20Q: Understanding Clients’ Perspectives to Guide Our Work

Ellen Cohn, Understanding Clients’ Perspectives to Guide Our Work

Dr. Ellen Cohn is a distinguished researcher in occupational therapy. She has published widely in the areas of autism, clinical reasoning, fieldwork education and supervision, and client perspectives of living with or parenting people with disabilities. Dr. Cohn is a Fellow of the American Occupational Therapy Association, an Eleanor Clark Slagle lecturer, and a recipient of the AOTF A. Jean Ayres Research Award.

 

Franklin Stein, PhD, OTR/L, FAOTA

Contributing Editor

Salute to OT Leaders Series

20Q: Understanding Clients’ Perspectives to Guide Our Work

Ellen Cohn, ScD, OTR/L, FAOTA

Why Autism?

1. Can you describe how you became interested in autism?

In college, I worked at a summer camp for children from underserved inner-city communities. I was a swim instructor and was asked to teach a young autistic girl how to swim. She appeared to simultaneously love and fear the water. She communicated with gestures. We spent our first ten days together sitting by the edge of the lake, splashing our hands and feet in the water. I was fascinated by the challenge of trying to understand her experience. I attribute my interest in autism to this first encounter with an autistic person*.

*My choice to primarily use identity-first language (e.g. autistic individual) versus the first-person language (e.g. person with autism) is to acknowledge autistic persons’ preference of identity-first language (Pellicano et al., 2018).

2. What have been your research methods used in investigating autism?

My research focuses on the perspectives of children, adolescents, and families related to personal, contextual, and occupational factors that support or inhibit successful participation in school, at home, and in the community. I am particularly interested in understanding how children and adolescents with disabilities and their families make sense of and attribute meaning to their experiences. Projects have focused on the strategies parents use to promote the social participation of their children with acquired brain injuries, and parental concerns of families with children with disabilities and their perspectives on intervention outcomes.

As a qualitative researcher, most of the research methods that I have used focuses on understanding the subjective experience of autistic people. I have conducted interviews and focus groups with parents of autistic children and led focus groups with school personnel who work with autistic transition-age youth. For the past 20 years, I have collaborated with Dr. Gael Orsmond on numerous projects related to the social experiences of autistic individuals. We have used photovoice methodologies in which we gave disposable cameras to autistic adolescents to explore their perspective of their friendship experience.

Perhaps one of the most innovative methods we have used is an adaptation of Dr. Michael Rich’s Video Intervention/Prevention Assessment (VIA) protocol, (Rich, & Patashnick, 2002) which provides adolescents a means to visually represent their chronic illness. The VIA method asks adolescents to create videos of their illness experiences over 4 to 8 weeks. At the end of each week, participants create personal monologues by speaking directly to the camera about their feelings of living with a chronic condition. We adapted the VIA protocol to understand the friendship experiences of autistic adolescents. Over 4 weeks, participating adolescents generated between 4 and 9 hours of video recordings. We observed that the videos facilitated the adolescents’ understanding of friendships and provided a visual source for reflection on these relationships. In some cases, the adolescents’ parents reported the process itself appeared to serve as a change agent in the adolescent’s friendship experience. In this project, we observed the personal strengths of autistic adolescents that facilitated their friendships and subsequently became excited about developing an intervention that would use these videos to increase social competence and friendship quality. We then developed an intervention we called the VIP Intervention, Videos of Important People, using principles of video-self modeling. The intervention reflects a strength-based approach, reinforcing positive social behaviors as they occur in natural contexts. In the intervention, adolescents created videos of their social experiences with friends; we selected segments of the adolescent’s videos that showed the adolescent engaging in positive social behaviors and reviewed the videos with the adolescents (Orsmond & Cohn, 2015)

In addition to research in autism, I collaborated with an interdisciplinary research team on an NIH funded mixed- methods study exploring the culturally-based explanatory models of health and illness among parents of children with asthma and a VA funded project on hypertension among veterans. Both of these projects focused on racial/ethnic disparities in health and health care. We sought to understand different beliefs about illness and treatment – that is, cultural explanatory models - and the complexity of communication between providers and patients. In both studies, we interviewed patients (Black, Hispanic, and White patients) and health care providers about their explanatory models and audio recorded the patient-provider encounter to explore the relationships between patient preferences, patients’ health literacy, cultural explanatory models, patient-provider communication, and patients’ behaviors. In this work, I analyzed ‘narratives of resistance’ as an interpretive lens to examine how one mother, parenting four children with asthma in poverty, conveyed her identity and strived to achieve control over an unpredictable disease process (Cohn et al., 2009). I also used narrative analysis in the hypertension project (Cohn et al., 2012).

