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.