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