Symposium at the Qualitative Health Research Conference in Vancouver: Creative approaches to knowledge translation: Translating narrative findings of death and dying

The research team recently presented at the Qualitative Health Research Conference in Vancouver.  Our symposium focused on creative approaches to knowledge translation,  and involved three presentations:  Arts-based, performative KT with sensitive topics;  Expanding access and audience through digital and video production; and  Lessons learned: Practical strategies for creative KT activities.

Overview:
Chair: Anita Molzahn
In this symposium we will share: a) challenges faced when working with dyads and the sensitive topic of death and dying in narrative inquiry; b) experiences with two forms of video production; and c) the lessons learned from a range of creative, arts-based and digital knowledge translation approaches. We draw from two consecutive narrative inquiries in which we explored the uncertainty of living with life-limiting chronic illnesses (advanced cancer, chronic obstructive pulmonary disease, end-stage kidney disease, heart failure, and HIV). In the first study we explored patient perspectives of living with a fatal chronic condition, and expanded in the second study to include the uncertainties of living-and-dying with dyads of patients and family caregivers. The two longitudinal studies involved 32 and 83 participants (32 dyads) respectively. We sought depth and richness by interviewing participants multiple times over one to three years. Our knowledge dissemination strategies were varied and creative in nature.

Abstract 1: Arts-based, performative KT with sensitive topics
Anne Bruce, Kara Schick-Makaroff, Anita Molzahn
Through this presentation, we will discuss how we focused knowledge translation (KT) strategies towards specific audiences through performance presentations, art exhibits, found poetry, and booklets. These included patients and families, policy-makers, educators, students and practitioners. In using creative approaches to address the sensitive topic of death and dying, there were potential pitfalls and unforeseen outcomes. Since we did not always know our audiences’ background and experiences, our team was attentive to how the KT activities would be received and (mis)understood. Some clinicians voiced apprehension about sharing resources about death and dying with patients that may be too direct or too explicit. These unexpected responses opened opportunities for further analysis and KT
development. An additional challenge arose with family and caregiver data collection (conducted separately) that impacted KT. Our second narrative study included family member (dyadic) interviews, where people living with a chronic illness and their family member were asked to share experiences of uncertainty through photographs. Although we aimed to keep these images separate and confidential, the dyads often shared their images with each other. However, during separate individual interviews, participants often shared stories about the images that were private, including experiences they may not have shared with their dyadic partner. This posed ethical and methodological challenges when linking images

Abstract 2: Expanding access and audience through digital and video production
Laurene Sheilds, Marcy Antonio, Kara Schick-Makaroff
In Canada, the knowledge translation (KT) process is most commonly described in terms of the Knowledge to Action Framework developed by Graham et al. (2006). The framework outlines a step-wise process for knowledge synthesis, but this does not necessarily reflect our experience with narrative KT. Through this presentation, we will introduce two different approaches we used in developing videos for knowledge mobilization and how these activities were part of our emergent qualitative design. We will discuss how our process for creating videos integrated back into our narrative analytic approach, and the key decisions we made during video production.

In our first study, video production followed a documentary format, where individual participants were contacted after formal data collection to see if they would like their stories shared through an audio recording. The videos represented participants’ actual voices and incorporated professionally taken photographs that were connected to what participants had shared. The second format involved developing a script from key messages the team identified within our narrative data. The script brought together multiple participants’ experiences, relied on editing by the video production team to create continuity and interest, and was communicated by professional actors. Through video excerpts, we will demonstrate how selecting videos as a KT activity requires consideration of the implications of a) working with a production team; b) embodying participants’ words through their own voice or with actors; c) adhering to current preferences for short video segments; d) representing the multilayered aspects of people’s lives; and e) integrating analysis within the knowledge synthesis process.

Abstract 3: Lessons learned: Practical strategies for creative KT activities
Marcy Antonio, Kara Schick-Makaroff, Robyn Wiebe
Although creative dissemination of qualitative findings is laudable, the process and complexity of these strategies raise important considerations. Negotiating how to integrate what is expected from digital and artistic productions versus research findings is a key consideration. We will explore analytic, creative and institutional differences we have encountered in generating KT that evocatively engage an audience, honour participants’ narratives, and adhere to university/ethics/funding requirements. We will discuss how we worked with media consultants and art curators in addressing the tension between staying close to the data and providing “creative license” to maximize artistic impact.
This was most poignant when the deeply personal photos that participants shared that were so critical to our analysis, were found not to provide the “quality” required for digital media. The development of our web site was also not straightforward; the institutional requirements for fitting with “the brand” lead us to search for other online formats where we would have more flexibility as to how we could present our data. Additionally, with a restricted time frame imposed by funding agency requirements, we found ourselves juggling the demands of in depth analysis with KT activities. Through this presentation, we describe these and other examples of how to plan for creative KT activities, budget for a range of resource-intense approaches, work with art curators, or media consultants, and ways of matching data with different KT forms.

