually.

The Build-Up

Three months before the event, the organizing committee sent out a call to all faculty, staff, students, and even alumni who had participated in diversity initiatives. They invited them to participate in what would be a one-hour event, featuring seven to 10 storytellers. Each person would have just five minutes to share a personal or patient-related experience around equity, diversity, and inclusion. The organizers did not want the same types of stories; they wanted a rich mix of perspectives. So, they asked anyone interested to send in a brief synopsis of their story.

As the event drew closer, the storytellers turned in their full stories. The organizing committee gave feedback, helped with editing, and worked with each storyteller to expand or tighten up certain aspects of their story to ensure that it could be told in the time limit. They offered encouragement and support to storytellers each step of the way leading up to the event.

The Night of the Event

On the night of the event, storytellers and audience members were excited. Although it was not required for any coursework or faculty duties, many members of the Division attended the event. Those attending in person were treated to a complimentary dinner. The event started with a warm welcome, followed by a description of three community agreements: (1) Respect the personal nature of the stories; while you might take away important lessons, the stories themselves are not to be retold; (2) There will be no questions or discussions after each story; the goal is to listen, not debate or build upon the stories; and (3) Be attentive and respectful because each storyteller is about to share something personal and vulnerable.

Then, one by one, the storytellers took the stage. Each was introduced by a member of the organizing committee who shared the storyteller’s name, role in the Division, and title of their story. After each storyteller recounted their five-minute story, the organizers displayed a meaningful quote, chosen by the storyteller, giving everyone a chance to reflect. Applause filled the room and for those attending virtually, the Zoom chat filled with messages of appreciation and support. When the final story was told, the organizers closed the evening. They thanked the storytellers for their courage and vulnerability and expressed gratitude to the audience for their presence and care for each story told. One story from the 2023 StorySlam is available here in the Appendix.

What Came After

Once the storytelling was done, the organizing committee sent out a survey to everyone who attended, asking about their experience. They included seven 5-point Likert scale questions, ranging from Strongly Disagree to Strongly Agree, to gauge how well the event had met the goal. Among the questions:

  • Did people feel more connected to the community?
  • Did they gain a deeper understanding of others’ experiences?
  • Did the stories inspire them to participate in future events?

The survey also included two open-ended questions to give attendees a chance to share their thoughts more freely:

  • What they loved about the event.
  • What ideas they had for future StorySlams.

Two assessors (SJ and NDM) independently read the open-ended questions and responses to determine common themes. After they compared their findings, they worked together to resolve any differences and pulled out the key themes and the most insightful takeaways.

Results

The 2023 StorySlam event was attended by a total of 79 people, with 48 (60%) in-person and 31 (40%) remote attendees. Eight storytellers (four students, three faculty members, and one patient) shared their stories. The most common themes included: class/socioeconomics, belonging, and advocacy/social responsibility (Figure 1).

Figure 1: Themes identified in the stories presented in StorySlam 2023 along with their frequency of occurrence across stories.

The outcome survey received responses from 39 (49%) attendees, which included students, faculty, staff, and community members. Most attendees indicated agreement or strong agreement with the Likert scale items, with each item receiving an average score of greater than 4 out of 5 (Figure 2).

Figure 2: Responses to the StorySlam survey for the 2023 event. The questionnaire included seven items, shown on the y-axis here, each of which could be rated on a five-point scale ranging from “Strongly Disagree” to “Strongly Agree.” The length of each color bar represents the number of responses in that response category for that item. The total number of respondents was 38.

Among responders, 69% strongly agreed with the statement “I realize my own shared commonality with other individuals in the Division,” and 77% strongly agreed with the statement “I feel a greater sense of connection to the Division community.” Both of these factors can enhance an overall sense of belonging. A full 38 out of 39 (97%) respondents indicated that the event met their expectations.

Sample Responses

In the open-ended responses, several respondents appreciated that the storytellers spanned varied roles in the Division (students, faculty, patients), thereby allowing for a wide range of perspectives.

“I am really happy I went to listen and absorb my friends and teachers speak about their life experiences. It will help me grow as an individual and as a clinician.”

“Love the perspectives from faculty, students, community members – made this community feel richer.”

Others recognized and appreciated the strength and vulnerability required for people to tell their personal stories in front of a large group, with some attributing this to the safe space created in the room. Some respondents mentioned the event being an emotional experience for them, strengthening a feeling of community and inspiring them to tell their own stories in future events.

“I feel so grateful for being able to hear stories from our division and that of our community friends. I feel so inspired and motivated to do this next year and share my story.”

Some suggestions for this event in future years included improvement in audio quality for both in-person and online attendees, having the camera zoomed in on the speaker for those attending remotely, and increasing the frequency of this event with different themes such as love or clinical reflections.

Discussion

The StorySlam successfully provided opportunities for Division members to share and listen to a variety of stories, exposing members of our community to diverse perspectives and life experiences. There was an overwhelmingly positive response to the event, including an appreciation of the vulnerability of the storytellers and a sense that the community felt richer than participants had initially perceived. There were multiple suggestions for more events of this nature in the future.

Insights

Most of the stories in this StorySlam focused on socioeconomic class and belonging. Belonging has always been a consistent theme brought forward in the StorySlam, likely due to the prompt sent out in the invitation to share “a patient interaction, a cultural experience within the program, or a reflection that speaks to the theme of equity, diversity, and inclusion.” However, socioeconomic status had not been a common theme in the three StorySlams prior to 2023. This change could be attributed to the COVID-19 pandemic, which illustrated the disparities between how people of differing socioeconomic classes were impacted, as well as more recent concerns in society regarding the cost of college education and student loan burden after graduation. Stories that feel important to share may change over time and in different contexts, assisting us with understanding shifts in the profession and the wider culture, thereby expanding our perspectives.

The input we received from participants at this event is consistent with previous reports of the positive impact of storytelling on communities.7–9 Narrative medicine—the practice of medicine with empathy, reflection, professionalism, and trustworthiness—has long been championed as a way to improve a physician’s work with patients, other professionals, and the public.14 Although the StorySlam did not emphasize all aspects of narrative medicine, we intentionally paused between each story to give listeners time to reflect on what they heard and consider how elements of the story might challenge or reinforce their own perspectives. For some audience members, this reflection time may have allowed for empathy, resulting in attitude change and alliance building.15

Limitations

A limitation of the StorySlam is that participation of storytellers and audience members was voluntary and limited to students, educators, staff, and patients within one university’s Physical Therapy program. Additionally, the participants and audience members who chose to attend are likely those who already have an appreciation of the potential benefits of such an event. As such, the perspectives shared by this group may not be representative of the physical therapy academic and clinical community at large.

Finally, a limitation of our event survey was that it did not directly measure the event’s impact on attendees’ sense of belonging. Although two questions indirectly addressed belonging by asking about attendees’ feelings of connection and shared commonality within the Division, future surveys would benefit from including more direct questions and assessments of this construct.

Future Progress

In the future, we plan to continue hosting this annual event and will consider increasing the frequency to provide this platform to community members more often. This would provide more opportunities for those initially hesitant to share their stories to engage as well as provide more opportunities for reflection by the larger community. It may also be beneficial to provide storytelling platforms in other formats such as written stories or recorded audio stories.

Conclusion

In physical therapy practice and education, storytelling can build a strong sense of community and a supportive learning environment, where students, faculty, and staff are encouraged to share meaningful experiences with each other and learn from them. At our institution, a StorySlam has proved to be an impactful and realistic method to provide space for storytelling and achieve these benefits. These events can help facilitate an environment where diverse perspectives can be shared and reflections on these perspectives can deepen our understanding of ourselves, others, and our community.

Acknowledgment

The authors of this paper would like to thank Evan Harvey, PT, DPT for allowing us to share her story, Savior Syndrome and its Flaws, for our readers.

Savior Syndrome and Its Flaws

By Evan Harvey

Told at the 2023 USC StorySlam. Printed with permission from the author.

In many of my rotations throughout inpatient acute and rehabilitation settings I have encountered a variety of patients with varied cultures, ideals, and economic backgrounds. One specific patient interaction that will stay with me forever involves a young man who had undergone a series of unfortunate issues that resulted in a long stay in the ICU and an even longer stay on the acute floor. This gentleman was houseless and going into the evaluation I was really encouraged to be able to provide him with support for his planned discharge. In short he had a lot of weakness, severe balance deficits, and was unsafe to ambulate independently. Immediately my mind went to a wheelchair for discharge based on patient presentation and my own clinical reasoning. Following the evaluation and discussion with the patient I told him “we are going to order you a wheelchair for discharge for your safety.” He responded with the following:

“If I were to have a wheelchair out on the street where I live it makes me a target for theft, violence, and more. I need to be able to navigate the streets without a device so no one thinks I am weak and tries to hurt me.”

I was shocked and feelings of guilt and sadness washed over me. At this point I didn’t know how to best help this patient. But I understood that I had made the assumption that I knew what was best for them. In the moment, I let my CI take over the interaction and continue the conversation with this individual. The gentleman discharged the next day with a front wheeled walker per recommendation and choice of the patient. During another rotation I had a whole year later working in acute care in both Inglewood and East Los Angeles, I ran into the same conversations with individuals.

This time I had the experience to be able to go into the conversation more confidently. I specifically remember a woman who had a CVA. Her time in the hospital was running short and while she desperately needed more therapy she opted for a self discharge and was determined to leave the hospital on her own. We sat down and had a conversation about her safety returning to living on Skid Row where her permanent residence was and how she could progress herself through exercises to optimize her function as she felt she wouldn’t be able to return to therapy after leaving the hospital.

I asked her what she felt was in her capacity to do and she stated she could not perform any exercises lying down on the ground as this made her a target for sexual assault; she rarely lay on the ground and usually slept upright in a chair because of this. Together we brainstormed exercises and progressions and created a large packet that she could keep with her and utilize over time. She felt confident in these interventions and was really happy and motivated to gain her strength back because she felt included in the process of her care.

These interactions absolutely changed my mindset regarding patient treatment and plan of care and how important it is to include patients and their support system in clinical decision making. At the end of the day, we have no idea all the things patients are facing until we sit down with them and take the time to better understand.

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  9. Greenfield BH, Jensen GM, Delany CM, Mostrom E, Knab M, Jampel A. Power and promise of narrative for advancing physical therapist education and practice. Phys Ther. 2015;95(6):924-933. doi:10.2522/ptj.20140085
  10. Ingram C. Storytelling in medical education, clinical care, and clinician well-being. Arch Med Health Sci. 2021;9(2):337. doi:10.4103/amhs.amhs_289_21
  11. Haigh C, Hardy P. Tell me a story — a conceptual exploration of storytelling in healthcare education. Nurse Educ Today. 2011;31(4):408-411. doi:10.1016/j.nedt.2010.08.001
  12. Kumagai AK, Wear D. “Making Strange”: a role for the humanities in medical education. Acad Med. 2014;89(7):973-977. doi:10.1097/ACM.0000000000000269
  13. Annals of Internal Medicine: Annals Story Slam. Annals of Internal Medicine. Available at: https://www.acpjournals.org/topic/web-exclusives/annals-story-slam. Accessed September 5, 2024.
  14. Charon R. Narrative medicine: a model for empathy, reflection, profession, and trust. JAMA. 2001;286(15):1897-1902. doi:10.1001/jama.286.15.1897
  15. DeTurk S. Intercultural empathy: myth, competency, or possibility for alliance building? Commun Educ. 2001;50(4):374-384. doi:10.1080/03634520109379262

About the Author(s)

Didi Matthews, PT, DPT

Didi Matthews, PT, DPT is an Associate Professor of Clinical Physical Therapy at the USC Division of Biokinesiology and Physical Therapy, Vice Chair of Equity, Diversity, and Inclusion, and Director of the Division Institute for Excellence in Teaching. In her role as Vice Chair, she leads the Diversity, Anti-Racism, Inclusion, and Community Engagement Council which builds sustainable mechanisms, policies, and initiatives to improve equitable practices within the Division’s research, educational, and clinical practice programs. Her research aims to study and disseminate the impact of equitable policies and practices on organizational systems. She believes the humanities are essential to health care education and health equity, as they provide critical perspectives on cultural context, empathy, and social determinants of health, fostering more comprehensive and equitable care delivery.

Shreya Jain, PhD

Shreya Jain is a human movement researcher, passionate about advancing healthcare and patient outcomes through rigorous clinical research. She received her Bachelor’s in Pharmacy from BITS Pilani in India, a Master’s in Motor Learning and Control from Teachers College at Columbia University, and her PhD in Biokinesiology from the University of Southern California. She believes strongly in the transformative role that movement plays in the health and well-being of patients with movement disorders and has done extensive volunteer work with organizations such as Dance for PD and Power for Parkinson’s, helping them offer high quality programming to people living with Parkinson’s disease.

Joshua Limlingan, PT, DPT

Joshua Limlingan is a physical therapist at Rancho Los Amigos National Rehabilitation Center in Los Angeles. Joshua received both his Bachelor of Science in Human Biology and Doctorate of Physical Therapy at the University of Southern California. He is passionate about preserving and improving the quality of patient-centered care and is interested in further exploration on how shared reflection, understanding, and perspective-taking can positively impact patients, and the clinicians providing their care. He has a background working both outside of and within his profession to provide mutual aid and achieve health equity through interdisciplinary collaboration, holistic care, and community-oriented solutions.

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Running Before I Could Walk https://jhrehabredesign.ecdsdev.org/2024/11/26/running-before-i-could-walk/ Tue, 26 Nov 2024 05:42:05 +0000 https://jhrehabredesign.ecdsdev.org/?p=10910

Running Before I Could Walk

Mitchel Fenrich, PT, DPT & Corri Stuyvenberg, PT, DPT, MA & Amanda Sharp, PT, DPT, PhD

Table of Contents

International student experiences are increasingly common within health professions including physical therapy.1 Whether students are connecting to their altruistic nature or seeking to fulfill an academic requirement for service learning or clinical education, there are a variety of reasons why one may elect to engage internationally during physical therapy training. Reported benefits of international experiences include improved communication, world view, cultural humility, and desire to work in resource-limited settings after graduation.2 Much of what a student clinical experience will entail outside of the United States will depend on the location of the experience and on program-specific expectations.2 Beyond that, the human factors unique to each exchange and individual cannot be planned.

In this example, we followed an American student who elected to engage in reflection to process a challenging and novel situation in a foreign clinic. As he accounted for cultural factors and attended to the dynamic between the family and the medical center where he worked, he learned to adapt while simultaneously finding his own voice. Yet an evident dichotomy between his own uncertainty and need to be the ‘expert’ remains. This experience, one that pulled together the tangible with the intangible, is one that will live alongside the student as he transitions to his own independent practice. Following is Mitchel Fenrich’s personal account of his clinical rotation in Tanzania.

 

Arrival—and a Special Case

In early 2022, I arrived in Tanzania as an eager physical therapy student ready to engage in a clinical rotation at the Dodoma Christian Medical Center (DCMC) in Dodoma, Tanzania. Unlike my clinical experiences in the United States I was living in on-site housing and could see DCMC from my temporary home. Each day I walked the path to the physical therapy clinic while soaking in the warm sunshine and fresh air. During this early time in Tanzania, I explored the city of Dodoma, tried new foods, and adjusted to the flow of healthcare.

A few weeks into my 10-week rotation, Nuru, my clinical instructor and a Tanzanian physiotherapist, and I had the opportunity to evaluate and treat an infant we would come to believe was at high risk of having cerebral palsy. As someone with an interest in working with children, and specifically those with disabilities, the subsequent physical therapy management of this child’s case proved to be one of the most impactful parts of my experience in Tanzania. What follows is my honest reflection and recall of this experience through which I confirmed my desire to become a pediatric physical therapist.

Photo 1: Entrance, Dodoma Christian Medical Center


Photo 2: Dodoma Christian Medical Center

 

Encounter and Evaluation

This story begins when a staff member at DCMC sat across from me at lunch and told me about his daughter, Davina. She was 20 months old and was missing key developmental milestones. After this initial meeting at the cafeteria, I talked with Nuru; a plan was made for the child to be brought into the physiotherapy clinic for an evaluation. Previous notes in the electronic medical record from the pediatrician at DCMC described the infant’s full-term birth as a difficult delivery with mild/moderate birth asphyxia, as well as noting weakness of the right arm and leg. Nuru had seen the child on one occasion at age 14 months, and at that time, our co-worker’s child was scooting on her bottom on the floor to explore her environment, but had not begun standing, walking, or crawling. Nuru also noted right arm hypertonicity and disuse.

