Storytelling for Kidney Transplant Promotion

(LDKT Stories Trial)

Overseen By Meghan He, BSc

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: University of British Columbia

Disqualifiers: Non-English speakers, Clinical contraindications, others

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: 1

80 Participants Needed

Trial Summary

Do I need to stop my current medications for this trial?

The trial information does not specify whether you need to stop taking your current medications.

What data supports the effectiveness of the treatment Storytelling, Narrative Interventions, Video Narratives for promoting kidney transplants?

Research shows that storytelling can evoke empathy and understanding, which may inspire changes in healthcare practices. Narrative storytelling has been suggested as a way to improve education about living donor kidney transplants, potentially increasing awareness and inspiring more people to consider becoming donors. ^{1 2 3 4 5}

Is storytelling safe for use in promoting kidney transplants?

The research does not provide specific safety data for storytelling interventions, but storytelling is generally considered safe as it involves sharing personal experiences to educate and inspire others. ^{1 2 5 6 7}

How is the storytelling treatment for kidney transplant promotion different from other treatments?

Storytelling for kidney transplant promotion is unique because it uses personal narratives (stories) from donors and recipients to educate and inspire potential donors, rather than relying solely on medical information. This approach helps people understand the emotional and personal aspects of kidney donation, which can encourage more individuals to consider becoming donors. ^{2 5 8 9 10}

What is the purpose of this trial?

This study will examine the effectiveness of first-person storytelling in encouraging patients with end-stage renal disease to pursue Living Donor Kidney Transplant (LDKT). The Living Donation Storytelling Library LDSP is a library of videos from donors and recipients sharing their transplant stories, serving as a narrative-based transplant education resource. This study will investigate if exposure to the LDSP changes patient readiness and motivation to pursue LDKT to ultimately increase the number of donor inquiries and donor evaluations. This study will also test if the LDSP serves as a health-literate and culturally safe education approach that can effectively support racialized communities who have a disproportionately higher need for LDKT.

Eligibility Criteria

This trial is for patients with end-stage renal disease who are considering a Living Donor Kidney Transplant (LDKT). It aims to support racialized communities and address health equity. The study seeks participants open to learning through patient education materials.

Inclusion Criteria

Waitlisted and newly referred kidney transplant candidates at the Vancouver Kidney Transplant Program

Able to provide informed consent

English literate

Exclusion Criteria

Inability to understand English and provide informed consent

Unwilling to disclose information on race or ethnicity

I am not eligible for a transplant due to medical reasons.

Timeline

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Intervention

Participants watch two storytelling videos from the Living Donation Storytelling Library in addition to standard of care patient education materials

1 month

1 visit (in-person or virtual)

Follow-up

Participants are monitored for changes in readiness, motivation, and actions towards pursuing LDKT

3 months

Treatment Details

Interventions

• Storytelling

Trial Overview The effectiveness of storytelling videos versus standard patient education in motivating individuals towards LDKT is being tested. Participants will watch real stories from donors and recipients to see if it influences their readiness for transplant.

Participant Groups

Group I: Experimental Experimental Treatment 2 Interventions

2 storytelling videos in addition to standard of care patient education materials

Group II: Control Active Control 1 Intervention

Standard of care patient education materials

Who Is Running the Clinical Trial?

University of British Columbia

Lead Sponsor

Trials

1,506

Recruited

2,528,000+

Houston Methodist Transplant & Surgery Center of Excellence

Collaborator

Trials

1

Recruited

80+

Findings from Research

A new health literacy intervention, which included a film and motivational interviewing sessions led by dialysis nurses, was positively received by both patients and nurses, indicating its feasibility and acceptability for preparing patients for kidney transplantation.

The intervention fostered meaningful dialogue that enhanced patients' understanding and confidence, although nurses found the motivational interviewing approach challenging, highlighting the need for additional training and support for effective implementation.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Intervening on health literacy by knowledge translation processes in kidney transplantation: A feasibility study. Andersen, MH., Urstad, KH., Larsen, MH., et al.[2022]

References

1. England pubmed.ncbi.nlm.nih.gov

Storytelling for impact: the creation of a storytelling program for patient partners in research. [2023]

2. Netherlands pubmed.ncbi.nlm.nih.gov

Supplementing living kidney transplantees' medical records with donor- and recipient-narratives. [2019]

3. United States pubmed.ncbi.nlm.nih.gov

Narrative-Based Practice. [2021]

4. Netherlands pubmed.ncbi.nlm.nih.gov

Narrating kidney disease: the significance of sensation and time in the emplotment of patient experience. [2018]

5. Canada pubmed.ncbi.nlm.nih.gov

A Digital Library for Increasing Awareness About Living Donor Kidney Transplants: Formative Study. [2020]

6. United States pubmed.ncbi.nlm.nih.gov

Kidney Transplant Evaluation and Listing: Development and Preliminary Evaluation of Multimedia Education for Patients. [2021]

7. United States pubmed.ncbi.nlm.nih.gov

Development and Preliminary Evaluation of IRD-1-2-3: An Animated Video to Inform Transplant Candidates About Increased Risk Donor Kidneys. [2021]

8. Netherlands pubmed.ncbi.nlm.nih.gov

Narratives: an essential tool for evaluating living kidney donations. [2021]

9. United States pubmed.ncbi.nlm.nih.gov

Using Community-Based Participatory Research to Create Animated Videos to Attenuate Disparities in Access to Kidney Transplant Information. [2023]

10. United States pubmed.ncbi.nlm.nih.gov

Intervening on health literacy by knowledge translation processes in kidney transplantation: A feasibility study. [2022]