Abstract
• Description of the roles and actions of digital storytelling facilitators who collaborate with persons living with dementia during digital storytelling sessions. • Identification of common elements that may assist individuals from a variety of backgrounds to facilitate digital storytelling with persons living with dementia.
• Digital storytelling is a meaningful activity for persons living with dementia to uphold their identity through a legacy product. • Digital storytelling facilitators act as weavers of three key elements (communication, building collaborative relationships, and using technology) to enable the process of digital storytelling and the creation of a final digital story product with persons living with dementia. • Individuals from varying professional backgrounds and lived experience may assume the role of digital storytelling facilitators by employing their unique strengths along the key elements of digital storytelling facilitation.What this paper adds
Applications of study findings
Introduction
Persons living with dementia are often viewed by their diagnosis, symptoms, or behaviors as opposed to as unique persons with rich experiences, values, and preferences. Life story work is a way to assist service providers and family members see individuals with dementia as people (Grøndahl et al., 2017; Kellett et al., 2010). Life story work can take many forms such as reminiscence therapy, memory boxes, life storybooks, life posters, or digital stories (McKeown et al., 2010; Subramaniam & Woods, 2016). In each form of life review, a facilitator is typically involved to assist, guide, and co-create a product with the person who has dementia.
Digital stories are technological versions of life story work; they are a narrative in the form of a short video created using videos, photographs, and music (Wilson, 2018). Digital stories are typically told in the first person about the individual, an event in one’s life, or an issue a person feels strongly about (Wilson, 2018). Each digital story weaves a meaningful topic for the person with dementia. Digital stories can serve as a legacy product shared with service providers, family, and loved ones, and are appreciated when the individual is no longer able to communicate.
Digital storytelling has been primarily used to support older adults’ memory, reminiscence, identity, and self-confidence through co-creation between facilitators and older adults (Rios Rincon et al., 2021). The literature cites benefits of digital storytelling for persons with dementia including increased social connectedness, confidence, empowerment, and self-esteem (Critten & Kucirkova, 2019). Storytelling can provide a safe space for reminiscence and self-expression and reinforce a person’s identity (Manchester & Facer, 2015; McKeown et al., 2010). Digital storytelling encourages conversation and improves relationships between persons with dementia, care staff, and family members and is one avenue to provide person-centered care (Subramaniam & Woods, 2016). Digital storytelling can enable a deeper understanding of persons living with dementia, including their talents and contributions over the course of their lives. This, in combination with the empathy elicited by viewing a digital story, has the potential to also mitigate ageist assumptions (Sljivic et al., 2021).
There is a paucity of literature about the co-creation process and nature of the interaction between a facilitator and a person with dementia during digital storytelling. Two papers raise three points on this topic. It is recommended that facilitators listen sympathetically and encourage the person with dementia to tell a story without interruption (Critten & Kucirkova, 2019). The flow and outcomes of a session are positively affected by a facilitator who is an active listener (Fels & Astell, 2011). It is also the role of a facilitator to explain the multimedia program and technological device being used to create the digital story as individuals may not have had the opportunity to become competent using digital technologies. Further research to determine the skills inherent in co-creation approaches would support facilitation of digital storytelling with older adults with dementia to communicate with their loved ones and uphold one’s identity (Rios Rincon et al., 2021).
Previous digital storytelling research with persons living with dementia focused on the benefits, limitations, or experiences of those involved (Rios Rincon et al., 2021). An understanding of elements that facilitate digital storytelling could assist those who wish to use this tool to help people with dementia share their stories. The purpose of this study was to examine, identify, and describe the elements of facilitation during digital storytelling with persons living with dementia.
Methods
Study Design and Data Set
This study was a secondary analysis of qualitative data from a primary study. The primary study took place across three Canadian cities (Edmonton, Toronto, and Vancouver) with the purpose to explore digital storytelling from the perspectives of persons living with dementia.
Primary Study
In the primary study, participants were eligible to participate if they were aged 45 years and older, self-reported as living with dementia, and had the cognitive and communication abilities to participate in sessions with a digital storytelling facilitator. Participants were recruited through day programs, support groups, retirement residences, care facilities, and organizations that serve populations with dementia and their care partners. At these sites, digital storytelling facilitators shared information about the study with persons with dementia and their care partners through small group presentations or one-on-one discussions. Interested individuals contacted facilitators directly, at which point the study and its procedures were explained before individuals with dementia chose to participate in the primary study.
