PM2025: Restoring Broken Trust: Preparing Parents for a Critical Conversation Using Write-read-reflect Narrative Methods

Introduction: Establishing trust requires three components: credibility, caring, and comprehension of the experience of another. In pediatric palliative care (PPC) when parents feel trust is broken, care can be jeopardized. We report a case where proactively offering a Write-Read-Reflect (WRR) narrative session empowered parents to re-establish trust.

Case Description: A 7 year-old boy was diagnosed with a brain tumor. The parents understood the post-treatment LP was "clean". In a telehealth visit the oncologist described the upcoming course of maintenance chemotherapy. The father asked for clarification as the post-treatment "LP was clean". He said they would think about it. Both parents were surprised to receive a letter stating their case was referred to child welfare services. A chance meeting brought these parents to a community PPC organization, Brades' Place (BP). They had not been involved with PPC. BP scheduled an urgent meeting in 2 days with the in-patient PPC team at the same hospital where their son received treatment. BP had not met the family.

At this very same time 3 members of BP were undergoing certification in the WRR Narrative Method with The Narrative Initiative LLC (TNI). BP postulated offering a narrative session to these parents before their meeting might prove helpful. TNI staff felt this was a novel use of WRR and it could be done safely. Parents knew this was a novel usage and consented to participate.

The narrative prompt was: "Please take 3 minutes to write a story about what makes you feel the upcoming meeting might be difficult/challenging, or alternatively, one that makes you feel the upcoming meeting might be positive/uplifting." Parents wrote, read verbatim, and reflected on their stories with BP and TNI. They learned to select qualitative words and reflect them back for clarification. Example: "I heard you say the word frustrated. I know what frustrated means to me but what does it mean to you?" Survey results showed both reported they "definitely agreed" this experience benefits their resilience, benefits their ability to listen, and they will be able to use this experience.

Discussion: Before the meeting parents shared they felt better prepared to articulate their recent experiences with their son's cancer. They could connect some words with their emotions. They could develop concrete goals for the meeting.

During the meeting both parents felt empowered to ask for clarification. "When you say we have choice and control what do you mean by that?" These parents described new confidence in the medical system's desire to understand them and hear them.

Conclusion: These parents reported broken trust. Their WRR narrative experience gave them confidence and they felt empowered to engage the PPC team. The PPC team demonstrated comprehension -- becoming a worthwhile trustee -- and these parents became willing trusters.