Photo 3: Nuru in one half of the physiotherapy clinic


Photo 4: View of the other half of the physiotherapy clinic

Evaluation Session

The evaluation took place a few days after my interaction with the child’s father at DCMC’s cafeteria. At this time, Davina was just a few months shy of her 2nd birthday. During the subjective portion of the evaluation, we learned that her parents were concerned she was still not standing and walking unsupported, not using her right arm/hand, and showing limitations in communication. During the objective piece of the evaluation, our relevant findings included confirmation of hypertonicity of the right arm and leg when compared to the left, no standing or walking without support, no creeping or crawling, and solely using her left hand for reaching tasks. Using pieces of the Hammersmith Infant Neurological Examination,3 Davina’s hand and arm asymmetry were clear. At rest, her right hand was in a near-fist position, while the left hand rested open. The right arm rested in a dystonic position in comparison to the left, and there was increased resistance to passive right shoulder flexion and right forearm pronation/supination when compared to the left. We were also able to complete the gross motor subdomain of the DAYC-2,4 which indicated Davina was in the 6th percentile.

As we synthesized the past medical history, current physical exam, and insights from her parents, we came to believe a high risk of cerebral palsy clinical diagnosis was warranted. Davina displayed motor dysfunction (observable hand and arm asymmetry, low score on DAYC-2,4 disuse of right hand and arm), as well as having a clinical history of a labored birth with associated impairment in oxygen and blood flow to the brain, as reported by the pediatrician. These criteria in combination allow for the clinical diagnosis of high risk of cerebral palsy to be used.5

 

Perception of Disability in Tanzania

Cerebral palsy is a heavy label. We did not want to be wrong, but this is a very critical time-period for the child—the range of 12 to 24 months. The patient is still at an age where we could maximize neuroplasticity in movement training and try to maximize motor function.

Through conversations with Nuru, I learned that if a child is born in Tanzania with a disability (eg, cerebral palsy), it can be perceived as a punishment for something negative the parents did in the past. Unfortunately, it is common for these children to be kept out of the public eye (eg, the community, school) for this reason, and it can be common for people to hide their diagnosis and to not seek the help they, or their loved one, need.6 In the United States, I had previously spent a significant amount of time at Easterseals Wisconsin Camps, an organization supporting and empowering people with disabilities across the lifespan. This experience allowed me to connect with and befriend many people living with autism, Down Syndrome, cerebral palsy, spina bifida, and other conditions, offering me insight and understanding into people’s lived experiences with disability. It allowed me to realize how powerful and dehumanizing the stigma around disability can be, even in the United States. I frequently heard about people’s experiences of being excluded, misunderstood, teased, and the lack of support, leading individuals to feel isolated, broken, or unwanted.

A Key Point of Cultural Sensitivity

At one point during the evaluation session, I directly used the phrase “cerebral palsy” while talking with Nuru about our findings. I didn’t realize it at the time, but after the evaluation was over, Nuru told me the parents’ expressions changed and their faces fell when I used those words. This prompted a conversation between Nuru and me around views of disability. She recommended communicating the signs, symptoms, and observed clinical presentation when talking with the parents instead of directly using the term. This became even more important when her parents shared that they were being told by others to take Davina to another town to have surgery on the dystonically-positioned right elbow. Nuru and I educated the parents about how we believed the positioning and hypertonicity of the elbow was neurologic in nature, not orthopedic, and that we did not believe that surgery was indicated. This was also a more appropriate approach, as the pediatrician ought to be the one to formally establish a neurological diagnosis such as cerebral palsy.

With all of this in mind, I was incredibly impressed by how open and supportive her parents were. Their support and love for their child was unwavering, and they sought help for her in any ways that they could. They wanted to better understand her condition, her needs, and any potential developmental considerations, as well as to connect her with whatever resources were available. Nonetheless, I did get a firsthand glimpse into the stigma surrounding cerebral palsy and disability in Tanzania.

 

Treatment Plan

Through conversations with both Davina’s parents, as well as Nuru, we progressed treatment moving toward the following goals: 1) stand independently; 2) walk independently; 3) use the right hand/arm in reaching tasks, as well as other functional activities. Early Intervention for Children Aged 0 to 2 Years with or at High Risk of Cerebral Palsy,7 which is an international clinical practice guideline based on systematic reviews, included the following recommendations:

  • Begin intervention at the time of suspected diagnosis to harness neuroplasticity through specific training.
  • Implement task-specific motor training with parental coaching to structure practice beyond scheduled therapy sessions (for adequate dosing).
  • Implement bimanual and constraint-induced movement therapy as soon as unilateral cerebral palsy is suspected, since the benefits outweigh the risk of harm from unused neuroplasticity windows and false-positive diagnoses.7

Treatment Sessions

Over the next six weeks, Nuru and I worked to apply these recommendations through 6 treatment sessions, both in-clinic and in-home,8 with the hopes of increasing her independence with mobility, access to her environment (namely her home), and participation in meaningful play. Interventions used to work toward our goals included:

  • Helping the child into a quadruped position to promote weight bearing through the right hand/arm.
  • Encouraging creeping on hands and knees to give the child another option to navigate her environment (in addition to butt scooting).
  • Setting up functional tasks to promote bimanual play and reaching with the right hand/arm.
  • Setting tasks to promote standing with decreasing levels of support.
  • Providing gait training with a four-wheeled walker with a seat.

Education

Education of the parents was critical, as Davina would need to frequently practice targeted skills in her natural environment to maximally influence both brain and body development, and the parents were eager to implement home programming.9,10 This kind of invested family support was not unusual. In fact, I observed families in Tanzania to be much quicker to get involved with the care of their loved ones than families in the United States. I realized the importance of caregiver education because both medical and rehabilitative care is not easily accessible for many in the country, so families were eager to learn to carry out the rehabilitation strategies at home.

For example, when Nuru and I were working with a 71-year-old woman, it would not be uncommon for her daughter, son-in-law, and granddaughter to also be at the appointment. Family members and friends who joined their loved ones were invested, asking questions, getting involved physically, and providing emotional encouragement and support to their family member. In the beginning of the clinical experience, I was intimidated by all these family members and friends watching me, mostly due to my own insecurities as a developing clinician. After a while, I realized this was not about me at all, but about them and their interest and engagement in their loved one’s care.

Motivation and Creativity

Davina displayed significant progress toward all her goals over the 6 treatment sessions. She was very motivated to begin walking, and quickly caught on to using the four-wheeled walker like a gait trainer. Because she really seemed to enjoy the new-found independence in upright exploration, her family had a child-sized walker built for her (Photo 5). Through observations in our treatment sessions and conversations with her parents, Nuru and I also thought Davina would benefit from ankle-foot orthoses (AFOs) for added support with standing and walking. Her parents were able to obtain a set of AFOs at a nearby hospital (Photo 6). She also displayed significantly-improved tolerance to bearing weight through her right hand/arm, and her parents did a great job motivating her to play with toys with both hands (Photos 9, 10).

 

Results

By the time it was time for me to leave the country, Davina was able to play using both hands, stand independently, and take 3 to 5 steps unsupported and independently. This progress was very exciting to her parents, as well as for Nuru and me. In the months following my clinical experience, I remained in communication with the family and received periodic updates and videos. About 6 months after I left DCMC, I received videos of Davina independently transitioning from the floor to standing, walking around her living room, and kicking a ball.

Photo 5: Davina’s walker


Photo 6: Davina standing with bilateral AFOs donned

Photo 7: Parallel bars at the physiotherapy clinic


Photo 8: Davina her mother, Winnie, and Mitchel during a treatment session

Photo 9: Davina engages in bimanual play during a treatment session


Photo 10: Davina sits unsupported during a treatment session

 

Reflections on the Sociocultural Aspects of the Clinical Experience

From the moment I landed in Tanzania, I quickly came to realize I didn’t have the option to lean on a group of peers for support. I felt like an outsider in a way I never have in the United States. For the first few weeks, I felt myself acting cautiously, and in a calculated and guarded way that I never have before. I felt a visceral, deep-seated feeling of being unsettled and ungrounded. My sense of belonging had been challenged. This had nothing to do with the people at DCMC, as they were nothing but welcoming and quick to help me feel included and supported. As I settled in, I appreciated being welcomed into the hospital, and experiencing the hospital staff turn from strangers to co-workers to friends. I grew to understand and appreciate the graciousness, trust, and friendships I developed during my time there.

However, the way in which I was treated during my clinical experience caused me to reflect on the way certain aspects of my identity preceded me. More specifically, my identity as a white, American male with blonde hair, blue eyes, and a Midwestern accent seemed to override my identity as a student. This assignment of status somehow meant I must know things, whether I possessed the presumed knowledge or not. Nuru would frequently turn to me and ask for my thoughts and opinions on a patient through the lens of a colleague, vs. a clinical instructor quizzing their student. I would also get asked questions by physicians and nurses in a manner I wasn’t accustomed to during my clinical rotations in the United States.

It was odd to simultaneously feel internal waves of uncertainty, self-doubt, and being overwhelmed as I worked to create my identity as a clinician, while externally being expected to share my thoughts and opinions at a level I felt I hadn’t yet earned. It felt, at times, like my opinion was valued more because I was a white, American male than based on the knowledge I possessed or the merits I carried. Because I was coming from America, I felt an unspoken expectation to bring new knowledge or a better way of doing things. This position of status/power was not one I sought out, but one I was granted and that preceded me. The power dynamics with respect to certain aspects of identity: male/female, white/black, American/Tanzanian, and student/professional were constantly on my mind. I was aware of the historical context of the white “savior” role in Africa and did not want to come across this way.

Taking Responsibility

This experience required me to take ownership and responsibility for my thoughts and actions. It also encouraged me to remain aware of the power dynamics around me, and to be constantly assessing and understanding my place in them. In times where I didn’t know the answer, I would fall back on the current evidence and the ‘first, do no harm’ mindset.

One part of the clinical experience at DCMC I really enjoyed was my relationship with Nuru, my clinical instructor. Nuru let me do a lot of hands-on work, while she did a lot of the communicating with and interpreting between me and patients—as a majority spoke Swahili, and I did not speak the language. I also needed a lot of guidance adapting to cultural norms that were unfamiliar to me. Both Nuru and other Tanzanians were very gracious when I made mistakes, understanding there was no ill intent behind them. When working with a patient, if I sensed surprise or confusion among the patient or their families, I learned to seek clarification and ameliorate confusion or distress. By paying attention to social cues and maintaining a posture of humility, I learned I could adapt and quickly correct culturally-insensitive behaviors.

Insights for Future Practice

I believe I will be able to translate this experience to my future clinical practice. When working with minority and marginalized populations, I will have a better appreciation of what it feels like to have a shaken sense of belonging, and the challenges of participating in a system that one doesn’t fully understand nor feel included within. I will also bring my understanding of the unearned status of authority that accompanies my identity as a white male in a clinical setting.

 

Final Thoughts

Leaving Tanzania, and specifically DCMC, was extremely bittersweet. On the one hand, I was excited to return home to see family and friends, and to be one step closer to graduating physical therapy school. On the other hand, I didn’t want to leave the people with whom I had developed relationships over the past several months. As someone who is very relationship-driven, the thought of being able to interact with my newfound Tanzanian friends one day, only to be 8,000+ miles away from them the next day, was difficult. I soothed my sense of loss with a deep self- assurance that I would return someday. This would not be the last time I intended to see my friends in Dodoma. I shared many goodbyes, and frequently settled on the departure as a ‘see you later’, to both the people and the country.

The success and meaningfulness of my clinical experience wouldn’t have been possible without the support and kindness from a multitude of people: to Nuru, for helping me feel settled, supported, and taken care of as a human, while also guiding and empowering me as a clinician; to Winnie and Dickson, Davina’s parents, for trusting me and allowing me to have my first hands-on experience working with a child through the lens of a physical therapy clinician (in training); to the entire DCMC staff, for allowing me to integrate myself into their hospital team and going out of their way to make sure I felt welcome. Thank you, Tanzania, for the richness you provided in such a short period of time.

Photo 11: Mitchel Fenrich, SPT and Nuru Mohamed, PT


Photo 12: Davina, her parents, Dickson and Winnie, Nuru, and Mitchel

References

  1. Pechak CM, Black JD. Proposed guidelines for international clinical education in US-based physical therapist education programs: results of a focus group and Delphi Study. Phys Ther. 2014;94(4):523-533.
  2. Hartman J, Magnusson D. International experiences in physical therapist education: a descriptive study. J Phys Ther Educ. 2021;35(1):75-82.
  3. Maitre NL, Chorna O, Romeo DM, Guzzetta A. Implementation of the Hammersmith Infant Neurological Examination in a High-Risk Infant Follow-Up Program. Pediatr Neurol. 2016;65:31-38.
  4. Voress JK, Maddox T. Developmental Assessment of Young Children – Second Edition: DAYC-2. Austin, TX: Pro-ed.; 2014.
  5. Novak I, Morgan C, Adde L, et al. Early, accurate diagnosis and early intervention in cerebral palsy. JAMA Pediatr. 2017;171(9):897.
  6. Zuurmond M, Seeley J, Nyant GG, et al. Exploring caregiver experiences of stigma in Ghana: they insult me because of my child. Disabil Soc. 2022;37(5):827-848.
  7. Morgan C, Fetters L, Adde L, et al. Early intervention for children aged 0 to 2 years with or at high risk of cerebral palsy. JAMA Pediatr. 2021;175(8):846-858.
  8. Gannotti ME, Christy JB, Heathcock JC, Kolobe THA. A Path Model for evaluating dosing parameters for children with cerebral palsy. Phys Ther. 2014;94(3):411-
  9. Kolb B, Muhammad Harnessing the power of neuroplasticity for intervention. Frontiers Hum Neurosci. 2014;8:377.
  10. Nithianantharajah J, Hannan AJ. Enriched environments, experience-dependent plasticity and disorders of the nervous system. Nat Rev Neurosci. 2006;7(9):697-709.

About the Author(s)

Mitchel Fenrich, PT, DPT

Mitchel Fenrich is a pediatric-based physical therapist where he primarily works with children with autism. He is a 2022 graduate of the University of Minnesota Physical Therapy Program where he now regularly serves as a lab assistant in the Pediatric course series. He holds a Bachelor of Science degree and a certificate in Global Health from the University of Wisconsin. During his physical therapy training, Mitchel spent time working with a local clinician in Dodoma, Tanzania. In his spare time Mitchel enjoys spending time with family and in the outdoors.

Corri Stuyvenberg, PT, DPT, MA

Corri Stuyvenberg is a Board-Certified Clinical Specialist in Pediatric Physical Therapy with over 25 years as an early intervention, multi-disciplinary team member. She completed her Certificate in Infant and Early Childhood Mental Health and has received her Endorsement® in Infant Mental Health. She is an Assistant Professor in the Division Physical Therapy at the University of Minnesota Medical School, primarily instructing pediatric physical therapy coursework. Corri is also a PhD Candidate in Rehabilitation Science at the University of Minnesota. Her research explores associations between qualities of parent-infant relationships and infant motor development in both term and pre-term infants.

Amanda Sharp, PT, DPT, PhD

Dr. Sharp is the Associate Program Director, Director of Student Affairs, and an Associate Professor in the Division of Physical Therapy at the University of Minnesota. There, she directs a series of courses related to professional development with an emphasis on historical and contemporary issues related to practice. She emphasizes self-awareness, reflection, and advocacy, striving to ensure students consider the complex role of clinical practice, seeing beyond a diagnosis or treatment plan to truly engage with their clients. Dr. Sharp is an educational researcher with a PhD in Higher Education from the University of Minnesota. Her research centers on disability diversity in physical therapy education and she is a regular consultant to students, colleagues, and other professionals on ways to support disability diverse learners in healthcare education. She further retains an active role as a research collaborator with a team focused on the long-term development of clinical educators.

