Diabetes in Real LifePublication Exclusive

Power of the theater can enhance the provider–patient encounter

In this issue, Susan Weiner, MS, RDN, CDE, CDN, talks with performing artist and patient advocate Marina Tsaplina and clinical psychologist Kenneth Gorfinkle, PhD, about their work with The Betes Organization helping people with diabetes address the mental and emotional health aspects of their condition through theater and puppetry.

Susan Weiner

What were the unmet needs in diabetes care that led to the founding of The Betes Organization?

Gorfinkle and Tsaplina: First, much of diabetes care has been approached as a “mathematical” problem, leaving aside the subjective and varied experiences of each individual and their diabetes, that exist in unique personal, cultural and social contexts.

Second, the emotional and mental health components of diabetes have only recently come to the forefront. These issues are connected, and both are further exacerbated by the current state of the physician–patient encounter. The relationship between patient and health care provider has never been under as much stress as it is now. This hurts both clinicians, who want to take care of people and by so doing find meaning in their practice, and patients, who want to be heard and understood and, in the best circumstances, be healed. (How we define and understand “healing” and “cure” is a separate topic.)

We wanted to create unique and creative opportunities for both the clinician and the patient to process their experiences and bridge these gaps.

How does The Betes organization address these needs?

Gorfinkle: Through puppetry and metaphor, we narrate this lived experience of diabetes, offering meaning, validation and normalization so people can come away saying, “I’m not alone, and I can do this.” The dramatic process of tension and resolution helps produce catharsis and insight. Our aim is for our work to deepen the traditional doctor–patient encounter, which is a potent locus for healing, and bring dimensionality to the therapeutic setting.

Tsaplina: Art is a research practice. We listen to a broad base of patient and provider experiences through surveys and interviews, identifying the common narrative themes that unite their individual experiences, distilling them into evocative scenes using the art and tools of puppetry and theater. The power of puppetry has the ability to give form to the internal and invisible. How does shame reveal itself in a person’s sense of self and their diabetes? How does that affect self-care? The artist’s role is to inspire in each person a sense of their own humanity and possibility. We do this by focusing on areas of diabetes that are too often silenced.

Theater and puppetry is a seemingly strange solution to this. Why not bring in more mental health workers?

Gorfinkle and Tsaplina: Certainly, all of health care can be best served by integrating state-of-the-art mental health care with continued progress in medical care. However, a theatrical encounter offers a unique opportunity for participants to explore their own consciousness and illness experiences, in a radically different way from standard medical care or even therapy. Theater taps into the use of creativity in a way that allows us to reach larger groups of people while still offering individual attention.

The Betes work fits directly into the emerging field of the health humanities. If we believe that the role of medicine is to control disease processes and care for the illness experience, then the role of the humanities in health care is to foster ways for clinical practice and research to both learn from and inform humanistic disciplines.

At the core of the interdisciplinary field of the health humanities there is an emphasis on the uniquely human dimension of our experience of illness and health. Large proportions of our society seem unaware of or indifferent to these dimensions, and unfortunately our medical system can too often reflect that same ignorance, further propagating stigma and isolation.

Kenneth Gorfinkle, PhD, and Marina Tsaplina.

Images: reprinted with permission.

For example, there is a known link between suicide risk (attempts and ideation) and type 1 diabetes. The task for clinical research may be to find the mechanisms that lead to this correlation. The Betes’ task would be to explore the individual lived experiences of this group of people and find the narratives of fear, loss, grief, hope (and more) that underpin them.

We want to learn how these conditions affect people’s lives and by so doing give validity to their stories. This validation is in itself a necessary therapeutic and empowering process that can lead to greater autonomy.

When the dramatic material we present is aligned with the audiences’ needs and sensitivities, we succeed in creating a cathartic moment, an “Ah-ha! Me too!” reaction in the mind of the observer. “How did you know that’s exactly what I’ve been experiencing? That is me!” Interestingly, in a successful one-on-one psychotherapy session, this also occurs. The act of acknowledging and helping others find the meaning of their illness in community helps to foster well-being. This is what the artistic process offers to the health care space.

