Category: Conference Presentations

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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.

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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.

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Narratives of Living With Chronic Obstructive Pulmonary Disease (COPD): Engaging the Voices of People Experiencing Social Isolation

Our research team shared the stories people offered on their experience of living with COPD, particularly how the progression of the illness can lead to disconnection to ones’ community, friends and healthcare services.

Abstract: To have successful public engagement requires citizens who are willing to share their experiences. However, people living with the greatest burdens of illness may also be the most difficult to locate and engage. Chronic obstructive pulmonary disease (COPD) is an illness that exemplifies unique challenges for public engagement. According to the literature, COPD is underdiagnosed and, compared to other fatal conditions, has fewer dedicated research, community, and palliative care resources. With smoking viewed as the most common risk factor for COPD, the resulting shame and victim blaming may further discourage self-identification and sharing of illness experiences and compound social isolation. Within the context of a large narrative study, this presentation will focus on how social isolation is experienced by people living with COPD and their family members. Twenty-two participants were interviewed up to 3 times over 18 months, six of which were dyads. Shared narratives revealed a shrinking physical world and limited connections to friends, families, advocates, and other individuals living with COPD. Participants described the signage that warned visitors on entry and the visibility and vulnerability of being “out in community” with their oxygen support. People often lived alone and spoke of the physical fatigue related to COPD and the “scary” experience of acute breathing difficulties. During these events, they were hesitant in connecting with others, especially health-care practitioners. The findings from this narrative study will further illuminate the importance of listening to the voices within an illness population that experiences increasing frailty, isolation, and potential stigmatization.

Reference: Antonio, M.G., Sheilds, L., Bruce, A. (2017). Narratives of living with chronic obstructive pulmonary disease (COPD): Engaging the voices of people experiencing social isolation. Qualitative Health Research Conference, Quebec City, CA, October 17-19, 2017.

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Symposium at the Qualitative Health Research Conference in Quebec City: Listening: Illuminating liminal and uncertain spaces in narrative research

Our team presented at symposium at the Qualitative Health Research Conference in Quebec City.  The three presentations explored the uncertain practice of narrative interviewing, unanticipated challenges within dyadic interviewing and  analytical approaches through photo elicitation and listening.

Introduction: Death, dying, and the uncertainty of living are realities of life for people and their families living with chronic fatal conditions. In this symposium, we will focus on the methodological design of a longitudinal narrative project with 84 participants, exploring how people with end-stage kidney disease, heart failure, chronic obstructive lung disease, and advanced cancer, and their families, navigate the uncertainties of living and dying. We will share/discuss our approaches to listening for and navigating the uncertain terrain within (1) narrative interviewing, (2) dyadic engagement, and (3) photo elicitation. In addition, we will share knowledge translation approaches aimed toward public involvement. Arts-based knowledge translation is one approach to increasing engagement of patients, their families, care providers, and the public in the research process. Exemplars of arts-based findings will be used throughout this symposium to further illuminate how understanding liminal spaces of living and dying may improve care for people living with serious illnesses.

Presentation #1: Narrative Interviewing as an Uncertain Practice: Engaging Conversation With People Through Serious Life-Threatening Illnesses

People living with serious chronic illness frequently experience changes in their health, including encounters that bring them close to the margin of life and death. The immediacy of these experiences can evoke uncertainty, fear, and existential questioning. In this presentation, we discuss our process of engaging in conversation with people who have serious, life-threatening illnesses, and their family members through advancing health concerns. The longitudinal nature of our study design offered the opportunity to develop relationships with participants over time and to explore uncertainties on usually three occasions across 6–12 months. Ethical considerations and tensions constantly arose about if, when, and how to attend to interview questions that may generate discomfort for participants regarding their experiences. Through story, we will share our learning and challenges of engaging these interview conversations as an uncertain practice, following the lead of participants as they touched in and out of stories regarding mortality, experiences close to death, and caregiving through serious illness. Our approach encompassed maintaining awareness of various (dis)comforts (for interviewers and participants), listening compassionately, and bearing witness to the silences and strong emotion as they surfaced. While participants sometimes shared being grateful for the opportunity to discuss these relatively unspoken experiences, they also reinforced that within society and health care, silence often prevails about impending death. We offer our experiences as a way to contribute to opening spaces from which people can be heard and supported when sharing (or choosing not to share) their uncertainties of living with a life-threatening illness.

