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

Abstract

Background:

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.

Objectives:

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.

Study Design:

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.

Results:

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.

Conclusions:

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.

Introduction

Hematopoietic cell transplantation (HCT) is an established therapy for hematologic and non-hematologic malignancies, such as lymphoma, leukemia, and certain solid tumors.¹ In 2020, a total of 22,013 HCT treatments were performed in the United States,² and a total of 1.5 million treatments worldwide were projected for 2019.³ While HCT can be a potentially life-saving treatment, the procedure is quite rigorous and poses multiple medical risks. Well-established adverse medical sequelae include infection, acute and chronic graft-versus-host disease, neurologic and pulmonary complications, infertility, and disease recurrence.^{4, 5} Due to the high doses of chemotherapy, severe immunosuppression, protective isolation to prevent infections, and prolonged hospital stays, patients are predisposed to heightened levels of psychological and social distress.^{1, 6} Moderate depressive symptoms are reported in 18% of HCT patients within their first 100 days post-transplant.¹ Immediately and up to several years after transplantation, HCT patients report fatigue, distress, feelings of isolation, anxiety, PTSD, depression, and cognitive issues.^{1, 7, 8} In fact, treatment-related distress takes much longer to resolve, up to five years post-transplant, relative to physical limitations.⁴

Given the intensity of HCT, patients are required to designate a full-time informal caregiver (often a family member, friend or relative) to support them throughout the process, typically for a 100-day period post-transplant.^{9, 10} Caregivers provide important social and emotional support for HCT recipients, serve as advocates, handle finances, and manage logistics of treatment.¹¹ Although having a caregiver is linked to better HCT recipient outcomes, including reduced length of hospital stay and readmission,¹¹ and better survival,¹⁰ the extensive burden increases caregivers’ risk for psychosocial problems of their own, some of which may linger for years.^{12,13, 14} Indeed, some studies have revealed that distress is actually higher among HCT caregivers as compared to their patient counterparts and non-medical populations.¹⁵ HCT caregivers also report less social support¹⁶ and dyadic satisfaction^{15, 16}, and more loneliness¹⁶ relative to both HCT survivors and controls. This underscores the pressing need to address psychosocial challenges faced by both patients and caregivers.

A handful of studies has explored interventions and their potential for reducing psychosocial distress in patients or caregivers following HCT. These have included telephone-based cognitive behavior therapy,¹⁷ psychoeducation, ^{18, 19} mindfulness-based approaches,²⁰ expressive helping,²¹ and massage therapy, which demonstrate the feasibility of intervening with HCT patients or caregivers separately.²² However, there have been relatively few interventions tested to alleviate psychosocial distress after HCT targeted to patient-caregiver dyads.²³ One study demonstrated feasibility and acceptability of an emotional disclosure intervention for HCT dyads, and improvement in intervention targets across the intervention period, i.e., increases in self-reported disclosure and feeling supported by one’s partner.²⁴ While promising and capitalizing on the inter-dependent nature of the patient-caregiver relationship in the HCT setting, this was a pilot study and not randomized in design, and required 5 sessions with a trained counselor. More disseminable approaches (e.g., not requiring in-person meetings) may be warranted, given that patients and caregivers often report feeling overloaded.²⁵

Storytelling may provide easily implementable path to emotional processing and adaptation following HCT. Early research on emotional expression and processing via narrative typically relied on written narratives and focused how the writing benefited the “teller” rather than the audience.^26-28 A recent and growing body of research has demonstrated the therapeutic benefits of narrative-based intervention, often referred to as digital storytelling (DST).²⁹ DST is a narrative health intervention that engages participants in collaborative group workshops with the end goal of telling their story by creating a short digital video to be viewed by others.³⁰ Viewing personal, emotionally engaging narratives delivered by individuals with similar experiences is likely to generate the experiences of transportation into the story (getting “carried away” by the story) and identification (with characters and a story), which are purported to occur with realistic stories of characters who had experiences similar to those of the viewer.³¹ Learning from vicarious learning through online delivery of stories of similar others can be a catalyst for improvement of one’s emotional health despite restrictions and limitations to participation in in-person interventions and fewer resources and support groups among HCT patients and made more available due to time flexibility, and the increasing prevalence of internet use.

