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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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Narrative Research Evolving: Evolving Narrative Research

In this publication we discuss the  emergent design within narrative inquiry:

Abstract: Narrative research methodology is evolving, and we contend that the notion of emergent design is vital if narrative inquiry (NI) is to continue flourishing in generating new knowledge. We situate the discussion within the narrative turn in qualitative research while drawing on experiences of conducting a longitudinal narrative study. The philosophical tensions encountered are described, as our understanding and application of narrative approaches evolved. We outline challenges in data collection and analysis in response to what we were learning and identify institutional barriers within ethics review processes that potentially impede emergent approaches. We conclude that researchers using NI can, and must, pursue unanticipated methodological changes when in the midst of conducting the inquiry. Understanding the benefits and institutional barriers to emergent aspects of design is discussed in this ever-maturing approach to qualitative research.

Reference: Bruce, A., Beuthin, R., Sheilds, L., Molzahn, A.E., Schick Makaroff, K. (2016). Narrative Research Evolving: Evolving Narrative Research. International Journal of Qualitative Methodology. 15, 1:1609406916659292. doi: 10.1177/1609406916659292

 

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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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Storylines of Aging with HIV: Shifts Toward Sense Making

Through this paper, we  explore  older adults’ experiences of living and aging with HIV.

Abstract: Aging with HIV is a new phenomenon. It is expected that by 2015, approximately half of adults living with HIV in the United States will be age 50 and older. We used narrative inquiry to explore how older adults with HIV storied their experience and made sense of aging. Over a 3.5-year period, we interviewed 5 older adults living with HIV for 13 to 24 years. In analyzing the coconstructed stories, we identify six storylines that enhance understanding and guide listening: embodiment of the illness, sense making, death and loss, secrets and stigma, identity, and seeking connection. We theorize that the degree to which one reconciles each storyline influences how well one lives with illness. We share a storied exemplar to illustrate these storylines in one participant’s experience of aging with HIV. These findings emphasize how vital is telling one’s illness story, because sense making happens in the telling.

Reference: Beuthin, R. E., Bruce, A., & Sheilds, L. (2015). Storylines of Aging with HIV: Shifts Toward Sense Making. Qualitative Health Research, 25(5), 612-621. doi:10.1177/1049732314553597

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Contrasting Stories of Life-threatening Illness: A Narrative Inquiry of People Living with Cancer, Chronic Kidney Disease and HIV

In this publication we explore  and contrast how people story and re-story living with cancer, chronic kidney disease and HIV.

Abstract:

Background: Advances in science and technology have resulted in longer lives for people with life-threatening illnesses. However, little research compares the stories of people with different life-threatening illnesses.

Objectives: The objectives of this study were to explore and contrast how people story and re-story life-threatening illness specifically cancer, chronic kidney disease (CKD) and HIV.

Design: Narrative inquiry within a social constructionist perspective was used.

Methods: A total of 113 in-depth interviews were conducted with 32 participants over a period of three years.

Participants: Study participants included 32 people: 10 with cancer, 14 with CKD and 8 with HIV/AIDS. Participants varied in age (37-83 years old, mean=61.2 years), gender (17 men and 14 women), location (urban and rural), time post-diagnosis (median=8 years), intensity or invasiveness of treatment, and prognosis (continuous treatment, remission, cure, palliative).

Results: Participants described living with a life-threatening illness as a delicate balance. They focused on living their lives yet were fully and acutely aware of their own mortality. There was an undercurrent of sustained uncertainty that permeated their lives. Stories of life-threatening illness differed across the three illness groups and shifted over time as disease trajectories changed. Each disease brought specific challenges. With cancer, turning points and uncertainty were prominent. With CKD, a stealthy beginning to life-extending treatment through dialysis or transplant was evident, and with HIV, a shift from a perceived death sentence to a focus on hope and living was notable.

Conclusions: Findings revealed that trajectories of illness for participants living with cancer, CKD and HIV are complex and differ markedly across the groups. Narratives shifted across all of the illness groups as participants navigated and re-storied the terrains of their life-threatening illness. Findings illuminated the need for health care providers to focus on person specific and contextualized aspects of the illness experience.

Reference: Sheilds, L., Molzahn, A., Bruce, A., Schick Makaroff, K., Stajduhar, K., Beuthin, R., & Shermak, S. (2015). Contrasting Stories of Life-threatening Illness: A Narrative Inquiry of People Living with Cancer, Chronic Kidney Disease and HIV. International Journal of Nursing Studies, 52, 207 – 215. doi: 10.1016/j.ijnurstu.2014.10.008