O2048: Narrative Brades' Place Promotes Understanding and Listening Between Parents and Siblings of Pediatric Palliative Care Patients

Background: The Narrative Initiative LLC's Write-Read-Reflect (WRR) narrative exchange process has successfully enhanced reflective listening skills of healthcare providers since 2017. Participants also note meaningful validation and decompression by sharing stories in a space structured space. Narrative Brades' Place is a collaboration between a community pediatric palliative care organization and TNI to determine if our Write-Read-Reflect narrative process is perceived to be meaningful to parents and siblings of pediatric palliative care patients.

Methods: Families associated with Brades' Place volunteered to participate in an introductory WRR narrative experience in their homes. Two certified TNI Narrative Facilitators led this 90 minute experience involving a short introduction followed by a 3 minute writing exercise on a prompt developed specifically for families. Each member then read their story verbatim. Facilitators asked the author two questions: How did it feel to write that story? How did it feel to hear your story read out loud word for word? Facilitators then asked the rest of the family 2 questions: How did it feel to listen to that story? What did you hear in that story that makes you want this person in your family -- on your team? Family members were asked to complete a short validated TNI Narrative Participant survey. They could also sign a consent to leave their stories with the facilitators.

Results: Three families participated including 6 parents and 4 siblings over the age of 12. 10 survey were returned for a 100% rate of return. Three Likert-scored questions were analyzed for medians using Microsoft Excel (5 = strongly agree; 1 = strongly disagree). Results showed: "Benefits my personal sense of wellness and resilience" -- median 5; "Benefits my ability to listen more effectively" -- median 5; and "I can apply what I practiced -- median 5." NVIVO Software version 1.6 (QSR International) was used to analyze qualitative data and determine themes parents and siblings learnings and applications of learning they felt they took away from their narrative experience. 26 comments were listed under "Learnings." Of these, 23 (88%) coded to 6 themes: promotes understanding (7), value of reflecting language (4), Listening (3), wellbeing & resilience (3), and writing (3). 22 comments were listed under "Applications of learnings." Of these, 18 coded to 6 separate themes: Promotes understanding (5), use in personal & family life (5), listening (2), wellbeing & resilience (2), words & language (2), and writing (2).

Conclusion: This pilot project demonstrated both parents and siblings felt this experience enhanced their understanding of each other, and gave them a new reflective listening skill to hear each other better. Sharing stories about challenging and joyful experiences in a structured and safe space is a meaningful and valuable experience for families of pediatric palliative care patients.