Presentation #2: Dyadic Approach to Weaving Cross-Threads of Patient and Family Narratives

Life-threatening disease affects not only the lives of those suffering from illness but also family members who care for them. Few studies explore the experiences of both the person with illness and their family member(s) living with changing trajectories of fatal chronic conditions. In this study, attention is given to both the patients’ and caregivers’ narratives, recognizing that experiences they have shared together living within and through serious illness may (and often do) vary. This study was designed to explore such contrasting stories by conducting separate interviews with patient participants and family members on three occasions. We will present on our dyadic narrative methodology and the unique considerations in relation to ethical practices, recruitment, and interviewing. This will include some of our unanticipated challenges, for example, while our intention was to interview participants separately, it did not always unfold this way. We will share lessons learned in navigating these issues as well as the richness and depth in analyzing patient and family member narratives, voices, and photo images both separately and together. Examples will be provided to demonstrate the range of dyadic pairings (spouse, child, sibling, and friend). Métissage will be used as an arts-based approach, to illustrate how we are exploring convergent and divergent narratives of patients and family members, and their distinct “third space” constructed in between.

Presentation #3: Expanding Analytical Approaches Using Photo Elicitation With Performative Listening

How might we understand the unformed, uncertain, and perhaps unsayable aspects of living with fatal chronic illness? How might people convey the uncertainties of dying or caring for a family member with a fatal chronic condition? Participants in this study were invited to take pictures and speak about how their photos conveyed experiences of uncertainty and illness. The images, audio recordings, and transcripts of these interviews were reviewed within the research team. The process of eliciting and analyzing participant photos and their storied responses will be presented. Riessman’s (2008) narrative visual analysis and McCrae’s (2015) “performative” listening were used to describe our processes for listening with our eyes, ears, and bodies. Narrative visual analysis included the three methods of (1) looking at the production of an image, including participants’ social identities; (2) focusing on the image itself; and (3) looking at how an image is read by diverse researchers, and the stories they bring to the image. Performative listening was used to engage with participants’ narratives about their photos, and as an approach to analysis of the audio recordings and transcripts. Listening is an interiorizing experience; it draws us into the ineffable, gathers together thoughts, feelings, and a felt sense [that] can offer-unique interpretations. We will describe listening-centered strategies of listening for, listening with, and listening into stories shared visually and aurally of living with serious illnesses. Lastly, we will share preliminary findings from the visual analysis and performative listening about living with the uncertainties of fatal chronic conditions.

Reference:

Sheilds, L. (2018). Listening: Illuminating liminal and uncertain spaces in narrative research. Symposium Chair, Qualitative Health Research Conference, Quebec City, CA, October 17-19, 2017.

Antonio, M.G., Sheilds, L., Schick-Makaroff, K. (2017). Dyadic approach to weaving cross-threads of patient and family narratives. Qualitative Health Research Conference, Quebec City, CA, October 17-19, 2017.

White, L., Bruce, A., and Sheilds, L. (2017). Narrative interviewing as an uncertain practice:
Engaging conversation with people through serious life threatening illnesses.  Qualitative Health Research Conference, Quebec City, CA, October 17-19, 2017.

White, L. and Bruce, A. (2017). Expanding analytical approaches using photo elicitation with performative listening. Qualitative Health Research Conference, Quebec City, CA, October 17-19, 2017.

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Poster Presentation at the Canadian Lung Association Conference

Our research team presented at the Canadian Lung Association in Vancouver.  The poster provided the photos and narratives  that people shared about their experiences of living with COPD,

Abstract: Chronic obstructive pulmonary disease (COPD) is a fatal chronic illness characterized by decreased breathing function and acute events (exacerbations) that can contribute to increased pain, fear, anxiety and depression. When people with COPD have social supports in place, exacerbations are less severe and hospitalization rates are reduced, thereby, overall quality of life is improved.  The number of COPD individuals living alone is increasing, and thus exacerbations are more likely to be an unsupported, solitary experience.  Further, people with COPD are at risk of becoming more socially isolated as their illness progresses, compounding the incidence of depression and anxiety.  Digital technologies (DTs), such as social media and SkypeÔ, have been proposed as a strategy for chronic disease management and social connectedness.  Yet, there is dearth of research examining DTs specific for people living with COPD.