3. How can your research be applied to occupational therapists working with individuals with autism?

One way in which my work has been applied to occupational therapy practice is through the Buddies Exploring Science Together (BEST) Program. I developed this program in collaboration with colleagues working at the Museum of Science (MOS), Boston, Boston Public Schools (BPS), and Boston University. The partnership involves three BPS schools that have classes for autistic students. As a part of the partnership, students from these BPS classes visit the MOS once a week for six weekly, consecutive visits. The overarching philosophy of the BEST Program is to create an inclusive environment within the typical daily atmosphere of the MOS. Rather than host autistic students during a separate time or at a separate location from other MOS visitors, the BEST Program scaffolds students’ visits to support their participation in museum activities along with the general museum field trip population. This approach to inclusion is an alternative to the often-used model of offering early access or after-hours experiences.

Each visit consists of programmatic activities that integrate science content and social interaction, facilitated by occupational therapy students. MOS educators and Boston University occupational therapy students collaborate to design the program activities to support both science learning and social interaction in the naturally occurring community setting of a museum. Each week of the BEST Program, the BU OT students engage the autistic students in an individualized goal-setting process and read customized social stories at their schools prior to getting on the bus to travel to the museum. Social stories help prepare students for an upcoming experience by reviewing what to expect or anticipate. Most interventions for autistic people focus on promoting compliant behaviors or teach social skills that fit into expected social-cultural norms.  Rather than viewing autistic people from a deficit perspective, the BEST Program is designed to support various forms of engagement that reflect the multiplicity of options for acting on and interacting in this world.

4. How can occupational therapists work cooperatively with psychologists, psychiatrists, and special education teachers in working with individuals with autism?

Occupational therapy practitioners have a distinct perspective and valuable skills well suited to collaborate with a range of colleagues in a variety of settings. Occupational therapy practitioners focus on supporting “engagement in meaningful occupations.” We analyze the transaction among the demands of an activity, a person’s abilities, and the context or environment in which the occupation or activity takes place, and then intervene to support participation. The term “occupation” in the profession’s name refers to all the activities that occupy people’s time, enable them to construct an identity, participate as fully as possible in society, and provide meaning to their lives (Cohn, Schell and Crepeau, 2010).  We can work collaboratively with our colleagues by sharing our analysis of occupation and the transaction among factors that impact a person’s engagement in occupation with our colleagues. Together, with our colleagues, we design interventions to address the factors, personal or contextual, that may impact engagement. For example, in an educational setting, we may suggest changes to a classroom seating arrangement to minimize distractions or enhance social interaction.

Current Research

5. What research projects are you currently working on?

I am currently working on a project funded by the U.S. Department of Education (Institute of Education Sciences) entitled: Transition Outcomes of High Functioning Students with Autism: How and When Students Learn the Skills Necessary for Self-Management of Daily Responsibilities. Dr. Gael Orsmond and Dr. Wendy Coster are the PIs of the project. I serve as a Co-investigator. The purpose of this project is to (1) understand the programs and strategies that parents and special educators use to teach students with high-functioning autism spectrum disorders (HFASD) how to manage daily life tasks and (2) examine how the ability to self-manage daily life tasks is associated with successful transition outcomes for students with HFASD. Research has shown that although students with HFASD have similar levels of academic achievement as their peers, they also exhibit significant impairments in their ability to manage daily life tasks, which are a strong predictor of poor adult outcomes. There is a need to better understand the factors that account for the poor transition outcomes of students with HFASD. This study aims to inform the development and refinement of interventions and supports that will facilitate the ability of students with HFASD to self-manage daily life tasks and thus prepare for life after high school.

