Storytelling and Palliative Care
The Journey by Corey Ingram
Scroll down for Poster Presentation Content and Links for further reading
This year a new collaborative storytelling initiative will be launched in Bruyère's Palliative Care Unit, drawing artistic expertise from an interdisciplinary team to support Patients, Family Caregivers, and Healthcare Providers. The project leads are Dr. Kaitlyn Boese, Bruyère palliative care physician, and Dr. Sarina Isenberg, Bruyère Research Institute (BRI). Ottawa storyteller Kim Kilpatrick is the artistic lead. Also on the team are Dr. Shirley Bush (Bruyère), Madeline McCoy (BRI) as well as Jenny McMaster and Dr. Carol Wiebe (Radical Connections). We are pleased to welcome collaborators Dr. Cory Ingram from the Mayo Clinic and Claudia Hampel, caregiver advisor.
Storytelling exercises have often been used for patients in palliative care units to reflect on and share lived experiences and explore difficult emotions. Storytelling validates feelings of suffering for family caregivers and promotes self-care for health care providers, helping them to process challenging feelings. Providing space for Family Caregivers and Healthcare Providers to reflect on their experiences also promotes engagement and connection. In addition, clinicians who are given the opportunity to read patient and caregiver stories are better prepared to understand patient/caregiver lived experiences and reflect on how to improve patient experiences and quality of care.
Starting this April professional storyteller Kim Kilpatrick will work with patients, Family Caregivers, and Healthcare staff in crafting 55-word stories or poems. The participants may offer their story for analysis and to share with a wider audience. 55 word stories have been used in many projects in medical settings. Dr. Cory Ingram previously used this approach with patients, staff and family members at the Ottawa Hospital. While some may find it challenging to encapsulate a narrative with so few words, the brevity of stories of this length make them powerful.
The activities in this project will be evaluated with both quantitative and qualitative tools. Participants will complete an online post-survey, focusing on perceived usefulness, meaningfulness, and ease of participation. Towards the end of the project Sarina Isenberg will conduct an exit interview with storyteller Kim Kilpatrick. We will also conduct a context analysis seeking out key themes from the stories written. If the storytelling initiative is deemed feasible and acceptable, this will provide the foundation for a larger study testing the effectiveness of such an intervention on improving experiences in Palliative Care Units.
Finally we will share the findings of this project, as well as some of the stories collected, with the wider community through events at Bruyère, the Ottawa Art Gallery and academic and medical conferences. We are very excited to be engaging the visual artist Rachel Gray to interpret the stories adding another dimension to the expression and exploration of the often unheard voices of patients, family members and healthcare staff in end of life care.
Kim Kilpatrick and Cory Ingram will be presenting a poster about the project at the Canadian Association for Health and Humanities Creating Space Conference this April the 13th. See below for the poster content.
Poster Presentation Content
Background
Palliative care improves the quality of life for patients facing serious illness through the treatment of physical, psychosocial, and spiritual symptoms. Storytelling exercises have been used for patients and their family caregivers (FCGs) in palliative care units (PCUs) to reflect, share lived experiences, and explore difficult emotions.1-3 Storytelling initiatives have validated feelings of suffering for FCGs and promoted self-care for health care providers (HCPs).1,2,4 There is limited research exploring the feasibility of storytelling programs in PCU settings and best practices using these initiatives.1,5 This storytelling initiative draws on expertise from our interdisciplinary team of clinicians, caregivers, researchers, and artists to support patients, FCGs, and HCPs on the Bruyère PCU, with the ultimate intention of increasing meaningful activities in palliative care.
Objective
To use a multi-method approach to test the proof of concept, feasibility, and acceptability of storytelling in the PCU at Bruyère.
Timeline
Methodology
Storytelling: A professional storyteller will support patients, FCGs, and HCPs in creating a 55-word story or poem. The participant can offer their story for analysis and dissemination.
Quantitative evaluation: Participants will complete an online post-survey, co-designed with patients, FCGs, and HCPs, focusing on perceived usefulness and ease of participation.
Qualitative evaluation: The professional storyteller will complete an exit interview.
Outcome measures:
1) Content analysis6 to distill the key themes from the stories generated.
2) Descriptive statistics to describe perceived usefulness and ease of participation.
3) Thematic analysis7,8 of the exit interview and field notes.
On 55 Word Stories
The 55-Word Story is a tool which Dr. Cory Ingram has used in past projects. It is a writing tool that helps participants to articulate the essence of what they are hoping to convey. The participant is asked to write freely without attention to spelling, grammar, and perpetual self editing. There are no rules other than to keep only what matters. “Simplify and simplify again.” 9
Data Collections and Analysis
Looking to the Future
With Research Ethic Board approval, storytelling sessions will begin in April 2023. If the initiative is deemed feasible and acceptable, it will create the foundation for an effectiveness study.
Radical Connections and Bruyère are in the process of applying for funding to engage a visual artist who will work with Kim Kilpatrick to interpret the stories told by patients, family caregivers and healthcare providers. Sharing of the stories alongside the presentation of artwork or series of artworks at arts venues, academic and healthcare conferences will serve the need for public education on the importance of the arts for the wellbeing and dignity of patients, particularly those in palliative care.
References
1. Ingram C. Storytelling in medical education, clinical care, and clinician well-being. Archives of Medicine and Health Sciences. 2021;9(2):337-344. doi:10.4103/amhs.amhs_289_21
2. Fogarty CT. Fifty-five word stories: "small jewels" for personal reflection and teaching. Family medicine. 2010;42(6):400-402.
3. Moeke-Maxwell T, Mason K, Williams L, Gott M. Digital storytelling research methods: Supporting the reclamation and retention of indigenous end-of-life care customs in Aotearoa New Zealand. Progress in Palliative Care. 2020/03/03 2020;28(2):101-106. doi:10.1080/09699260.2019.1704370
4. Stanley P, Hurst M. Narrative Palliative Care: A Method for Building Empathy. Journal of social work in end-of-life & palliative care. 2011;7(1):39-55. doi:10.1080/15524256.2011.548046
5. Forner KD. Letting Go: A Writing Exercise and a Discussion. Journal of pain and symptom management. 2020;59(5):1153-1155. doi:10.1016/j.jpainsymman.2019.11.024
6. Krippendorff K. Content Analysis: An Introduction to Its Methodology. Fourth ed. SAGE Publications, Inc; 2019.
7. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology. 2006/01/01 2006;3(2):77-101. doi:10.1191/1478088706qp063oa
8. Braun V, Clarke V. Thematic Analysis: A Practical Guide. SAGE Publications Ltd.; 2021. Accessed 2022-07-24. https://us.sagepub.com/en-us/nam/thematic-analysis/book248481
9. Ingram C and Hampel C. Patient Experience: Storytellers First Edition. 2019.
Acknowledgements
-Thank you to the Ottawa Hospital Patient Partners for their contributions to Corey Ingram and Claudia Hampel’s Patient Experience: Storytellers booklet.
-Thank you to the Bruyère Academic Medical Organization for funding this project.
-Image Left: Cory Ingram, Image Above: Adobe stock