Within the context of a large qualitative, narrative study, the poster presentation will provide an examination of social connectedness/isolation experienced by people living with COPD.  This Canadian Institutes of Health Research (CIHR) funded, longitudinal study involved two in-depth, in-person interviews and one follow-up phone interview over a period of 18 months. Purposeful recruitment was used to connect with 16   people living with COPD and 7 family members. Informed by Reissman’s (2007) narrative inquiry methods,  analysis involved team-based discussions and repeated, close reading of the transcribed interviews.  Narrative analysis revealed the isolating experience of living with COPD was compounded by increased frailty, oxygen therapy and fear of influenza.  Shared narratives included the challenge of sustaining friendships, while other participants referenced DTs significance in remaining socially connected.

Building upon the findings,  possible considerations for DTs to address the multiple layers of social isolation for people living with COPD will be proposed.  This will include a review as to how DTs can support social connectedness and illness experience through information/education, emotional support, peer support, engagement/participation, narration, and personal contact.

Reference: Antonio, M.G, and Sheilds, L. (2018). Digital Technologies’ Potential in Addressing the Social Isolation Experienced with COPD.  Canadian Respiratory Conference, Vancouver, BC. April 12-14, 2018.

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Presentations at the Qualitative Methods Conference in Glasgow, Scotland

Our team had two presentations at the Qualitative Methods Conference in Glasgow Scotland:  ‘How to balance both in a qualitative research study’ and ‘Returning to Creative, Responsive, and Collaborative Engagement in Narrative Research‘.

Abstract:  Emerging secure online data management systems allows the successful management of sensitive qualitative research, from data collection through dissemination. These secure virtual research environments (VREs) enable each researchers within a geographically dispersed research team to have ongoing 24/7 access to large sets of sensitive qualitative data and analytic software programs. However, these emerging system do not come without their own unique challenges, including appropriately downloading copies of data, attending to legislation requirements which may prohibit data exchange between two jurisdictions, and ethics boards’ unique requirements for privacy and security. Additionally, members within a research team may have different levels of experience using such emerging technologies as well as various computer platforms and specific preferences for document formats. This presentation will discuss the key learnings from a current qualitative narrative study that is utilizing a secure VRE for managing health-related data. This narrative inquiry study involves securely managing transcripts and visual data of 80 participants living with life-threatening illnesses. The 12 member research team transverses across two Canadian provinces and utilizes a single point of access for data management—the University of Alberta Health Research Data Repository. The presentation will provide (1) an overview of the successful strategies that were implemented to ensure systematic organization of the large qualitative data set, (2) the unique considerations in using a secure VRE for qualitative data management, (3) the challenges that were addressed in balancing the security requirements of the VRE, while promoting a collaborative research team environment.

Reference: Antonio, M., Doiron, J. and Sheilds, L. (2016). Security or Collaboration? How to balance both in a qualitative research study. Qualitative Methods Conference. Glasgow, Scotland. May 4, 2016.

Abstract: In this paper, we examine how genuine collaboration necessitates a return to emergent research designs in narrative research. Situating the discussion within “the narrative turn,” we draw on a recent longitudinal narrative inquiry conducted over 6 years across two university sites and an advisory committee of community stakeholders. We contend that the principle of emergent design within narrative inquiry has been lost in recent years. Increasing demands for predetermined, fixed analytic approaches required by granting agencies and ethics review boards pose methodological challenges. In particular, evolving analytic approaches that are responsive to unanticipated participant data, surprising philosophical tensions, and the nature of innovative, emergent analysis in a longitudinal inquiry are explored. Using exemplars from recent research, we describe a synthesis of analytic approaches developed in response to such challenges. Throughout, we draw from a recent nursing study and conclude with how narrative inquiry can, and must, evolve as an emergent design to support genuine collaboration by researchers, study participants, and advisory committee members within the ever-maturing field of narrative research.

Reference: Bruce, A., Molzahn, A., and Beuthin, R. Returning to creative, responsive and collaborative engagement in narrative research. Qualitative Methods Conference. Glasgow, Scotland. May 3-5, 2016.

 

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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.

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Three presentations from our first study

Following are three presentations from our first study  where people shared their experiences of living with HIV, cancer and renal disease.  People were asked to share symbols that represented living with a life-limiting illness.  The first presentation explores peoples experience of living_with_chronic_kidney_disease, the second  offers narratives_of_life_limiting_illness and the third focuses on storying_and_re-storying_life_limiting_illness