Community + UCSF Mount Zion Awards 2023

Mount Zion Health Fund

Poetic Medicine for Grief: Creating Safe Space for Diverse Stories of Loss

Proposal Concept: Length = 1-2 page Status: 

   A Proposal for Building Racially-Tailored Bereavement Programs in Two Mount Zion/SF BIPOC Communities

Based on its innovative Poetic Medicine model, the UCSF/Mount Zion MERI Center for Education in Palliative Care (https://meri.ucsf.edu/) will partner with Sandy Stokes, RN, & the Chinese American Coalition for Compassionate Care (https://www.caccc-usa.org/) and Dr. Clyde Oden, Jr, & the San Francisco African American Faith-based Coalition (https://sfaafbcoalition.org/) to build, operate, evaluate, sustain, and disseminate racially-tailored Poetic Medicine for Grief services for Mount Zion/SF Chinese American and African American communities.

 

NOTE on Terminology: We appreciate the challenge of writing about race, bias, and racism as we strategize to promote health equity.  We submit this proposal with the understanding that race is a cultural construct. In this MZHF proposal, based on consultation and feedback from DEI experts at UCSF (including Sarah Nouri, MD, Associate Chief for DEI in the Division of Palliative Medicine [DPM]) and the lived experiences of our community partners, we will use the term “Chinese American” to refer to people who self-identify as Chinese-American or Chinese.  We will use the term “African American” to refer to people who self-identify as African American or Black.  Additionally, we refer to our efforts to create racial affinity groups for Poetic Medicine sessions as “racially-tailored Poetic Medicine for Grief.”  In this process, we look forward to learning more about how best to discuss and write about race and racism in healthcare.  As part of her work as the Associate Chief for DEI in the DPM, Dr. Nouri will provide ongoing DEI review and consultation to MERI and its partners throughout the project period.  Additionally, Chinese American and African American Community Advisory Boards will be invited to help guide racial and social service aspects of this project.  Finally, we use the term “Mount Zion/SF community” to identify UCSF patients and San Francisco neighbors who are part of the Chinese American and African American BIPOC communities with whom MERI is partnering in building bereavement services.

 

1. Applicant/s name; title; UCSF Mount Zion academic affiliation; Community Partner affiliation (if applicable)

 

Michael W. Rabow, MD, Professor of Medicine and Urology, Director of the UCSF/Mount Zion MERI Center for Palliative Care Education;

Ms. Sandy Chen Stokes, RN, MSN, Founder and Executive Director, the Chinese American Coalition for Compassionate Care (CACCC);

Dr. Clyde Oden, Jr, Assistant Director, AC Care Alliance, and MERI liaison to the San Francisco African American Faith-based Coalition (SFAAFBC)

 

2. Contact information: address, email, phone 

 

Michael W. Rabow, MD

The UCSF/Mount Zion MERI Center

1545 Divisadero St, 4th Floor

San Francisco, CA 94115

Mike.Rabow@ucsf.edu

415-215-4904

 

3. Project Title

 

Poetic Medicine for Grief: Creating Safe Space for Diverse Stories of Loss

A Proposal for Building Racially-Tailored Bereavement Programs in Two Mount Zion/SF BIPOC Communities

 

4. Project start date and duration (earliest start date is December 1, 2023)

Start date 7/1/2024

Duration: 2 years (Project period 7/1/2024 – 6/30/2026)

 

5. Estimate of total budget required for project; total amount requested from MZHF; total amount per year if multiyear; if partner, provide total amount for each partner

Estimate of total program budget: $350,000 over 2 years (includes $50,000 from the Rita and Alex Hillman Foundation for an associated Helen Diller Family Comprehensive Cancer Center clinical research project on racial affinity groups for Poetic Medicine for Grief, led by cancer center nurses, launching January 1, 2024.  MERI was one of only 9 programs nationally awarded a grant through the Hillman Foundation's Emergent Innovation Program)

Total amount requested from the MZHF: $150,000/year for 2 years (= Total of $300,000)

Total amounts per partner

- CACCC: $50,000 during year 1

- SFAAFBC: $50,000 during year 2

- MERI: $100,000/year during years 1 and 2 (= Total of $200,000)

 

For details, please see the attached Budget and Budget Justification

 

6. Brief Project Description (including the following elements):

 

  • List of Goals (now with the addition of Program Details for each goal)

 

Overall Objective

To promote health equity as an academic/community collaboration between the UCSF/Mount Zion MERI Center and the CACCC and the SFAAFBC by developing racially-tailored bereavement services (“Poetic Medicine for Grief” [PMG] for BIPOC communities) that are feasible, sustainable locally, and disseminatable nationally.

 

(1) Identify, train, and support (practically, intellectually, emotionally, and financially) a cohort of PMG facilitators from the Mount Zion/SF Chinese American and African American communities.  Facilitators will participate in all aspects of the project, including customization of the racial-affinity PMG groups, and will be paid for their work. Facilitator training will be influenced by the experiences and best practices of Narrative Medicine Facilitator training programs at OSHU and Columbia University.

