Hematopoietic Cell Transplantation Patient-Caregiver Dyad Perspectives on Participation in a Digital Storytelling Intervention: A Qualitative Approach

Abstract

Storytelling has long been regarded as an effective means of communication, allowing the teller to process their emotions in light of particular life challenges. Effects on the listener have also been demonstrated to be beneficial, especially if the listener is faced with a similar life challenge. Less is known regarding the potential effects of storytelling on listening dyads and opportunities for joint processing following exposure to relevant stories. We sought to study these phenomena in the context of hematopoietic cell transplantation, a demanding medical procedure requiring intensive informal caregiving and thus great patient-caregiver entwinement. The purpose of this qualitative descriptive study was to explore participants' perceptions of a 4-week web-based digital storytelling (DST) intervention using both quantitative ratings of acceptability and qualitative coding of interviews conducted after intervention completion. 202 participants (101 HCT patient-caregiver dyads) were recruited from the Mayo Clinic Arizona and randomized into either DST or Information Control (IC) arms. Participants in the DST arm rated acceptability of the intervention and were asked to participate in a 30-minute phone interview to discuss their experiences of participating in the DST intervention. All interviews were recorded and transcribed verbatim and imported into NVivo 12 for coding and analysis, using a combination of deductive and inductive approaches to organize the data, create categories, and develop themes and subthemes. A total of 38 participants (19 HCT patient-caregiver dyads) completed post-intervention interviews. Patients were 63% male, 82% White, 68% allogeneic HCT, with a mean age of 55 years. Median time from HCT was 25 (range 6-56) days. Caregivers were mostly patients' spouses (73%) and female (69%), with a mean age of 56 years. In general, the 4-week web-based DST intervention was well accepted and liked by both patients and caregivers regarding the length of time, dyadic participation, and the convenience of being able to participate in the intervention at home. Patients and caregivers who completed the DST intervention indicated that they were satisfied with the intervention (M=4.5 out of 5), they were likely to recommend it to others (M=4.4 out of 5), would watch more stories (M=4.1 out of 5), and that the experience was worth their time (M=4.6 out of 5). Major themes that emerged from the qualitative analysis included (1) building communal connection through engaging with the stories; (2) positive emotional growth after HCT (3) value of gaining the other's perspective; and (4) impact of open communication on the patient-caregiver relationship. A web-based DST intervention provides an attractive format through which to deliver a nonpharmacological psychosocial intervention to HCT patient-caregiver dyads. Watching the emotional content in digital stories may help patients and caregivers cope with psycho-emotional challenges together and provide an opportunity for emotional disclosure. Further work to determine optimal paths to disclosure is warranted.