Background

6. Where did you grow up?

I spent my childhood years in a very small borough (1 mile long by 1 mile wide) on the New Jersey shore. The population of full-time residents was approximately 2,000. During the summer months, the population increased to about 6,000 people, as many people from the New York area had summer homes in the town. The town had one elementary school, with approximately 40 students in each grade. We were bussed to a high school in a surrounding town with a larger population. My mother was a marine-biologist and an early advocate for women in the sciences. My father was an automobile dealer by vocation, but his true passion was photojournalism. He was a “stringer” for the Associated Press and was called in as an extra if there were events happening at “the shore” or “extras” were needed in the city. He always said that an “excellent photo did not need a by-line as the photo should tell the story.” Every Sunday, my paternal grandfather would take the train from the city to the shore. We followed the same routine every week, except during the winter months. The routine included pick-up at the train station at noon, lunch, and then we immediately went to the tennis courts where he would find a mixed-doubles game. He taught me to play tennis and in his later years, after a knee replacement, I had to run for all the shots while he stood in one position and yelled “run!” This childhood occupation has become a lifelong occupation as I still engage in a weekly tennis routine.

7. Where did you complete your college education?

I received my first degree in occupational therapy in 1976 at Sargent College, Boston University. In 1984, I received Education Master’s degree in counseling psychology from Harvard University, Graduate School of Education Counseling and Consulting Psychology, and in 2000 I received an ScD from Boston University, College of Health and Rehabilitation Sciences.

8. When did you become interested in occupational therapy?

In high school, my tennis coach led a movement group for youth with disabilities on Saturday mornings, and I assisted with the group. I enjoyed working with the youth and looked into careers in the rehabilitation field when I applied to college. I applied to study physical therapy and immediately switched to occupational therapy the first week of college, before taking any of my classes. I realized PT focused on physical performance, and I was more interested in a broader perspective of human behavior.

Career

9. What do you think are the best ways to motivate graduate students to become interested in a teaching career at the university level?

There are many opportunities, depending upon the curriculum design and resources at a given university, for graduate students who are interested in a teaching career at the university level. Some programs offer Graduate Assistantships, or Course or Teaching Assistant positions. These positions provide students with an excellent opportunity to learn about the roles, tasks, and responsibilities of teaching. Another powerful motivator is guest lecturing or serving as an adjunct assistant with a core faculty member. Often, former students will develop expertise in a practice area and the opportunity to share their expertise with students can be very gratifying. These experiences provide graduate students or early-career practitioners the opportunity to explore their potential interest in teaching.

10. Who were your mentors in occupational therapy? 

Betty Crepeau: Betty and I have been professional colleagues since 1981 when I was the Clinical Education Coordinator at the Kennedy Memorial Hospital for Children and she was Fieldwork Coordinator at the University of New Hampshire. Since that time, we have worked together planning conferences, editing a curriculum for fieldwork educators, providing feedback to each other on our scholarly work, and, most notably, co-editing the 10th and 11th editions of Willard and Spackman’s Occupational Therapy. We learned early on that we have many common interests, in particular a love of narratives and storytelling. We started sharing drafts of our manuscripts with each other and meeting halfway between Boston and New Hampshire to listen to each other’s stories and provide feedback on our evolving work. Betty has read and critiqued virtually everything I have written. My work has been enhanced by her generosity in listening, reading, and providing challenging, yet thoughtful feedback.

Linda Tickle-Degnan was my dissertation advisor and taught me to appreciate the complexity of theory; that theory is born in practice and must return to practice and that theory development is an on-going process. She motivated me to consider the notion that all of our observations are driven by theory and that it is essential that we strive to be explicit about the tacit theories that we hold so we can test them and examine how they might influence our practice.