Written informed consent was obtained at the start of the study, and ongoing informed consent and assent were provided from persons with dementia and their care partners throughout sessions. In total, 19 persons living with mild dementia aged 62 to 91 and five facilitators were included in the primary study. Sessions were conducted in the place preferred by participants and their care partners. Each facilitator had a different professional background. The Edmonton facilitator was an occupational therapist with a master’s degree, pursuing her PhD in Rehabilitation Science. The Vancouver facilitator had a bachelor’s degree in biomedical engineering, pursuing her Masters of Arts. Two of the three Toronto facilitators had bachelor degrees in psychology backgrounds, while the third had experience as a care partner to a person living with dementia.
Although digital storytelling initiatives typically utilize group sessions and workshops, the primary study used one-on-one sessions. Sessions were based on a modified version of the Elder’s Digital Storytelling Workshop for Older Adults developed by the Elder’s Digital Storytelling Project (Hausknecht et al., 2017).
Secondary Analysis
All authors of this secondary analysis are occupational therapists with post-graduate degrees. See supplementary material for additional details on the authors.
Data set used in secondary analysis.
Data Analysis
This study used thematic qualitative content analysis. Qualitative content analysis was used to identify codes and categorize them (Mayan, 2009). A thematic approach is beneficial when there is limited existing theory or research literature on a phenomenon (Hsieh & Shannon, 2005), allowing the researcher to identify specific meanings and determine appropriate categories and themes.
Three research assistants analyzed the transcripts. See supplementary material for details on these assistants. The primary assistant is also the primary author of this secondary analysis. The primary assistant completed analysis of two Edmonton participants as well as all of the Vancouver and Toronto data, and verified coding completed by the other two assistants. The other two assistants each completed analysis for two Edmonton participants. Each assistant immersed herself in the data by listening to the audio recordings while reading the transcripts and recording notes on initial reflections. This was followed by coding in which transcript segments were identified using keywords. Next, similar codes were grouped, refined, and categories were created to organize the codes. As new interpretations and codes were generated, they were added to the existing framework and previously coded transcripts were updated to reflect the expanding and changing hierarchy. The codes were created using comments on each transcript’s Microsoft Word file. A document code list and code hierarchy were created for each transcript, each site, and for the entire analysis. Code frequencies were calculated for each code hierarchy.
The iterative nature of data analysis (Higginbottom & Liamputtong, 2015) was reflected in the analysists’ evolving interpretations as additional transcripts were reviewed and further insight obtained. As a result, the codes and coding framework were refined repeatedly throughout analysis, enhancing credibility. This refining process follows Morse et al.’s (2002) approach to verification in which transcripts, codes, categories, and themes were re-checked between data generation and analysis, and between abstractions and raw data. Credibility was also influenced by prolonged engagement (Finlay, 2006) and peer debriefing, a strategy to enhance trustworthiness (Barber & Walczak, 2009). Codes, code descriptions, categories, and category descriptions were reviewed, discussed, and confirmed with transcript excerpts during monthly peer debriefs with another author. Between peer debriefs, the evolving analysis was shared through Google Docs so the peer reviewer could double check the work. Peer debriefs enable scrutinizing codes and categories to enhance their clarity and internal and external homogeneity (Mayan, 2009). It also facilitated consideration of alternative perspectives, interpretations, and explanations and inspired reflexivity. Given the intensity of the peer debriefing and review of transcripts and excerpts, approximately half of the raw transcripts were double checked by the peer reviewer. Excerpts from additional transcripts were also re-checked against the coding framework particularly when the key findings were generated. When preliminary findings were generated, they were presented to the other authors who scrutinized the excerpts against the codes, coding hierarchy, and findings.
Transferability was achieved using “thick and dense” (Richards & Morse, 2007, p. 109) data. In total, 83 transcripts were analyzed from which we integrated excerpts from these interactions. For dependability, an audit trail of the processes was kept through which data was generated and analyzed as well as the produced findings (Rodgers, 2008). Another investigator who was not involved in data analysis reviewed the audit trail for transparency. We enhanced confirmability through reflexive journaling, peer debriefing, and keeping an audit trail.