So how do you take what a patient or clinician has told you and turn it into a program?

Gorfinkle and Tsaplina: We first identify a sensitive aspect of the diabetes experience, such as “diabetes complications” or “depression” — let’s call them “labels.”

Then through structured interviews, we look at the chosen label from the unique perspectives of the patient, family and provider to elicit the stories that unpack these labels and create theatrical scenes. But, this isn’t our final product. The strength of the work is that the material continuously evolves in real time, with the full engagement of program participants. No two encounters are the same, as no two groups of people are the same. The live performances based on these topics bring into focus irreducible encounters between the person with diabetes and their condition, and their personal, social and medical contexts.

The scenes are short, 15 to 20 minutes, and are followed by a series of continuously developing exercises to engage participants in their own understanding and meaning.

What response have you received to your work so far?

Gorfinkle and Tsaplina: Overall, very positive. For example, this past summer we delivered our teen program to four different diabetes camps across the country for mostly 14- to 17-year-olds. It was a pilot program, but our evaluations showed that from the total group of 62 teens, staff members reported that 71% were either engaged, very engaged or enthusiastically engaged. One teen — a 17-year-old boy who had had diabetes for 16 years — reported that the program “helped me realize how essential diabetic knowledge is to me.”

Zachary Jacobs, MD, of Stony Brook Children’s Hospital and the camp physician reported, “I believe that the majority of adolescent campers who were able to take part in this exercise developed an improved awareness about their personal story and their diabetes. I believe that it began the process to take ownership of their chronic illness and empower themselves in their own care.”

The head nurse at the Clara Barton camp wrote, “Enlightening and connected. The program helped me to better understand what my girls with diabetes feel.”

How can endocrinologists and diabetes providers learn more about The Betes program offerings?

Gorfinkle and Tsaplina: We have our launch event “The Patient Voice 2016: Bridging the Diabetes Gaps” on March 20 in New York City. It is specifically geared to introduce the medical community to The Betes Organization and the role of theater and the health humanities for diabetes care. Further information on the event can be found at http://thebetes.org/projects.

In this issue, Susan Weiner, MS, RDN, CDE, CDN, talks with performing artist and patient advocate Marina Tsaplina and clinical psychologist Kenneth Gorfinkle, PhD, about their work with The Betes Organization helping people with diabetes address the mental and emotional health aspects of their condition through theater and puppetry.

Susan Weiner

What were the unmet needs in diabetes care that led to the founding of The Betes Organization?

Gorfinkle and Tsaplina: First, much of diabetes care has been approached as a “mathematical” problem, leaving aside the subjective and varied experiences of each individual and their diabetes, that exist in unique personal, cultural and social contexts.

Second, the emotional and mental health components of diabetes have only recently come to the forefront. These issues are connected, and both are further exacerbated by the current state of the physician–patient encounter. The relationship between patient and health care provider has never been under as much stress as it is now. This hurts both clinicians, who want to take care of people and by so doing find meaning in their practice, and patients, who want to be heard and understood and, in the best circumstances, be healed. (How we define and understand “healing” and “cure” is a separate topic.)

We wanted to create unique and creative opportunities for both the clinician and the patient to process their experiences and bridge these gaps.

How does The Betes organization address these needs?

Gorfinkle: Through puppetry and metaphor, we narrate this lived experience of diabetes, offering meaning, validation and normalization so people can come away saying, “I’m not alone, and I can do this.” The dramatic process of tension and resolution helps produce catharsis and insight. Our aim is for our work to deepen the traditional doctor–patient encounter, which is a potent locus for healing, and bring dimensionality to the therapeutic setting.

Tsaplina: Art is a research practice. We listen to a broad base of patient and provider experiences through surveys and interviews, identifying the common narrative themes that unite their individual experiences, distilling them into evocative scenes using the art and tools of puppetry and theater. The power of puppetry has the ability to give form to the internal and invisible. How does shame reveal itself in a person’s sense of self and their diabetes? How does that affect self-care? The artist’s role is to inspire in each person a sense of their own humanity and possibility. We do this by focusing on areas of diabetes that are too often silenced.

