Expressive Storytelling to Share Adolescents/Young Adults Cancer Stories
Condition: Pediatric Cancer; Growth, Posttraumatic; Nurse-Patient Relations; Narrative Medicine
Study type: Interventional

Summary: 
      The purpose of this study is to test the feasibility, acceptability, and preliminary efficacy
      of an online expressive storytelling intervention for adolescents and young adults (AYA) with
      cancer.

        -  Specific Aim 1. To evaluate the feasibility and acceptability of a 5-week online
           expressive storytelling intervention. We will (a) conduct a 1-group pre- and post-test
           study with 20 AYA with cancer and (b) examine feasibility and acceptability through
           study enrollment rates, retention rates, usability score, adherence and data collection
           rates, satisfaction score, perceived benefits score, and intervention fidelity.

           *Hypothesis 1: We will reach following feasibility and acceptability benchmarks: (a)
           >70% enrollment of eligible participants, (b) >70% retention, (c) >75% adherence and
           data collection, (d) >70 out of 100 usability score, (e) >5 out of 7 satisfaction score,
           (f) >average 5 on the perceived benefits score, and (g) >3 out of 4 fidelity score.

        -  Specific Aim 2. To assess preliminary efficacy of a 5-week online expressive
           storytelling intervention.

             -  Hypothesis 2: AYA participants will report lower psychosocial distress, higher
                health-related quality of life, and higher well-being scores postintervention.
    

Detailed description: 
      -  Rationale/Significance of Study: Cancer is one of life's most stressful and serious
           illnesses for adolescents and young adults (AYA). In 2021, approximately 15,000 AYA ages
           15 to 25 years are expected to be newly diagnosed with cancer in the United States.
           Despite high survival rates exceeding 85%, the burden of cancer and its' treatment for
           AYA is substantial and prolonged due to their unique developmental characteristics. AYA
           with cancer often deal with the difficulties of transition from pre-cancer to treatment
           trajectory while also transitioning from adolescence to young adulthood. While they
           suffer from physical, emotional, psychosocial, and financial burdens as a result of
           cancer, establishing resources for future development and well-being, such as identity
           and goal development, education, and social relationships, often becomes secondary
           during treatment because of concerns about survival. As a result, AYA with cancer have
           less opportunities to be prepared for their lifelong challenges and build abilities to
           deal with such complex suffering, which lead to maladjustment, hinder social
           reintegration, and limit their ongoing well-being. Thus, there is a critical need to
           deliver developmentally appropriate supportive care for AYA with cancer to reduce the
           potential risk of negative consequences and improve capacities to thrive throughout
           their life trajectories. The proposed study aims to test the feasibility, acceptability,
           and preliminary efficacy of an expressive storytelling intervention for AYA with cancer,
           helping them create and share their stories.

        -  Theoretical Framework: The theoretical framework of our study and the intervention
           contents are designed following the Story Theory in nursing practice and the
           Self-transcendence Theory. Our intervention development process follows the
           Obesity-Related Behavioral Intervention Trials (ORBIT) model to develop and evaluate
           complex interventions.

        -  Design and Procedures: A single-group pre- and post-test clinical trial design will be
           applied. A total of 20 dyads of AYA with cancer will be recruited. Each AYA will be
           asked to think of three to five of their primary nurses as audiences of their stories
           created during the 5-week online storytelling intervention. The AYA participant will
           create digital stories about themselves following the guiding questions. The dyad will
           then participate in weekly online meetings with nursing research staff, during which
           they will introduce their stories and discuss their reflections. Participants will
           complete pre- (T1) and post-intervention (T2) measures and share their qualitative
           feedback.

        -  Implications for Practice: Results will serve as the foundational knowledge to conduct a
           large-scale, randomized clinical trial. Ultimately, this study will promote well-being
           and improve palliative and psychosocial nursing care to individuals with serious
           illness, including AYA with cancer.
    

Intervention name(s): Nurse-patient dyadic storytelling intervention
Intervention type(s): Behavioral
Intervention description(s): During the 5-week online intervention, adolescents/young adults with cancer will create their stories following the guiding questions and online meetings with nursing research staff. The target audience of their stories will be their primary nurses. This online dyadic storytelling intervention is designed to promote in-depth self-reflection and meaningful and therapeutic relationships within bedside nurses. The intervention is designed following the Story Theory and Pennebaker's Expressive Writing paradigm.
Intervention model: Single Group Assignment
Intervention model description: Adolescents/young adults with cancer will participate in a 5-week online expressive storytelling intervention. They will independently create digital stories about themselves while their target audiences are their primary nurses. They will then participate in weekly online meetings with nursing research staff, during which they introduce their stories and discuss their reflections. In the final session, they will create a one-page or five-slide story to share with their primary nurses, if they want.
Masking: None (Open Label)
Primary purpose: Supportive Care
Keywords: Storytelling; Adolescents and young adults with cancer; Nursing intervention; Human flourishing; Resilience