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Playful Practices: Reflections on Teaching About Narrative Roleplaying Games in Care Contexts https://jhrehabredesign.ecdsdev.org/2024/09/23/playful-practices-reflections-on-teaching-about-narrative-roleplaying-games-in-care-contexts/ Mon, 23 Sep 2024 21:58:23 +0000 https://jhrehabredesign.ecdsdev.org/?p=10687

Playful Practices: Reflections on Teaching About Narrative Roleplaying Games in Care Contexts

Santiago Barugel & Marileen La Haije

Table of Contents

Introduction

He-Man wakes up on a beach, and his head and body ache. The last thing he remembers is that his ship had sunk the night before in a storm while he was escaping from his kingdom and the dragons. When he opens his eyes, the first thing he sees is the face of a child with leaves in his hair who, in an unknown language, utters a spell that heals his wounds from the shipwreck.1

This opening scene of a six-month-long fictional narrative features He-Man, an orphaned prince, Sombra, a wizard boy with a pet wolf, and other fantastic characters who travel across continents, fight archdruids, and find love. Part of a fantasy narrative roleplaying game inspired by Dungeons & Dragons, these memorable characters were created and performed during the pandemic (2020-2021) by teenage boys hospitalized in the Dr. C. Tobar García Children’s Hospital for Mental Health in Buenos Aires, Argentina. Most of the children who participated in this narrative game did not know how to read or write, due to the situations of social vulnerability (poverty, violence, abuse) they face. Still, they were able to generate these stories, making use of oral, visual, and non-verbal languages and behaviors.

Children and adolescents who temporarily reside in the Tobar García Hospital or other mental health facilities in Argentina often have their lives on hold. They are waiting to resume school activities, rebuild family and community ties, and enjoy cultural possibilities and natural spaces in the city. Their life stories are mobilized only by what the hospital can offer within the limits of the scarce resources.

Through narrative roleplaying games, the recreation team (part of the in-patient care facilities at the Tobar García Hospital) seeks to foster spaces for the co-creation of memorable narratives during hospitalization. These narrative games are part of a diverse set of playful practices proposed by the recreation team, as a result of exploring and putting into practice the individual and collective interests of the children who go through hospitalization. By doing so, the team aims to foster ways to relate with each other by sharing the pleasure of playing.

An Interactive Workshop Experience

In this Perspective, we focus on an interactive workshop in which we sought to inform and inspire students and care practitioners on the use of narrative roleplaying games in diverse contexts of care and rehabilitation.

First, we briefly explain the workings of narrative roleplaying games, including Dungeons & Dragons (D&D). Then, we present a short literature review on how and why these types of games have been used in care settings, focusing particularly on D&D experiences. Then, we explain our workshop design, which is based on these research findings. In the next section, we discuss the workshop outcomes, including a selection of creations by the participants as a result of the narrative roleplaying game we performed during the workshop.

Finally, we reflect on our learning experiences together with the students and care practitioners who were part of the workshop. These reflections will hopefully invite caregivers, patients, experienced experts, teachers, students, and researchers to think through the possibilities for playful practices of collaborative storytelling in the different contexts of care with which they are engaged.

 

Dungeons & Dragons and Narrative Roleplaying Games

Dungeons & Dragons is a fantasy roleplaying game involving several players. One person performs the role of the ‘master’ or coordinator, the main narrator who coordinates the collective story. The other players create and enact their own characters and their storylines. These characters can freely choose their desired actions: for example, to attack a creature, to win a discussion, to play a prank. They roll the dice with the aim to get a score that is in line with the difficulty of their desired actions. Depending on the score they get with the dice (success or failure), the ‘master’ or coordinator describes the effects of their actions. For example, if after deciding to attack a creature, the player rolls a 1 (the lowest score), the described outcome might be that they fail to attack the opponent due to an unfortunate fall. However, if they roll a 20 (the maximum score), the described outcome might be that they successfully defeat the opponent. These are the basic rules and coordinates of the game, which are explained in detail in the D&D manuals.

Beyond these rules and coordinates, what counts when playing Dungeons & Dragons or any other narrative roleplaying game is the creative process of collaborative storytelling, the creation of characters, and a certain amount of luck with the dice. Taking into account these basic ingredients, the development of a narrative roleplaying game is accessible and possible in diverse settings.

 

Literature Review

Highlighting the increasing demand for Dungeons & Dragons in the context of the pandemic, Ian S. Baker and colleagues provide an informative, up-to-date overview of studies on the mental health benefits of roleplaying games in clinical and non-clinical settings.2 One finding from this overview was based on a study with adult participants performing D&D in a therapeutic setting, in which Matthew S. Abbott and co-authors observe that the “participants described increased confidence in social situations, particularly with boundaries or making mistakes.” Moreover, the skills they learned and practiced during the game “helped them with interpersonal issues and conflicts they had in their lives.”3

The positive impacts of playing roleplaying games for the development of personal and social skills is also stressed by Rosselet and Stauffer in their study on the use of these games with gifted children. Roleplaying games, they argue, are “an effective way of intervening with gifted children and adolescents to improve their intra- and interpersonal skills,” including creativity, self-awareness, decision-making, collaboration, and communication skills. These authors also highlight the importance of training care practitioners to develop and deliver support through intra- and interpersonal skills within the setting of the roleplaying game, as well as facilitate the children’s ability to translate these skills outside of the game setting.4

 

Workshop Design

The rationale of our workshop design is based on the aforementioned research findings on the use of narrative roleplaying games in care settings. The workshop was co-designed by the two authors of this paper. Santiago Barugel is part of the recreation team at the Tobar García Hospital, where he coordinates narrative roleplaying games and other playful practices, including the story featuring He-Man and Sombra quoted at the beginning of this article. Marileen La Haije analyzed a selection of episodes from the narrative roleplaying games performed at the Tobar García Hospital for her research on Latin American arts-based practices that promote the human rights of people who experience mental suffering.

We were invited to provide a guest workshop as part of the Master Course ‘Literature and Care’ coordinated by Zoë Ghyselinck and Jürgen Pieters (Ghent University, 2023). This course targets literary students who seek to put into practice their literature expertise in specific care settings (eg, palliative care centers, psychiatric institutions), as well as care practitioners (eg, therapists, social workers) who want to gain new knowledge and skills from the field of literary studies with the aim to enhance their care practices.

The key objective of our workshop was to foster exchanges of ideas, experiences, and practical tools with students and care practitioners on how to integrate the use of narrative roleplaying games in diverse care settings. The workshop was based on the idea that the best way to learn how to develop playful practices in care settings is through practice-based learning: by playing. That is, we proposed a series of game-based exercises with the workshop participants, including a narrative roleplaying game. In this way, we aimed to encourage participants to engage in the creative processes they could carry out in their own care environments.

 

Workshop Outcomes

With the aim to foster creative production as a starting point for playful practices of collaborative storytelling, we proposed a narrative roleplaying game called ‘Birds-eye View.’ We asked the participants to close their eyes, listen and imagine:

We would like to know what kind of bird you would be if you could be a bird. How big would you be? Would you be colorful? How high would you fly? What do you see around you? How do you imagine your voice? How would you pursue love? Are there any risks or dangers in your environment? If you could think of some of those things, try to imagine something that happens to you being a bird.

We gave them some time to write a short story about an episode from their imagined life as a bird, after which we collectively read and discussed a selection of these pieces. The interrelations and tensions between nature and human presence was one of the recurrent topics we addressed. Some significant examples:

Penguin Story
I, a penguin, competed in the national ice sliding contests at the South Pole. I slid so hard that I went out of the curve and landed in the sea. There was a sea lion trying to eat me, so I swam away. I thought I saw land so I jumped out of the water right into a boat belonging to a National Geographic team. Six months later, David Attenborough told about my adventures on television.

Crow Story
The crow flies through the city. It watches people through the windows of their homes. She longingly stares at all the shimmering jewels around their necks and croaks in frustration. Her stomach rumbles, she flies away in a fit of anger, mad that she cannot find a scrap of bread and suddenly she finds herself lost in a sea of grass fields. Some are fresh and green while others are desolate and dying. Never before had she left the city and seen a place where the air is clean, the skies are blue and there are songs of other birds she never heard before. She finds herself looking at the city with its black smoke, familiar windows and thinks by herself: I want to go back.

Magpie Story
I am a magpie, colored black and white. My mother thinks her parents, who are dead, have become magpies. My mother is not crazy, but I grant her this little craziness (being ‘loco’). As a bird, a magpie, I do not want to fly that high, or that far away from human society, from the town I grew up. I would like to see what people are doing in this town, on the land I know, in the fields that surround them, and at the port. I think I could feel what they are up to, what they think and know, desire and feel. I would like to be their black ink on white paper-magpie, to spread their stories around, and to mingle them with my own.

As we discovered during the workshop, this collection of individual stories could be an excellent starting point for a creative process of collaborative storytelling in a group setting: all about birds from around the world (from crows connected to urban spaces to penguins in the Arctic) dealing, in diverse ways, with human presence.

 

Reflections

In what follows, we reflect on two key learning experiences we shared with the students and care practitioners who were part of the workshop:

  1. While collectively reading the narrative pieces by the workshop participants, we explored possible interactions between the stories, laying the foundation for a bird-based roleplaying game. This is an important lesson we learned: When introducing playful practices of collaborative storytelling in contexts of care, try to look for common grounds, topics, and interests, without losing sight of the individual features, perspectives, and poetics of each personal story.
  2. We confirmed that starting from a position of enjoyment is how we can achieve true involvement in storytelling and the co-production of shared stories. Narrative games involve us (caregivers, patients, experienced experts, teachers, students, researchers…) as subjects: subjects who (wish to) play, imagine, create stories, listen to, and interact with the stories of others. In fact, the group discussions after the ‘Birds-eye View’ exercise featured important reflections by the participants on their own engagement with practices of shared reading and storytelling in diverse care settings, as well as the joy, fear, and other strengths and challenges they experienced as caring readers and storytellers.

 

Conclusion

We hope that the experiences shared in this Perspective help caregivers, patients, experienced experts, teachers, students, researchers, and others to reflect on learning experiences through creative processes, inspiring and fueling the co-creation of memorable stories in care contexts.

We propose that playful practices of collaborative storytelling represent a culmination of the creative process that can initiate dialogues and encounters among individuals, starting from something unique and growing in a supportive, collective manner. The future of this creative process will draw on new experiences in other care contexts and contribute to the co-production of knowledge on the use of narrative roleplaying games in clinical and non-clinical settings.

References

  1. Barugel S. Juegos de rol, espacios creativos para nuevas narrativas. PSP Tobar Sobre Infancias y Adolescencias. 2022;5. Available at: https://issuu.com/juanmabf/docs/revista_5. Accessed 12-8-2024.
  2. Baker IS, Turner IJ, Kotera Y. Role-play games (RPGs) for mental health (why not?): roll for initiative. Int J Mental Health Addict. 2023;21:3901–3909. https://doi.org/10.1007/s11469-022-00832-y
  3. Abbott MS, Stauss KA, Burnett AF. Table-top role-playing games as a therapeutic intervention with adults to increase social connectedness. Soc Work Groups. 2022;45(1):16–31. https://doi.org/10.1080/01609513.2021.1932014
  4. Rosselet JG, Stauffer SD. Using group role-playing games with gifted children and adolescents: a psychosocial intervention model. Internat J Play Ther. 2013;22(4):173-192. https://doi.org/10.1037/a0034557

About the Author(s)

Santiago Barugel

Santiago Barugel is part of the Recreation Team of the Dr. Carolina Tobar García children’s hospital for mental health in Buenos Aires (Argentina), with more than 15 years of work experience in the public healthcare system in contexts of social vulnerability and mental health with children and teenagers. He has been teaching an advanced seminar on recreation and health at the Institute of Recreation and Free Time (ISTLyR) in Buenos Aires since 2020. He educates specialists in group processes addressing complex issues through play and arts-based practices.

Marileen La Haije

Marileen La Haije is assistant professor of Hispanic Cultural Studies at the Department of Modern Languages and Cultures, Radboud University Nijmegen (Netherlands). Her research focuses on arts-based practices in Latin America that seek to promote the human rights of people who experience mental suffering. As part of this research, she is particularly interested in narrative roleplaying games and other arts-based practices of storytelling that seek to promote the right to play for children in vulnerable contexts.

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Through the Lens of Positive Aging https://jhrehabredesign.ecdsdev.org/2024/03/15/through-the-lens-of-positive-aging/ Fri, 15 Mar 2024 14:59:31 +0000 https://jhrehabredesign.ecdsdev.org/?p=10221

Through the Lens of Positive Aging

David W. M. Taylor, PT, DPT & Leslie F. Taylor, PT, PhD, MS & N. Beth Collier, PT, DPT, EdD & Susan W. Miller, B.S. Pharm, PharmD

Table of Contents

Introduction

The number of older adults seeking quality healthcare continues to increase in the United States and globally.1 Contemporary professional health sciences education should prepare future providers to meet this need using evidence-based approaches in didactic and experiential learning experiences that mitigate barriers to care and promote optimal outcomes. The need for competent healthcare providers to provide quality care for older adults (persons > 65 years of age) is not new, and emphasis on the care of older adults varies across health sciences education programs and disciplines.2,3 This brief report will describe a humanities-based Interprofessional Education (IPE) activity intended to support health professions students’ abilities to think about and see older adults as people first, not patients. Promoting students’ empathy toward older adults and contemplating ageism in a safe space were additional considerations.

Age-Friendly Health Systems and Care

Quality healthcare for older adults is complex and requires a competent and engaged interprofessional team.3 To address this need, the “age-friendly health system” initiative and “4Ms” framework were developed by the John A. Hartford Foundation and Institute for Healthcare Improvement (IHI), in partnership with the Catholic Health Association of the United States.4 IHI defines age-friendly care as healthcare that focuses on an older person’s specific needs and wants. This evidence-based framework considers a set of essential elements known as the 4Ms in each healthcare encounter to enhance the older adult’s quality of life.4 The initiative seeks to better meet the healthcare needs of an aging society across settings where healthcare is delivered. Central to the initiative is that value is delivered to patients, families, caregivers, healthcare professionals, and systems.

The 4Ms Framework

Provision of age-friendly care requires consideration of the 4Ms framework at each healthcare encounter:

  • What Matters
  • Medication
  • Mentation (now Mind)
  • Mobility

 

 

 

 

 

 

What Matters is to know and align care with each older adult’s specific health outcome goals and care preferences including, but not limited to, end-of-life care, and across settings of care.

Medication, if medications are necessary, includes using Age-Friendly medications that do not interfere with What Matters, Mentation (Mind), or Mobility.

Mind (Mentation) focuses on the prevention, treatment, and management of depression, dementia, and delirium across settings of care.

Mobility ensures that older adults move safely every day in order to maintain function and do What Matters.

Adoption and application of the evidence-based 4Ms framework and the age-friendly health system initiative show beneficial outcomes for older adults, their families, care delivery systems, and providers. Preparation for practice in an age-friendly health system as a member of the interprofessional team necessitates introduction of age-friendly care and the 4Ms in health professions education. Awareness of modifiable barriers to the delivery of age-friendly care should also be addressed, such as ageism and reduced empathy in healthcare.

This project endeavored to apply the 4Ms framework to an IPE activity using a health humanities approach.

