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ARTZ @ Jefferson

ARTZ Philadelphia

ARTZ @ Jefferson Logo

Program Website
Year:
2018
State:
Pennsylvania
Winner Status:
Applicant
Program Type:
Awareness
Target Population:
Providers and Caregivers
Setting:
School/College

Program Description

It is too often the case that the voices of people living with dementia and their care partners are not heard or attended to: by their care providers or by their communities. The prevailing narrative surrounding dementia is one of loss, disability and incapacity. The mission and programs of ARTZ Philadelphia offer an alternative narrative, building on what is there, rather than focusing on what has been lost. ARTZ @ Jefferson, an initiative piloted by ARTZ Philadelphia at Thomas Jefferson University in Philadelphia, establishes a new paradigm that acknowledges the unique expertise of people living with dementia diagnoses and their primary care partners. In this one-of-a-kind program, medical and other health professions students learn what it means to live with dementia by getting to know people whose lives have been shaped by dementia-related illnesses — as people. They meet through facilitated interactions around art; get to know each other through multiple one-on-one encounters between mentors and students over a semester, sometimes in the museum galleries where they first met. Facilitated breakout sessions engage both students and mentors in remaking the predominant hierarchy (care providers as active authorities, patients as passive subjects) to restore mentors’ sense of empowerment and students’ empathy.

Creativity

Mentoring programs in which patients share their illness-related experiences with students to augment the students’ learning are not unusual in American medical schools today. The patients’ experiences of their illnesses are widely understood to enhance students’ observational and clinical insights. To our knowledge, however, there are currently no other arts-based health mentoring programs in which extended personal encounters between students and their mentors begin in the neutral, imaginatively rich territory of art, where students view their future mentors as insightful, creative human beings — first and foremost — whose illnesses are irrelevant in this space of mutual discovery. The person-centered emphasis of the program overall is unique as well: mentors and students get to know each other by sharing their life stories and by learning to navigate decisions about what to share, when, based on their gradual formation of mutual trust and empathy.

Leadership

ARTZ @ Jefferson’s implementation at Jefferson through the collaboration of the director of ARTZ Philadelphia and the Senior Vice Provost for Student Affairs at Jefferson, was motivated by the desire to establish a new model for enhancing patient self-dignity and self-empowerment while building future care providers’ capacity for careful, deep listening; tolerance of ambiguity and “not knowing”; and resilience of empathy. Research has shown conclusively that by medical students’ third year, their level of empathy has been nearly depleted. (Jefferson is the leader in much of that research.) The Jefferson/ARTZ collaborative team were invited to present early goals and outcomes at the Royal Society for Public Health in March 2016, at the 1st International Research Conference on Arts and Dementia. We will be presenting again at a medical humanities conference at Stanford Medical School in April 2018. And we have begun discussions with other medical schools interested in the model.

Sustainability

Thomas Jefferson University partially funded ARTZ @ Jefferson’s pilot in 2016-2017 with in-house monies. Jefferson was the lead recipient of a grant from the Pew Center for Arts & Heritage for an expansion of the pilot program in Fall 2017. This grant continues through 2019 and we are seeking future sources of funding for a program that started with six students and mentors in 2016 and now engages as many as 24 students and 24 mentors every semester. Student affiliations have expanded from just the medical school to include occupational therapy undergraduate and graduate programs; nursing programs; pharmacy programs; public health masters programs; and other health professions programs. Students, faculty and administrators have become promoters of the program and its impact, as have advocacy organizations such as the Philadelphia Corporation for Aging and the Penn Memory Center. ARTZ Philadelphia is a 2017 Family Caregiver Alliance awardee due to this program.

Replicability

We are currently in conversation with a medical school in another part of the country that wishes to adapt it for their own institution. As part of this process, Jefferson and ARTZ Philadelphia will share with colleagues at this new institution our collaborative processes, the challenges we have encountered, and the ways in which we are learning to address those challenges. ARTZ Philadelphia has created a curriculum for the program that draws on both ARTZ Philadelphia’s general programmatic methodologies and on pedagogical strategies developed especially for our work at Jefferson. Each institution adopting the program’s model will differ in its internal culture and thus the program will take on new attributes as it moves to new locations. However, the unique core of the program — its emphasis on arts-based interactions, mentor empowerment, and person-centered storytelling — will remain front and center as the program leaders serve as advisors to others.

Results/Outcomes

The outcomes of the program are best articulated by the students and mentors who have experienced it. “My mentor and I developed a relationship with a depth beyond my initial expectations. She freely shared her experiences caring for her husband and encouraged me to ask every question I had, so I learned a lot about very personal aspects of the patient and caregiver experience.” Salena C., 1st year medical student “I was not prepared for one of the most spectacular experiences I have ever experienced. The experience with my student has blown me away. I know she is special but I am beginning to believe that what is really special is the program; it is spectacular because it creates an atmosphere that fosters the connection. It has brought JOY to my life at a time when I had given up on having any JOY.” Diane C., first-time mentor