Exploring Narrative Analyses and Dissemination: Re-stor(y)ing Life within Life-threatening Illness Symposium

Our team presented at the Qualitative Health Research Conference in Victoria, BC.  The symposium began with a an arts-based presentation that shared people’s experiences of living with life threatening illness, followed by exploring metaphors of HIV and ended with some of considerations for knowledge translation.

Exploring Narrative Analyses and Dissemination: Re-stor(y)ing Life within Life-threatening Illness 

Symposium

Chair:Anita Molzahn,

Introduction: Increasing numbers of people with serious illness live in-between the promise of treatment and the threat of recurrence or progression of disease and yet this experience is not well understood. A better understanding of these liminal experiences is important for developing meaningful supports and resources to improve quality of life for people living with cancer, end-stage renal disease and HIV. This symposium will focus on mixed analytic and dissemination approaches within narrative inquiry. Drawing on findings from a narrative study exploring how people living with life-threatening illness story and re-stor(y) their lives, the symposium will present: 1) narratives of keeping secrets using métissage; 2) describe how metaphor may illuminate stories of aging with HIV; and 3) explore the space between data analysis and Abstract, Symposium 575 dissemination using an array of knowledge translation strategies. Creative and innovative analytic and dissemination strategies to share stories of living with life-threatening illness will be discussed.

Presentation #1: Keeping Secrets: A Métissage of Living with Life-Threatening Illness

Anne Bruce, Laurene Sheilds and Rosanne Beuthin

In Canadian society, living with a life-threatening health condition can be troublesome. For some patients, communicating openly and directly about their illness comes easily, while for others fear of disclosure keeps them silent. In this paper we discuss findings from a narrative study examining the nature of keeping secrets in the context of health and illness. These findings are part of a larger project studying how people living with life-threatening illnesses story and re-story their lives. A narrative approach drawing on Frank’s (2010) socio-narratology and Reissman’s (2008) inductive approaches were used. Semi-structured in-depth interviews were conducted with 32 participants representing three disease populations of interest: (a) 10 people living with cancer, (b) 14 with end-stage renal disease, and (c) 8 people living with HIV/AIDS. Using the metaphor of a double-edged sword we explore the importance of orientating to secrecy as a social practice that cuts both ways through three metonymic narratives of: connecting-and-isolating, protectingand-harming, and empowering-and-imprisoning. To bring the richness of narrative forward, we weave a ‘métissage’ approach for disseminating findings. Métissage uses performativity that lets stories breath (Frank, 2010), having others bear witness to the challenges people with life-threatening illnesses face when withholding and revealing about their illness. Using métissage as a performative methodology of narrative research, we create stories of similarity and difference, where narrators and listeners enter stories that play with particular themes and yet as metonymies refuse to be allied with any one.

Presentation #2: Metaphors of Aging with HIV

Rosanne Beuthin and Laurene Sheilds

The second presentation in the symposium focuses on metaphors embedded in the stories of older adults living with HIV, and how metaphors help illuminate often hidden meaning. The success of antiretroviral treatment has enabled persons with HIV to survive to age 50 and beyond. By 2015 approximately half of adults with HIV in the USA will be 50 and older. While HIV may be more manageable with medications, to age with HIV is not without challenges and the implications of this extended life expectancy are only beginning to be fully understood. For this reason, the graying of HIV is considered a new crisis. Metaphors have a powerful influence on how an individual tells of and lives their illness. They have the ability to shape, constrain, expose, liberate, or illuminate how one actually experiences the disease itself and their own person. Narrative inquiry was used to examine metaphors within the stories of five older adults living with HIV for at least 10 years. This presentation will offer a balance between description and interpretation, and highlight a Abstract, Symposium 576 shift in metaphors of aging within this population over the past three decades. Often it is the case that health care providers do not listen for, hear, or understand metaphors as a means to support wellness, yet an increased understanding of the role of metaphors used by adults aging with HIV can generate insights inspire and improve care.