Addressing Ageism

Ageism is stereotyping, prejudice, and discrimination against individuals, groups, or ourselves based on age.5 It is a paradoxical construct, in that younger people may discriminate against their future selves.6 Ageism can take many forms, including prejudicial attitudes, discriminatory practices, or institutional policies, laws, rules, and practices that perpetuate stereotypical beliefs and disadvantage individuals because of their age.7 Other types of discrimination interact with ageism, including ableism, sexism, and racism, compounding disadvantage for older persons and compromising their health and well-being.8

According to the World Health Organization (WHO) Global Report on Ageism, one in two people are ageist against older people. Ageism results in negative consequences across multiple sectors of society including the workplace, media, the legal system, and healthcare.8 Risk factors associated with ageism in healthcare include higher rates of illness, lower life expectancy, poverty, and higher healthcare spending5,9 Individuals with ageist beliefs, decisions, or actions may or may not be conscious of their own biases. Everyone has implicit biases that occur automatically as the brain makes judgments based on past experiences, current concerns, education, and background.10

A systematic review from 2015 showed at least moderate levels of implicit bias for most healthcare providers.11 Healthcare providers may have an implicit bias against older adults due, in part, to the presumed increased frequency and complexity of providing care.12 Ageism in healthcare can have significant negative effects on the quality of life experienced by older adults.13,14 Implementation of effective interventions aimed at reducing or preventing ageism toward older adults, including addressing policies and laws, education, and intergenerational contact, support the delivery of age-friendly healthcare.14

Strategies using educational interventions across all levels of education have been shown to support empathy and mitigate prejudice and discrimination. Intergenerational contact interventions may be the most effective for reducing ageism against older people by fostering positive attitudes towards ageing, improving empathy between age groups, facilitating greater ease in being with older people, and decreasing younger persons’ anxiety about their own aging.8

Encouraging Empathy

Empathy is the ability to connect with another person’s emotions and to accurately perceive or understand their perspective. Empathy is the key to understanding What Matters to the patient and other members of the interprofessional team.15 Improved patient outcomes are reported in clinicians with higher levels of empathy.16,17

Habits of the Heart. Habits of the heart are those involving professional ethical and moral responsibilities, such as empathy, and are one of three apprenticeships of professional education (habits of the head, hands, and heart).18

Visual Art Instruction. A 2019 narrative review of visual art instruction in medical education identified five focus domains: observation and diagnosis, empathy, team building/communication, wellness/resilience, and cultural sensitivity.13 These focus-domains align with the provision of age-friendly healthcare and the application of the 4Ms. Incorporating health humanities into age-friendly healthcare learning experiences may enhance student preparation and provide opportunities to develop habits of the heart, such as empathy, to better serve older adults.

Evidence-based Initiatives. Evidence-based initiatives, such as the 4Ms framework—intended to enhance the quality of healthcare provided to older adults by explicitly supporting What Matters most—should be included in professional training, including exploration and assessment of their utility to develop habits of the heart.

We contend that the use of health humanities with application of the 4Ms framework may enhance development of habits of the heart in health sciences students and work to address ageism and promote empathic awareness. Following is a description of an activity conducted by our team to address this goal.

Storytelling Through Photographs: the Pilot Project

A visual-arts health humanities interprofessional education (IPE) activity was developed using the 4Ms framework through health professions students’ original photographs of the lived experience of older adults. The goals of the activity were to: (1) develop students’ awareness of the 4Ms framework for age-friendly healthcare; (2) promote students’ empathy toward older adults; (3) provide an opportunity for students to consider personal ageist thoughts and perceptions in a safe space.

This pilot project utilized education and intergenerational contact, specifically a variation of storytelling through photographs, to address the goals of the activity.19 The modality of photography was chosen for this project based on support for use of visual arts in enhancing empathy in health professions students, ease of submission, and effective use of participant time. This brief report includes a sample of the photographs used in the IPE activity, student photographers’ narratives of alignment with the 4Ms framework, and lessons learned from implementing the activity. The full description of the IPE activity is being reported separately.

Methods of Instruction

Volunteer student participants (n=33; mean age of 25.7 years; age range 21-45) were recruited from five graduate health professions programs at one university, including clinical psychology (n= 14), pharmacy (n=4), physician assistant (n=3), and physical therapy (n=12). Students were introduced to the age-friendly healthcare initiative and the 4Ms framework at the initial session and provided informed consent.

Students were instructed to take and submit an original digital photograph of the lived experience of an older adult and encouraged to take photographs outside of healthcare settings. A brief narrative reflection on why they took the photograph and how it demonstrated alignment with age-friendly care and the 4Ms accompanied each photograph. The students had four weeks from the initial session to submit the photograph and narrative. A selection of photographs was used in a group IPE activity six weeks after the introductory session.

Photographs in this report are included based on two criteria: (1) the subject(s) in the photographs provided signed consent for the use of the photographs; (2) the student photographer provided a narrative reflection.

Photos and Reflections

The following photographs include the complete reflections and identify the professional disciplines of the student photographers. The narratives reflect the student photographers’ perceived representation of the 4Ms, which are bolded. The authors provided the photograph titles.

Figure 1. Walking Through Life (Pharmacy)

“This picture means many things to me, it shows being healthy, Mobility, and love. Every day the subjects go for a walk around their yard and I think it’s a great picture to represent Mobility. The couple in the photograph have been together for 71 years and still make time to go for walks together.”

Figure 2. The Solver (Clinical Psychology)

“This is a photo of my grandmother working on a puzzle and I think it relates to Mentation (Mind). The activity requires her focus and provides a mental challenge to solve.”

Figure 3. The Swimmer (Physical Therapy)

“The individual represented in the photograph is a 94-year-old retired pediatrician. She attends the gym daily to swim and use the sauna and loves swimming and socializing with her friends at the pool. She always has a smile on her face and we talk each time we see each other. She is a joyous friend to have and I was genuinely shocked when I learned her age. She is everything I could hope to be at her age and so much more.”

Figure 4. The Hiker (Clinical Psychology)

“The Mobility “M” best represents my photo. The individual is physically active, as shown by her happily walking her dog outside on a trail. I would also argue that this activity relates to the Mentation (Mind) “M” by being a part of nature as a stimulating activity. That being said, the physical activity involved does seem to be the overarching symbol here.”

Figure 5. The Boxer (Physical Therapy)

“This photograph depicts a man in his 70s who enjoys boxing. Despite the progressive condition that limits his Mobility and strength, he has worked hard to maintain his range of motion and muscular endurance so that he can continue to perform activities of daily living without being completely dependent on others. One way he chooses to stay active every week is by attending boxing classes with his friends at LDBF Boxing, where he has been a proud Gladiator for many years. He takes Medications for his condition and continues to have limitations with balance, strength, and coordination. However, he is always alert and excited for the chance to box and put any frustrations onto the bag. This photograph represents the aspect of his physical fitness that is the most important to him: Mobility. Although he uses a rolling walker to get around and struggles with the loss of balance while walking, boxing allows him the support of the bag for balance while working on Mobility, endurance, power, and self-efficacy.”

Figure 6. The Teacher (Physical Therapy)

“I believe that Mobility is most represented because the subject described how teaching water aerobics has allowed her to be more active and live a more fulfilling life.”

Figure 7. Art Appreciation (Clinical Psychology)

“The photograph was taken at a book release event at the Black Art In America Museum, located in East Point, GA. Attendees were able to meet the authors of the book, “I Wish My Dad: The Power of Vulnerable Conversations between Fathers and Sons” and enjoy a Black art exhibition. The individual photographed engaged in conversation about the importance of mental health (Mentation (Mind)) in the black community with me after learning I am a doctoral student.”

Figure 8. Generations (Clinical Psychology)

“The M present in the uploaded picture is What Matters. The picture shows a grandparent with his grandchild. It is an essential bond that has to be created using all the other Ms. It’s important to be healthy and mobile to spend time with a young one. In the picture, everyone seems happy and that clearly shows What Matters.”

Figure 9. Together (Physical Therapy)

What Matters: In this photo, you can see that family togetherness matters. This is a photo of my mother, aunt, and grandmother. They are all together because my grandmother had her hip replaced. You can also see the cross necklace on my aunt, indicating that religious faith matters to her. Medication: It is very hard to see, but my grandmother is in a hospital gown in a hospital room, due to her recent THA. While Medication is not obvious, she was on medicine following her surgery. Mentation (Mind): This is not quite as obvious in the picture. You can tell, however, that each person in the photo was cognitively aware enough to either recognize that it was a photo and smile, as well as understand the verbal, to smile and look at the camera. My mother is also cognitively aware enough that she can work her phone to take a nice photo. Mobility: While my grandmother is sitting, you can see my mother and aunt are mobile enough to lean over and together to all fit into the photo frame. I think What Matters is most represented in this photo.”

Figure 10. Identity (Clinical Psychology)

“T is enjoying food from her favorite Vietnamese restaurant. What Matters to her the most is her Vietnamese identity. Ever since she left [Vietnam] in the 1970’s she has always tried to connect with the Vietnamese community in the US.”

Figure 11.  Heart & Spirit (Clinical Psychology)

“I think this photo relates to the 4Ms because it shows Mentation (Mind). My dad (who is 66 years old) is with my brother (who is 44) and they were just goofing around and making jokes. My dad will play basketball and play pranks on my brother. My dad does not act like he is 66 years old. To me, because his heart and spirit are young and he stays active – his age is just a number and this picture shows that.”

Figure 12. Siblings (Clinical Psychology)

“As these siblings attend the wedding of a family member, they show us that even aging adults still desire to attend more upbeat and lively family functions. This demonstrates the Mobility aspect of the 4Ms Model, as they’ll tell anyone they meet that they swear by the law of inertia — just keep moving. They’re also endorsing the What Matters piece of the 4Ms model by continuing to engage in their social supports and getting out and about with people who matter to them.”

Figure 13. Sewing Joy (Physical Therapy)

“My grandmother moved in with us after my grandfather passed away in 2020. Throughout my lifetime, she has sewn beautiful quilts and blankets that she gifts to family and friends. It seemed like she was always working on a new project, and I have many fond memories of her teaching me how to sew and crochet. She first put down the needle when it became too taxing on her hands. However, she soon forgot how to sew as her Alzheimer’s disease (Mentation (Mind)) progressed. In the last few months, she tried it again and found herself able to sew. Now she has made quite a few smaller projects like towels and pillowcases that decorate our home. It brings joy to my entire family to see her enjoying her favorite hobby again.”

Figure 14. Best Friends (Clinical Psychology)

“I believe this photograph represents What Matters and Mobility as an aging adult. This is my dad and my son. They are the best of friends and my son loves my dad so much. Spending time being active with my son is something very important to my dad; they both love the outdoors and my dad is passing on his love of flowers, gardening, bugs, and animals to my son. Being mobile is another important aspect of aging for my dad. He is able to carry my son around his yard, take him on strolls through the neighborhood, and now he is walking and my dad can chase him around outside. He can lift him up and carry him on his shoulder and wrestle with him and do all the rough and tumble things little boys like to do. He prioritizes lifting weights and walking, gardening, and yard work as ways to stay fit into his 70s.”

Figure 15. The Farmer (Clinical Psychology)

“This photo highlights several of the 4Ms. First, it touches on What Matters. This picture displays someone who is proud of the business she created and the land she bought for herself. Her farm is something that began in her head and was translated into the world through her hard work. Mobility is another topic this photo hits on. Pictured is Farmer S on her tractor holding one of her favorite chickens. This highlights mobility because it shows her active living and participation in her everyday life. When she hosts parties, field trips, etc., she always cranks up and drives the tractor pulling the hay ride around the farm displaying the epitome of Mobility.”

Figure 16. Partners (Clinical Psychology)

“In this photograph, the representation of What Matters is the social support / spousal support. When asked the most important part of aging, the couple identify each other as What Matters most. Due to a recent fall that the wife had during Covid-19, this prevented her from a lot of activities; however, with the support of her very active husband, her recovery has been successful. Although both are 80 y/o neither has ambulation issues and limited Medication use. They were pleasant and happy with their current lifestyle. The photograph represents healthy aging and alignment to Mobility, What Matters, and Mentation (Mind).”

Figure 17. Little Moments (Physical Therapy)

“In this picture with my sister and grandmother, Mobility, Mentation (Mind), and things that Matter are most important. They were able to enjoy each other’s company at Mercer University’s homecoming a few years ago. My Grandmother enjoys the little moments! She always states that these are the moments that Matter Most. By using the 4 M’s, What Mattered most is spending time with her friends and family at the game, the ability to move around freely and without assistance, and the emotional and mental joy she received because of it.”

Figure 18. The Active Exerciser (Physical Therapy)

“This photo captures P in one of her favorite places and most-frequented places: her local country club. At 80 years old, P is one of the most active and energetic people I know. She does yoga, HIIT classes, swims laps, plays pickleball and tennis, and works out with a personal trainer. Sometimes she spends all day at the country club taking different fitness classes, and enjoying lunch or dinner with friends. Before her husband died, P used to come to work out at the country club with her husband. Since his passing, she has leaned more into the social and community aspects of the country club. I believe this photograph represents What Matters to P, in addition to Mobility and Mentation (Mind).”

Figure 19. The Builder (Clinical Psychology)

“This photo is of BP doing one of the things he loves most and grew up doing as a kid: building. After spending a year in rehabilitation for his back surgery, he is finally almost fully off of his pain Medication and able to walk and lift (Mobility). For someone who was always physically fit, being on bed rest and then requiring lots of support to heal did a number on his mental health. Now he is grateful to be able to walk, take care of himself, and even remodel his fireplace on his own.”

Figure 20. Waterfall (Physician Assistant)

This picture fully encompasses Mobility. She is still able to hike and reach beautiful sites such as the waterfall behind. What Matters to her is being able to maintain her Mobility and be in nature with her family. 

Discussion

The inclusion of health humanities in health professions education supports and enhances an understanding of the human condition, fosters the development of habits of heart, and has a direct correlation to skills needed in clinical practice.20 The activity referenced in this report used visual art, reflection, interprofessional education, and intergenerational contact to develop students’ understanding of the IHI age-friendly 4Ms framework, promote empathy, and allow for consideration of ageism in a safe space. The use of narrative allowed students to reflect on a photograph of an older adult engaging in their lived experience in the context of the 4Ms.

Pedagogical approaches for integrating health humanities into professional health sciences curricula include narrative, visual art, poetry, critical research and perspectives, film, and literature.21

  • Narrative includes “sharing of narratives, close reading of literature, and reflective writing”21(p887) and supports the ability “to listen for story within the therapeutic relationship and to facilitate patient-centered care”21(p887)
  • Visual art can be integrated into curricula to develop “visual acuity, visual literacy, and observation skills beyond simple movement analysis, toward seeing individuals more holistically.”21(p887)

In this project, narratives provide insight into the meaning of the photograph to the photographer and an avenue to share the story with others. Visual art was used to capture the holistic lived experience of older adults.

 

The 4Ms in This Context

Analysis of how the 4Ms were represented in the photographic images in this project shows Mobility (n=13) was most commonly cited in narratives of the 20 photographs shown, followed by What Matters (n=10), Mentation (Mind) (n=9), and Medication (n=4). A single 4Ms category was reported in eight photos, two 4Ms in seven photos, three 4Ms in two photos, and two with all 4Ms in the narrative. One photograph narrative did not identify 4Ms categories and inferred Mobility (Figure 3.)

Three considerations may have influenced the distribution of the 4Ms represented in the photographs. The first is the health professions discipline of the photographer. This voluntary activity included students enrolled in clinical psychology, pharmacy, physician assistant, and physical therapy programs. Profession-specific implicit biases may have influenced the framing of the photographs and the narrative interpretations. The relationship of the photographer to the subject may have also influenced the 4Ms narrative. Family members are captured in 10 of the images shown. The personal connection to the subject may have influenced the narrative reflection of what matters to the photographer. The final consideration is that students were asked to take photographs outside of the healthcare experience. The authors believed that this stipulation would support respect for the lived experiences of older adults beyond healthcare interactions and provide students an opportunity to capture and reflect on What Matters for a moment in time. Students found it challenging to categorize their photographs by a single 4Ms category. This is a positive finding, as the implementation of the 4Ms framework is built around a multifaceted approach and not siloed.

