Category: Arts-Based

Posted on

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.

Posted on

Symposium Presented at Narrative Matters 2018

Our team presented a four-part symposium at Narrative Matters, which was hosted at the University of Twente in The Netherlands on July 3rd, 2018.  The presentations were:

  1. Introduction – Listening and illuminating liminal spaces of (dis)ease: Story-ing living and dying
  2. Understanding emotion in storying (dis)ease’
  3. Un-told stories of (dis)ease between patients, families, and health providers: cultivating relational spaces of compassion
  4. Liminal spaces: easing into stories of living and dying through métissage

Below are the four abstracts from our presentations:

Listening and illuminating liminal spaces of (dis)ease: Story-ing living and dying
Chair: Laurene Sheilds
The liminal spaces of living and dying with fatal chronic disease are central to the human condition. We all live and each of us will die. How we tell stories of living and dying illuminates and obscures the realities of that embodied experience. This is especially true as we tell stories across interdisciplinary spaces and to varied audiences. Our experiences of living and dying are mediated through stories, yet often there is (dis)ease in voicing and hearing these stories. Various scholars recognize the importance of presence in witnessing suffering, and emphasize a new approach to research in professional practice and health care disciplines that is guided by a corporeal turn. In this symposium, we will share findings from a longitudinal narrative
project with 84 participants living and dying with end-stage kidney disease, heart failure, chronic obstructive pulmonary disease and advanced cancer. Relational narrative interviews were held with patient and family member participants over 12-18 months to explore their stories of the uncertainties of life-limiting illness. Aspects of experience that are difficult to language were illuminated using photo-elicitation. Symposium presentations include a layering of methodological approaches in exploring experiences of uncertainty (narrative interviewing, performative listening, and dialogical story-telling); and arts based strategies (text and visual representations, métissage, and oral and digital storytelling) to share findings and illuminate: 1) easing into the (dis)ease of uncertainty in life-threatening illness; 2) embodied  emotion in storying (dis)ease ; and 3)un-told stories between patients, family members and health providers.

Understanding emotion in storying (dis)ease
Anne Bruce, Lacie White, Laurene Sheilds and Marcy Antonio
Emotion in storytelling remains unexplored– yet is integral to narratives of (dis)ease, loss, and living well with serious illness. In this presentation, we discuss our narrative inquiry approach, wherein we turn towards the corporeal. To begin, we assume a centrality of felt-sense and emotion in narrative interviewing and analyses, and explore ways of attending and attuning to emotional (and relational) complexity inherent in stories confronting mortality. Using performative listening, expressive tones in participants’ narratives of living with serious illness, or caring for a family member, were examined with attention to areas of uncertainty and liminality. Dwelling in diverse data sources (audio, visual images, and text), emotions were heard, seen, and felt, reflecting complex, liminal experiences of sadness-peace, hope-fear, loneliness-connection, and (un)certainty of death. We highlight the ethical workings of narrative for nurses including emotions as sites of (dis)comfort and social control (in qualitative research and clinical practice). Exploring how health professionals may use such liminal narratives to promote “critical narrative savviness”, we situate emotions within social hierarchies acknowledging emotion as embodied experience that is acted out in relations of power.
Understanding emotion as inseparable from storying, we explore: a) why affective aspects of storying are often overlooked in qualitative health research; and b) how affect is shaping our understanding and interpretation of illness narratives. Finally, we suggest specific approaches for attending to and analyzing affective dimensions in narrative analyses.

Un-told stories of (dis)ease between patients, families, and health providers: cultivating relational spaces of compassion
Lacie White, Laurene Sheilds, Marcy Antonio and Anne Bruce
Experiences are fraught with uncertainty for people living with life-threatening illnesses and their families, as well as for health providers who seek to support them with care and compassion. Dynamic and shifting standpoints within and between individuals and health care providers create added layers of  uncertainty. The relational complexity of inter-acting (and opposing) perspectives, adds difficulty in knowing how to meet the needs of people who are dying and their families. Further, death, dying and suffering remain socially uneasy. Stories of living-dying, are often silenced, as they unsettle and provoke through their telling/hearing. In this presentation, we discuss upholding a dialogical ethic to dwell within these un-tell-able and un-hear-able stories. Here we drawfrom participants’ stories across two narrative studies exploring: 1) how people living with life-threatening illnesses and their family members experience uncertainty, and 2) how palliative care nurses with a mindfulness practice navigate relational challenges inherent in their work. Juxtaposing storied experiences of people with illness, their family members, and palliative care nurses, we use story-telling as a method of knowledge translation to emphasize the relational complexities central to enacting a
palliative care approach. The stories will show how despite care providers’ best intentions their (in)actions can, at times, further extend suffering. We will illuminate considerations for how to engage in dialogically informed  storytelling (which is also an uncertain practice) with evocative and ‘taboo’ topics. By shining light on these tightly held stories of (dis)ease we aim to cultivate relational spaces of understanding and compassion.

Liminal spaces: easing into stories of living and dying through métissage
Marcy Antonio, Laurene Sheilds, Anne Bruce and Lacie White
In our “death denying” culture people living with fatal chronic conditions seldom have space to talk about death, dying, and the experiences of living with life-limiting illness. For this presentation, we will explore narratives about one of the most profound aspects of human existence: the liminal experience of living-and-dying with a fatal chronic condition. Using métissage as a performative approach we will share narratives and photos taken by patients and family members. We blend images and participants’ expressions to call forth that which cannot be readily articulated. This approach will convey experiences of uncertainty, facing death, and the in-between (third-space) of
patient and family (dyadic) tensions. In sharing their experiences of  uncertainty, participants moved within (dis)comfort and (un)ease, touching upon and away from experiences of living and dying. Encountering difficult words such as “there is nothing more that we can do”, further magnified the uncertainty of a life-limiting diagnosis. When told with certainty “you have X months to live”, then surviving beyond prognosis, this too further evoked liminal experiences for patients and families. Through these experiences participants described the uncertainties in their day to day world; living with on going dying and loss, and living well amidst (dis)ease and suffering. Participants also resisted narratives of dying and focused on unfolding experiences in their everyday, such as changing relationships and the importance of one’s sense of home. Through this performative piece we open possibilities for how participants, including dyads, are living well within liminal experiences of life-threatening illness.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

Symbolic representations of living with chronic kidney disease

Our team has published an article on ‘Symbolic representations of living with chronic kidney disease’.

 

Abstract: Visual or aesthetic data can contribute to understanding experiences that may not be able to be fully understood through spoken or written words. This article describes stories of symbols that represent the experiences of individuals living with chronic kidney disease. Symbols included both objects (i.e., a family photograph) and intangible representations (i.e., apiece of music) that were chosen because they innately held meaning to the person. Descriptive themes of the symbols included hopes and inspirations, reflections on “who I am,” and confrontations of illness. Participants’ expressions through symbols were further described through the use of stories of memories, emotions, and poetic devices. We contend that symbols convey aspects of experience that cannot easily be translated into oral expression.

Refefence: Schick-Makaroff, K., Sheilds, L., & Molzahn, A. (2013). Symbolic representations of living with chronic kidney disease. Nephrology Nursing Journal, 40(6), 517-526. PMID: 24579398

https://www.ncbi.nlm.nih.gov/pubmed/24579398

https://www.researchgate.net/publication/260439591_Symbolic_Representations_of_Living_With_Chronic_Kidney_Disease