 

Facilitator Recruitment

Goal recruitment: 4 self-identified Chinese American and 4 self-identified African American facilitators

Prerequisite background (1 or more of the following):

-Personal bereavement experience: bereaved >2 years

-Poetry experience (i.e. full-time, part-time, or amateur poets)

-Group facilitator experience (clinical or non-clinical settings)

For Chinese American facilitators only: conversationally fluent in Cantonese or Mandarin

Facilitators will work in pairs (i.e. 2 Chinese American facilitators for each Chinese American PMG group)

 

Facilitator Training

Facilitator training includes a minimum time commitment of 7 hours and includes:

- Participating in an original MERI Poetic Medicine session (1 hour)

- Debriefing the observed session with experienced MERI Poetic Medicine Facilitators (1 hour)

- Didactic/Group Practice Session on “Facilitating Poetic Medicine: Holding space, Creating Safe Space, and Witnessing” (2 hours)

- Co-facilitate a MERI Poetic Medicine session along with an experienced facilitator (1 hour)

- Debrief the co-facilitated session (1 hour)

 

UCSF Learner Facilitator Apprentices

- Interested UCSF learners (students, housestaff, fellows) from medicine, nursing, social work, or chaplaincy who self-identify of any race may participate in the facilitator training activities

 

 

 

(2) Offer racially-tailored PMG programs in the Mount Zion/SF Chinese American and African American communities.

 

Racial-tailoring (customization) of PMG Sessions (2 hours)

- Discussion of themes of bereavement for Chinese Americans or African Americans, with the support of academic and community group DEI experts and the MERI team

- Selection of poems

- Selection of writing prompts

- Development of other resources

 

Participant Recruitment

- Participants are bereaved (self-identified as grieving the death of a loved one, no time limitation)

- Community recruitment orchestrated by CACCC and the SFAAFBC based on their respective prior successful recruitment strategies

- UCSF recruitment orchestrated by MERI among bereaved at UCSF and By the Bay Health (UCSF’s affiliated hospice)

- Participants self-identify as Chinese American or African American

 

Session Logistics

- Facilitator pair planning session (1 hour per PMG group series)

- 3-session series over 1 month (with 6 PMG groups available over a 6-month period)

- Group size 6-15 participants

- Depending on space available, interested participants can repeat the program

- 1 hour session length

- On Zoom

- 2 facilitators per each PMG group. With 2 pairs of facilitators in each racial group, facilitators will be expected to work with 3 groups over the 6-month implementation period

- Self-identified Chinese American or African American UCSF Apprentice Facilitators may join the relevant racially-tailored PMG group.  UCSF learners of other races may join original (non-racial affinity) MERI Poetic Medicine groups

 

Facilitator Debriefing & Support

-Facilitator pairs will debrief with the MERI team after each 3-session series (1 hour)

-The MERI team will be available for additional debriefing and support throughout the project period

-All facilitators will meet with the MERI team at the end of the implementation period for a final group debrief (2 hours)

 

Total Facilitator Time Commitment = 20 hours

- 7 hours training

- 2 hours customization

- 2 hours planning by facilitator pair

- 6 hours session facilitation (2 3-session groups)

- 3 hours debrief & support

 

 

 

(3) Rigorously evaluate the impacts of racially-tailored PMG groups on BIPOC participants via a mixed methods approach, including the pre/post administration of validated quantitative surveys on being seen, heard & understood, grief, mood, and social connection, as well as the use of qualitative poetry analysis of the work created in PMG sessions.

- Rigorous, comprehensive evaluation is central to this proof-of-concept, pilot innovation

- Two core analyses:

(A)   Pre/post course validated surveys. Questionnaires to assess the impact of the PMG groups on safety and bereavement outcomes have been chosen based on the strength of validation, length, and availability in English, Cantonese, and Mandarin (see Table below).   All bereaved impact data will be controlled for participant demographic characteristics (age, gender, race, education, income) as well as specifics of the bereavement scenario (relationship with the deceased, cause of death, time since death, other bereavement services received).  Survey collection will be accomplished before and after the 3-session PMG series for each of the racial affinity groups as well as, for comparison, in 6 original MERI Poetic Medicine groups (participants of various races in the ongoing MERI Poetic Medicine program).

Research Outcomes, Proposed Validated Surveys, and Survey Validation

Grief Outcome

Survey

# of items

Validation Reference

Grief Intensity

PG-13-Revised

13

Prigerson HG, Boelen PA, Xu J, Smith KV, Maciejewski PK. Validation of the new DSM-5-TR criteria for prolonged grief disorder and the PG-13-Revised (PG-13-R) scale. World Psychiatry. 2021 Feb;20(1):96-106.

Isolation/Loneliness

The De-Jong Giervald scale

6

De Jong Gierveld J, Van Tilburg T. The De Jong Gierveld short scales for emotional and social loneliness: tested on data from 7 countries in the UN generations and gender surveys. Eur J Ageing. 2010 Jun;7(2):121-130.

Hope

Herth Hope Index

12

Herth K. Abbreviated instrument to measure hope: development and psychometric evaluation. Journal of Advanced Nursing. 1992;17(10):1251-1259.

Depression

PHQ-9

9

Kroenke K, Spitzer RL, Williams JB. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med. 2001 Sep;16(9):606-13.

Anxiety

GAD-7

7

Löwe B, Decker O, Müller S, Brähler E, Schellberg D, Herzog W, Herzberg PY. Validation and standardization of the Generalized Anxiety Disorder Screener (GAD-7) in the general population. Med Care. 2008 Mar;46(3):266-74.

Belonging

Feeling Heard & Understood Scale

4

Edelen MO, Rodriguez A, Huang W, Gramling R, Ahluwalia SC. A novel Scale to Assess Palliative Care Patients' Experience of Feeling Heard and Understood. J Pain Symptom Manage. 2022 May;63(5):689-697.e1.

Spiritual Well-being

FACIT-SP12

12

Bredle J, Salsman J, Debb S, Arnold B, Cella D. Spiritual Well-Being as a Component of Health-Related Quality of Life: The Functional Assessment of Chronic Illness Therapy - Spiritual Well-Being Scale (FACIT-Sp) Religions. 2011;2(4):77–94.