The 4Ms Approach to Combating Ageism

This activity addressed ageism through the application of best-practice strategies including education using the age-friendly healthcare framework, and intergenerational contact using storytelling through pictures of older adults. Educational and intergenerational activities are two of the three strategies recommended by the WHO to reduce Ageism.8 Effective and best-practice intergenerational activities include use of storytelling, promoting empathy, intergenerational cooperation, development of friendships, and documentation of the process.8,19

Ageism is a global problem that exists at societal, organizational, and individual levels. In healthcare, ageism occurs at the institutional level when organizations perpetuate it through actions and policies.22 At an individual level it may manifest in an interpersonal context during social or formal healthcare interactions, with negative outcomes for older adults.13

Efforts to reduce or prevent ageism should occur at societal and individual levels. Educational and intergenerational contact have been reported as effective interventions to combat ageism. Interventions combining educational and intergenerational contact have been shown to have a greater effect on attitudes (empathy) toward older adults.14

Health sciences education appears to be an optimal time to address ageism, as students are developing their professional identities and encountering older adults during experiential education. Like clinical skills, thinking and acting in a non-ageist way can be developed through practice. Change can occur through listening to personal stories, reading research and narrative, engaging in advocacy efforts, and actively correcting ageist stereotypes, jokes, and discrimination.22

Photograph vs. Stereotype

In this project, the photographs provided a contrast to stereotypical ageist views of older persons. Ageist stereotypes have been reported to include assumed physical and mental illness, cognitive impairment, weakness, fragility, dependence, isolation, inability to perform activities, and being short-tempered or irritable.23 However, the narratives that accompanied some of the photographs of older adults engaging in their lived experiences may have reflected implicit bias. The lived experiences of the individuals captured in the photographs in the context of the 4Ms framework provide opportunities for reflection on the importance of the moments, and consideration of What Matters to the individuals.

Extrapolating to healthcare, we hope that students will remember these vivid images when recommending treatments or providing healthcare in the future. The impact on healthcare delivery to the subjects of the photographs was not a component of the activity; however, opportunities to use the narratives and photographs as foundational components of interprofessional case studies were identified by the authors.

The Figure 9 “Together” narrative addresses each of the 4Ms and is the only photograph taken in a healthcare setting. The narrative identifies opportunities for delivery of age-friendly care including attention to detail “the cross necklace…indicating religious faith matters” and availability of caregiver support.

The narrative for Figure 5 “The Boxer” identifies self-management activities for a man with an unidentified progressive health condition.

Knowing What Matters to the patient, family, and caregivers living with a diagnosis of Alzheimer’s disease (Figure 13. Sewing Joy) may support management strategies throughout the progression of the disease. The ability to visualize an individual engaging in their lived experience may enhance case-based learning activities.

Conclusion

The authors contend that viewing photographs like those in this activity may promote the delivery of age-friendly care using the 4Ms framework for older adults.

Future iterations of this activity may include providing clinical scenarios based on the individuals in the photographs to assess their impact on the clinical application of the 4Ms. Taking and viewing photographs of older adults like these may prove to be a useful way to develop an understanding of age-friendly care and mitigate ageist stereotypes. Viewing images of older adults outside of healthcare encounters may be an avenue to humanize the lived experiences of older adults. Including images outside of and within healthcare encounters in the context of the 4Ms may further prepare students to deliver age-friendly care.

The use of student-generated photography of older adults may be an effective way to integrate the humanities into health professions education and develop knowledge of age-friendly care and habits of the heart for the provision of quality care for older adults and their families.

References

  1. US Census Bureau. Older people projected to outnumber children for the first time in U.S. history. March 13, 2018. Available at: https://www.census.gov/newsroom/press-releases/2018/cb18-41-population-projections.html. Accessed April 28, 2023.
  2. Bardach SH, Rowles GD. Geriatric education in the health professions: are we making progress? Gerontologist. 2012;52(5):607-618. doi:10.1093/geront/gns006
  3. Institute of Medicine. Retooling for an Aging America: Building the Health Care Workforce. Washington, DC: The National Academies Press; 2008. https://www.ncbi.nlm.nih.gov/books/NBK215401/
  4. Institute for Healthcare Improvement: What is an Age-friendly Health System? IHI. Age Friendly Health Systems. Available at: http://www.ihi.org/Engage/Initiatives/Age-Friendly-Health-Systems/Pages/default.aspx. Accessed February 3, 202 3.
  5. World Health Organization. Questions and answers Ageing: Ageism. https://www.who.int/news-room/questions-and-answers/item/ageing-ageism. Accessed February 23, 2023.
  6. Jönson H. We will be different! Ageism and the temporal construction of old age. 2013:53:198-204.
  7. World Health Organization. Global Report on Ageism: Executive Summary. 2021. Available at: https://www.who.int/publications/i/item/9789240020504? Accessed November 13, 2024.
  8. World Health Organization. Global Campaign to Combat Ageism: Toolkit. 2021. Available at: https://cdn.who.int/media/docs/default-source/campaigns-and-initiatives/global-campaign-to-combat-ageism/global-campaign-to-combat-ageism—toolkit—en.pdf. Accessed November 13, 2024.
  9. American Psychological Association. Age and Socioeconomic Status. 2010. Available at: https://www.apa.org/pi/ses/resources/publications/age. Accessed February 3, 2023.
  10. Project Implicit. About Project Implicit. Available at: https://www.projectimplicit.net/. Accessed February 23, 2023.
  11. Fitzgerald C, Hurst S. Implicit bias in healthcare professionals: a systematic review. BMC Med Ethics. 2017;18(1). Doi:10.1186/s12910-017-0179-8
  12. Kearney N, Miller M, Paul J, Smith K. Oncology healthcare professionals’ attitudes toward elderly people. Ann Oncol. 2000 May;11(5):599-601. doi: 10.1023/a:1008327129699. PMID: 10907955.
  13. Ben-Harush A, Shiovitz-Ezra S, Doron I, et al. Ageism among physicians, nurses, and social workers: findings from a qualitative study. Eur J Ageing. 2016 Jun 28;14(1):39-48. doi: 10.1007/s10433-016-0389-9. PMID: 28804393; PMCID: PMC5550621
  14. Burnes D, Sheppard C, Henderson CR Jr, et al. Interventions to Reduce Ageism Against Older Adults: A Systematic Review and Meta-Analysis. Am J Public Health. 2019 Aug;109(8):e1-e9. doi: 10.2105/AJPH.2019.305123. Epub 2019 Jun 20. PMID: 31219720; PMCID: PMC6611108.
  15. Mukunda N, Moghbeli N, Rizzo A, Niepold S, Bassett B, DeLisser HM. Visual art instruction in medical education: a narrative review. Med Educ Online. 2019 Dec;24(1):1558657. doi: 10.1080/10872981.2018.1558657. PMID: 30810510; PMCID: PMC6394328.
  16. Davis MH. Empathy. In: Stets JE, Turner JH, eds. Handbooks of Sociology and Social Research. New York, NY: Springer; 2006:443-466.
  17. Everson N, Levett-Jones T, Pitt V. The impact of educational interventions on the empathic concern of health professional students: a literature review. Nurse Educ Pract. 2018;31:104-111. doi:10.1016/j.nepr.2018.05.015
  18. Colby A, Sullivan W. Formation of professionalism and purpose: perspectives from the preparation for the professions program. U St. Thomas LJ. 2008;5;404-426.
  19. World Health Organization. Connecting Generations: Planning And Implementing Interventions for Intergenerational Contact. 2023. Available at: https://www.who.int/publications/i/item/9789240070264? Accessed November 13, 2024.
  20. Hojat M, Louis DZ, Maio V, Gonnella JS. Empathy and health care quality. Am J Med Qual. 2013;28(1):6-7. doi:10.1177/1062860612464731
  21. Blanton S, Greenfield BH, Jensen GM, et al. Can reading tolstoy make us better physical therapists? the role of the health humanities in physical therapy. Phys Ther. 2020;100(6):885-889. doi:10.1093/ptj/pzaa027
  22. Villines Z, Castiello L. What is ageism, and how does it affect health? Types, examples, and impact on health. Medical News Today. 2021. Available at: https://www.medicalnewstoday.com/articles/ageism#examples. Accessed February 23, 2023.
  23. Rosell J, Vergés A, Torres Irribarra D, Flores K, Gómez M. Adaptation and psychometric characteristics of a scale to evaluate ageist stereotypes [published correction appears in Arch Gerontol Geriatr. 2020 Nov – Dec;91:104248]. Arch Gerontol Geriatr. 2020;90:104179. doi:10.1016/j.archger.2020.104179

About the Author(s)

David W. M. Taylor, PT, DPT

David W. M. Taylor, PT, DPT is a Clinical Associate Professor and the Director of Clinical Education in the Department of Physical Therapy at Mercer University. He received his undergraduate and professional physical therapy education at Emory University. He is a Board-certified Clinical Specialist in Geriatric Physical Therapy Emeritus and a Distinguished Fellow of the National Academies of Practice. Dr. Taylor has practiced clinically and in academia for over 30 years in a variety of settings, across the continuum of care, with an emphasis on aging adults and fall prevention. His publications and presentations address interprofessional education, geriatric physical therapist practice, and fall prevention. He sees the humanities as necessary to help health professions students and faculty understand and appreciate the aging experience of the person they may care for. He believes visual arts are an effective medium for exploring the human condition and age-friendly healthcare for older adults. Dr. Taylor is a member of ENGAGE, which is part of Georgia GEAR, a multi-institute partnership whose goal is to improve clinical care and quality of life for older adults and their families in Georgia.

Leslie F. Taylor, PT, PhD, MS

Leslie F. Taylor, PT, PhD, MS is a Professor of Physical Therapy in the Department of Physical Therapy at Mercer University. She completed her physical therapy education at Georgia State University and continued her education with a Master of Science in Community Counseling, a PhD in Sociology, and a graduate certificate in Gerontology. Dr. Taylor’s primary teaching focus is on developing providers who practice using a holistic biopsychosocial model of care. Her research interests revolve around interventions for successful aging. Dr. Taylor believes that including and embedding humanities such as literature, art, philosophy, and historical perspectives into healthcare provider education programs allows opportunities for personal growth, a greater understanding of our shared world, and space for valuing and honoring the lived experiences of those individuals we serve.

N. Beth Collier, PT, DPT, EdD

N. Beth Collier, PT, DPT, EdD is a Clinical Associate Professor and the Director of Postprofessional Education in the Department of Physical Therapy at Mercer University. She completed her professional physical therapy education at Georgia State University and her Ed.D. in interdisciplinary leadership at Creighton University. She is a Board-certified Clinical Specialist in Orthopaedic Physical Therapy and a Fellow of the American Academy of Orthopaedic Manual Physical Therapists. Dr. Collier has practiced clinically in a variety of settings and in academia for nearly 15 years. Her research interests include developing skills of leadership and learning in healthcare providers and she has presented nationally and internationally on these topics. Dr. Collier is a life-long instrumental musician and appreciates the perspective that music training and experience has provided in her life. She views the humanities as an opportunity to reflect on life and one’s unique perspective. The humanities provide a safe space to explore and share a diversity of life experience and reconcile the natural presence of ambiguity.

Susan W. Miller, B.S. Pharm, PharmD

Susan W. Miller, B.S. Pharm, PharmD is a Professor and holds the Hood-Meyer Alumni Endowed Chair in the Department of Pharmacy Practice at Mercer University. She received the Bachelor of Science in Pharmacy degree and the Doctor of Pharmacy degree from Mercer University. She has more than 40 years of experience as a clinician and academic pharmacist in the areas of geriatrics, medication therapy management, and aging. Her publications and presentations are in the areas of consultant (long-term-care) pharmacy practice, geriatric pharmacotherapy, drug safety, and curriculum development. She sees the humanities as an important consideration in the provision of interdisciplinary patient-centered care for the older adult and their caregivers. She believes that visual arts are a key medium for learners to use to explore the life experiences of older adults. Dr. Miller is a member of ENGAGE, which is part of Georgia GEAR, a multi-institute partnership whose goal is to improve clinical care and quality of life for older adults and their families in Georgia.

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Towards a Global Knowledge Creation Strategy: Learning From Community-Based Rehabilitation https://jhrehabredesign.ecdsdev.org/2023/05/02/towards-a-global-knowledge-creation-strategy-learning-from-community-based-rehabilitation/ Tue, 02 May 2023 16:08:38 +0000 https://jhrehabredesign.ecdsdev.org/?p=9502

Towards a Global Knowledge Creation Strategy: Learning From Community-Based Rehabilitation

Djenana Jalovcic, EdD, MPA, MSc & Bente van Oort, MSc

Table of Contents

Introduction

Over the last 40 years, community-based rehabilitation (CBR) has been used as a community development strategy that aims at improving the lives of persons with disabilities within their community, by working with and through local groups and institutions. This Perspective aims to shed light on the development of CBR across the world, emphasizing the strength of adaption and adoption of the framework globally, but also stressing the importance of aiming for more global knowledge creation in the field of rehabilitation.

The beginnings of CBR can be traced back to the 1978 Declaration of Alma-Ata, which set an ambitious and broad goal of Health for All through primary health care. Recognizing health inequalities and viewing health as a human right, the Declaration promoted the development of a sustainable, comprehensive primary healthcare system. Although the Declaration has failed to be implemented globally, it can be considered as an impetus for a wider use of a human-rights approach to health.1 In addition, for the first time in history rehabilitation was included in primary healthcare. The Declaration of Alma-Ata called for primary healthcare to address the main health problems at the community level by providing “promotive, preventive, curative and rehabilitative services.”2

CBR was initially launched by the World Health Organization (WHO) as a strategy to increase access to rehabilitation services for persons with disabilities in so-called low- and middle-income countries (LMICs).3 WHO focused on the development of a training manual for people with disabilities in the community to provide CBR services.4 Over the next four decades, CBR has evolved into a much broader and multisectoral approach to community-based inclusive development (CBID).5 In 2010, the WHO published CBR Guidelines to provide guidance for the development and strengthening of CBR programs, promote community-based development inclusive of persons with disabilities, support stakeholders to meet their basic needs, and enhance the quality of life and facilitate empowerment of people with disabilities and their families.6

CBR Guidelines were developed as a result of a collaborative global effort of more than 180 individuals and representatives of almost 300 organizations mostly from LMICs.2 They are built on the matrix representing CBR’s key components including health, education, livelihood, social sectors, and empowerment. The CBR matrix reflects social determinants of health in the sense that it recognizes the non-medical aspects that influence the lives of people with disabilities. CBR Guidelines are informed by the UN Convention on the Rights of Persons with Disabilities (CRPD), a social model of disability, and the International Classification of Functioning, Disability and Health (ICF). They are reflective of social determinants of health and sustainable development goals.7 Health was viewed broadly and holistically as influenced by physical, environmental, and personal interactions. In this way, healthcare professionals and researchers began to look beyond the bedside to society as a whole.

Over time, CBR and CBID have evolved and transformed to meet the needs of persons with disabilities in more than 90 countries. The diversity of CBR implementation models speaks to the strength and sustainability of a flexible global strategy that can be adopted, adapted, and altered to meet the specific needs of persons with disabilities in specific contexts. Conversely, diversity presents a challenge to CBR’s development and understanding of its effectiveness across countries, fields, and disciplines — as every CBR approach is context-specific, making it hard to generalize its impact. The growing body of research on CBR has established that —despite its issues with cooperation between non-governmental organizations (NGOs) and local health workers, financing, legal disputes, and communication — CBR is a feasible and efficient way of providing guidance and assistance to persons with disabilities.8-14 However, CBR is still considered “data rich and evidence poor.”15

In this article, we discuss the differences in rehabilitation research and practices between high-income countries (HICs) and LMICs in relation to community-based rehabilitation. Pertaining to our discussion are the social and political forces that influence health and healthcare.

Understanding the Differences Between HICs and LMICs

Recently, an increasing number of researchers have addressed the ubiquitous and non-reflexive use of the terms ‘LMICs’ and ‘HICs’ as categories across disciplines and their attached preconceived assumptions.16-17 Therefore, we find it important to address the terminology used in this article. While we recognize the debate and the contention this division creates, we deliberately chose to use these terms in this perspective piece, as this divide showcases the exact problem we aim to address. Too often, the situatedness of CBR practice is assumed to take place in the LMICs, and too little attention is paid to the spaces and political realities in which rehabilitation practices take place. In this perspective, we aim to showcase how understanding the difference and organizing mutual learning regarding rehabilitation approaches in LMICs and HICs can allow for the further improving of rehabilitation worldwide.

Although CBR has been suggested globally as a strategy for rehabilitation, equalization of opportunities, poverty reduction, and inclusion of persons with disabilities within overall community development,18 it was mostly implemented in LMICs. Consequently, most benefits, knowledge, practice, and research on CBR have been generated in and remained within these geographical areas. High-income countries (HICs) rarely seem to use the CBR approach for rehabilitation practices, relying mostly on highly specialized medical services.19 Reasons for the paucity of CBR practices in HICs and its use in LMICs, may be caused by 4 interrelated factors: (1) Different knowledge systems; (2) Infrastructural differences; (3) Attitudinal barriers from researchers; and (4) A shift in the WHO’s approach toward CBR.