Findings
Three key elements of digital storytelling emerged from the data: “communication,” “building collaborative relationships,” and “technology use.”
Each element is comprised of sub-categories that reflect strategies used to communicate, build a collaborative relationship, and use technology. Although they are separate skills, the communication, relational, and technological elements that facilitators used were employed simultaneously during the digital storytelling process, one after another, rather than in isolation. Excerpts from transcripts highlight elements facilitators used during digital storytelling. For the quotations, participants with dementia are identified with a pseudonym and facilitators are identified by “site name, facilitator.”
Communication
The communication category included seven subcategories of verbal communication strategies that facilitators used with participants during digital storytelling. A total of 22, 478 codes were identified (Figure 1). The categories highlighted below ( Elements of facilitating digital storytelling and code frequencies.
Active Listening
Active listening was used by facilitators to indicate to persons with dementia they were being heard ( James: Vancouver facilitator: James: ... Vancouver facilitator: James: ...
Questioning
Strategic questioning was used to elicit storytelling and obtain details, suggestions, or feedback from the person living with dementia ( Vancouver facilitator:
Supporting Communication
Facilitators capitalized on communication strategies when working with participants that ensured they were given support and the opportunity to communicate ( Edmonton facilitator: John: Edmonton facilitator: John: if if (sigh) Edmonton facilitator:
The facilitators redirected participants, as well as rephrased, repeated, and re-explained concepts throughout sessions. Redirecting occurred when facilitators guided participants back to the topic or task. The ability to recall and apply information learned or discussed previously enabled facilitators to direct conversation or elicit more detail: Vancouver facilitator:
Facilitators supported communication through adaptive strategies such as writing instructions on paper, singing, creating a script, using photographs as prompts, and verbalizing actions in the moment. For example, facilitators verbalized what they were doing with the video-editing technology as they were doing it. This assisted participants to understand and follow along with a facilitator’s actions, as well to provide immediate feedback: Vancouver facilitator:
Responding
Facilitators responded to participants as any two individuals would in conversation ( Sheila: Vancouver facilitator:
Building Collaborative Relationships
Facilitators built relationships with participants while simultaneously collaborating to enable storytelling. The foundation of trust and rapport between a facilitator and participant with dementia enabled and strengthened collaboration. This element of digital storytelling was comprised of five subcategories with a total of 4150 codes (Figure 1). The three subcategories with the highest code frequencies (
Co-creation of the Digital Story
Facilitators ensured there was joint authorship to create a meaningful process and product for the person with dementia (
Feedback from participants was the most impactful aspect of co-creation. When facilitators asked for feedback, direction, or input, they were demonstrating that they wanted the person with dementia to be involved in the process and make decisions about the digital story: Edmonton Facilitator:
The facilitators offered suggestions and used inclusive language. Facilitators suggested next steps in the digital story creation process, generated ideas, elicited story sharing, and assisted with choice. Facilitators’ use of inclusive language included “let’s,” “we,” “we’re,” and “we’ll.” These words demonstrated the collaborative nature of facilitators, rather than one-sided language such as “I” or “I will.” Facilitators’ language included participants in the process and encouraged participation as co-creators: James: Vancouver facilitator: James: Vancouver facilitator: James:
Finding Common Ground
Facilitators used ways of relating to participants to share emotions, common experiences or similarities ( Edmonton Facilitator: Brent: Vancouver facilitator:
Facilitating Autonomy and Competence
Facilitators supported decision-making capacity to promote participants’ autonomy and competence as co-creators ( Vancouver facilitator: Audrey: Vancouver facilitator: Audrey: Vancouver facilitator: Audrey:
Facilitators’ actions of encouraging and allowing a person living with dementia to make decisions about which stories to share or what photographs to include, enabled participants to feel empowered and autonomous. Some stories shared by participants were not complete, and the facilitator collaborated with participants to elicit information to fill in the gaps. This further emphasized a sense of self and overall identity, as well as competence and success: William: Edmonton facilitator:
Technology Use
A third element emphasized the importance of the facilitators’ comfort and competence with technology use. A total of 743 codes were identified (Figure 1). Facilitators used technology while simultaneously communicating, adapting the process as needed and building a therapeutic relationship. Technology use included four subcategories, with
Competence with Technology
Facilitators’ ability to use technology throughout the digital storytelling process with ease ensured flow throughout sessions ( Vancouver facilitator:
Facilitators’ Positionality
Despite facilitators having different disciplinary orientations and worldviews, the key elements of communicating, building relationships, and using technology to conduct digital storytelling with participants were present throughout. Facilitators varied in strengths and approaches based on professional and experiential knowledge.
