The use of digital storytelling of patients’ stories as an approach to translating knowledge: a scoping review
by Elly Park, Mary Forhan & C. Allyson Jones
Background. A growing interest has centered on digital storytelling in health research, described as a multi-media presentation of a story using technology. The use of digital storytelling in knowledge translation (KT) is emerging as technology advances in healthcare to address the challenging tasks of disseminating and transferring knowledge to key stakeholders. We conducted a scoping review of the literature available on the use of patient digital storytelling as a tool in KT interventions.
Methods. We followed by Arksey and O’Malley (Int J Soc Res Methodol 8(1):19–32, 2005), and Levac et al. (Implement Sci 5(1):69, 2010) recommended steps for scoping reviews. Search strategies were conducted for electronic databases (Medline, CINAHL, Web of Science, ProQuest dissertations and theses global, Clinicaltrials.gov and Psychinfo). The Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR) was used to report the review process.
Results. Of 4656 citations retrieved, 114 full texts were reviewed, and twenty-one articles included in the review. Included studies were from nine countries and focused on an array of physical and mental health conditions. A broad range of interpretations of digital storytelling and a variety of KT interventions were identified. Digital storytelling was predominately defined as a story in multi-media form, presented as a video, for selective or public viewing and used as educational material for healthcare professionals, patients and families.
Conclusion. Using digital storytelling as a tool in KT interventions can contribute to shared decision-making in healthcare and increase awareness in patients’ health related experiences. Concerns centered on the accuracy and reliability of some of the information available online and the impact of digital storytelling on knowledge action and implementation.
by Maria Cecilia Cercato, Elvira Colella, Alessandra Fabi, Isabella Bertazzi, Barbara Giuseppa Giardina, Paolo Di Ridolfi, Mara Mondati, Patrizia Petitti, Liciano Bigiarini, Virginia Scarinci, Alessandro Franceschini, Francesca Servoli, Irene Terrenato, Francesco Cognetti, Giuseppe Sanguineti, Cristina Cenci
Objectives: We implemented narrative medicine in clinical practice using the Digital Narrative Medicine (DNM) platform.
Methods: We conducted a preliminary, open, uncontrolled, real-life study in the oncology and radiotherapy departments of Istituto di Ricovero e Cura a Carattere Scientifico National Cancer Institute Regina Elena, Rome, Italy. We recruited adult Italian-speaking patients who then completed the DNM diary from the start of treatment. The primary endpoint was DNM feasibility; secondary endpoints were health care professionals’ opinions about communication, therapeutic alliance, and information collection and patients’ opinions about therapeutic alliance, awareness, and coping ability. We used open- and closed-ended questions (scores 1 to 5) and a structured interview.
Results: Thirty-one patients (67%) used the diary (84% women). Health care professionals’ mean scores for feasibility and utility were ≥4.0. Patients’ utility scores were related to health care professionals’ feedback regarding the narratives. The main advantages for health care professionals were the opportunity to obtain relevant patient data and to strengthen communication and patient relationships (mean scores 4.4-5.0). Both groups strongly encouraged introduction of the diary in clinical practice.
Conclusion: Use of the DNM in oncology patients assisted clinicians with understanding their patients experience.
Narrative Medicine: A Digital Diary in the Management of Bone and Soft Tissue Sarcoma Patients. Preliminary Results of a Multidisciplinary Pilot Study
by Maria Cecilia Cercato, Sabrina Vari, Gabriella Maggi, Wioletta Faltyn, Concetta Elisa Onesti, Jacopo Baldi, Alessandra Scotto di Uccio, Irene Terrenato, Claudia Molinaro, Virginia Scarinci, Francesca Servoli, Cristina Cenci, Roberto Biagini, Virginia Ferraresi
Background: Guidelines for the implementation of narrative medicine in clinical practice exist; however, in Italy, no standard methodology is currently available for the management of oncological patients. Since 2017, at the “Regina Elena” National Cancer Institute, studies using “digital narrative diaries” (DNMLAB platform) have been carried out; this article focuses on a pilot, uncontrolled, real-life study aiming to evaluate the utility of DNM integrated with the care pathway of patients with bone and limb soft tissue sarcomas.
Methods: Adult patients completed the diary during treatment or follow-up by writing their narrative guided by a set of narrative prompts. The endpoints were: (a) patients’ opinions about therapeutic alliance, awareness, and coping ability; (b) healthcare professionals’ (HCPs’) opinions about communication, therapeutic alliance, and information collection. Open- and closed-ended questions (Likert score: 1-5) were used to assess the items.
Results: At the interim analysis of data from seven patients and five HCPs, DNM was shown to improve: (a) the expression of patients’ point of view, the perception of effective taking charge, disease awareness, and self-empowerment (score: 4.8/5); (b) patients’ communication, relationships, and illness knowledge (score: 4.6-4.8/5).
Conclusions: The preliminary results supported the need to integrate patients’ narratives with clinical data and encourage further research.
by Cristina Cenci, Oriano Mecarelli
Among neurological conditions, epilepsy is the disorder best suited to a narrative approach. In epilepsy, the disease, i.e., the condition from the clinical and therapeutic point of view, the illness, the personal experience and impact of the condition, and the sickness, the representations, and social imaginary of epilepsy, are strongly interdependent. Within this context, the Italian League Against Epilepsy (LICE) has launched a multiyear narrative program in Italy resulting in the foundation of a specific Study Group on Narrative Medicine in Epileptology. The Epimena Study is part of this program and involves the “Epilepsy Center, Department of Human Neurosciences, Sapienza University of Rome and Umberto 1° Hospital”. The study consists of a pilot project whose aim is to assess the usefulness and feasibility of integrating narrative medicine methodologies into routine clinical practice through a digital platform. The carrying out of the study is based on the acquisition of narrative elements of the patient that the referring doctor uses, integrating them with clinical data, to share and customize the diagnostic–therapeutic pathway of patients. The Epimena Study preliminary results look encouraging. Over 12 months, 57% of the invited patients (37 out of a total of 65) decided to formalize their registration in the digital diary, and 46% responded to one or more narrative prompt generating the story of their experience. Every patient story was then analyzed according to a methodology (Illness Digital StoryMap – IDS) that made it possible to detect the existential impact of the disease and the perception of care. Patients’ overall judgment on the project was positive. Through it, they were able to better focus on themselves, bringing out and communicating information to the physician that otherwise would not have been taken into consideration. The majority of patients involved believe that the methodology should be included in the regular clinical practice or in any case would like to continue using it. The data collected confirmed that the time spent on story sharing contributed objectively to a clinical practice of greater quality and effectiveness.