  1. Different knowledge systems. Historically in HICs, the medical model of disability was used in rehabilitation practices, which primarily focused on physical impairments in individuals that resulted in functional limitations.20 Disability was not often contextualized —that is, considered without reference to social and environmental factors. This fact was in contrast with CBR principles, which embraced a rights-based approach and the social model of disability. While increasingly HICs adopt the social model of disability and the ICF model, which partially accounts for contextual factors, the main focus of rehabilitation remains on medical interventions to address individual physical improvements.21 Moreover, while the ICF model identifies the needs and challenges of individuals by focusing on activities and participation, CBR expands upon this further by also considering community development, rehabilitation facilities, and the equalization of opportunities and social inclusion of persons with disabilities. While CBR focuses on five components: health, education, livelihood, social factors, and empowerment — representing a more holistic approach — the ICF maintains a narrower focus on biopsychosocial health.22-23
  2. Infrastructural differences. The differences in health infrastructure, workforces, access to care, and financial resources, have resulted in different focal points in the rehabilitation practices in HICs and LMICs. For example, rehabilitation professionals in HICs often have access to more high-technology rehabilitation and assistive devices than practitioners in low-resource settings.24 CBR was created to respond to the needs of persons with disabilities and their practitioners, and to find sustainable solutions in low-resource settings.25 HICs focused on the development of new interventions.
  3. Attitudinal barriers from researchers. HICs might use aspects of CBR, but do not call it CBR.26-28 As CBR was created initially for use in non-Western countries, HICs — due to issues related to (post-)colonialism that reject other, non-western knowledge — may not feel compelled to CBR, suggesting it is only for those in low-resource settings as opposed to ‘their’ advanced rehabilitation centres.29 Moreover, while “data rich – evidence poor” CBR calls for more methodologically-sound research. it also calls for HICs to examine views, values, understanding, and acceptance of different types of knowledge and data, as well as evidence in languages other than English. The fact that this is currently only done on a small scale leads one to question whether high-quality evidence is a privilege afforded to wealthy countries.30 It is important to recognize forms of evidence and research, even when this does not comply with the research standards of academic journals in HICs. Balakrishna Venkatesh of CBR Global Network describes this point further when stating: “People with limited resources don’t live for evidence, they live by supporting each other, building community resilience, mutual respect, interdependence.”31 Also, while in most cases, CBR research is driven and funded by HIC researchers, it is important to search for an equitable partnership in which the HIC’s contribution is meaningful and useful for CBR stakeholders. This is especially important to avoid perpetuating colonial structures and authorship parasitism (meaning that research papers include no authors affiliated with the country in which the study took place).32
  4. A shift in the WHO’s approach toward CBR. Finally, CBR has been the mainstay of the WHO’s rehabilitation approach since 1978, including the more recent WHO Global Disability Action Plan 2014-2021. One of the objectives in this plan stated the intention “to strengthen and extend rehabilitation, assistive technology, assistance and support services, and community-based rehabilitation.”33p16 However, CBR was notably absent from all WHO’s initial Rehabilitation 2030 documents. Rehabilitation 2030 is an initiative that draws attention to the profound unmet need for rehabilitation globally, calling for rehabilitation to be an essential part of the health system and part of universal health coverage available for all.34 Only after the efforts from CBR advocates, the WHO Executive Board proposed a resolution to urge the 76th World Health Assembly to include CBR strategy “to develop the community based rehabilitation strategy.”35-36 This showcases how CBR as a rehabilitation strategy is acknowledged only after the advocacy efforts of CBR experts around the world. For Rehabilitation 2030 to reach its lofty goals of rehabilitation, investment in CBR communities is crucial. We echo here again the words of Venktash: “You have to increase the knowledge and skills of people in the community, to provide care wherever they are. There is no universal health coverage without CBR. There’s no other developed methodology available.” 31

Six Challenges and Learning Opportunities

The divergence between HICs and LMICs not only slows further development of CBR research, as there are few CBR case studies being conducted in HICs, but also hinders a global approach to knowledge creation in rehabilitation practice at the community level. If HICs and LMICs find themselves in need of mutually-exclusive approaches to rehabilitation, knowledge exchange in the global field of rehabilitation is hindered. The Rehabilitation 2030 initiative, a global approach to rehabilitation, had the potential to build on four decades of sustainable development of data-rich and knowledge-diverse CBR. Engaging in historical and contextual reflection may help to illuminate common challenges around the world, allowing for mutual learning and understanding — and ultimately may improve the lives of the one billion persons with disabilities globally. As a call for global knowledge-creation, six current challenges to rehabilitation practices worldwide are discussed in this article, to exemplify how knowledge from either LMICs or HICs may provide insights and solutions.

  1. Participation of Persons With Disabilities and Attention to All Aspects of Life

Increasing emphasis is placed on using a holistic approach to rehabilitation; however, many practitioners struggle with questions about how to organize or implement this approach in their daily practices. In most HICs, this entails a shift from a traditional focus on the improvement of mobility and physical independence toward a focus on the improvement of societal participation of persons with disabilities through mitigating environmental barriers.37-38

In contrast, since its start in the 1970s, CBR approaches acknowledge that a person’s quality of life is determined by more than just physical abilities. Over the previous four decades, the participation of persons with disabilities remained at the core of many CBR projects. These projects have established a great deal of knowledge about the provision of education, vocational training, employment, and political participation as part of the rehabilitation process.39 Moreover, many CBR projects focused on the competence development of persons with disabilities to address their specific needs and ensure equal opportunities and rights.41-42 Additionally, other CBR projects helped persons with disabilities to become self-advocates.43 This created a significant amount of expertise among persons with disabilities and a valuable body of knowledge that could be easily exchanged and contextualized globally.

  1. Attention to Family Members and Community

Living with a disability or participating in rehabilitation affects not only an individual but the people in their lives as well. While in HICs, family-centered rehabilitation programs are being further developed, their successful implementation is often challenging, as the health needs of family members and informal caregivers are not considered part of rehabilitation.44 A CBR approach includes parents, neighbors, friends, teachers, employers, and community members throughout the rehabilitation process. However, challenges related to the sustainability of such involvement are experienced.45-47 A mutual exchange of lessons learned between persons using CBR or rehabilitation services, their families and friends, and practitioners regarding family-centered rehabilitation, may not only empower persons with disabilities and those around them but contribute to the creation of a more disability-inclusive society.48

  1. Sustainability

One of the major strengths and challenges of CBR is sustainability. CBR has been successfully sustained over 40 years and implemented in 90 countries through flexibility of approaches, adaptability to local contexts, collaboration with diverse stakeholders, reliance on available resources, and participation of persons with disabilities. The availability of human resources, training, monitoring and evaluation, collaboration, commitment, and financing is crucial for the further development of CBR programs.49 In HICs, most rehabilitation services are part of mainstream care practices, and are more likely to collaborate horizontally with NGOs, and have more access to international lobbying.50-51 Lysack and Kaufert compared CBR in LMICs to a rehabilitation practice for individuals living in North America with respect to sustainability practices and concluded that these approaches have a lot to learn from each other.52 Moreover, Alheresh and Cash have argued for academic-community partnership — in their case, between community members in Jordan and graduate students from the United States — to produce outcomes for research and interprofessional cooperation in a sustainable, cost-effective way.53 Comparing strategies, sharing data and experiences, and exchanging knowledge on a global level can provide many new insights on sustainability.

  1. Home and Community-Based Rehabilitation Services

In most western countries, centre‐based rehabilitation programs are considered the mainstream rehabilitation service. However, a number of randomized controlled trials studying home‐based rehabilitation programs are introduced in HICs to increase access and participation.54-56 Particularly in light of the recent COVID-19 crisis, in which many rehabilitation centre-based practices were suspended, alternative models like home-based rehabilitation are increasingly being studied.57 In rural areas, home- and community-based rehabilitation has been the norm due to limited resources and infrastructure.58-59 Therefore, studies about the effectiveness of these practices may provide valuable insights into the opportunities and challenges of home- and community-based rehabilitation.60

  1. Human Rights and Societal Attitudes

The Convention on the Rights of Persons with Disabilities (CRPD) is a human rights instrument that promotes human dignity and emphasizes the importance of full participation in society for individuals with a disability. Many signatory states are currently struggling with the process of ratifying and implementing this Convention.61 The CRPD is, however, integrated with the CBR guidelines. The CBR guidelines provide guidance on how to develop and strengthen CBR programs, support communities in addressing basic needs, enhance quality of life, and promote the rights and empowerment of persons with disabilities and their families.6 Evaluation studies on the implementation and usefulness of these guidelines could provide valuable information about the impact of the CRPD on rehabilitation practice.

  1. Community-Based Health and Payment Models

The economic dimensions of healthcare have been a source of controversy and innovation throughout the world. These dimensions can also pose barriers to equitable access to rehabilitation services at the community level — both in LMICs and HICs. While CBR programs often struggle with reducing the dependency on human, financial, and material resources from external sources, rehabilitation practices in certain HICs also face problems with access due to private insurance regulations and the impact of significant out-of-pocket costs. Universal health coverage (UHC) and the inclusion of rehabilitation services as a part of the UHC package have the potential to address this problem in both high- and low-resource settings.62-63 For example, in Bosnia-Herzegovina, one of the poorest countries in Europe, CBR services are provided through a network of over 60 CBR centres located within primary healthcare facilities. The network was built after the war in the 1990s through development projects that mainstreamed CBR into primary healthcare. The CBR network has made available and accessible services that could improve functional independence, participation, and community integration of persons with disabilities throughout the country.64 CBR services are part of the basic health insurance package, making them affordable to those in need regardless of their financial situation.65-66

On the other hand, the Canadian example illustrates that the exclusion of many outpatient rehabilitation services from UHC leads to health disparities. This model limits accessibility of rehabilitation services for Canadians who do not have private insurance and cannot afford the associated out-of-pocket payments.67 Aiming to ensure that all people have access to fundamental health services, when and where they need them, and without financial hardship, is a universal challenge and a good example of how global collaboration can encourage developing a more equitable approach to rehabilitation.

Conclusion

In this article, the authors highlighted the central tenets of community-based rehabilitation, outlined the needs of community members, and suggested opportunities for national collaboration to integrate knowledge between countries regardless of income categorization. Through highlighting opportunities for collaborative learning, information exchange, and knowledge co-creation surrounding the current challenges to rehabilitation service provision worldwide, we call on researchers, practitioners, and advocates to bridge existing gaps, challenge biases, and seek collaborative learning opportunities. It is only through a more unified approach that we will drastically improve rehabilitation services for and with all persons with disabilities and their communities across the globe.

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    45. Boyce W, Lysack C. Community participation: uncovering its meanings in CBR. In: Selected Readings in Community Based Rehabilitation: CBR in Transition. Bangalore: Action for Disability; 2000:42-58.
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About the Author(s)

Djenana Jalovcic, EdD, MPA, MSc

Djenana Jalovcic, EdD, MPA, MSc is an Associate Professor and Coordinator of the Master in Healthy Ageing and Rehabilitation program at Western Norway University of Applied Sciences. She has over three decades of experience as an educator, researcher, and community development practitioner in the field of global health, inclusive development, and community-based rehabilitation. She integrates humanities into interprofessional education of health professionals by using a critical lens to examine rehabilitation practices, bring forward multiple marginalized voices and experiences, and address health inequities within diverse cultural, social, political, and historical contexts.

Bente van Oort, MSc

Bente van Oort, MSc obtained her research master’s degree in Global Health in 2022 and is currently working with health policy. Earlier she worked with the Dutch Health Research Institute on rehabilitation research in the Netherlands and with a Dutch NGO aiming to improve the societal participation of young people with a disability. With an open vision, eagerness to learn, and social commitment, Bente is passionate about translating theory into practice and policy into impact.

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Getting to the Heart of the Patient-Provider Interaction: A Novel Theoretical Framework https://jhrehabredesign.ecdsdev.org/2023/03/16/getting-to-the-heart-of-the-patient-provider-interaction-a-novel-theoretical-framework/ Thu, 16 Mar 2023 21:18:01 +0000 https://jhrehabredesign.ecdsdev.org/?p=9219 [vc_row content_placement=”top”][vc_column][vc_custom_heading source=”post_title” font_container=”tag:h1|text_align:left|color:%231e73be” use_theme_fonts=”yes”][vc_custom_heading text=”By Dustin Willis, PT, DPT, PhD(c) and Everett B. Lohman III, DSc, PT” font_container=”tag:h4|text_align:left|color:%23000000″ use_theme_fonts=”yes” css=”.vc_custom_1679457323855{padding-bottom: 30px !important;}”][vc_column_text]Download the article (pdf)[/vc_column_text][vc_column_text]Category: Method/Model Presentation

Compliance With Ethical Standards: The authors declare that they have no conflict of interest, and no affiliations with, or involvement in, any organization or entity with any financial interest in the subject matter or materials discussed in this manuscript, and that no research was performed on any human or animal subjects that would require informed consent.[/vc_column_text][vc_custom_heading text=”Abstract” font_container=”tag:h4|text_align:left” use_theme_fonts=”yes”][vc_column_text]BACKGROUND/PURPOSE: The inner workings of the patient-provider interaction (PPI) have been shown to have profound effects on patient outcomes and patient satisfaction. However, the interchangeable use of terminology such as “compassion” and “empathy” as well as the varying definitions of terms such as “rapport” or “therapeutic alliance” have made both teaching and applying these skills challenging. Thus, the purpose of this literature review is to synthesize the current data on the topic.

MODEL DESCRIPTION: A novel theoretical framework is introduced, which is intended to illustrate how each component relates, interacts with, and flows as the relationship between patient and healthcare provider progresses. Additionally, the new framework is proposed to provide improved clarity and enriched academic and clinical application of cultivating a successful PPI.

EVALUATION/OUTCOMES: The literature thus far illustrates the complexity of this relationship, warranting a more robust organization and approach to optimizing said relationship.

DISCUSSION/CONCLUSION: The Compassionate H.E.A.R.T. Model of Patient-Provider Interaction is a more thorough view of the dyadic PPI that is supported by the current literature. Further research is needed to evaluate both the academic and clinical application of the novel model.

Keywords: compassion; empathy, therapeutic alliance, patient-provider interaction, rapport[/vc_column_text][vc_column_text]

Introduction

“People don’t care how much you know until they know how much you care.”

–Theodore Roosevelt

This quote has been attributed to several different people over the years, but if its origins are from the lips of former president Theodore Roosevelt, then it would have first been uttered over a century ago, lending credence to the idea that caring should be well-ingrained into our collective consciousness, especially in the field of healthcare. However, a study conducted by Doohan and Saveman1 narrates a differing practice in the delivery of healthcare to patients. After a harrowing bus crash that claimed 6 lives, researchers interviewed the 56 survivors, 5 years following the crash. When asked about their memories of the event, they spoke of the physical pain, which is not surprising. The other factor that was cemented into their memories was a lack of compassion by caregivers at the hospital. What is even more disheartening is that they were all taken to multiple different hospitals.

While it may be argued that lack of compassion is an aberration in healthcare practice, the current body of literature paints a different picture. Thirteen-hundred patients and physicians were surveyed and asked if the U.S. healthcare system was compassionate; nearly half of them responded “no.”2 It appears that this disheartening trend continues; other more recent investigations reveal similar findings.3,4 The question then becomes, “Why?” While the answer is undoubtedly multifaceted, part of it likely lies in the education of healthcare professionals.3 It is well-established that compassionate care matters, as demonstrations of compassion have been shown to increase patients’ hope for recovery, accountability, control over their own health, satisfaction, safer care, happiness, and healthcare professional resilience—which leads to time and cost savings.4 Yet, there still exists a lack of clarity regarding the specifics of compassion in the administration of patient care.