Presentaion #3: Knowledge Translation in Action: The Space Between Analysis and Dissemination

Laurene Sheilds, Anne Bruce and  Rosanne Beuthin

The final presentation in the symposium will explore the tensions between qualitative analysis and knowledge dissemination through examining a range of knowledge translation (KT) resources. Data analysis and dissemination of findings are often described as distinct or sequential processes, however, our narrative research team has used the knowledge translation process to further our analytic skills and to explore how knowledge translation also illuminates the stories we tell. Based on narrative interviews with 32 participants conducted over a three-year period, including representational symbols of illness, findings from the project will presented through sharing a range of KT strategies. These innovative resources include web-based approaches (vignettes with participant voice overs), community brochures using aesthetically pleasing images and narrative quotations, and symbolic images with poetic renderings. The contribution of creative and innovative arts and web-based strategies will be discussed in relation to the analytic process of narrative research. While evaluation research on the impact of these arts-based strategies is needed, these strategies have benefits in guiding and focusing the process of analysis itself as well as in offering accessible and evocative platforms for nursing research.

Pointers and Pearls for Arts-based Approaches to KT

In addition to our symposium at the Qualitative Health Research Conference,  our also presented on Arts-based approaches to KT from our Re-Story study.

Abstract:  Creative platforms for disseminating nursing research hold untapped potential. In this presentation we share insights and challenges using arts-based approaches to bring research into public spaces. We draw on lessons learned from a narrative study of how people story and re-stor(y) their lives when living with chronic kidney disease, cancer, or HIV. Key considerations will be specified for researchers interested in developing art exhibits or web-based photographic vignettes to disseminate research findings. Pragmatic pointers from a recent art exhibit using 16 large format photographs of symbols displayed alongside brief text panels or music clips will be shared. Poetic renderings based on participants’ words were used to convey meanings and the multiple ways of sharing illness experience. Through symbols and narratives, we displayed knowledge of life-threatening illness in diverse venues including an art gallery, hospital, and government building. In addition, web-based vignettes with open access for the public were created https://www.uvic.ca/hsd/illnessnarratives  Three areas of practical concerns will be highlighted for researchers interested in using arts-based approaches: ethical considerations; curatorial and technical support; and recommended resources.

Reference: Bruce, A. and Sheilds, L. (2014) Pointers and pearls for arts-based approaches to KT.  Qualitative Health Research Conference. Victoria, BC. October 21-23, 2014.

Lessons Learned about Art-Based Approaches for Disseminating Knowledge

In this paper we discuss some of the key lessons we learned in organizing an art exhibit and other forms of art-based approaches to communicating narratives.

Abstract:

Aim: To present a case example of using an arts-based approach and the development of an art exhibit to disseminate research findings from a narrative research study.

Background: Once a study has been completed, the final step of dissemination of findings is crucial. In this paper, we explore the benefits of bringing nursing research into public spaces using an arts-based approach.

Data Sources: Findings from a qualitative narrative study exploring experiences of living with life-threatening illnesses.

Review Methods: Semi-structured in-depth interviews were conducted with 32 participants living with cancer, chronic renal disease, or HIV/AIDS. Participants were invited to share a symbol representing their experience of living with life-threatening illness and the meaning it held for them.

Discussion: The exhibit conveyed experiences of how people story and re-story their lives when living with chronic kidney disease, cancer or HIV. Photographic images of symbolic representations of study participants’ experiences and poetic narratives from their stories were exhibited in a public art gallery. The theoretical underpinning of arts-based approaches and the lessons learned in creating an art exhibit from research findings are explored.

Conclusion: Creative art forms for research and disseminating knowledge offer new ways of understanding and knowing that are under-used in nursing.

Implication for Practice/ Research: Arts-based approaches make visible patients’ experiences that are often left unarticulated or hidden. Creative dissemination approaches such as art exhibits can promote insight and new ways of knowing that communicate nursing research to both public and professional audiences.

Reference: Bruce, A., Makaroff, K. L. S., Sheilds, L., Beuthin, R., Molzahn, A., & Shermak, S. (2013). Lessons Learned about Art-Based Approaches for Disseminating Knowledge. Nurse Researcher, 21(1), 23-28.