The Edmonton facilitator was an occupational therapist. She emphasized providing time and space, meaning in the process, and co-creation as an active agent, all of which align with occupational therapy framework, values, and practice. This facilitator’s goal was to find meaning in the digital storytelling process and product: Edmonton facilitator:
The Vancouver facilitator had a biomedical engineering background and employed technology differently to co-create, seek feedback, adapt and, explain during digital storytelling. She continuously sought feedback from her participants on the digital presentation and adapted it directly from the feedback received. Overall, the co-creation piece was emphasized through the use of technology: Brent: Vancouver facilitator: Brent:
The three Toronto facilitators came from psychology and dementia caregiving backgrounds. They emphasized redirecting and reorienting, ensuring the physical needs of the participants were met, and engaging in creative co-creation. The facilitator with dementia caregiving experience demonstrated an ability to redirect and reorient the participant. This facilitator employed an organic and animated approach, and engaged participants in song, music, and humor: Toronto facilitator:
Discussion
The purpose of this study was to explore and determine elements of digital storytelling facilitation when working with persons living with dementia. This study provides insight into the common elements that facilitators employ to communicate, build relationships, and use technology during digital storytelling, and highlights the meaningful role facilitators have in the process with participants who have dementia. This study differs from previous research as it discusses key elements of facilitating digital storytelling, rather than its benefits, limitations, or experiences, providing a new contribution to the literature.
Facilitators used communication strategies and relational skills to elicit information and build partnerships with participants. The development of rapport, comfort and trust with participants and their families strengthened the collaborative relationship. A safe relationship enabled participants to share stories and their sense of self through conversations, reminiscence and technology. Story sharing enabled facilitators to weave a participant’s narrative and identity into a digital story through technology and the facilitator’s individualized approach. The communication, relational, and technological elements that facilitators used were employed simultaneously or sequentially, rather than in isolation.
The findings of this study support the concept that a digital storytelling facilitator’s role is that of a weaver. As such, this relationship is represented as a woven braid, rather than a hierarchical figure or relationship (Figure 2). The facilitators were crisscrossing between strategies, communicating, building relationships, and using technology all while weaving information with identity with narrative into a digital story. Facilitators as weavers in digital storytelling and digital story creation.
Active listening, strategic questioning, responding, and supporting communication enabled story sharing between facilitators and participants, which provided the narrative and theme for the digital story. When persons living with dementia shared stories, the information communicated may be incomplete. Facilitators often received pieces of stories or fragments of ideas, rather than a cohesive story. They took information provided by a participant and wove it together with pictures, music, and narration. Baldwin (2006) describes piecing together smaller stories as one approach to assist the person living with dementia to tell a story. Facilitators used this tactic during digital storytelling to weave pieces of information elicited from participants to create the final digital story. A facilitator’s role is consistent with what Moore and Davis (2002) refer to as
Facilitators ensured that participants were comfortable in the process of sharing to create a digital story that aligned with their identity. Fels and Astell (2011) stated connections are made through “sharing our experiences and finding points of similarity or things we have in common” (p. 535). However, it may be difficult for people to open up to strangers (McKillop & Petrini, 2011). In the digital storytelling process, participants are required to open up to the facilitators. A degree of trust was developed when facilitators built relationships with and related to participants over sessions. McKeown et al. (2015) define co-creation in storytelling as “joint authorship,” or a way to support the ability of an individual with dementia to contribute to one’s story. In addition to supporting a participant’s contributions, it was important facilitators acted to ensure participants were aware of and believed in ownership of their story (Fels & Astell, 2011). Autonomy is valued by all, but as one ages, the ability to exercise autonomy decreases (Liu et al., 2022). Through a collaborative approach and co-creation, autonomy can be realized for persons who live with dementia, through a sense of control, promotion of competency, and engagement in the meaningful activity of digital storytelling.