Resiliency

Brief Resilient Coping Scale

4

Sinclair VG, Wallston KA. The development and psychometric evaluation of the Brief Resilient Coping Scale. Assessment. 2004 Mar;11(1):94-101.

 

(B)   Thematic analysis of the Poems.   To identify major content themes and emotional valence, poems produced by all consenting PMG group participants will be collected and analyzed using thematic analysis, with reviewers blinded to author individual identity and racial group.

- Additional evaluations will assess project feasibility, acceptability, the success of customization, and the experience of facilitators, facilitator apprentices, and participants.  Data sources include:

 

(A)  Process measures for

- facilitator recruitment, training, and customization activities

- participant recruitment and attendance

(B)  Study entry participant survey including demographics and the bereavement scenario

(C)  Exit interviews (with Zoom transcription) of

- facilitators (end of training, end of program)

- participants (end of program)

(D)  Exit surveys (using basic 5-point Likert scale) of

- participants assessing level of group safety, sense of community, and racial appropriateness

- facilitators assessing level of comfort and preparation

 

 

 

(4) Sustain PMG services in the two Mount Zion/San Francisco BIPOC communities after the MZHF+Commmunity project period.

- In order to maintain improvements in health equity, sustaining the PMG programs by  MERI, the CACCC, and the SFAAFBC is key.

- Poetic Medicine is a core element of MERI’s current and future offerings.  This is supported by a combination of private philanthropy and research grants.

- Additionally, MERI is organizing faculty in the UCSF Division of Palliative Medicine in the establishment of the “DPM Narrative Medicine program,” which will serve as the academic home for Poetic Medicine and serve as an ongoing source of faculty support, clinical work, and research.

- Both community partners have expressed an interest in adding bereavement services to their ongoing offerings, as well as a desire by CACCC to direct current fundraising efforts to support this work.

- As part of the work of this proposed grant, the MERI team and our community partners will develop/refine resource lists for bereavement services in the respective communities, for use for bereaved who are approached to participate in the PMG program but prefer other types of bereavement services.  This resource list will be maintained moving forward by MERI, CACCC and the SFAAFBC.

- Based on the learnings from the racially-tailored PMG project, MERI will produce a comprehensive PMG Facilitator’s Guide that can be used for training and orientation of new PMG facilitators in in Mount Zion/SF communities in the future.

- MERI will continue to monitor and support these community PMG programs as part of its ongoing collaborations with each organization.

 

 

 

(5) Disseminate successful strategies for hosting PMG groups to healthcare, social service, and bereavement programs regionally and nationally.

- The PMG program is beginning with the Mount Zion/SF Chinese American and African American communities based on the strength of MERI’s current relationships with partners Sandy Stokes/CACCC and Dr. Oden/SFAAFBC.  Our plans for dissemination are to expand initially to other local racial and minoritized groups (including Latino/a, Indigenous, and LGBTQ+) and then nationally to all types of BIPOC and vulnerable communities.

- Core to this proposed project is the production of a PMG Facilitators’ Guide

- The guide will include three main sections: (1) recommendations for facilitator training (including facilitator recruitment, training in small group leadership skills, and the basics of bereavement); (2) recommendations for running PMG groups (including time management, sample scripts, sample poems, and sample prompts); and (3) recommendations for customizing PMG for BIPOC communities (including examples for Chinese American and African American PMG affinity groups).

- The guide will be publicized via academic conferences and journals in palliative care and grief, as well as in lay and social media by MERI.

- The guide will be housed electronically on the MERI website.

 

 

(6) Create training opportunities for UCSF learners (students, residents, fellows) to improve their facility with and commitment to understanding race and racism in healthcare and engaging in service to vulnerable communities. While this program will serve all students, it provides a unique experience for self-identified BIPOC learners.

- UCSF learners from the Schools of Medicine and Nursing, and Programs in Social Work and Chaplaincy will be invited to serve as PMG “Facilitator Apprentices” in order to observe both the PMG bereavement intervention, but also the customization of PMG for BIPOC communities

- To preserve the safety possible with racial affinity groups [Lewis], learners will join groups based on self-identified race, with Chinese American and African American learners joining the appropriate racial affinity group and learners identifying as other races (including Whites) joining existing MERI Poetic Medicine groups.

 

 

(7) Further the development of the academic field of Poetic Medicine [Bowman, Gerber], building on MERI’s national leadership and co-authorship of the seminal paper “Poetry as a Healing Modality in Medicine: Current State and Common Structures for Implementation and Research,”published in 2022 in theJournal of Pain and Symptom Management [Kwok]. 

- The development of racially-tailored PMG facilitator trainings as well as the operation of the racially-tailored PMG groups will be described for the academic healthcare audience via conference presentations and journals.

- The research findings from the pre/post analysis as well as the poem thematic analysis will be shared via conference presentations and research papers.

 

  • Project Timeline

This 2-year project will focus on PMG bereavement services for the Mount Zion/San Francisco Chinese American community during Year 1 and then for the African American community during Year 2.

Other than application to the UCSF IRB at the beginning of the project period and finalization of the PMG Facilitator’s Guide at the end of the project period, the project timeline for each year is as follows:

Months 1-3:          Creation of a relevant Community Advisory Board

                             Facilitator recruitment and Training

                             Development of community-based bereavement resource lists

Month 3:               PMG customization for racial affinity groups

                             Advertising and enrolling PMG group participants

Months 4-9:          Offering the 3-session PMG group monthly for 6 months

                             Ongoing survey data collection

                             Ongoing facilitator support

Months 10-12:      Research analysis (quantitative and qualitative)

                             Academic conference and journal dissemination

                             Lay media and social media dissemination

                             Finalization of community PMG sustainability plans       

 

 

 

  • Summary of healthcare-related needs being addressed

 

“You learn how much grief is about language,

the failure of language and the grasping for language.”

