Feasibility and Acceptability of a 3-Day Group-Based Digital Storytelling Workshop among Caregivers of Allogeneic Hematopoietic Cell Transplantation Patients: A Mixed-Methods Approach

Abstract

Family caregivers are essential partners for patients undergoing hematopoietic cell transplantation (HCT). The caregiving role is emotionally, physically, and financially demanding. Intervention efforts to provide relief for caregiver stress during HCT are highly warranted. Storytelling interventions are accruing evidence for efficacy in therapeutic contexts. The purpose of this study was to conduct a 3-full consecutive day digital storytelling (DST) workshop to build knowledge on caregivers' lived experiences during HCT, to pilot test DST with a small group of HCT caregivers, and to demonstrate feasibility and acceptability using qualitative and quantitative measures. Six adult caregivers of allogeneic HCT recipients (mean age, 60.2 years) attended a 3-day DST program (66% female, 83% white). All successfully created their personal audiovisual digital story (2 to 3 minutes long) and completed a survey. All participants rated the DST workshop as highly acceptable and therapeutic (mean score 5, on a scale of 1 to 5). Group discussions and interviews with participants further demonstrated high satisfaction and acceptability of the workshop format, setting, process, and structure. The survey results showed decreases in anxiety and depression from before to after the DST workshop with all participants showing change in the expected direction. This study demonstrates the feasibility and acceptability of a 3-day DST workshop as a distress-relieving tool for HCT caregivers. Future research is needed to test the efficacy of DST relative to a control condition.

Mind-Body and Psychosocial Interventions May Similarly Affect Heart Rate Variability Patterns in Cancer Recovery: Implications for a Mechanism of Symptom Improvement

“…The digital storytelling workshop is described in detail elsewhere. 118 A set of digital stories from these patients/survivors, are being used to present as interventional content to new patients/caregivers in the current pilot study reported. The primary purpose of this pilot study is to examine the feasibility of a DS intervention using stories shared by those who already experienced HCT and to evaluate its preliminary effects on psychosocial distress among current HCT patients and their caregivers.…”

Why We Swab: A library of stories in stem cell donation

“…Why We Swab also provides participating storytellers (patients, donors, caregivers) with a voice and a platform to share their experiences online, which could provide therapeutic value to them. [75][76][77] The stories can also support the practice of narrative medicine, 28,78 as the reader can empathize with and learn from the storytellers' healthcare experiences. Finally, the Why We Swab model could be adapted by blood banks and organ & tissue F I G U R E 3 Ambivalence toward stem cell donation of eligible potential donors from the most-needed donor demographics, before and after reading Why We Swab stories (n = 33).…”

“…Furthermore, the library's strong impact on social and traditional media demonstrates its ability to raise awareness about stem cell donation among the general public. Why We Swab also provides participating storytellers (patients, donors, caregivers) with a voice and a platform to share their experiences online, which could provide therapeutic value to them 75–77 . The stories can also support the practice of narrative medicine, 28,78 as the reader can empathize with and learn from the storytellers' healthcare experiences.…”

Health-Related and Economic Burden Among Family Caregivers of Patients with Acute Myeloid Leukemia or Hematological Malignancies

“…Educational intervention programs resulted in improvements in self-efficacy and distress, better health outcomes (e.g., fatigue) [67], reduced mental health service use [77], and lower levels of stress, depression, and anxiety [14,77]. Expressional interventions were also shown to be effective in decreasing anxiety and depression [70]. Additionally, FCs and patients who participated in couples-based communication intervention reported feeling supported and closer to their partner [74].…”