In the literature on the topic of compassionate care, ambiguity appears regarding the terms compassion, empathy, caring, kindness, connection, rapport, and patient-provider relationship—terms that are often used synonymously—and makes merely collecting data challenging.5 In physical therapy, the most pervasive equivalent term used is “therapeutic alliance” (TA). A systematic review on the topic of TA defined it as having 3 components: 1) therapist-patient agreement on goals; 2) therapist-patient agreement on interventions; and 3) the affective bond between therapist and patient.6

Attempts by primary care physicians have also been made to illuminate how to create a sustained partnership with their patients, with the key components being: 1) whole-person focus; 2) physician’s knowledge of the patient; 3) caring and empathy; 4) patient trust of physician; 5) appropriately adapted care; and 6) patient participation in shared decision-making.7 However, these components are presented as free-standing concepts, with not much in the way of a flow that occurs in any encounter between 2 human beings, nor insights into how they interact with one another.

While any attempt at trying to quantify the dyadic nature of such a complex interaction will fall short of reality, this overly-reductionist view of a TA that is intended to attune ourselves to the phenomenological experience of our patients leaves a great deal to be desired. Combine that with the sheer confusion among terms used to describe the process, and it is apparent that a new approach to compassion in care is warranted.8

The Components of Compassionate Care

Thus, the purpose of this literature review is to introduce a novel theoretical framework to expound upon the complex nature of the patient-provider interaction (PPI), while simultaneously simplifying its application both in the classroom and the clinic. To address this purpose, first we will begin with a discussion of each component that goes into compassionate care, based on the literature, followed by the presentation of a novel framework.

Authenticity

There is agreement in the literature that vulnerability is a general human condition; it remains complex, multifaceted, and thus difficult to define.9 One of the complexities lies in how it is open to both objective and subjective definitions.10 Objectively, it can be defined as the interaction between capabilities and risks making up an individual’s wellness-illness status, yet subjectively, the person’s own assessment of this transaction is also part of the definition.11 Healthcare is already well-built to handle the objectively-defined vulnerabilities through its “calculative thinking” epistemology—or understanding of the world through scientific investigation.12 However, when someone has a certain aspect of their body seemingly “break down,” it is not only the body, but the life lived in that body, or, lived body, that is disturbed. There is a shift in the patient’s entire meaning-making process, leaving them to make sense of living in a body that now feels foreign.13 Whether the patient is aware of the subjective aspect of vulnerability or not, it is as equally important as the vulnerabilities that can be objectively measured and tested scientifically. This is true especially when one is attempting to connect with that person and their entire lived experience, as the meaning-making process that is disturbed by this subjective aspect of vulnerability drives their entire sense of being in their world.

Current medical practice’s focus on the scientific aspects of vulnerability often leads to an objectifying gaze from a distance, or a place of “detached concern,” that is detrimental to our ability to build a relationship.14 Healthcare providers must lean in and connect with our own vulnerabilities of our own lived experience in order to better enter the world of relationship.15 With the exploration of their own vulnerability, the healthcare provider triggers a shift toward authenticity, or a deepening of present being in the world that can operationally be described as a shift in attention and engagement and reclaiming of oneself from the way we typically fall into our everyday ways of being.12 The “default mode” of the human experience is shaped largely by the influence of others, often termed the  “they,” as well as our own thoughts of who and what we think we should be. Just as the patient is forced to confront their vulnerability and loss of self/meaning, which forces them to face the facade they had put up in their inauthentic life as the “they,” it is the healthcare provider’s responsibility to enter this same space & confront our own mortality or potential to lose all that gives us meaning at any moment, which in turn also forces us to tear down the walls of our own inauthentic path. In other words, the provider must be able to fully exist authentically in the present moment, minimizing protective distancing from the suffering witnessed daily, in order to open themselves up to be able to enter a patient’s suffering. This is preferable rather than protectively shielding themselves from the anxieties associated with the vulnerability of their own humanness or that of those with whom they are attempting to build fellowship.13

Advice-Seeking and Clinical Knowledge/Expertise

Patients seek out healthcare providers for help. Whether a patient/provider visit targets mysteries surrounding bodily functions, healthier self-governance, or amelioration of pain, every patient is advice-seeking—in search of medically-informed guidance. Louis Gifford organized this fact when he proposed that every patient has 4 questions they are seeking to get answered: 1) What is wrong with me? 2) What can you do to help? 3) What can I do to help? and, 4) How long will it all take?16

PPIs offer unique opportunities for a healthcare provider who possesses extensive schooling, has undertaken rigorous clinical rotations, and has engaged in yearly continuing-education courses, to evaluate patients for unknown or unspecified pathologies and their related impairment and functional abilities. Accompanied by a desire to help others, practitioner competence (diagnostic as well as protocol efficacy) presents as a primary criterion in provider selection.17 In a systematic review of the literature on patient priorities for primary care, 19 studies found that the second most important factor in patient preference/provider selection was competency/accuracy, topped only by the quality of “humanness.” Humanness here is referred to as being viewed by the patient as “understanding, compassionate, attentive, treats you like an individual,” and is “patient, honest, friendly and pleasant, and sensitive to patients’ feelings.”17

This places a luminous spotlight on the importance of the “caring” in care provision. When a level of expertise/knowledge is combined with a genuine, caring desire to help, the genesis of optimal PPI becomes an achievable feat.

“Open-Floor” Freedom and Active Listening

One of the primary aspects of care that patients seek in a provider is the assurance that their views and preferences will be considered when devising a treatment plan.18 This serves as an important reminder that there are 3 key elements to Evidence-Based Practice (EBP): 1) Evidence; 2) Clinical expertise/expert opinion; and 3) Patient’s perspective.19 Patients must be provided an opportunity to share their views and preferences with their provider, secure in the knowledge that both are valued and utilized in formulation of treatment options. It is all too easy for well-meaning, busy clinicians to forget that the patient’s unique social, cultural, and personal circumstances as well as their values, expectations, beliefs, and priorities are critical elements to practicing evidence-based medicine (EBM).20 Unfortunately, the literature suggests healthcare providers fall short in this regard. On average, patients are interrupted while narrating their health concerns anywhere between 11 to 12 seconds21, 22 and 23 seconds.23 The clinician’s failure to listen fully is problematic because the patient is the biggest expert regarding their lived experience. Additionally, if patients are not allowed to actively participate in the conversation, it begs the question: how can any form of alliance be engineered to optimize care regimens?

A huge contributing factor to the above issue is the productivity standards inherent in healthcare systems. However, when given the opportunity to express themselves freely and uninterrupted at the start of a healthcare encounter, patients take an average of 92 seconds.24 It is vital to the patient and provider that the patient be able to share their thoughts, beliefs, and experiences freely in order to optimize patient care. Practitioners must thoughtfully and purposefully create “metaphoric space,” or allow an opportunity in the conversation for a “narrative discourse,” or communion in the form of “someone telling someone else that something happened.”25

The natural counterpart to someone having the space to speak their piece is active listening. Active listening is defined as a conscious processing of the stimuli being received through the auditory system via the passive process of hearing.26 Extensive literature published on this topic speaks to the vitality of this often-overlooked skill. Morgan et al27 highlighted how miscommunication occurring in PPIs is common and often proceeds undetected. The authors stated that “consultations are extremely complex interactional events, with numerous potential barriers to effective communication, including strict time constraints. It is therefore essential that general practitioners (GPs) work actively on strategies which minimize the risk of more serious communication problems occurring.”

Traeger et al28 compared intensive patient education to a placebo in patients with acute low back pain. The placebo in the study was active listening without offering information or advice. Placebo, Latin for “I will please,” is a procedure that is considered to have no therapeutic effect, designed merely to pacify and calm.29 Researchers concluded that adding 2 hours of patient education to first-line care did not improve low back pain outcomes as compared to the placebo intervention. Since both groups showed equal improvement, it could be argued that active listening is not a “sugar pill” but rather a viable and powerful tool.

Kaptchuck et al30 also relegated active listening to the placebo category, finding that: a “placebo” of enhanced therapeutic relationship consisting of a warm, friendly manner; active listening (such as repeating patient’s words, asking for clarifications); empathy (such as saying “I can understand how difficult Irritable Bowel Syndrome (IBS) must be for you”); 20 seconds of thoughtful silence while feeling the pulse or pondering the treatment plan; and communication of confidence and positive expectation (“I have had much positive experience treating IBS and look forward to demonstrating that acupuncture is a valuable treatment in this trial”); produced statistically- and clinically-significant effects on patient outcomes.

Similarly, Fuentes et al31 found that “enhanced therapeutic alliance,” measured as verbal behaviors, including active listening (ie, repeating the patient’s words, asking for clarifications); tone of voice; nonverbal behaviors (ie, eye contact, physical touch); and empathy (eg, “I can understand how difficult LBP must be for you”); appeared equally as important as Interferential Current (IFC) in pain modulation. From a mechanistic standpoint, it has been established that using patient-centered interview (PCI) skills such as active listening shows patients’ brain changes on functional resonance imaging (fMRI) related to decreased pain-related neural activation of the anterior insula.32 Haley et al33 concluded that active listening and self-awareness lead to improved empathy in healthcare providers and ultimately to improvements in quality of patient-centered care (PCC).

Understanding and Emotional Intelligence

From the patient’s perspective, the logical next step after having your space to share your story is to feel that your thoughts and feelings about that story are understood. It has been established that “failures in communication of information about illness and treatment are the most frequent source of patient dissatisfaction.”18 Researchers found that a high number of patients already have an idea about what is wrong and what may have caused their condition. But failing to articulate their experiential observations via open-floor freedom/active listening, or not having their thoughts and feelings about it properly understood are what contribute most to poor patient satisfaction and poor treatment outcomes. An examination of the literature reveals patients not only value “humanness” as the top quality they are seeking in a healthcare provider, but also that patients are looking for a provider willing to “explore patient needs” as well as “other aspects of relation & communication.”17

A key factor in ensuring the needs of another are being heard and understood is emotional intelligence (EQ)—having the ability to decode exactly what those needs are and how they are making the other person think or feel. This term was popularized by psychologist Daniel Goleman,34 in which he defines it as one’s ability to “recognize, understand, & manage their own emotions” as well as the ability to “recognize, understand, & manage the emotions of others.” Goleman goes on to dive deeper into EQ, elaborating on its 5 components: 1) Self-awareness; 2) self-regulation; 3) motivation; 4) empathy; and 5) social skills. For the purposes of this paper, EQ is defined as an examination of basic definitions of recognizing, understanding, and managing emotions in ourselves as well as in others.

When reviewing the literature on how EQ and its components relate to interactions between healthcare provider and patient, the message is clear: it plays a profound role. Miscommunication is a regularly-occurring phenomenon in healthcare interactions for many reasons.27 While mostly due to the complex nature of human communication, research seems to suggest that providers “cannot assume their communication has been successful or understood as intended,” implying that a certain degree of EQ is necessary to attempt to achieve that ever-elusive goal of understanding the thoughts, beliefs, or emotions that have been shared in the encounter.27 Without any exploration of thoughts and feelings regarding what is attempting to be communicated, there is no way to assess the level of understanding that has or has not been achieved. It has also been found that a physician’s EQ is positively correlated with patient self-rated satisfaction, and their level of trust in the physician, as well as their rating of the overall patient-doctor relationship (PDR).35 The literature has also demonstrated that using an emotional focus with empathic responses in order to understand the patient’s story (or, in other words, EQ) shows brain changes on fMRI related to decreased pain-related neural activation of the anterior insula.32

Validation and Empathy

Patients often seek healthcare for help with their pain experience; communication with those in pain is important, as the way that healthcare providers respond to patient sharing of pain-related stories has a significant impact on pain-related outcomes.36 Not only are patients seeking to be understood but also in search of validation, and how it is or is not provided to them in sharing their pain story.37 Linehan38 suggests that validation can best be defined as a legitimatization process where the listener communicates that the speaker’s thoughts and feelings are understandable and free from judgment. Based on this process, Linehan points out that validating a patient’s thoughts and feelings does not mean that the person validating necessarily agrees with the speaker’s perspective, but rather that the listener can simply understand why the patient thinks and feels as they do.39 While most clinicians might feel they already provide validation for their patients, the key factor is whether the patient feels validated by the listener’s response.40

The concept of validation is a vital step in the PPI. Countless patients—particularly those dealing with persistent pain—believe that others do not believe their pain story or, worse yet, doubt if their pain condition is legitimate.41 This issue not only rings true across cultures, but the difficulties are often amplified when the patient belongs to a culture or speaks a different language than the healthcare provider.42,43 In these instances, how support is offered is just as vital as what is communicated. The theory of psychological reactance suggests that individuals have a basic need for self-determination in affecting their own lives.44,45 The theory proposes that any messaging or persuasive attempt may constitute a threat to freedom and arouse reactance, which in turn leads to rejection of the message.46 This theory predicts that the more explicit and dominant a message is, the greater the perceived threat to freedom—and the psychological reactance it induces. This is countered by whether the message is deemed to have high “person-centered” qualities or is specifically intended to alleviate a distressed person’s emotional state.47 Research has centered primarily on marital relationships. However, a clear correlation exists between the level of perceived person-centeredness of a response and principles of psychological reactance, which can be applied to the PPI.48 Thus, it is imperative that the provider’s message of validation be paired with genuine empathy to attempt to mitigate any psychological reactance.

Empathy is a widely-discussed topic that often leads to varying definitions and components regarding what it entails. In addition, empathy is a topic that is layered, rather than presenting as a single observable trait. Riess49 described empathy as “a human capacity that is best understood as several facets that work together to enable us to be moved by the plights and emotions of others.” Riess elaborates by stating, “our empathic capacity requires specialized brain circuits that allow us to perceive, process, and respond to others.” Thus, it is the combination of these 3 activities (perceiving, processing, and responding) that allows someone to show empathy.

For example, a provider demonstrating empathy as just described would be able to perceive that their patient is frustrated by not feeling heard, and process that information to effectively respond by allowing them the time and space to share their experience. While overlap exists between EQ (as defined above), empathy (as defined here), and compassion (defined in the next section), the goal of this manuscript is to attempt to sort out the subtle differences without being heavily reductionist. The perception occurs first with EQ, followed by empathy as the processing, interpretation, and relating to those perceptions, and involves both cognitive and emotional intelligence, among other components of empathy whose definitions are beyond the scope of this article.

As for the relevance of empathy in the PPI, the evidence is potent. In a large cohort study investigating over 240 Italian physicians and nearly 21,000 patients with diabetes, it was found that the patients of physicians who scored low on self-rated empathy had a 41% greater risk of diabetic complications.50 Analogous findings were also seen with a smaller, but still significant sample size in the United States as well. A study of almost 900 patients under the care of nearly 30 physicians found that there was a 16% difference between the A1C hemoglobin testing as well as a 15% difference in low-density lipids (LDL) cholesterol levels of diabetic patients in favor of the high-rating empathy physicians.50 Similar findings were seen when investigating disability among migraine sufferers and their assessment of their physician’s level of empathy. The patients of physicians with higher patient-rated empathy scores showed statistically- and clinically-significant improvement in compliance with diet/meal timing, exercising, stress modulation activities, sleep modification, medication use, and overall patient outcomes.52

In another example, a large prospective study of the placebo effect found that when placebo acupuncture was paired with an “augmented” patient-provider relationship (consisting of warmth, attention, active listening, and empathy), the intervention had similar effects as those seen in clinical trials of drugs currently used to treat irritable bowel syndrome.30 Looking into the trauma surgical ward of the hospital, a place where technical medical skills are classically thought to be the dominant factor regarding patient outcomes, we see more of the same results. Patient-reported assessment of physician empathy was the strongest predictor of treatment outcome at both 6 weeks (short-term outcomes) and 12 months (long-term outcomes) following patient discharge.53 As alluded to earlier, there is a final step in an empathic response, and that is the actual response or action, which we have defined as compassion.

Compassion 

The concept of compassion is esoteric even when being investigated via scientific inquiry. A widely-agreed-upon definition could not be ascertained from the available literature. In its simplest form, compassion can broadly be described as “a concern for the well-being of others.”54 However, given the overlaps covered above, a more succinct definition could be helpful to further distinguish compassion from its other close relatives.

Compassion has been further defined as “a multi-textured response to pain, sorrow and anguish that includes kindness, empathy, generosity, and acceptance, with the strands of courage, tolerance, and equanimity equally woven into its cloth.”55 Elaborating further, the authors state that compassion is “the capacity to be open to the reality of suffering and to aspire to its healing.” While this definition offers slightly more clarity on what exactly compassion is, there is still some ambiguity.

