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Table 2 Study characteristics of included studies by digital storytelling method

From: The use of digital storytelling of patients’ stories as an approach to translating knowledge: a scoping review

Author/year/country Study aim/purpose Study design Rationale for digital storytelling method Target population Type of KT Findings
Audio/visual presentations (video format)
Adams et al./2015/UK To explore the long-term impact of filmed patient narratives (“patient films”) as sources of meaningful and reliable knowledge Qualitative—ethnographic evaluation To provide healthcare providers with stories of patient experience Healthcare professionals Educational material Presenting patient stories encouraged reflection and reflexive learning
The “patient films” were reported as powerfully persuasive
This knowledge was associated with intimacy, “real communication”
Digital stories were contrasted with the disinterested and impersonal expertise of statistics
Benson/2012/USA To evaluate how digital stories contributed to goals of policy change, engaging community members and increasing understanding of health disparities Qualitative—community forums, written surveys, structured observations (thesis) To engage community to increase awareness, and lead to policy change Patients, caregivers and policy makers Educational material, community outreach to influence policy Digital stories provided a fresh perspective of health disparities in an authentic way
Using digital stories in community forum facilitated policy changes in all four areas and promoted community engagement
Canning and Phinney/2015/Canada To explore the use of data documentary film for accessing the subjective experiences of the participants, and for knowledge translation Qualitative—visual narrative To inform healthcare professionals and policy makers in a personal way about living with dementia Healthcare professionals, policy makers Educational material, community outreach to influence policy Using documentary data to hear voices of people with dementia brought the viewer into the experience of participants
The film elicited strong emotions by viewers in a powerful and engaging way
In dementia research, using documentary films as a KT tool is effective for bringing different community members together
Clerici et al./2012/Italy To investigate the availability and type of video content on YouTube in relation to rhabdomyosarcoma and soft-tissue sarcoma in children Media review—cross-sectional methods To share strategies for coping and other available resources Patients, caregivers and healthcare professionals Mass media, knowledge exchange Video-sharing sites such as blogs and social media made it easier for patients to describe their impressions and experiences of the disease
Their experiences helped other patients devise strategies for coping with the disease
Sharing online provided patients with support and opportunities for exchanging information and resources
De Vecchi et al./2016/Australia To identify how and in what areas digital storytelling has been used in mental health Scoping review To enhance relationships between patients and healthcare professionals during the recovery process Patients, caregivers and healthcare professionals Educational material, knowledge exchange May enable consumers, carers and healthcare professionals to work together to learn about, understand and empathize with each other’ s lived experience
Has implications for the development of recovery oriented mental health services
Lack of uptake of this method in research in mental health services may be a missed opportunity
Hardy/2016/UK To document the development of digital storytelling in healthcare and to examine, the contribution made via the Patient Voices Programme, to the wider genre of digital storytelling Narrative summary of multiple studies—qualitative methods (dissertation) To focus on health education, advocacy, and quality improvement Patients, caregivers, healthcare professionals and policy makers Mass media, educational material Patient Voices Programme has developed over 1000 digital stories in health
Patient stories have been used to understand experiences to balance statistical evidence about health experiences
Provided evidence that digital storytelling can be adapted for use in different contexts
Used a solid ethical foundation to protect those sharing stories
Kelly-Hedrick et al./2018/Canada To (1) describe the video content of the most highly viewed fertility-related YouTube videos and (2) identify video characteristics that relate to viewer favourability (eg, video likes, shares) Media review—content analysis To disseminate information about fertility to other patients Patients and partners Mass media, knowledge exchange Reliance on YouTube for infertility information may foster unrealistic expectations regarding the success rates of treatment, which may influence treatment decisions
As fertility patients frequently access the internet for information, research is needed to establish whether YouTube content can affect the perceptions of infertility treatment among fertility patients