Wendy Coster was also on my dissertation committee, a professor in my doctoral program, and then when she became Chair of the OT Dept, was my boss for 20 years. Once I assumed the Program Director role at BU, she mentored me in higher education leadership and administration. Wendy is a clear and logical thinker who motivated me to develop a critical perspective and become what she calls a “positive subversive” (Coster, 2008). She taught me to ask if our practice was truly making a difference, to examine if our theoretical assumptions about change made sense, to consider what and how we were measuring the outcomes of our work with clients, and if we were measuring and documenting what “matters to clients” who seek occupational therapy services. Once I became the Program Director of the EL-OTD program at BU, she mentored me to develop creative solutions to the ever-changing needs in higher education.

Janice Burke and I have been professional colleagues since 1985 when we met at an AOTF event focused on clinical reasoning. Like Betty, Janice also enjoys storytelling and narratives. Janice and I also share a common interest in utilizing a sensory integration perspective in working with children and their families. Over the years, we have collaborated on numerous projects focused on the use of narrative and meaning-making during therapy to explicate the clinical reasoning of the occupational therapist. We also collaborated on projects related to sensory integration, parent-therapist collaboration, and family-centered care, all grounded firmly in an occupational perspective. As I moved into a leadership role in OT education, Janice provided sage advice and insights into the ever-changing context of higher education. Janice has been a generous mentor and has a unique ability to support others to use their strengths. She inspires others to promote the value of occupation in all their work.

11. What positions have you had in occupational therapy?

From 1977 through 1980, I worked as an occupational therapist and clinical education coordinator at the Walter E. Fernald State School, Waltham, Massachusetts. The Fernald State School was a residential program for individuals with intellectual disabilities. From 1980 through 1986, I worked as a pediatric occupational therapist at Franciscan Children’s Hospital and Rehabilitation Center, Brighton, Massachusetts. In this position, I provided assessments and interventions for children with developmental, learning, and emotional disorders and their families. I was also the coordinator of the fieldwork education program.  In the same facility, in 1986, I became the Director of In-service Education. Throughout the late 80s and early 90s, I worked for Occupational Therapy Associates, Watertown, Massachusetts where I utilized a sensory integration perspective to provide intervention.

My first academic position in 1987 was at Tufts University, Boston School of Occupational Therapy. I worked as an Academic Coordinator of Fieldwork Programs and Lecturer in Occupational Therapy until 1999. From 1999 to the present, I work as a professor in occupational therapy at Boston University, Sargent College. I am currently the Program Director of the EL-OTD program and clinical professor in the Department.

12. Can you describe the work you did as an occupational therapy practitioner?

My first job was as an occupational therapist at Fernald State School; an institution for people with developmental disabilities. This was a time prior to the deinstitutionalization movement in the 1960s and 70s and the shift to community-based practice. I worked in the children’s unit and designed interventions to work with direct-care staff to support the children’s engagement in occupation; particularly social activities and activities of daily living. I also worked at a pediatric rehabilitation hospital where I completed differential diagnostic evaluations with children and adolescents as part of an interdisciplinary team. I consulted to classrooms in the day school and co-led groups in classrooms with teachers. I was also a member of an interdisciplinary feeding team. I completed the sensory integration certification process and provided SI intervention in a day school, individually, in groups, and at a private practice.

Future of OT

13. Can you give some examples of potential research projects in occupational therapy?

• What is the range of ways occupational therapy practitioners honor and augment experiences that foster desired engagement for people with neurodiversity? 
• How do predetermined socio-cultural norms and societal expectations influence our interpretations of behavioral action and experience and how do these interpretations inform intervention?     

14. What led you to become a clinical researcher in occupational therapy?

Observing practice and being curious about how to provide interventions that matter for children and families. I wanted to make a meaningful difference and had many questions about our profession.

15. Based on your wide experiences as a researcher, what do you think are the most important personal characteristics of becoming a successful researcher?

Curiosity, the ability to truly listen to others, and critical thinking are important personal characteristics for a researcher.

16. How would you define occupational therapy to a new graduate student?

We support people to engage in the occupations that give their lives meaning.

17. What are the significant qualities that a beginning occupational therapist should have to be successful?

Competence and confidence are essential qualities for all occupational therapy practitioners.