- Chimamanda Ngozi Adichie

Grief will always be prolonged, as long as injustice is prolonged.

- Tashel Bordere, Ph.D

In prior, foundational work previously supported by the Mount Zion Health Fund, the UCSF/Mount Zion MERI Center has made more than 5,238 Poetic Medicine contacts with participants from around the world (in 362 workshops, between April 1, 2020 and June 30, 2023).  Importantly, among a convenience sample of 127 current participants in MERI’s Poetic Medicine program, 99% report improved well-being and 95% report less loneliness.  One participant explained: “Our poetry hour has grown on the zoom squares into a safe and sacred space.  Writing poetry through 2 years now of being part of the poetic medicine community is the discovery of our own stories, sharing them and having them received so lovingly. Many of us began not believing we were poets. Perhaps one of the most important things poetic medicine delivers is the discovery that we all have the power to heal through creative arts.”  As an instrument for palliation in the face of suffering, Poetic Medicine for Grief (PMG) serves bereaved patients by creating safe space for the expression of grief in a community of others. 

 

Participants have learned how to listen carefully and connect with others who are suffering, and through this process of listening and connecting, to heal their own pain and suffering.  PMG, in particular, promotes healthy bereavement in the context of self-expression and a supportive community.  Participants from MERI’s current Poetic Medicine “Loss, Losing, and Loosening” sessions have reported PMG to be among the most helpful bereavement resources they have encountered.  One commented: “I know that my healing through grieving the loss of my wife was made hopeful and productive because of our fabulous Loss, Loosing and Loosening gathering every Tuesday.” 

 

Fundamentally, MERI is committed to promoting racial equity in bereavement services.  Research and expert opinion suggest that “racial affinity groups” allow for full emotional and cognitive experiences for BIPOC and promote safety among participants from minoritized groups, including in healthcare settings [Blackwell, Lewis]. Lewis wrote about racial affinity groups in healthcare education in the New England Journal of Medicine: “In a space without White people, BIPOC participants can bring their whole selves, heal from racial trauma together, and identify strategies for addressing structural racism.”  Our experience and data suggest that at least half of current Poetic Medicine participants might prefer groups that are racially-specific (racial affinity groups). In a survey of more than 46 current MERI Poetic Medicine participants internationally, from a wide variety of races and ethnicities, more than 93% were “likely” or “very likely” to recommend Poetic Medicine to someone dealing with grief and, importantly, the majority (56.5%) suggested they would be “likely” or “very likely” to attend a group which was racially specific.  PMG should be offered to racial affinity groups allowing for customization for bereaved of different races.  Safety in groups can be promoted further with linguistically-concordant group facilitators. 

 

Based on the MERI Center’s more than 3-year experience helping to develop the field of Poetic Medicine and the ongoing work of our community partners to promote health and healthcare access within their respective BIPOC communities, the proposed “racially-tailored Poetic Medicine for Grief” program will address four key and related healthcare needs. 

(1)   People facing grief suffer significant morbidity and mortality [Ennis, Gerber].  Despite the academic leadership of UCSF, in Mount Zion/SF communities, comprehensive palliative care services, generally, and, in particular, bereavement services are limited. Locally and nationally, these limited bereavement services typically are provided by hospice organizations and some religious groups, but only infrequently in healthcare institutions.  

(2)   Grief is a fundamentally human experience, but it is also inextricably cultural and racialized [Silverman, Bonnano].  BIPOC suffer grief “disproportionally” with increased exposure to death, worse grief outcomes, and scant representation in research [Sharpe, Jones-Eversley, Falzarano, Wilson]. While grief is universal, services for the bereaved are not immune to the inequities of structural racism [Rosenblatt, Granek].  Multiple causes (including healthcare financing, historical development, mistrust, language discordance, and structural racism) have resulted in a paucity of bereavement services for these communities [Sharpe, Jones-Eversley, Falzarano, Wilson].  BIPOC populations suffer higher morbidity/mortality and have more limited access to racially/linguistically-appropriate bereavement services [Sharpe, Jones-Eversley].  Currently at UCSF and in the Mount Zion/SF community, racially appropriate bereavement services are severely limited, with most grief support programs having been developed for white people and with limited access to available services in the language spoken by the bereaved with low English proficiency.  In the Mount Zion/SF area and across the country, BIPOC communities need space for their grief [Blackwell].

(3)   We seek to develop a sustainable and disseminatable bereavement support program that is developed via community & academic (clinical) partnership, evaluated rigorously, and disseminatable in a reliable fashion.

(4)   Finally, healthcare learners (in medicine, nursing, social work and chaplaincy) have an inadequate understanding that the roots of health inequities lie in systemic racism, a limited education in the unique challenges of promoting health among marginalized populations, and essentially no current training in supporting healthy bereavement in underserved populations [Lewis, Chen, Rabow].  UCSF learners can potentially graduate from training with an unrealistic understanding of the needs and opportunities of service in marginalized communities.  These UCSF learners (including Mount Zion-based housestaff in General Medicine, Women’s Health, Pediatrics, Radiation Oncology, Neurology, Dermatology, and Otolaryngology) will be able to join the Poetic Medicine for Grief programs as “facilitator apprentices,” matching them to the appropriate racially-tailored PMG groups.  White learners can participate in existing (non-racially-tailored) MERI Poetic Medicine groups. This education program fits well with current anti-oppressive curricular innovations at UCSF [Lewis].

 

REFERENCES

 

Blackwell, K. Why people of color need spaces without white people.  The Arrow.  Aug 9, 2018.