PAGE BREAK

Theater and puppetry is a seemingly strange solution to this. Why not bring in more mental health workers?

Gorfinkle and Tsaplina: Certainly, all of health care can be best served by integrating state-of-the-art mental health care with continued progress in medical care. However, a theatrical encounter offers a unique opportunity for participants to explore their own consciousness and illness experiences, in a radically different way from standard medical care or even therapy. Theater taps into the use of creativity in a way that allows us to reach larger groups of people while still offering individual attention.

The Betes work fits directly into the emerging field of the health humanities. If we believe that the role of medicine is to control disease processes and care for the illness experience, then the role of the humanities in health care is to foster ways for clinical practice and research to both learn from and inform humanistic disciplines.

At the core of the interdisciplinary field of the health humanities there is an emphasis on the uniquely human dimension of our experience of illness and health. Large proportions of our society seem unaware of or indifferent to these dimensions, and unfortunately our medical system can too often reflect that same ignorance, further propagating stigma and isolation.

Kenneth Gorfinkle, PhD, and Marina Tsaplina.

Images: reprinted with permission.

For example, there is a known link between suicide risk (attempts and ideation) and type 1 diabetes. The task for clinical research may be to find the mechanisms that lead to this correlation. The Betes’ task would be to explore the individual lived experiences of this group of people and find the narratives of fear, loss, grief, hope (and more) that underpin them.

We want to learn how these conditions affect people’s lives and by so doing give validity to their stories. This validation is in itself a necessary therapeutic and empowering process that can lead to greater autonomy.

When the dramatic material we present is aligned with the audiences’ needs and sensitivities, we succeed in creating a cathartic moment, an “Ah-ha! Me too!” reaction in the mind of the observer. “How did you know that’s exactly what I’ve been experiencing? That is me!” Interestingly, in a successful one-on-one psychotherapy session, this also occurs. The act of acknowledging and helping others find the meaning of their illness in community helps to foster well-being. This is what the artistic process offers to the health care space.

So how do you take what a patient or clinician has told you and turn it into a program?

Gorfinkle and Tsaplina: We first identify a sensitive aspect of the diabetes experience, such as “diabetes complications” or “depression” — let’s call them “labels.”

Then through structured interviews, we look at the chosen label from the unique perspectives of the patient, family and provider to elicit the stories that unpack these labels and create theatrical scenes. But, this isn’t our final product. The strength of the work is that the material continuously evolves in real time, with the full engagement of program participants. No two encounters are the same, as no two groups of people are the same. The live performances based on these topics bring into focus irreducible encounters between the person with diabetes and their condition, and their personal, social and medical contexts.

The scenes are short, 15 to 20 minutes, and are followed by a series of continuously developing exercises to engage participants in their own understanding and meaning.

PAGE BREAK

What response have you received to your work so far?

Gorfinkle and Tsaplina: Overall, very positive. For example, this past summer we delivered our teen program to four different diabetes camps across the country for mostly 14- to 17-year-olds. It was a pilot program, but our evaluations showed that from the total group of 62 teens, staff members reported that 71% were either engaged, very engaged or enthusiastically engaged. One teen — a 17-year-old boy who had had diabetes for 16 years — reported that the program “helped me realize how essential diabetic knowledge is to me.”

Zachary Jacobs, MD, of Stony Brook Children’s Hospital and the camp physician reported, “I believe that the majority of adolescent campers who were able to take part in this exercise developed an improved awareness about their personal story and their diabetes. I believe that it began the process to take ownership of their chronic illness and empower themselves in their own care.”

The head nurse at the Clara Barton camp wrote, “Enlightening and connected. The program helped me to better understand what my girls with diabetes feel.”

How can endocrinologists and diabetes providers learn more about The Betes program offerings?

Gorfinkle and Tsaplina: We have our launch event “The Patient Voice 2016: Bridging the Diabetes Gaps” on March 20 in New York City. It is specifically geared to introduce the medical community to The Betes Organization and the role of theater and the health humanities for diabetes care. Further information on the event can be found at http://thebetes.org/projects.