Expressive Writing for Resilience in Adult Pediatric Oncology Survivors and Their Caregivers (2018-2019)

Background

Despite successful treatment of childhood cancer, the emotional effects are lasting. Studies have shown that adult survivors of pediatric cancer are more likely to experience a myriad of physical and psychological late effects of their illness. The effects of childhood cancer are not limited to the children themselves: parents and caregivers report significant emotional distress.

Expressive writing is prompt-guided intervention designed to promote healing from trauma and emotional upheavals, to resolve life challenges, cultivate resilience and improve overall health and well-being. An accessible, low-cost intervention, writing to heal may improve quality of life and reduce the negative physical and psychosocial effects of cancer in adult oncology populations.

Project Description

This Bass Connections project aims to determine whether a pilot expressive writing intervention raises resilience scores as measured by the Connor-Davidson Resilience Scale for adult survivors of childhood cancer and their caregivers.

Phase 1 – Pilot Intervention

Through the Duke Supportive Care and Survivorship Clinic, the project team will recruit 8-10 dyads of adult survivors of pediatric cancer and their caregivers during the time of their cancer treatment. These participants will take part in a three-hour writing workshop at Duke Integrative Medicine. Expressive writing prompts will encourage them to reflect on what life was like before their (or their loved one’s) cancer diagnosis, their experiences during and after treatment and what they wish they could share with fellow cancer patients or caregivers who have just been diagnosed. Student team members will participate in an interactive training focused on expressive writing and narrative medicine.

Phase 2 – Integrating Lessons Learned

The second phase will integrate lessons from the first iteration of the intervention through a seminar hosted by the Trent Center for Bioethics. The seminar will allow students and collaborators to discuss real-life examples of the experiences of adult survivors of childhood cancer drawn from the intervention.

Anticipated Outcomes

Publication of outcomes; data for use in grant applications and for scaling the intervention to test in a variety of clinical settings

Student Opportunities

This project seeks to engage undergraduates interested in a career in healthcare. In Fall 2018, Ray Barfield will teach a cohort of first-year students in a course titled Medicine and Storytelling, and will offer participation in this project as one option for students to fulfill the course paper/service requirements.

In Phase 1, a cohort of graduate and undergraduate students will participate in a six-session training on expressive writing and narrative medicine. Each undergraduate will be paired with a graduate student mentor. The students will receive training in the background of narrative medicine, the evidence-based approaches used in expressive writing and qualitative analysis of data generated by expressive writing interventions with follow-up assessments in the form of semi-structured interviews and focus groups. At the conclusion of the series, the team will discuss applications for these approaches to other populations and questions. Sessions will be 2 hours long and held at the Trent Center over a 12-month period. After the second session, recruitment of patient-caregiver dyads will begin.

In Phase 2, the integration seminar will include undergraduate and graduate students, faculty, staff and representatives from Duke’s Adolescent and Young Adult cancer survivorship program.

Team leaders seek the participation of undergraduate students as well as medical, nursing and divinity students and graduate students in psychology and neuroscience. Students will have the opportunity to gain direct research experience in both phases of the project.

Undergraduate students participating in the seminar series will receive a grade and course credit (as part of the Fall 2018 course on storytelling in medicine). Graduate students will receive an informal evaluation that includes feedback on their participation in the course as well as feedback on their role as mentors. Check-ins on team progress will be woven into the seminar series.

Duke undergraduates and graduate students can apply for this project team beginning on January 24. The priority deadline is February 16 at 5:00 p.m.

Timing

Fall 2018 – Fall 2019  

  • Fall 2018: September: seminar session 1; Medicine and Storytelling course begins; September–November: seminar session 2; students receive training in research methods; recruitment and consent at the Duke Supportive Care and Survivorship Clinic; December: administration of pre-intervention survey to research volunteers; Medicine and Storytelling course concludes, but student participation continues
  • Spring 2019: January: Writing workshop intervention for research volunteers at Duke Integrative Medicine; February: administration of post-intervention survey; seminar session 3; March–April: data analysis of research results; April: debriefing and review of intervention (session 4); May: planning for second intervention (session 5)
  • Summer 2019: July: closing session to review data and analysis (session 6); July–August: manuscript writing and preparation to present data
  • Fall 2019: September: integration seminar presenting lessons learned to undergraduate and graduate students, faculty, staff and representatives from Duke’s Adolescent and Young Adult cancer survivorship program

Crediting

Course or independent study credit available for fall and spring semesters; summer funding

Faculty/Staff Team Members

Raymond Barfield, School of Medicine-Pediatrics*
Melanie Bonner, School of Medicine-Psychiatry: Behavioral Medicine
Bethany Doran, School of Medicine-Medicine: Cardiology
John Evans, Wellness & Writing Connections*
Oliver Glass, School of Medicine-Medicine: General Internal Medicine*
Karen Jooste, School of Medicine-Pediatrics: Primary Care Pediatrics
Gary Maslow, School of Medicine-Psychiatry
Elizabeth Matteson Bechard, Duke Center for Integrative Medicine
Philip Rosoff, School of Medicine-Pediatrics: Hematology-Oncology
Nikki Vangsnes, School of Medicine

* denotes team leader

Status

Active, New