 

Bonanno GA, Papa A, Lalande K, Zhang N, Noll JG. Grief processing and deliberate grief avoidance: a prospective comparison of bereaved spouses and parents in the United States and the People's Republic of China. J Consult Clin Psychol. 2005 Feb;73(1):86-98.

 

Bowman, T. Giving grief words: The power of naming and storytelling. Grief Matters: The Australian Journal of Grief and Bereavement. 2017; 20, 1.

 

Chen CL, Gold GJ, Cannesson M, Lucero JM. Calling Out Aversive Racism in Academic Medicine. N Engl J Med. 2021 Dec 30;385(27):2499-2501.

 

Ennis J, Majid U. ‘Death from a broken heart’: a systematic review of the relationship between spousal bereavement and physical and physiological health outcomes. Death Stud. 2021; 45: 538–51.

 

Falzarano F, Winoker H, Burke RV, Mendoza JA, Munoz F, Tergas A, Maciejewski PK, Prigerson HG. Grief and Bereavement in the Latino/a Community: A Literature Synthesis and Directions for Future Research. Health Equity. 2022 Sep 14;6(1):696-707.

 

Gerber K, Brijnath B, Lock K, Bryant C, Hills D, Hjorth L. 'Unprepared for the depth of my feelings' - Capturing grief in older people through research poetry. Age Ageing. 2022 Mar 1;51(3):afac030.

 

Granek L, Peleg-Sagy T. The use of pathological grief outcomes in bereavement studies on African Americans. Transcult Psychiatry. 2017 Jun;54(3):384-399.

 

Jones-Eversley SD, Rice J 2nd. A call for epidemiology and thanatology to address the dying, death, and grief pipeline among Blacks in the United States. Death Stud. 2022;46(1):140-147.

 

Kwok I, Keyssar JR, Spitzer L, Kojimoto G, Hauser J, Ritchie CS, Rabow M. Poetry as a Healing Modality in Medicine: Current State and Common Structures for Implementation and Research. J Pain Symptom Manage. 2022 Aug;64(2):e91-e100.

 

Lewis L, Cribb Fabersunne C, Iacopetti CL, Negussie-Retta G, McBride D, Irving P, Marbin J. Racial Affinity Group Caucusing in Medical Education - A Key Supplement to Antiracism Curricula. N Engl J Med. 2023 Apr 27;388(17):1542-1545.

 

Rabow MW, Huang CS, White-Hammond GE, Tucker RO. Witnesses and Victims Both: Healthcare Workers and Grief in the Time of COVID-19. J Pain Symptom Manage. 2021Sep;62(3):647-656.

 

Rosenblatt PC. Researching grief: Cultural, relational, and individual possibilities. J Loss Trauma. 2017;22(8):617–630.

 

Sharpe TL, Iwamoto DK, Massey JM, Murphy Michalopoulos L. The Development of a Culturally Adapted Pilot Intervention for African American Family Members of Homicide Victims: A Preliminary Report. Violence Vict. 2018 Aug;33(4):708-720.

 

Silverman GS, Baroiller A, Hemer SR. Culture and grief: Ethnographic perspectives on ritual, relationships and remembering. Death Stud. 2021; 45(1):1–8.

 

Wilson DT, O'Connor MF. From Grief to Grievance: Combined Axes of Personal and Collective Grief Among Black Americans. Front Psychiatry. 2022 Apr 28;13:850994.

 

  • Name(s), title(s), agency/department/division(s) of individuals who will lead the project, with brief background information relevant to ability to accomplish the project activities

 

Ms. Sandy Chen Stokes, RN, MSN, is the Founder and Executive Director of the Chinese American Coalition for Compassionate Care (CACCC). Sandy has focused much of her career and volunteer activities on end of life care, elder care, public health, and mental health issues in the Chinese American community. For her work with the CACCC, in 2008 Sandy was one of 15 nationally to receive the American Cancer Society’s Lane Adams Award. She was one of 10 in the nation to receive the 2011 AARP Inspire Award. Sandy was presented with the 2017 Compassionate Care Innovator Award for her extraordinary role in improving the quality of advance care planning and palliative care in California at the Coalition for Compassionate Care of California. Sandy is a member of the advisory board for the Chinese Health Initiative Project at El Camino Hospital in Mountain View, California.

 

Dr. Clyde Oden, Jr, is the Assistant Director of AC Care Alliance.  He has served as a Senior Pastor in the African Methodist Episcopal Church in Southern California for nearly 25 years.  His career in ministry overlapped with his serving as a healthcare executive, where for 33 years, he served as an administrator and ultimately as President and Chief and Executive Officer at the Watts Health Foundation, Inc., in Los Angeles.  His career highlights also include practicing clinical optometry and serving as a faculty mentor to doctoral students at Payne Theological Seminary in Wilberforce, Ohio.  He has six earned degrees. As a preacher, teacher, and business leader, Dr. Oden has been at the intersection where health status, economic inequality, and social justice have been societal issues.   Dr. Oden will serve as the liaison between MERI and the San Francisco African American Faith-based Coalition (21 Black churches dedicated to improving social justice), to help identify one or more individual faith-based Black churches committed to collaborating with the racially-tailored Poetic Medicine for Grief project (during project Year 2).

 

Redwing Keyssar, RN, is MERI’s Director of Patient and Family Education and the developer and co-lead of MERI’s three current Poetic Medicine offerings.  She is a published poet and palliative care author.  Redwing was the driving force behind the development and publishing of MERI’s academic paper on Poetic Medicine published in 2022.

