Narrative Health Using Story to Explore Definitions of Health and Address Bias

in Healthcare EmmaLee Pallai, MFA

AIM Understanding your Community’s SDOH* To develop a program addressing health disparities in

healthcare utilizing story and intentional listening.

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Patient Story (edited for length) It’s my past that has came back up. When I thought that door was shut, and I dealt with it all. . . . It was coming back up around the Holidays. Always the holidays I would go through this feelings of loss hope. Because of a lot of things I went through (mentally, physically, and emotionally) So I will pick out one from the many things that happen to me while I was growing up. So one was when my mom and dad split up, and I had to go live with my grandpa. A lot of things happen while living with him. Though the one that hurt most was having to stay in a Catholic boarding school Because my grandpa did not want to raise me. He wanted his freedom. So for grade school to Jr high school, I was there. While there I got into a lot of fights because I am a half breed. And the way the boarding school try to change me (into the white man’s way of life). Not to long hair, not to speak our language, not to believing our higher power, and so on. And when holidays come I would be one of the two kids still there. Never being with my family, or relative. This is why I don’t like holidays so much. Then not knowing my own language, to speak it, then all the fight with others, even my own cousins, and so on. This is why I don’t like talking about my past because I go through so many feeling. Tough!! *Social Determinants of Health (SDOH)

Benefits Learner • Teaches intentional listening • Improves health communication • Facilitates learning from lived experiences

• Everyone is a patient, everyone is a learner • Re-engages health providers in the human aspects of

healthcare • Promotes wellness and reduces burnout

Patient • Gain a better understanding of our community by listening

(honoring individual stories and experiences). • Empower patients to speak without fear or anxiety of

diagnosis or treatment plan by creating safe environment and focusing on the story and how it’s told.

America has one of the largest health disparities in the world.1 In Minnesota there are persistent health inequalities along lines of race, economic status, age, sexual identity, geography, and disability.2 How do we work with our communities to find solutions?

The Problem

CUHCC Clinic The University of Minnesota’s Community-University Health Care Center is a Federally Qualified Health Care Center located in the Phillips Neighborhood in Minneapolis. We work with the underserved in the region.

Participants: Medical Students and Residents; Pharmacy Residents; Masters in Social Work students; Doctorate of Nursing Practice students; Pre-med undergraduate students; CUHCC patients; Case Managers; Pharmacy Preceptors

Methods Two separate workshops are offered:

Interprofessional Learners Only:

• Literature (Poem, essay, fiction) is read ahead of time • Learners discuss the reading in context of story and health • Learners write based off reading and structured prompts

Learner and Patient Writing:

• A piece of writing written by a patient or learner from a prior session is read aloud and discussed.

• Structured writing time occurs, wit patients having the option to pair up with a learner.

• Learners that are paired focus on listening to the story and working with the patient. Those not paired write their own stories.

• Participants read their stories and others comment on the piece as a story, not offering medical advice or judging the actions of the narrator.

Incorporating Creative Writing Pedagogy • Using structured writing exercises allows the writer to move

beyond the reflection questions most common in training, the ‘this is how I feel’ essay.

• Utilizing elements of the craft of writing and pedagogical underpinnings allows for both reflection and the benefits the field offers, such as increases in observational skills and an understanding of the various syntactical ways in which a story can be told and information conveyed.8

Authentic Voices Readings come from the actual groups of people represented in our community. Readings from the Disability Poetics movement, Native American writers, written by women, members of the LGBTQIA community, and others are vital to Narrative Health. CUHCC Patient writing is also included, as are stories by those in the health professions.

Intervention

Background The World Health Organization (WHO) defines health as "a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity.”3

Per the Center for Disease Control (CDC), “Health disparities are preventable differences in the burden of disease, injury, violence, or opportunities to achieve optimal health that are experienced by socially disadvantaged populations.”4

But How do our communities define health and the place of the clinic in their health? Health inequities arise from disparities in the social determinants of health and connected to race, sexual orientation, disability, age, and even gender. Holding a community accountable to a definition of health created outside the community adds another barrier to health and shifts responsibility from the social determinants to the individual 5. A bridge is needed between and within communities. Storytelling is unique in that it brings in contextual relations between various factors important to the storyteller to provide information about perceptions of equality6. With many of our community coming from cultures focused on story as a main modality of communication, storytelling and, more importantly, story listening is a way to access definitions of health, how the clinic is viewed in the realm of health, and how to partner for health 6. Story is an especially useful tool in historically underserved populations 7.

Defining Narrative Health Narrative Health asks you to thoughtfully examine who is telling a story and how they are telling it with a focus on how and who is defining health, listening intentionally, and the mutual sharing of stories.

I think it [Narrative Health] helped decrease the differing power dynamics between patient and provider

– CUHCC Learner

[Narrative Health] reminds me to see the patient as a person and refocus my philosophy of care to be patient-centered.

During our busy schedule of learning about clinic procedure and expanding clinical knowledge, it is easy to lose sight of end

goal which is the patient’s health and experience in health care. – CUHCC Learner

Literature Cited 1. Hero JO, Zaslavsky AM, Blendon RJ. The United States Leads Other

Nations In Differences By Income In Perceptions Of Health And Health Care. Health Aff (Millwood). 2017;36(6):1032-1040.

2. Available at: http://www.health.state.mn.us/divs/chs/healthequity/ahe_leg_report_020414. Accessed September 18, 2017.

3. http://www.who.int/about/mission/en/

4. https://www.cdc.gov/minorityhealth/chdireport.html

5. Reutter L, Kushner KE. 'Health equity through action on the social determinants of health': taking up the challenge in nursing. Nurs Inq. 2010;17(3):269-80.

6. Banks J. Storytelling to access social context and advance health equity research. Prev Med. 2012;55(5):394-7.

7. Lee H, Fawcett J, Demarco R. Storytelling/narrative theory to address health communication with minority populations. Appl Nurs Res. 2016;30:58-60.

8. Kerr L. More than words: applying the discipline of literary creative writing to the practice of reflective writing in health care education. J Med Humanit. 2010;31(4):295-301.

Question: What are the Ten Most Important Parts of Your Health Journey?

Patient Answer:

1. How drugs hurt you 2. How they spread through out [sic] the family 3. How much they [your family] can hurt you 4. Working to recovery as one [family] 5. Be thankfully [sic] for her [my daughter] today 6. The feeling[s] you go through 7. At death door 8. Coming back 9. Knowing every day could be your last 10. Coming together as one to another

A patient wanted to discuss what was most important to him-- his community, his relationship with his neighbor, and how this is important to his wellbeing. – Case Manager re: her client’s participation at a workshop

Community-University Health Care Center