18. What do you think are the most significant trends in occupational therapy in the United States?

From my 2019 Slagle address:

“Society’s views about health are becoming more congruent with the long-standing ideals of occupational therapy. The current reforms to the U.S. health care system that emphasize value-based care provide an opportunity for the profession to highlight its competence. Health care and rehabilitation now value well-being, function, and participation in desired contexts, aspects of human behavior that have always been the constant focus of occupational therapy. Patient- or client-centered practice and patient-reported outcomes have also gained considerable attention in assessing the value of health care (Mroz et al., 2015). Patient centeredness, or attending to what matters to patients, is now valued and viewed as both an outcome and a means to improve health. Health care payment reform initiatives to improve quality are tied to measures and indicators of patient-centeredness as critical outcomes of quality. Providing care that is respectful of and responsive to patient preferences has been a long-standing hallmark of occupational therapy. We are competent in patient-centered care.

These shifting views provide us with an opportunity to demonstrate our competence, and we now have a mechanism to do so. Thanks to the advocacy efforts of the AOTA Federal Affairs Department, in physical medicine and rehabilitation settings, occupational therapy evaluation and reevaluation CPT® codes for reimbursement now require the inclusion of an occupational profile (American Medical Association, 2017). Consistent use of the occupational profile enables us to demonstrate our commitment to patients as collaborators in the therapy process and facilitates patient-centered care. The Improving Medicare Post-Acute Care Transformation Act (2014; Pub. L. 113–185) is another example of a health care evolution that aligns with occupational therapy values. In the past, we have measured intervention by volume in the form of hours, minutes, or days in therapy. We have moved to value-based models in which payment is driven by quality. Function has become the foundation for defining value and quality. Function relates not only to physical function, but to cognitive and psychosocial function as well. Function has always been at the center of occupational therapy, although I would argue that occupational therapy outcomes go beyond function. We now have compelling and rigorous scientific evidence and cost-effectiveness data to provide support for our competence to address our health care system’s greatest needs for people throughout their life course. Health policy researchers Rogers and colleagues (2017) recently analyzed associations between Medicare claims and cost data with spending and readmission rates. The researchers noted, “Investing in occupational therapy has the potential to improve care quality without significantly increasing overall hospital spending” (p. 683). Occupational therapy was the only spending category in which additional spending had a statistically significant association with lower readmission rates for patients with heart failure, pneumonia, and acute myocardial infarction. Rogers and colleagues reported that occupational therapy “places a unique and immediate focus on patients’ functional and social needs, which can be important drivers of readmission if left unaddressed” (p. 668). Stevens and Lee (2018), researchers at the Centers for Disease Control and Prevention, published a study demonstrating that addressing home hazards with the assistance of an occupational therapy practitioner could save our health care system more than $400 million by reducing medically treated falls. Twenty-seven different studies have documented the benefits of the Cognitive Orientation to daily Occupational Performance (CO-OP) approach. This task-oriented problem-solving approach enables people to be actively involved in solving their performance problems and achieving self-identified goals. Studies have documented the effectiveness of the CO-OP intervention for children and adults with a range of conditions (Scammell et al., 2016). These examples are only a glimpse of the plethora of studies that support the range and depth of our competence as a profession. Our competence and ability to excel have never been stronger.”

19. As far as a global practice, where do you think occupational therapy is headed?

We need to explicate the power of occupation to advocate for occupational justice.

Designing interventions that eliminate occupational injustice is a lifelong process for all of us. We must fight for what is best and just for all people, especially people who have been violated and marginalized for so long. Our profession needs to call out injustice when we see it or listen to others who identify injustice when we don’t see it and then make a change. Our occupation justice framework guides us to work toward building environments where each person has access to adequate supports and resources to participate in occupations that are necessary, personally meaningful, and ultimately enable health and well-being.