Digital storytelling required facilitators to use technology and participants to interact with technology. Facilitators were able to work through technological difficulties, adapt the technology to participants' needs, and show participants digital stories during the creation process. Participants could provide immediate feedback and changes could be made during sessions, which may have reinforced their autonomy. This is advantageous not only from an efficiency perspective but also in consideration of memory loss associated with dementia. The ability to obtain feedback and demonstrate eased the process, assisted participants to make decisions, and minimized the need to remember information between sessions. The technology used to create digital stories was the catalyst for engagement in storytelling, reminiscence, and social connection.
Digital storytelling required a facilitator to be engaged in storytelling and weave the narrative and meaning for participants with dementia. When considering all the steps that are required to create a digital story, the digital storytelling facilitator could also be described as a tour guide for persons living with dementia. The facilitator is the person who considers all the steps and details of a digital story and, like a tour guide, guides the person living with dementia through the digital storytelling museum through sessions to create the final product. A digital storytelling facilitator guided the person living with dementia to successfully reach the final digital story product.
Limitations
Our analysis relied on transcripts of audio recordings of digital storytelling sessions. Video recordings with audio may have provided additional information about interactions such as body language, gestures and how technology was used. Such visual data may have helped refine codes, verify verbal data, and impacted code frequency.
The participants living with dementia who took part in the primary study are not representative of the dementia population. The participants in the primary study had mild dementia, were able to verbally communicate with facilitators, and did not demonstrate responsive behaviors. Thus, they were a sub-set of the dementia population. The key elements of facilitating digital storytelling may have differed with participants in later stages of dementia; for example, facilitators may have had to rely on involvement of care partners.
Contributions to Literature
A recent literature review revealed a paucity of research specific to this population, the roles of the digital storytelling facilitator and what facilitators do during storytelling (Rios Rincon et al., 2021). There is minimal information on the methods used for collecting and analyzing data in published studies, which compromises the credibility, dependability, confirmability, and transferability of previous qualitative research (Rios Rincon et al., 2021). Our study identified common elements that may assist people such as health care professionals, paid caregivers (e.g., personal support worker), care partners (e.g., family member, friend), community organizations (e.g., Alzheimer Societies), volunteers care partners, and researchers in facilitating digital storytelling with persons living with dementia. Further, the rigor demonstrated in our data analysis can inform future digital storytelling research and enhance trustworthiness.
Conclusion and Clinical Application
Facilitation of digital storytelling with persons living with dementia consists of three key elements: communicating, building collaborative relationships, and using technology. Facilitators weaved these three elements to enable the process of digital storytelling and the co-creation of a final digital story product. The facilitators’ actions demonstrated a person-centered approach that enabled autonomy and an experience of competence for participants living with dementia. Regardless of background, facilitators demonstrated proficiency with technology and employed similar communication strategies and relational skill sets to collaborate with persons with dementia. These elements contributed to comfort and trust and allowed a person with dementia to reflect on meaning and elicit storytelling. Facilitators used technology as a bridge to weave together participants' narratives and meaning into a digital story as co-creators.
This study demonstrates that individuals from varying professional backgrounds and experiences may assume the role of digital storytelling facilitators with persons living with dementia. Future research on facilitators’ individual strengths and challenges can inform facilitator education. Digital storytelling is a meaningful activity for persons living with dementia to reinforce one’s identity through a legacy product (Park et al., 2017). Facilitator education that weaves narrative and meaning while employing communication, relational, and technological strategies would enable facilitators to co-create legacies through digital stories with persons living with dementia.
Supplemental Material
Supplemental Material - Digital Storytelling with Persons Living with Dementia: Elements of Facilitation, Communication, Building Relationships, and Using Technology
Supplemental Material for Digital Storytelling with Persons Living with Dementia: Elements of Facilitation, Communication, Building Relationships, and Using Technology by Kara Hollinda, Christine Daum, Adriana M. Rios Rincón, and Lili Liu in Journal of Applied Gerontology
Footnotes
Acknowledgments
Declaration of Conflicting Interests
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Supplemental Material
References
Supplementary Material
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