 

Gayle Kojimoto is the coordinator of the MERI Center, co-lead of MERI’s current Poetic Medicine offerings, co-Chairperson of the DEI Committee in the UCSF Division of Palliative Medicine, and a poet herself.

 

Michael W. Rabow, MD, is the founding Director of the MERI Center, Medical Director of Palliative Care at the Helen Diller Family Comprehensive Cancer Center at UCSF, Associate Chief of Education in the UCSF Division of Palliative Medicine, and an award-winning poet (https://med.stanford.edu/medicineandthemuse/events/paul-kalanithi-essay-contest.html).  Mike was the senior author on the Poetic Medicine academic paper.  He is fellowship-trained in education research and evaluation.

 

 

  • Note which of the six MZHF values the project embodies

 

The UCSF/Mount Zion MERI Center was founded in 2018 as an instrumental part of the history and values of the Mount Zion campus. The MERI Center works with the clinical programs at Mount Zion and its office is located on the Zion campus, within the Division of General Internal Medicine.  The proposed Poetic Medicine for Grief program embodies the Jewish values at the core of the Mount Zion Health Fund and updates the history of how these values are manifest at UCSF and in the Mount Zion/SF community. 

• The Poetic Medicine for Grief program promotes social justice (Tikkun Olam) as it begins to correct the harms of structural racism inherent in bereavement services developed for white communities and in providing racially-appropriate bereavement services to members of two major under-served Mount Zion/SF BIPOC communities. 

• The Poetic Medicine for Grief program is about service (Avodah) as it creates novel services and brings the scientific rigor and potential to disseminate healthcare innovations of an academic medical center to two major under-served and vulnerable local communities. 

• The Poetic Medicine for Grief program seeks to help build community (Kehilah), utilizing the concept of racial affinity groups to promote emotional/spiritual safety for members of Mount Zion/SF BIPOC communities facing grief.

• The Poetic Medicine for Grief program will engage UCSF learners as “facilitator apprentices,” exposing these learners to the complexity, truths, collegiality, and unique opportunities of healthcare practice in under-served communities (Limud u’Manhigut).

• The Poetic Medicine for Grief program is innovative (Hidush), building on the nascent field of Poetic Medicine and customizing it for a BIPOC, vulnerable, and under-served community.  Understanding and promoting the learnings from this program is key to the success and significance of this project.

• The Poetic Medicine for Grief program is founded on the principle of compassion (Rahamin) with the intent to promote the dignity and healing of those facing grief in the context of structural racism and today’s harsh economic and social environment.

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Full Proposal: New Prompts 1-9

1. Specific aims

Overall Objective: To promote health equity as an academic/community collaboration between the UCSF/Mount Zion MERI Center and the CACCC and the SFAAFBC by developing racially-tailored bereavement services (“Poetic Medicine for Grief” [PMG] for BIPOC communities) that are feasible, sustainable locally, and disseminatable nationally.

 

 

To accomplish this, we propose the following 5 specific aims:

  1. To develop, implement, and evaluate the recruitment, training, and support of 2 cohorts of PMG Facilitators for Chinese American and African American PMG affinity groups.
  2. To tailor each of 2 racial affinity PMG groups to the racially-specific needs of their participants, including around poem choice, poem prompts, and session themes, and to offer the PMG groups to bereaved, racial affinity cohorts from the Mount Zion/SF Chinese American and African American communities.  
  3. To evaluate the feasibility of racial affinity PMG groups, analyze themes common in the poetry produced, and assess the PMG groups’ impact on the bereavement outcomes of participants using validated, self-reported pre/post measures and qualitative analysis.
  4. To sustain racially-tailored PMG services in the Mount Zion/SF Chinese American and African American communities.
  5. To disseminate locally to other minoritize groups and then nationally the PMG program, including the role of racial affinity groups, via the production and distribution of a PMG Facilitator’s Guide, as well as via academic conferences and healthcare journals.

(Please see also Question 6 above: List of Goals)

 

 2. Anticipated benefit for underserved or vulnerable communities in San Francisco

Our project explores grief services specifically focused on the experiences, needs, language, and poetry of BIPOC bereaved, recognizing that to create the safe space necessary for the bereaved, many individuals may require the emotional and cultural safety of racial affinity groups. We envision both healthcare and non-healthcare benefits.  As described above, we anticipate 4 key healthcare benefits to local vulnerable communities from the development of racial affinity groups for PMG.  Furthermore, 3 additional benefits of the PMG program will serve Mount Zion/SF vulnerable communities directly or indirectly.

 

Direct Local Healthcare Benefits

(1) Expanding bereavement services for Mount Zion/SF Chinese American and African American people facing grief.  This expansion includes both the bereavement support resource lists to be developed by MERI and its community partners, as well as the added services of the innovative PMG program.

 

(2) Improving the quality of bereavement services by developing racially-tailored services that we expect to improve safety and efficacy of the bereavement support provided by PMG. 

 

(3) Sustaining PMG programs in the Mount Zion/SF Chinese American and African American communities to bring ongoing benefits to these communities suffering grief “disproportionately.”

 

(4) Improved healthcare learner training, with the expectation that at least some proportion of these learners will go on to practice locally and benefit our local communities directly with their service.

 

(For further details on these direct healthcare benefits, please see also Question 6, above: Summary of healthcare-related needs being addressed)

 

Additional Local Benefits

(1) Participants in the PMG program will be invited to share their poetry publicly (online, in anthologies, and in academic presentations), receiving local and national recognition for their work

 

(2) PMG group Facilitators will receive training in facilitation and will be paid for their time.

 

(3) In addition to spreading PMG services to other BIPOC local communities, dissemination of the PMG program will center the work of our local partners on a national scale and will offer our partners the potential benefits of collaboration with a world-class academic medical center.