Summary

20. How would you summarize your significant contributions to occupational therapy?

I quote from the Slagle nomination for 2019:

“Dr. Ellen Cohn is recognized for her significant and sustained commitment to advancing theory and disseminating occupational therapy knowledge by promoting theory-driven, evidence-based, and occupation-based practice nationally and internationally. Her teaching, scholarship, and service have enhanced the understanding of occupational engagement patterns of children and youth, the experiences of parents of children with special needs, research methodologies within occupational science and occupational therapy practice, and clinical reasoning as an element of reflective practice. Dr. Cohn’s work encourages us to listen to an individual’s narrative and reminds us that it is through careful observation and interview, we gain a rich and complete understanding of our client’s abilities and challenges, guiding us to measure occupationally relevant outcomes that reflect client and family perspectives. Dr. Cohn’s career is marked with an insatiable curiosity, a high standard of excellence, and the capacity to think deeply about critical issues in occupational therapy. It moves from fieldwork education at the beginning of her career, to her current focus on participation and meaningful outcomes for adolescents with disabilities and their families. Through her teaching, scholarship, mentorship, and service she has a profound and far-reaching influence on the trajectory of the field nationally and internationally.”

References

American Medical Association. (2017). Current Procedural Terminology: CPT® 2017 professional edition. Chicago: American Medical Association Press.

Cohn, E. S. (2019). 2019 Eleanor Clarke Slagle Lecture—Asserting our competence and affirming the value of occupation with confidence. American Journal of Occupational Therapy, 73, 7306150010. https://doi.org/10.5014/ajot.2019.736002

Cohn, E., Cortes, D., Fix, G., Mueller, N., Solomon, J., & Bokhour, B. (2012). Habits and routines in the daily management of hypertension. Journal of Health Psychology, 17, 845-855. doi: 10.1177/1359105311424471

Cohn, E.S., Schell, B.A.B., & Crepeau, E.B. (2010). Occupational therapy as a reflective practice. In N. Lyons (Ed.), Handbook of reflective inquiry. New York: Springer.

Cohn, E.S., Cortés, D.E., Hook, J.M., Yinusa-Nyahkoon, L.S., Solomon, J.L., & Bokhour, B. (2009). A narrative of resistance; Presentation of self when parenting children with asthma. Communication & Medicine, 6, 27-37.

Coster, W. J. (2008). Embracing ambiguity: Facing the challenge of measurement. American Journal of Occupational Therapy, 62(6), 743-752.

Mroz, T. M., Pitonyak, J. S., Fogelberg, D., & Leland, N. E. (2015). Health Policy Perspectives—Client centeredness and health reform: Key issues for occupational therapy. American Journal of Occupational Therapy, 69, 6905090010. https://doi.org/10.5014/ajot.2015.695001

Orsmond, G. I., & Cohn, E. S. (2015). The distinctive features of a feasibility study: Objectives and guiding questions. OTJR: occupation, participation and health, 35(3), 169-177.

Pellicano, L., Mandy, W., Bölte, S., Stahmer, A., Lounds Taylor, J., & Mandell, D. S. (2018). A new era for autism research, and for our journal. Autism. https://doi.org/10.1177/1362361317748556

Rich, M., & Patashnick, J. (2002). Narrative research with audiovisual data: Video intervention/prevention assessment (VIA) and NVivo. International Journal of Social Research Methodology, 5(3), 245-261.

Rogers, A. T., Bai, G., Lavin, R. A., & Anderson, G. F. (2017). Higher hospital spending on occupational therapy is associated with lower readmission rates. Medical Care Research and Review, 74, 668–686. https://doi.org/10.1177/1077558716666981

Scammell, E. M., Bates, S. V., Houldin, A., & Polatajko, H. J. (2016). The Cognitive Orientation to daily Occupational Performance (CO-OP): A scoping review. Canadian Journal of Occupational Therapy, 83, 216–225. https://doi.org/10.1177/0008417416651277

Slivensky, K., Cohn E.S., Lussenhop, A., & Moscat, C. (2019). The BEST partnership program: Supporting students with ASD by connecting schools, museums, and occupational therapy practitioners. Connected Science Learning, 10, 1 – 16. http://csl.nsta.org/2019/05/the-best-partnership-program/

Stevens, J. A., & Lee, R. (2018). The potential to reduce falls and avert costs by clinically managing fall risk. American Journal of Preventive Medicine, 55, 290–297. https://doi.org/10.1016/j.amepre.2018.04.035