Initial testing of DST in the context of HCT suggests that the experience of creating and talking about the transplantation experiences during a 3-day group-based workshop was emotionally and socially therapeutic for the participants (i.e., impact on the story teller). ^{32, 33} By participating in a DST workshop, individuals found themselves deeply sharing, connecting and identifying with others, being empowered in the communal connection, and experiencing inspiration and spiritual uplifting. The purpose of the current investigation was to test a set of stories as interventive for other patient/caregiver dyads going through the HCT process, shifting focus from story making and telling to story viewing with subsequent discussion as a dyad.

While the literature examining interventions to alleviate psychosocial distress among HCT patients and caregivers is growing, little has been done to examine impacts on the dyad, with even less attention to descriptive, experiential processes that could illuminate which aspects of story viewing and discussion might be “working”. In this qualitative study, we sought to explore the acceptability and the experiences and perceptions of the impact of a 4-week web-based digital storytelling intervention among patient and caregiver dyads undergoing HCT. In particular, we were interested in themes that might emerge surrounding prompts patients and caregivers were given to discuss the stories following exposure to them, as a dyad. Exploring these experiences may provide useful information for future DST interventions among HCT patient-caregiver dyads.

Methods

Study Participants and Procedures

This study was part of a larger mixed methods randomized controlled trial (Clinicaltrials.gov ID: NCT03654599).³⁴ In this current paper, we present qualitative findings from in-depth interviews with HCT patient-caregiver dyads. Adult HCT patients (18 years or older) who (1) had completed a transplant within one month since hospital discharge following HCT, (2) were of any gender, race or ethnicity, and (3) spoke, read, and wrote in English were invited to participate in this study using a flyer during one of the patients’ routine post-HCT clinic visits. Inclusion criteria for caregivers were 18 years or older, having served as primary caregiver for an adult HCT recipient throughout the HCT process, and ability to speak and comprehend English. Participants, who were not identified as primary caregivers and had a visual or hearing impairment were excluded. Participants were recruited between May 2017 and May 2021. The study was approved by the IRB at both an NCI-designated cancer center and partnering university in the Phoenix Metropolitan area. Initial screening was conducted via medical records to identify potential patients. Patients meeting initial medical inclusion criteria were approached (along with their caregivers), further screened for eligibility, and if interested in hearing more, provided detailed descriptions of the study purpose, procedures, risks and benefits. All agreeing participants signed hard copy consent forms.

Study Design

In the larger study, 202 participants (101 HCT patient-caregiver dyads) were recruited and enrolled into 1 of 2 groups: digital storytelling (DST: dyadic exposure to eight 5-minute modules) or an information control (IC) video arm (dyadic exposure to eight videos containing only information about post-HCT care). Digital stories, produced by the individual attending the workshop, are short, first-person visual narratives that synthesize digital images, audio recording, music, and text to document personal experiences.^{32, 33} DST selected for this intervention included the stories of patients or caregivers who had previously experienced the full course of HCT, describing various aspects of their diagnosis, treatment and recovery experience (including the best and the worst and modeling emotional disclosure). The patient stories include (1) a patient dealt with HCT through a positive attitude and active coping; (2) a mother of 3 children coped with HCT through family support and positive reframing; (3) a patient coped with the HCT by praying; and (4) a patient coped through open communication with his wife. The caregiver stories include: (1) a caregiver goes on walks for praying; (2) a woman talked about friends support during her husband’s HCT; (3) a man as a caregiver of his wife talked about family photos and cards for coping; (4) a woman talked writing extensive updates and expressing emotion to family for coping.

All participants (both patients and caregivers) received an email once each week (4 times total), containing the link to a web-based intervention via a secure web-based data collection platform (REDCap). Over the course of 4 weeks, dyads were encouraged to watch and discuss two DS (or IC) videos per week together and to complete a short questionnaire afterwards. At the conclusion of the intervention, participants in the DST arm were asked whether they would like to participate in a semi-structured 15-mintue phone interview as dyads to discuss their perceptions and experiences while participating in the DST intervention. In addition, all participants were asked to provide their overall experiences and responses to the intervention in open-ended questions. Before conducting the interviews, the research assistant explained the purpose of the study and briefly summarized the content of the DST videos. Interview questions were developed by the research team to determine perceptions and explore experiences in the DS intervention, as well as provide further insights into how such interventions might benefit HCT patients and their caregivers (See Appendix 1). All interviews were audio recorded and transcribed verbatim. Immediately following the interview, three research team members transcribed all of the interviews from audio recording devices, and checked each other’s transcriptions for accuracy. Transcriptions were imported into NVivo 12 for coding and analysis, using a combination of both deductive and inductive methods to organize the data, create categories, and develop themes and subthemes.