 

3. How the project addresses UCSF Mount Zion priorities and compelling San Francisco healthcare needs

 

The MERI Center was created in 2018 with the generous support of the Mount Zion Health Fund and with the help of Mount Zion clinical and academic leaders.  Over the years since, the MERI Center has grown even more closely aligned with the values and priorities of the MZHF.  Beginning with our commitment to palliative care, the MERI Center now conceptualizes its work on palliative care and wellbeing as key for communities, not just clinicians.  Clinical issues around serious illness and death are, inevitably and fundamentally, also social justice issues.  With the MERI Center conceived of by the MZHF, born and raised on the Mount Zion campus, and steeped in the traditions and deepening DEI commitment of the MZHF and UCSF, it is not a coincidence that our proposed project embodies all 6 of the Jewish values of the MZHF and the historic Mount Zion culture (see details above).

 

Our project to develop racially-tailored bereavement services with and for two Mount Zion/SF BIPOC communities embodies this relationship between palliative care and healthcare for vulnerable populations—promoting palliative care (in this instance, bereavement support) in underserved communities.  Over the last few years, MERI developed an internationally-successful Poetic Medicine program and now we turn our focus back to our Mount Zion/SF communities to improve the health of our patients and neighbors in the Chinese American and African American communities. We believe our proposed strategy of racial affinity groups for PMG not only will promote healthy communities but also will advance health equity.

 

In expanding our work from our original focus on palliative care education to a broad commitment to promoting health and resiliency across vulnerable communities, MERI developed the close partnerships with the Sandy Stokes of the CACCC and Dr. Clyde Oden of the AC Care Alliance that are at the foundation of our current proposal. In the setting of health inequity (disproportionate grief and grief complications), this project promises to bring 4 direct healthcare benefits to our Mount Zion/SF under-served Chinese American and African American communities as well as to UCSF healthcare learners (see details in Question 2, above).

 

4. Description of partnership (or the intentions to build toward meaningful engagement with community partner), including type, history and duration

 

Through numerous prior collaborations, MERI has built close relationships with both of our partners in the proposed PMG project. 

 

Sandy Stokes, RN, MSN, Founder and Executive Director of the Chinese American Coalition for Compassionate Care, began working with Redwing Keyssar, RN, many years before Redwing became MERI’s Director of Patient and Family Education and the developer of MERI’s three current Poetic Medicine offerings.  MERI and the CACCC formally collaborated beginning in 2020 on various project around promoting advance care planning (ACP) in the Chinese American community.  Importantly, the MZHF helped support a video project that was a collaboration between the CACCC and MERI to promote culturally- and linguistically-tailored ACP interventions for Chinese American patients at UCSF/Mount Zion’s Division of General Internal Medicine. ACP completion for Chinese American patients increased from a baseline of 36.9% to 52.4% within 2 years (starting lower, but finishing higher than the rates for Whites).  The project produced 6 ACP videos for the CACCC website, including 2 featuring MERI’s Redwing Keyssar.  Most recently, in the context of development of this proposal, MERI has begun working closely with Gary Lee, MD, the current Chair of the CACCC.

 

In an ongoing serious illness project with Glide Church beginning in 2021, MERI had the good fortune to meet Dr. Clyde Oden, Assistant Director of the AC Care Alliance.  The AC Care Alliance focuses on advance care planning in African American churches and underserved communities across California and its work dovetailed beautifully with MERI’s palliative care education focus.  We partnered to orient, educate, and train Glide congregational members to identify church and Tenderloin community members in need of palliative care clinical and social services.  Dr. Oden now serves as a liaison between MERI and the San Francisco African American Faith-Based Coalition to coordinate with one or more individual African American churches interested in promoting bereavement services in their communities and participating with MERI and Dr. Oden in the PMG project beginning in Project Year 2.

 

 5. How the community partner's experience and expertise was integrated into proposal development

 

After MERI initially presented the basic concept of racially-tailored Poetic Medicine for Grief groups to Sandy Stokes and others at the CACCC and to Dr. Oden, we all have been working closely together on the project to submit the Initial Proposal and then the Full Proposal.  As part of discussions with Dr. Oden, it became clear that the PMG project was more closely aligned with the mission of the SFAAFBC (rather than AC Care Alliance) and we continued developing the proposal with Dr. Oden serving as a liaison between MERI and the SFAAFBC.  

 

MERI and its partners have collaborated in every aspect of planning, including identifying needs, current bereavement resources, cultural differences, most appropriate language and labels, and the finances of the project.  Given her expertise around bereavement issues for Chinese Americans in the Bay Area, Ms. Stokes provided clarity about the requirements for linguistic concordance for PMG groups and about recommended racial terminology.  Additionally, her knowledge about the tendency for bereaved Chinese Americans to be concrete and the formality of traditional Chinese poetry informs our plans around PMG customization for Chinese American groups.  Dr. Lee has already identified key Bay Area Chinese American artists interested in this project, prompting the commitment of all partners to create Community Advisory Boards to help direct the PMG programs.  Dr. Oden has been a key partner in the use of appropriate language in the proposal as well as sharing his intimate knowledge of the workings and finances of African American churches in SF.  Both partners have focused on addressing the expected challenges of PMG participant recruitment within each of their communities, including the concept of local television advertising or videos.

 

6. Roles and responsibilities of each partner (Please note: we are not seeking to fund partnerships that are based on a transactional [e.g., vendor] relationship.)

Excited by the plans to continue our work together, MERI, the CACCC, and Dr. Clyde Oden, Jr, (as liaison with the SFAAFBC) have all collaborated closely in this proposal and look forward to working together over the next many years.  Fundamentally, the PMG program is designed to take advantage of the unique strengths and experiences of each of the three groups.