Goetz et al56 provide further elements of the broader definition including “the feeling that arises in witnessing another’s suffering and that motivates a subsequent desire to help.” This definition paints compassion as an affective state in response to a subjective feeling, rather than an attitude. If compassion is often quoted as being “empathy in action,”57 the desire to help paired with subsequent action is the differentiating factor between compassion and empathy. For the purposes of this article, the following 4 components of compassion and the foundation for this framework include: 1) awareness of suffering (cognitive/empathic awareness); 2) sympathetic concern related to being emotionally moved by suffering (affective component); 3) a wish to see the relief of that suffering (intention); and 4) a responsiveness or readiness to help relieve that suffering (motivational).58

Research that investigated compassion and its effect on patient-provider interactions is limited in scope and purview. In fact, this dearth of available literature was motivational in the creation of our theoretical model. Additionally, as the title of the model (Compassionate H.E.A.R.T. Model) suggests, it is this understanding with an intention to help.” A clear overlap exists between that definition and what we defined as compassion above. Which factor was measured and how did they both influence the results? Similar questions arise with nearly all the studies focused on empathy. Some researchers52,53 used the Consultation and Relational Empathy (C.A.R.E.) Measure. Despite having empathy in the title of the outcome measure, another study used the same C.A.R.E. measure and found that compassion is correlated with decreased incidence of post-traumatic stress disorder (PTSD) in emergency room patients.59 When reviewing questions that appear on the C.A.R.E. Measure, one explicitly asks about the provider’s level of “care and compassion,” which adds to the confusion regarding distinguishing compassion from empathy. It is unclear if one factor was more influential than the other on outcomes achieved related to patient compliance and treatment outcome.

The researchers of this theoretical framework are not alone in questioning this overlap between the terms. In a recent prospective cohort study60 of almost 6,500 patients and their outpatient physicians, a tool to measure clinical compassion was developed and was shown to have strong internal consistency and convergent validity to identify the patient’s experience related to compassion or compassionate care. That same tool was utilized in a cross-sectional investigation61 of nearly 900 patients and their emergency room physicians. Results revealed excellent reliability and an ability to assess patient experience (compassion), distinct from mere patient satisfaction.

Despite lack of research on the direct effect of compassion on PPIs, the transition from empathy to compassion is vital to managing the cost of care62 and is thought to function in a stress-buffering manner for the clinician,54 with significant implications for a medical system riddled with clinician burnout. Clearly, all seem to play a pivotal role in the process of PPIs leading to successful patient health outcomes, which highlights the importance of distinguishing the components that contribute to a successful interaction.

Congruence/Rapport

Rapport is described as “a friendly relationship in which people understand each other well.”63 Congruence, or “genuineness,” is “an aspect of the therapy relationship with two facets, one intrapersonal and one interpersonal.”64 Mindful genuineness, personal awareness, and authenticity characterize the intrapersonal element. The capacity to give voice respectfully and transparently to one’s experience to another person characterizes the interpersonal component. Congruence, then, occurs when rapport meets the intersectionality of integrity during an interaction with another.

Integrity cannot occur without rapport. However, rapport can happen without congruence, which is most easily visualized with the example of the “sleazy used car salesman,” who is establishing an artificial connection simply for the sake of making a sale. Essentially, the goal of this phase of the therapeutic relationship is to establish rapport in conjunction with congruence, internally with oneself, and externally with the patient. To continue down the path in unison, the patient and practitioner must demonstrate a genuine and honest understanding of one another.

Progressing through the proposed theoretical framework, a poverty of quality research exists with which to support each section that contributed to the focused development of the framework itself, while also providing structure for future research on investigation of the PPI. For congruence specifically, the only significant literature on the topic has been published within the field of psychology. A recent meta-analysis65 found congruence to be a noteworthy factor that positively influenced patient outcomes, but with reservations due to the limited number of recent studies looking into congruence’s association with outcomes, the absence of any randomized controlled trials, and the small range of effect sizes in newer studies.

Rapport, on the other hand, has been investigated via works that have explored TA. A strong TA has been shown to be positively associated with: 1) treatment adherence in patients with brain injury and patients with multiple pathologies seeking physical therapy; 2) a reduction in depressive symptoms in patients with cardiac conditions and those with brain injury; (3) treatment satisfaction in patients with musculoskeletal conditions; and (4) improved physical function in geriatric patients and those with chronic low back pain.6

Confidence/Trust

Trust is defined as “assured reliance on the character, strength, ability, or truth of someone or something.”66 According to developmental psychologist Erik Erikson, the theoretical battle of trust vs. mistrust is the very first state of psychosocial development, occurring during the first 2 years of life.67 This sense of trust or mistrust is learned by the child through their interactions with their environment during this critical developmental stage. Similarly, in the PPI framework, the same concept is developed in both the patient and the provider while progressing through each stage. Once established in both directions, this leads to confidence, or the “faith or belief that one will act in a right, proper, or effective way.”68 This confidence is fostered via the means of trust. Without trust developed throughout the previous stages of interaction, confidence in the shared decision-making in the next step is omitted.

While the literature is sparse, the importance of confidence and trust in PPIs is somewhat intuitive. In a retrospective study69 of audiotaped interactions with Gulf War veterans, it was found that engagement and trust were positively associated between the patient and provider, as well as the only 2 patient factors that were associated with patient-provider concordance or working collaboration. In studies where the definition of TA was previously described as extremely broad, including “the affective bond between patient and therapist,” it can be argued that a portion of the positive effects on treatment adherence, depressive symptoms, treatment satisfaction, and physical function can be attributed, at least in part, to confidence and trust.6

Concordance/Shared Decision-Making

Concordance refers to the patient and the provider listening to one another’s thoughts and beliefs about the issue, negotiating a shared understanding of those beliefs, and coming to an agreement about how to move forward.70 Concordance is commonly referred to as “shared decision-making” about both problem and intervention, which is the core of the popular buzz-phrase “patient-centered communication,”71 and the end goal of this novel theoretical framework.

Patients have made it clear they want and value a role in the decision-making process.17, 18, 35, 69 For most practicing clinicians, the paternal biomedical model is still preferred, which likely contributes to lack of data informed by the patient perspective. It is possible that missteps in the proposed process of navigating the PPI also contribute to interactions failing to reach this critical stage.

Modes Of Communication

While we have outlined an understanding of each of the components of our novel framework, it is of paramount importance to also acknowledge the modes of communication through which each of these is being communicated between patient and provider. No exchange between 2 people can occur without a vehicle of transfer. Communication, defined as “a process by which information is exchanged between individuals through a common system of symbols, signs, or behaviors,”72 is an integral piece of any medical encounter. However, miscommunications are a frequent and complex phenomenon.27 This systematic framework that accounts for all of the modes of communication taking place during the exchange of information between a patient and their healthcare provider could provide insights into better grasping how to resolve this issue.

Verbal communication is probably the most researched of all the mechanisms of communication. It is well-established that words have the power to heal;73 however, healing is often attributed to the placebo effect. Similarly, words have the power to have a negative effect seen in patients given a “brief negative verbal suggestion on how previous studies have shown that exercise can induce pain,”74 commonly referred to as a “nocebo effect.” Practitioners must be aware of how varying forms of communication contribute to health outcomes,75 particularly when attempting to avoid iatrogenic ailments, or instances where “doctors [along with their words, thoughts, beliefs, feelings, and actions], drugs, diagnostics, hospitals, and other medical institutions act as ‘pathogens’ or ‘sickening agents.’”76 The bottom line is that words matter and can either harm or heal; thus, we must be mindful of them.

Although verbal tends to be the dominant form of communication, a large portion of the information exchange in a healthcare interaction is nonverbal.77,78 Specific to visual communication, behaviors such as a lack of smiling, nodding, or making eye contact have been shown to have a negative effect on both the physical and cognitive function of inpatient geriatric patients, after controlling for the patient’s physical and cognitive function at the time of admission. Inverse findings also held true for positive visual cues (eg, smiling, nodding, making eye contact, etc.) in improving function.79

Human touch is another powerful means of communication that has been shown to have a positive effect on the healing of patients in various settings.80 These effects aren’t limited to the “skilled touch” of manual interventions, but also through the means of transferring a caring energy of connection through “therapeutic touch.”81 Similarly, communicating via shared emotions has also been shown to have a positive effect on healthcare interactions.30, 31 Space has also been saved for communication deemed intuitive in nature, or, similar to placebo effect—potential means by which we have yet to understand.82

Mindful use of available means of communication moves the practitioner from section to section of the sequenced algorithm with iterative loop (theoretical framework), ideally ending at the intended outcome of a positive PPI and development of a concordant plan to address patient concerns.

The Compassionate H.E.A.R.T Model

Putting all the above evidence together, we arrive at the proposed Compassionate H.E.A.R.T. (Helping Ease, Alleviate, & Relieve Therapeutically) Model (Figure). It was developed by the authors to provide a structured framework for teaching and clinical application of this approach to the PPI.

FIGURE 1

Model Description

As shown in this model, the starting point for both parties is vulnerability and authenticity. The patient is inherently vulnerable in their wrestle with some form of illness and seeking care for the objective and subjective aspects of that vulnerability. The provider must step into the patient’s suffering by confronting their own human vulnerability—thus liberating both parties to authentically be in the moment and establish a connection of lived experience.

With that first step established, the model segues by appreciating the intersect of 2 separate lived experiences by the provider and patient that is inherent to the start of any healthcare interaction. The patient comes to a practitioner seeking some sort of knowledge or advice based on the clinical expertise that the provider possesses. The patient is often seeking an opportunity to tell their story, without interruption (open-floor freedom), while the provider is actively listening. Ideally, if the provider can attune to cues on what the patient is feeling regarding their thoughts, beliefs, feelings, and experience (emotional intelligence), a level of understanding may be achieved.

The provider’s empathetic ability to relate to the patient’s thoughts, beliefs, feelings without judgment is then paired with validation for the patient and their lived experience. It is this feeling of having someone else come alongside of the patient to validate their experience as real, combined with the provider’s internal “at oneness” with the patient resulting from “crossing over” into their lived experience and getting themselves back,83 that is hypothesized by the authors to lead to a transformation in the interaction—a dyad forming a singular unit, working together toward a solution. This key shift in the relationship occurs when both parties arrive at compassion; or empathic desire to help, hence why this sentiment compassion sits at the figurative and literal heart of the model.

Once arriving at this key transformational stage of compassion, the relationship then continues to shape a level of congruence, in the form of a mutual respect for each other’s role in the working relationship (rapport). With this newfound understanding, the interaction moves forward into a place of confidence that is achieved via a means of trust, until finally arriving at a place of concordance, or shared decision-making regarding the proper path to take to reach the mutually-agreed-upon goals.

Reflection

Realistically, each step of the interaction will not always flow smoothly. Clinician and patient interactions can at times be messy. To account for this, a vital component of the model is ongoing reflection, meaning the opportunity for each party to step back and analyze how the relationship is processing through the stages, potentially retreating to a previous step to ensure that every step is properly executed.

Reflection can transpire anywhere along the process but is shown midway (Figure) for purposes of simplicity. This reflective process, defined as “critical and conscious thought about one’s behavior and practice”84 or as a careful exploration and evaluation of experience,85 is paramount for any attempts to “bridge the divide” that separates provider from patient via what is known as “narrative competence,” or the “ability to absorb, interpret, and act on the stories and plights of others.”26 Within the act of reflecting on the interaction in real time as well as in retrospect lies the ability to foster the kinship between the patient’s lived experience and that of the provider’s as well, thus creating the medical care that is desired by both parties.

Modes of Communication

Lastly, the model accounts for how all stages are communicated between both parties throughout the process. Modes of communication include:

  • Words and sounds that are uttered verbally;
  • Non-verbal communication that is taken in visually;
  • Any physical forms of communication such as touch;
  • Emotions that are exchanged, which are often expressed via a mix of the other forms of communication; and lastly,
  • Holding space for the intuitive nature of communication between 2 human beings.

Discussion/Conclusion

The information presented in this article is not necessarily groundbreaking. As evidenced by the references, a plethora of attempts have been made to understand the PPI. However, deficits still exist in the literature in terms of assimilating the information in a manner that aids in transforming it into something truly teachable. Historically, the topics discussed here have been treated as “the art of medicine” or “soft skills” that cannot necessarily be objectively taught nor measured, while the core knowledge has been the “science.” The deeper that we collectively dive into the intricacies of the PPI, the more evident it is becoming that these concepts of “art” and “science”  are inseparable when discussing the lived human experience. True, there is an art to clinical practice. But the goal of this framework and future works focusing on it is to help show that there is indeed science woven within this art, as well as art intertwined within the science. Thus, a topic such as the PPI needed a framework to facilitate its instruction to both current and future healthcare providers, as structure provides the foundation for creativity, or “the art,” to flourish.

The novel theoretical framework presented here is intended to do just that: to organize the information in a manner that allows it to be standardized across all disciplines. As with the creation of any algorithm, we are cognizant of the line between being reductionist and attempting to simplify the complex nature of helping those in need into some form of “rubric” that can be graded. That is not the intent here, as so much of connecting on a human level is impossible to simplify or turn into a “science” to some degree. Or, to put it more articulately, “the body that one experiences cannot be reduced to the body that someone else measures.”13 So much of the key to improving this facet of medicine exists in the hypothetical margins of our collective “humanness.” That is, developing the vulnerability that acts as the key to unlocking this entire process, as well as incorporating more reflection, not only on this process, but more instances of bringing the humanities into its education using stories and the arts that describe the changes seen in our patients’ lived experiences. The future might even paint a different picture of all the components at play here.

A logical next question would be to ask what the application of this framework looks like in the classroom and in the clinic, as well as if the framework seems to make a difference in terms of outcomes for our patients. Plans specific to the authors are already in the works to explore the clinical effectiveness of approaching the PPI under this lens, as well as outlining what the application would look like in a case scenario. The robustness of the literature review here led the authors to believe both would likely be better suited for forthcoming works. The goal here was to introduce the framework and supporting literature to serve as a launching pad for future research, for improving instruction, and for simplifying clinical practice, while still honoring the complexity of 2 lived experiences intersecting.

FIGURE 2

The Compassionate H.E.A.R.T. Model Operational Definition of Terms

Vulnerability: The interaction between capabilities and risks making up an individual’s wellness-illness status

Authenticity: A shift in attention and engagement and reclaiming of oneself from the way we typically fall into our everyday ways of being.

Knowledge/Advice Seeking: The patient’s search for medically-informed guidance for management of an individual’s health status.

Clinical Knowledge/Expertise: Practitioner proficiency in biomedical calculative competencies such as diagnostic accuracy and protocol efficacy of innumerable health conditions.

Open-Floor Freedom: Purposefully and thoughtfully created metaphoric space, or opportunity for narrative discourse and communion in the form of someone telling someone else something that happened.

Active Listening: The conscious processing of the stimuli being received via the passive process of hearing in order to capture the complete message being communicated.

Understanding: The comprehension or ability to grasp the nature or significance of the thoughts, beliefs, and feelings associated with something.

Emotional Intelligence: The ability to recognize, understand, and manage the emotions in ourselves as well as others.

Validation: A legitimatization process where the listener communicates that the speaker’s thoughts and feelings are not only understandable but also free from judgment.

Empathy: Perceiving, processing, and responding to the suffering of others in order to feel one’s way into the experience of another.

Compassion: An awareness of suffering, sympathetic concern related to being emotionally moved by suffering, a wish to see the relief of that suffering, and a responsiveness or readiness to help relieve that suffering.

Congruence: Mindful genuineness with the capacity to give voice, respectfully and transparently, to the experiences of another.

Rapport: A friendly relationship in which people understand each other well.

Confidence: Faith or belief that one will act in a right, proper, or effective way.

Trust: Assured reliance on the character, strength, ability, or truth of someone or something.

Concordance/Shared decision-making: The patient and the provider listening to one another’s thoughts and beliefs about the issue, negotiating a shared understanding of those beliefs, and coming to an agreement about how to move forward.

Reflection: Critical and conscious thought about one’s behavior and practice, or a careful exploration and evaluation of experience.

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