Acceptability Measures

Acceptability was measured using a set of 8 satisfaction survey questions after completion of the intervention. Close-ended questions included “What was your overall satisfaction/enjoyment with this study?”; “To what extent was participating in this study worth your time?”; “Would you like to watch more stories and participate in a similar study again?”; and “Would you recommend this story to others?”, with response options ranging from 1 (strongly disagree) to 5 (strongly agree). Three open-ended-questions were also asked: “If you were to have done this intervention by yourself how would this have made a difference?”; “How do you feel as a patient watching caregiver videos and vice versa, any emotional responses to talking about the roles each other plays?”; and “Is there anything else you would like to tell me concerning your experience with the digital stories?”.

Data Analysis

Our study is designed according to a constructivist grounded theory approach.³⁵ Qualitative data analyses and reporting were conducted by the research team using thematic analysis as the analytical technique.³⁶ Steps in the qualitative analytic process included line-by-line coding, content analysis, and codebook development based on sorting and synthesis of codes into categories and major themes. The codebook was further developed with exemplar quotes from participants, which supported the identified categories and themes.³⁶ Thematic analysis techniques identified sub-categories, which were then combined into categories and overarching themes/high-level categories that depicted the participants’ perceptions of the DST intervention. Data from each interview were initially analyzed separately and manually coded by four study team investigators. Emergent themes were then compared across all coders until the inter-coder reliability was consistently at least 80% on at least 95% of the codes.³⁷ Inter-coder reliability was calculated as the total number of agreements and disagreements for all codes combined over the total number of agreements for all codes.³⁸ Through this process, four coders were able to check coding agreement on interview transcripts and consistently got 85% inter-coder reliability. Each coder also reviewed the responses from the open-ended questions regarding overall experiences of the DS or IC intervention. In this article, we present a triangulation of findings from the qualitative interview data and open-ended questions.

Results

Sample Demographics

Demographic and clinical characteristics of the 38 participants (19 intact patient/caregiver dyads) who completed post-intervention interviews are summarized in Table 1. For patients, the mean time from HCT at study intake was 25 days (range 6-56) and the mean age was 58.7 years (SD = 13.3). A majority of patients were male (n= 12, 63.1%) and non-Hispanic White (n=16, 84.2%). The most common cancer type was leukemia (n=6, 31.6%) and the most prevalent type of transplant was allogeneic (n=13, 68.4%). For caregivers, the mean age was 56.3 years (SD = 13.9). A majority of the caregivers were female (n= 15, 78.9%), non-Hispanic White (N=15, 78.8%), and spouses of patients (n =14, 73.6%). Interviews, each conducted with both members present, required approximately 15-30 minutes to complete.

Table 1:

Participant Demographics

	Patient (N=19), n (%)	Caregiver (N=19), n (%)
Age	58.7 (SD = 13.3)	56.3 (SD = 13.9)
Gender
Male	12 (63.2)	4 (21)
Female	7 (36.8)	15 (78.9)
Race
White	17 (89.5)	18 (94.7)
More than one Race	2 (10.5)	0
Other	0	0
N/A	0	1 (5.3)
Ethnicity
Hispanic	1 (5.3)	3 (15.8)
Non-hispanic	18 (94.7)	15 (78.9)
N/A	0	1 (5.3)
Education
Less than High School	0	0
High School	1 (5.3)	2 (10.5)
Some College	8 (42.1)	8 (42.1)
4- year College Degree (B.A or B.S. degree)	4 (21)	5 (26.3)
Masters Degree	4 (21)	3 (15.8)
Doctoral Degree (PhD, MD, JD)	1 (5.3)	1 (5.3)
Other	1 (5.3)	0
Transplant Type
Allo	13 (68.4)	N/A
Auto	6 (31.6)	N/A
Diagnosis
Leukemia	6 (31.6)	N/A
Multiple Myeloma	5 (26.3)	N/A
Mylofibrosis	2 (10.5)	N/A
Other	6 (31.6)	N/A
Relationship to Patient
Spouse	N/A	14 (73.6)
Friend	N/A	1 (5.3)
Partner	N/A	1 (5.3)
Parent/Child	N/A	2 (10.5)
SIbling	N/S	1 (5.3)