 

Preparation

During the proposal preparation phase, all 3 partners collaborated to produce and revise both the initial and final proposal (see Question 5 just above).  Additionally, all partners solicited commentary and suggestions from members of our respective organizations.

 

Project Period

We three partners have a detailed plan for getting the work done successfully during the implementation of the project.  Specifically, each community partner will be primarily responsible for finding interested facilitators for the relevant racial affinity groups.  MERI will work with each of the Community Partners to customize the PMG series for their racial group.  Each of the 3 organizations will participate in finding potential participants.  MERI will be primarily responsible for overall leadership of the project, for facilitator training, for all aspects of evaluation and research, for the production of the PMG Facilitator Guide, and will lead dissemination activities.  Given the serial nature of the PMG schedule, the learnings from Year 1 (with the CACCC) will inform the progress of Year 2 (with the SFAAFBC).  All partners agree that the submitted budget reflects this distribution of effort.

 

Ongoing PMG Activities

MERI will lead the production of academic reports for conferences and journals, with review and revision by our community partners.  Each of the community partners will take the lead in sustainability plans, including their own fund-raising and determining the size/scope of ongoing bereavement services.

 

7. Requested grant period (e.g., start date of December 1, 2023 or later and duration of project)

7/1/2024 – 6/30/2026

 

8. Upload Budget pdf in your own format, to include: total proposed project budget; total amount requested from MZHF; for 1-3 years with partner: amount per year for each partner. Include justification and line-item breakdown of revenue and expenses, including individual project team members' percent effort

 

Attached, please find a detailed Budget for MERI, as well as a Budget Justifications including a description of the use of funds by community partners.

 

9. If project includes community partner/s, also upload the following for each community partner:

 

From CACCCC and SFAAFBC

  • Current year total agency budget (specify budget dates), with line item breakdown of revenue and expenses and staff FTE commitments
  • Board of Directors List

 

From Dr. Oden: Letter of support

Comments

Excited to study how poetic medicine may assist in the bereavement process in the Black and Chinese communities. 

As part of the MERI Center team and leader of Poetic Medicine workshops, I hope to have the chance to expand our successful and important work into underserved communities in the Bay Area.

Interested Readers:  as of 9/14, we have now posted our full proposal (without the final budget/justification).  Looking forward to you commments and suggestions.  Best, Mike

Excited both for this program to be offered to participants and to learn about its impact from the evaluation methods proposed so we can think about how to improve future such interventions!

From Ramona Galardi, Poetic Medicine participant: 

I have attended several online sessions of Poetic Medicine for Grief over a couple of years, after the loss of my husband to cancer.
Despite being a therapist with 30 years experience and having worked through a lot of my grief, the support and community provided here was invaluable.  Being able to express and share my feelings as they transformed, the highs and lows, the unexpected triggers found in unexpected places..
 
I have written several poems during the heart-warming sessions, so generously facilitated by Gayle, Redwing seeing the warm faces of others in a similar situation, all helped to feel heard, witnessed, safe to express and speak my pain.  All helped and continues to help the settling of the emotional roller-coaster, not always welcome in other circles, even family!
 
Furthermore, some of these poems were accepted on an open call in London and were exhibited in shop windows over the last 2 summers in Kensington and Chelsea for their Art Week annual events.
 
These are the 2 poems written during ‘Poetic Medicine for Grief’ included in this year’s London Art Week.
 
I feel very grateful to the immense work and support provided by Redwing and Gayle.

So touched to hear what has been possible in community... and then to have what was able to be shared in a small, safe community be able to echoed in a large (city-sized) community multiplies private impacts into social ones.

This is a fantastic proposal to support Black and Chinese communities in bereavement. I am excited about the collaborations with community-based organizations CACCC and AC Care Alliance and look forward to seeing the results! 

Gary Lee, Chair of the CACCC, forwarded some beautiful comments he received when he shared our proposal with some of the members of the CACCC.

Here's one:

"Browsing this proposal, I am very impressed at what you are involved in. Poetic medicine! sounds so fancy, humane, and certainly very meaningful. I think many of us in the first-generation Chinese-American community don’t have access to bereavement support programs or don’t even know there is such a thing existing. This proposal seems very academic and I don’t have any other comments except sincere appreciation."

 

Thank you.  We are very much looking forward to serving (and learning how to serve best) Chinese Americans who may not have previously experienced the simple power of poetry and community to allow healing in grief. Access matters.  Meaning matters.

 

 

 

 

Another connection Gary Lee made when sharing our proposal...

Wendy Lew Toda is an artist who is Chinese American.  She created beautiful and powerful work around the Monterey Park shootings (the deadliest shooting in the history of LA, January 21, 2023, a gunman killed 11 people at a Lunar New Year Festival).  Here is an LA Times piece about her and her work in Tajibi eggshells:

https://www.latimes.com/california/00000187-0687-d7bc-ab87-b6f7fe410000-123

Inspiring to learn of this amazing way into and through grief via art in the Chinese American community. 

 

 

To our proposal followers and commentors: our deep gratitude for your help in designing and crafting our submission.  If funded, we look forward to ongoing collaboration.

Today's version includes final revisions to the PMG narrative, including additions to the Facilitator Training plan, the creation of Community Advisory Boards, MERI's receipt of the Hillman Grant, the ongoing collaboration with Gary Lee, MD, Chair of CACCC, and the robust role of Dr. Sarah Nouri in reviewing and guiding around issues of Diversity, Equity, and Inclusion.

All my thanks,

Mike