Effects of Digital Stories Intervention on Psychosocial Well-being

Patients and caregivers undergoing hematopoietic stem cell transplantation (HCT) are at
particular risk for reduced psychological and social well-being due to the rigorous and
unique nature of the transplant experience, such as prolonged immunosuppression and multiple
post HCT complications resulting in frequent hospitalizations. However, few studies have
evaluated interventions to alleviate psychosocial distress for both patients and caregivers,
and those have yielded inconclusive results. A narrative-based (storytelling) approach may be
an effective intervention tool for HCT patients and caregivers coping with psychosocial
distress. The preliminary data show that stories shared by individuals in which a range of
emotional expression or resolutions are described, may have beneficial effects on emotional
well-being. In a recent pilot study of a 3-day digital storytelling workshop, investigators
produced a series of digital videos with narratives from a panel of post-HCT patients. The
purpose of this study is to use these digital stories (DS), to be viewed and discussed by HCT
patient/caregiver dyads, as a therapeutic intervention and to examine influences on both
patients' and caregivers' psychosocial status. This cost-effective, non-invasive, and
easy-to-deliver psychosocial support vehicle has never been formally tested as an
intervention for HCT patients or patient-caregiver dyads.

To build upon investigators' preliminary studies and to pilot test the efficacy of this
series of DS, 110 adult patients undergoing HCT at the Mayo Clinic Arizona and patient
respective adult caregivers (N=220 total participants) will be 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 will occur once per
week over 4 weeks via a secure web-based data collection platform (REDcap) with a weekly
email notification and reminder phone call. Using investigator's model of Narrative Effects
on Socio-Emotional Well-Being, we will also examine expected mediating factors to determine
how stories may "work" to reduce psychosocial distress by fostering emotional processing,
acceptance, and dyadic disclosure of emotions.

Patient Inclusion Criteria:

- age 18 or older

- recently underwent Hematopoietic cell transplantation (HCT) (within a month after
hospital discharge)

- must be able to speak, read, and write in English

- access to a working phone and e-mail account

Patient Exclusion Criteria:

- no primary caregiver

- cognitive impairment that prohibits completion of study assessment

- visual or hearing impairment

- other (e.g., provider non-approval or logistical constraints such as patient moving
out of town)

Caregiver Inclusion Criteria:

- age 18 or older

- family caregivers who are identified as a primary caregiver by a patient

- have primary responsibility for the care of patients throughout the HCT process

- Must be able to speak, read, and write in English

- Access to a working phone and e-mail account