Acceptability

In general, patients and caregivers found the web-based DST intervention acceptable and worthwhile. Both patients and caregivers who completed a DS intervention reported high satisfaction with the intervention (mean score, 4.5). Participants also strongly agreed that they would recommend it to others (mean score, 4.4), would watch more stories (mean score, 4.1), and this intervention was worth their time (mean score, 4.6). Some participants commented that they liked the flexibility of participating in the intervention anywhere and anytime, without having to attend in-person activities. For example, P78 said, “the online part of this was great. We could do it at our own convenience in the evening or whenever we had time”. Overall, the study especially the time commitment and easily accessible web-based format was well received by both patients and caregivers leading them to believe the intervention was well worth their time.

Overall Experiences and Perspectives on Participation in a DS Intervention

Four major themes emerged from the interviews and 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. In what follows, we describe and provide exemplar quotes for each theme.

Building communal connection through engaging with the story

Participants reporting building communal connection through engaging with the story was the first and most prominent theme from the interviews, which appeared in (N=61) instances across interviews. Dyads mentioned they found themselves relating/comparing their cancer experience to the videos, often remarking how their own experience was easier than the ones portrayed, "(patient) I thought they were touching, gave a perspective of somebody else going through the same thing you are and seeing how they dealt with it. I thought they were good.” Communal connection was reflected as, “(patient and caregiver) It really sinks in that you are not the only one going through the situation, and that you just never know when life can take a change.” Dyads also expressed the importance of support from friends and family/God in response to some of these stories, “(caregiver) We have our church, work family who were there the whole time.” However, in a few instances, participants reported feeling isolated, “(patient) You kind of feel alone on this whole cancer journey”. Several patients in this study expressed a connection with the patients in the stories, but also that it helped reinforce the connection they felt with individuals in their lives, and the positive impacts these connections make during the HCT process.

Positive emotional growth after HCT

The next theme that emerged was experiencing positive emotional growth after HCT. This theme emerged in (N= 40) separate instances throughout the interviews. Participants were able to watch these videos and empathize with the people in the videos, an oftentimes gain insight into the course and experience of HCT for others, "(patient) This helped open my mind to how sick people really are", "(caregiver) It put into perspective what they feel and what they go through, what their families are going through, during this life changing journey." Participants also mentioned gratitude and positive coping. Through comparing/relating as well as empathy, participants were able to see how bad this situation could be for people, and expressed gratitude, "(patient) Oh man I am so thankful that I didn't have that bad experience.", "(patient and caregiver) I think those videos gave us some other reason to be thankful." Collectively, participants in this study were able to experience positive emotional growth after HCT by comparing their stories to the stories in the videos and come away feeling gratitude and empathy for their experiences.

Value of gaining the other’s perspective

Across the interviews, the third theme that emerged was that participants expressed that they saw a benefit in participating in this intervention together and were able to gain the other’s perspective (N=31). Oftentimes, participants outrightly expressed that they gained the other’s perspective by watching these videos, “(caregiver) I felt as though I could understand the patient’s point of view. I could really connect with the caregiver’s point of view as to what was going on and the questions that I had.”

"(patient) I would say that the two biggest things are that they are very relatable and, I guess it's cool because as a patient, I get to see what other caregivers go through. And I think for [the caregiver], he gets to see another patient's perspective. Sometimes when you are caught up in caregiving and being a patient, you don't realize just how much they are struggling and vice versa. Cause both of them are really difficult roles. So, I think that helps you understand the other person's perspective more, by seeing other people go through it."

Patient and caregiver dyads also saw the benefit of doing this intervention together, "(caregiver) I think it would have lost its benefit to us, kept us from having the conversations. When you get to one sided with these conversation on it, well because you're both going through it." By participating in this study as a dyad, participants were able to see the perspective of their partners and gain empathy.