Laing et al./2017/Canada To understand the effect of watching digital stories on healthcare professionals made by (past and present) pediatric and young adult oncology patients, including usefulness, and impact on practice Qualitative—hermeneutics To share digital stories with healthcare professionals, as a way to inform and enhance understanding of young adult cancer related experiences Healthcare professionals Educational material Reflective digital storytelling powerfully assisted practitioners to understand patients’ experiences
Both the creation and viewing of digital stories can lead to new insight, understanding, and more generative approaches to care
Viewing digital stories were about understanding an experience versus simply explaining it, and therefore may be at the heart of patient engagement and health care delivery in general
Digital stories have practical implications in health care systems that struggle to do more with fewer resources
Lal et al./2015/Canada To introduce digital storytelling and to propose how it can be applied in occupational therapy Narrative review To review potential uses of digital storytelling in occupational therapy Healthcare professionals Educational material Promising for application within the field of occupational therapy—as a useful tool for therapists, educators, and researchers
Digital stories can facilitate the dissemination of research findings in accessible and engaging ways, conveying key messages to promote the quality of care
Shapiro et al./2009/USA To learn about patients' lives through making films collaboratively with medical students and patients Mixed methods—interviews, quantitative evaluations To understand patients using an engaging and collaborative method Healthcare professionals Educational material, knowledge exchange Students reported that the project affected what they planned to cover in clinic visits, increased their plans to involve patients in care, enhanced their appreciation for patient-centered care, improved their knowledge of community resources, improved their understanding of allied health professionals’ roles, and taught them about patients’ innovative adaptations
Multiple resources with embedded stories
Engler et al./2016/Germany To investigate how a website that presents narratives of cancer patients is used by other cancer patients, and what users expect and learn from such a website Mixed methods—log file and survey data analyses, thematic analysis of focus groups Website with patient stories and videos to enhance knowledge of other patients Patients and caregivers Educational material, knowledge exchange A valuable and beneficial resource that provided a wide range of diverse experiences
Participants used the website to find people with similar characteristics
They reported that the stories helped them to reflect on their own situation and the narratives provided hope and gave them confidence
Marir et al./2014/Dubai To extract and store knowledge about diabetes diagnosis, diet, lifestyle, medicine, and activities from social networks, patient stories and other text document sources Media review—text mining Database of patient experiences to provide information to healthcare professionals about patients with diabetes Healthcare professionals Educational material Knowledge repository can be useful for diabetes based on knowledge discovered from applying text mining to raw textual data collected from social networks MEDLINE medical publication records is feasible
These data were stories of people telling their accounts of diagnosis, i.e. how they found out about it, their lifestyle before, as well as the certain events and actions that led to the realization of the disease
Stellefson et al./2018/USA This study reviews a free, publicly available online community and support network hosted by the COPD Foundation known as COPD360social Descriptive summary Social network for communication and knowledge exchange regarding COPD Patients, caregivers and healthcare professionals Mass media, educational material, knowledge exchange, community outreach COPD360social is an innovative social networking initiative that has improved how patients, caregivers, and practitioners communicate about COPD related research, education, and advocacy
It provided an interactive network that fosters patient education and community engagement
For health education/promotion practitioners, COPD360social served as a reputable, inclusive network for COPD-specific emotional, instrumental, and informational support
Ziebland et al./2015/USA The DIPEx International project (http://www.dipexinternational.org) is a collaboration of qualitative health researchers which present analyses and hundreds of video and audio interview extracts Descriptive summary Videos of patient experiences on a website to be shared as a resource with other countries Patients, caregivers and healthcare professionals Mass media, educational material The Internet presents opportunities to transform the experience of chronic pain and other health conditions by drawing on people’s willingness to share their experiences online
One implication is locally led, culturally appropriate projects to produce e-health resources in developing countries and from marginalized communities in developed countries
Interactive platform/multiple contributors
