Effects of Digital Stories Intervention on Psychosocial Well-being for Cancer Patients and Caregivers Undergoing Hematopoietic Stem Cell Transplantation
Phase: NA
Conditions: Bone Marrow Transplant, Information Disclosure, Hematopoietic Stem Cell Transplantation, Psychosocial Health, Depression, Anxiety, Stress, Narrative
Sponsor: Arizona State University

Title: Effects of Digital Stories Intervention on Psychosocial Well-being for Cancer Patients 
and Caregivers undergoing Hematopoietic Stem Cell Transplantation (HCT) PI: Kim 
ASU: Larkey, Langer, Todd 
Mayo: Khera; Consultant: Weihs 
 
Award number: R15CA213035 to Arizona State University by National Cancer Institute of the National 
Institutes of Health 
NCT number: NCT03654599 
Date: 9/21/2023 
 
Scientific Background 
Patients undergoing hematopoietic stem cell transplantation (HCT) are at particular risk for reduced 
psychosocial well-being. The process is extremely rigorous, requiring relocation to a transplant center, and is 
associated with multiple acute medical and psychosocial sequelae. HCT patients often report anxiety, 
depression, and social isolation due to the intense and aggressive transplant experience, such as prolonged 
recovery and multiple post-HCT complications that result in frequent hospitalizations. Caregivers of HCT 
recipients also experience high levels of psychosocial distress due to stressors such as caregiving 
responsibilities and beyond, plus deep concern for their loved ones. Interventions that help cancer patients 
authentically express and disclose their emotions through supportive open dyadic communication with 
caregivers have been found to be effective for reducing emotional distress, but time and resources to access 
professional services are often severely limited. Thus far, however, interventions to alleviate psychosocial 
distress for both patients and caregivers after HCT have been rare and have yielded inconclusive results.  
A narrative-based (storytelling) approach may be an effective intervention tool for HCT patients and 
caregivers coping with psychosocial distress. Although narratives have been applied and tested to influence 
health behavior in cancer education and care, there have been only a few rigorous tests of narrative effects for 
therapeutic purposes, and none of this research has been conducted with HCT patients and caregivers. 
Our preliminary data show that stories shared by individuals in which a range of emotional expressions or 
resolutions are described may have beneficial effects on emotional well-being. In a pilot study with breast 
cancer patients, participants who viewed digital stories about others coping adaptively with emotions showed 
reduced emotional distress. In a recent pilot study of a 3-day digital storytelling workshop, we produced a 
series of digital videos with narratives from a panel of HCT survivors. We propose to use these digital 
stories (DS), to be viewed and discussed by HCT patient/caregiver dyads, as a therapeutic intervention 
and to examine the influences on their psychosocial status. This low-cost, non-invasive, and easy-to-
deliver psychosocial support vehicle has never been formally tested as an intervention for HCT patients or 
patient-caregiver dyads. 
 
Design and Methods 
 
To build upon our preliminary studies and to pilot test the efficacy of this series of DS, 110 adult patients 
undergoing HCT at the Mayo Clinic Arizona and their respective adult caregivers (N=220 total participants) 
were randomized to either (a) an intervention using DS (dyadic exposure to four 5-minute modules) or (b) an 
information control (IC) video group (dyadic exposure to four videos containing only information about post-
HCT care) followed by encouragement to discuss as a dyad. Exposure occured once per week over 4 weeks 
via a secure web-based data collection platform (REDcap) with a weekly email notification and reminder phone 
call. Participants completed questionnaires at baseline (T1), after the 4-week intervention (T2), and 3 months 
(100 days) later (T3). Using our model of Narrative Effects on Socio-Emotional Well-Being, we also 
examined expected mediating factors to determine how stories may "work" to reduce psychosocial distress by 
fostering emotional processing, acceptance, vicarious emotional expression and dyadic disclosure of 
emotions.  
 
 
Objectives and Aims 
Specific Aim 1: To test whether DS are more efficacious for improving psychosocial well-being in patient-
caregiver dyads after HCT than an information-only control (IC) condition. Emotional outcomes were measured 
using the Profile of Mood States (POMS), and social outcomes were measured using the Functional 
Assessment of Cancer Therapy-General (FACT-G) social well-being scale. 
 
Primary Hypothesis 1:  HCT patients and caregivers exposed to DS (intervention arm) will experience 
less psychosocial distress than those exposed to the information videos (IC arm) at post-intervention (4 weeks, 
Time 2) and at 3-month post-intervention follow-up (Time 3). 

 
Exploratory Question (EQ) 1: How do DS influence patients and caregivers (differently and/or similarly) in 
their experience of psychosocial distress, expressed through qualitative in-depth interviews (n=20)?  
Specific Aim 2: To examine potential mediators and moderators of the influences of DS on psychosocial well-
being in HCT patients and caregivers.  
     EQ2: What factors (e.g., age, gender, types of other support, treatment) moderate responses to the DS? 
     EQ3: Do hypothesized mediating variables explain the effects of DS on psychosocial distress, including 
transportation (i.e., getting carried away by the stories for vicarious emotional expression), emotional 
processing, identification with DS, and the disclosure of emotions between patients and caregivers? 
Specific Aim 3: To employ an existing mentorship program with the Barrett Honors College at Arizona State 
University that will expose undergraduate nursing students to behavioral and psychosocial oncology research. 
IMPACT: We expect DS to be useful to HCT patients and caregivers and to foster improved psychosocial well-
being by providing relevant, enriching stories that help the dyads face emotional challenges. Testing the 
efficacy of narrative-based stories to reduce distress, improve quality of life, and reduce mortality and morbidity 
rates in HCT patients serves as a critical first step in our larger program of research. If this investigation is 
successful, we will develop a DS intervention for people with other cancers and in other languages to 
reproduce and extend the study for even broader dissemination of this potentially distress-relieving tool.