Impact of open communication on the patient-caregiver relationship

The final major theme that emerged from the data was open communication between the dyad which appeared (N=23) instances across interviews. Participants noted that this video acted as a prompt for discussion, "(caregiver) It made us say, "well how are you really feeling today?", you know, that kind of thing." As well as,

“(patient) I think it gave us something to talk about. We discussed them, whether we watched them together or not, we discussed each one of them. And we discussed how they made us feel. So that was good to get us to have that conversation.”

“(caregiver) It brought up a lot of things that we probably would not have shared with each other. My husband didn't want to share all the things he went through as a patient, all the fears. And I didn't share some of the things, but when we watched the videos we felt, oh, we can share these things.”

Additionally, some participants might benefit more from this intervention than others as they commented that they believed they already had open communication and a strong relationship between patient and caregiver, “(caregiver) We talk a ton about our feelings and emotions as is… I mean, we talk a lot, and that has been a continuation of our relationship and our marriage. Of course, we talked about the stories we watched and how we felt.”

Discussion

The primary aim of this study was to describe the acceptability and overall perceptions of HCT patient-caregiver dyads’ experiences regarding participation in a web-based digital storytelling intervention. In general, the satisfaction survey and qualitative data emerging from dyad interviews support acceptability of the DST intervention and format. Participants were highly satisfied with the DST intervention and the majority would recommend the program to others. The most liked aspects of a DST intervention included the flexibility in terms of timing and location.^{39, 40} Several pairs mentioned some of the barriers of participating in in-person interventions (i.e., strict infection-control protocols and the distance between transplant centers and where HCT patients live).⁴¹ The ability to participate in a web-based online DST intervention in their own house at convenient time is clear advantages for HCT patients and caregivers over traditional in-person approaches while meeting needs for infection control.⁴² Another common reason for liking a DST intervention included the dyadic nature of the intervention. Patient-caregiver dyads commonly reported that it was beneficial to have their significant of others and caregivers participate in an intervention together. Both patients and caregivers mentioned that they were able to learn from one another.

The most prominent theme that emerged from this research was building communal connection through engaging with the stories. Participants were able to relate and engage with the stories and characters by watching and listening to similar experiences. Narrative interventions in which the participant is transported into the narrative, often by relating and comparing their experiences, have been shown to have positive impacts on participants. ^{43, 44 45} Patients were also able to relate to the stories due to the fact that the participants in this study underwent cancer treatment at the same facility as the individuals in the videos.³³ This may be beneficial as it has been demonstrated that conceptually, narratives told by people of similar groups are more beneficial to the people they are trying to reach.⁴⁶ Through relating and comparing, participants were also able to build a communal connection between them and the people in the videos. A few participants expressed worry that the cases in the video were worse than their own and reported being fearful of this. Accordingly, it may be important to give greater consideration to the timing of exposure relative to a given patient’s transplant recovery trajectory. However, most patients and caregivers reported that through relating and comparing they were able to see that their situation was better than some others’ and expressed gratitude. This experience of gratitude is known as one of the aspects of post-traumatic growth which has been studied extensively in cancer populations and seems to positively influence psychosocial outcomes including depression and anxiety.⁴⁷ Social support and active coping by engaging with difficult emotions has been reported to be associated with post traumatic growth following HCT.⁴⁸ We believe that the digital stories encouraged supportive social relationships and active coping approaches leading to positive psychological changes.

The theme around open communication is consistent with research demonstrating that avoidance is associated with adverse psychosocial states, e.g., holding back from disclosure or engaging in what is termed “protective buffering,” ⁴⁹ hiding worry, withholding bad news, and/or acting more positively than one feels. ^50-52 These effects, in some cases, hold for both patients and caregivers and are both intra- and inter-personal in nature, meaning that the avoidant behavior is associated with poorer functioning not just for the person enacting it but also for their partner.^{50, 53} One study found that non-disclosure in cancer patients was associated with higher levels of depression.⁵⁴ However, the patients who were able to disclose how they were feeling, often through benefit finding but also for those with difficult emotions to discuss, reported improved outcomes in measures of psychosocial distress.⁵⁴ Future work is needed to determine optimal approaches to facilitate dyadic disclosure in this setting. The DST intervention described herein offers promise as a brief, easy-to-implement option, one demanding very little relative to more formal psychosocial interventions and thus responsive to the unique challenges of HCT, such as extreme fatigue.