Chiu and Hsieh/2012/Taiwan To understand why cancer patients write on the internet, including their blogs and support group sites and how writing and reading other patients’ messages impact their cancer experiences Qualitative—focus groups, grounded qualitative analysis Blogs and online forums to exchange information with other patients and caregivers Patients and caregivers Mass media, knowledge exchange Health professionals could help or encourage newly diagnosed cancer patients to write and interact with other patients on the internet to assist them in coping with their illness and acquire social support
Participants reported that sharing stories was therapeutic, meaningful, and empowering
Frohlich/2019/USA To determine how leaders of online Inflammatory bowel disease communities perceive their responsibility for disseminating health information to other people with inflammatory bowel disease Qualitative—digital ethnography Online chat communities (forums) for information dissemination and exchange Patients and healthcare professionals Mass media, knowledge exchange Personal experiences as another kind of health information was sometimes more helpful than technical information
Community members noticed there was little interaction between medical authority and patient authority members
Online communities were used to gain information about how inflammatory bowel disease affects one’s daily life, something medical professionals did not offer
Reid et al./2017/Canada To work with children attending the pediatric chronic pain clinic and their parents to develop, refine, and evaluate the usability of narrative-based e-book for pediatric chronic pain Mixed methods—interviews, feedback, usability evaluation An e-book of a patient with pediatric chronic pain, based on patient experiences to be shared with parents as a KT tool Caregivers Educational material Parents preferred receiving health information in a narrative form rather than the standard information-based format
Parents preferred the e-book over standard ways of receiving health information, and they were likely to recommend the e-book to others
There was an increase in knowledge about the topic after reading the e-book
Salzmann-Erikson and Hicdurmaz/2017/Sweden To describe how individuals suffering from post-traumatic stress use social media to communicate authentic narratives of their life conditions Qualitative—descriptive, netnographic (online qualitative research) Online communities (forums) for communication and knowledge exchange among patients with PTSD Patients and caregivers Educational material, knowledge exchange Computer mediated communication provided PTSD sufferers a way to reveal themselves, to experience the universality of the problem, to receive support and help from other people, and to fight against stigma
Workshop based digital stories
Cueva et al./2016/USA To understand (a) how creating a cancer-related digital story affects Alaskan community health aid /professionals’ (CHA/Ps) cancer knowledge, attitudes, and health behaviors, and (b) how the CHA/Ps used digital stories as health communication tools Mixed methods—group teleconference, end of course evaluation, surveys Workshop based patient and caregiver experiences videos disseminated in Alaskan communities as a KT tool Patients and healthcare professionals Educational material, knowledge exchange, community outreach Cultural relevance, brevity, reproducibility, and flexibility of digital stories may be widely translated into diverse settings and locales, increasing their impact potential
Indigenous digital stories have the potential to open cancer conversations and impact cancer prevention and detection behaviors to change the story of cancer among Indigenous people
Halter/2015/USA To learn how the use of digital stories can advance the growing community partnership created in the Yakima Valley and improve and further promote health equity Qualitative—community Based Participatory Research, interviews and focus groups (dissertation) Workshops to capture patient experience to advance a community partnership with local health organization Patients, caregivers and healthcare professionals Educational materials, community outreach For storytellers, it provided a healing outlet to critically reflect on a difficult experience and find support within one’s own community
For viewers, digital stories were far more impactful than other forms of health education materials that may not be culturally appropriate or accessible to the members of this population
The engagement process of building capacity and collaborating within a community was an important way for community organizations to foster relationships within the community
Njeru et al./2015/USA To report on the process and outcomes of the participatory development of a diabetes storytelling intervention as a KT tool Qualitative—community Based Participatory Research, focus groups Workshop based digital stories of patient experience for people with diabetes to be shared with the Somali and Latino communities Patients and caregivers Educational material, Community outreach The participatory processes of developing a digital diabetes storytelling intervention to improve type II diabetes management with Somali and Latino participants may be useful for other partnerships seeking to develop homegrown interventions to address local health concerns with and for community partners