The last theme identified across interviews was gaining the other’s perspective. As mentioned above, acceptance of this intervention was very high as most participants not only responded that they enjoyed participating together, but that it was an integral part of the experience. Dyads also frequently reported that this intervention allowed them to glimpse into what this experience might be like for their partner. The videos were helpful in contributing to open communication between the dyads also, as it was reported several times that dyads used the videos as a prompt for communication between the pair. However, there were also several instances of dyads reporting strong and open communication prior to the videos and intervention. Results from this study demonstrate that patient and caregiver dyads tried to find relationships between these stories they watch and their own cancer experience. This demonstrates the future need for more stories and perspectives to share. As demonstrated in the data, dyads enjoyed participating in the study together.

Findings and potential benefit may differ as a function of the type of relationship between patient and caregiver, for example, intimate partner/spouse versus sibling or parent. Within our sample, most pairs (14 of 19) were spousal pairs; others were sisters, friends, or parents and children. Spousal couples are the most frequently studied type of relationship.⁵⁵ Future research investigations will benefit from the inclusion of an array of dyad types, as done here, but with larger samples that may afford examination of intervention response as a function of dyad type. It will also be important to include measures of relationship intimacy (closeness and connectedness) and cohesion. Closeness may in fact be more important to consider than relationship to patient.

With the prevalence of psychosocial distress in this population, there is a need for interventions that can address this in a feasible, evidence-based way. All participants included in this study had never been to a support group before. However, it was evident that participants found positive benefits from hearing other’s stories who were going through similar experiences, as well as being able to gain more perspective on their partners experience with the HCT process. Patients frequently commented that before this experience, they had no idea what their caregiver was going through, and these videos were eye-opening. Given that holding back and protective buffering can occur, even in otherwise healthy relationships, it may be easier for dyads to disclose in reaction to similar experiences reported by a third party, versus sharing their own personal experiences in the absence of being prompted to do so.

Limitations/Conclusions

There were some limitations in this study including limited ethnic diversity, as the patients were predominately Caucasian males, and recruitment from a single clinic in the Phoenix metropolitan area. The sample in the current study may also be unrepresentative of the sample who participated in the larger study due to the small sample size. Also, because the interviews were conducted with dyads, we do not know if resultant themes, particularly around dyadic sharing, would have emerged to the same extent, if at all, from individual interviews. Future work would benefit from the observation of patient-caregiver discussions in reactions to the digital stories, either in in-person settings in which observations are recorded and later coded,⁵⁶ or remotely through audio-recording methods. Linguistic software developed by Pennebaker and colleagues (2015, 2022) could be employed to analyze utterances with regard to emotional content, cognitive processing, and pronoun usage. These elements have been linked to psychological and relational well-being.⁵⁷ For example, greater use of first-person plural words (“we-talk”) during conversations about cancer has been associated with better mood and less distress among couples coping with head and neck cancer.⁵⁸

Despite these limitations, these results add a meaningful contribution to a current, growing literature on psychosocial interventions for patients and caregivers undergoing HCT. This qualitative study demonstrated the acceptability and the benefits of participating in an online DST intervention as patient-caregiver dyads. Unlike other psychosocial interventions, a technology-based DST intervention is an easy-to-deliver, flexible, low-cost, and non-invasive psychosocial support vehicle. A larger clinical trial is needed to examine effects of the DST intervention both in the short- and longer-term, as well as mechanisms of change. The convenience of participating a web-based intervention makes digital storytelling a potentially attractive method of delivery for other cancers as well.

Highlights.

• A web-based digital storytelling (DST) intervention is acceptable among patient-caregiver dyads.

• A DST intervention helps to build communal connection through relating and engaging with the stories and characters by watching and listening to similar experiences.

• Dyadic participation in a DST intervention provides an opportunity for open communication and emotional disclosure.

• A technology-based DST intervention is an easy-to-deliver, flexible, low-cost, and non-invasive psychosocial support vehicle.