Rosanne Beuthin

Stories of Liminality Living With Life-Threatening Illness

Purpose: The purpose of the study is to examine liminal experiences of living with the uncertainty of life-threatening illness. Increasing numbers of people with life-threatening 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. Design: A narrative inquiry methodology within a constructionist frame was used. Method: Semistructured in-depth interviews were conducted with 32 participants from three populations of interest: (a) 10 people living with cancer, (b) 13 people with chronic renal disease, and (c) 9 people living with HIV/AIDS. Findings: An overarching theme of “pervasive liminality” and four narratives are identified: storying into fear(lessness), being alive but not living; knowing and not knowing, and the (in)visibility of disease. Conclusions: Over time, living with a life-threatening illness produces complex and paradoxical experiences that do not easily fit within familiar categories of experience. Findings highlight pervasive liminal experiences as in-between narratives that are neither problematic nor need to be resolved, and endure over time.

Contrasting stories of life-threatening illness: a narrative inquiry.

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.

Storylines of Aging With HIV: Shifts Toward Sense Making

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.

Cultivating a Narrative Sensibility in Nursing Practice

Stories hold meaning, and when persons tell of their experiences of living with illness, they are afforded an opportunity to make sense of all that is happening. As nurses, we have the privilege of hearing the particular, gaining understanding, and creating a powerful encounter that has healing and health benefits. This is a call for nurses to more intentionally invite and listen to the stories of persons living with illness. The mnemonic STORIED is offered to help nurses weave together essential elements of a narrative practice approach: Subjective, Tell/Listen, Openness, Reflection, Invite/Intention, Engage, and Document. Nurses are the voice of the vulnerable, and to learn to listen to our patients’ stories such that what is gleaned contributes to their healing is nothing less than a call to excellent care of the unique person before us.

Cultivating Compassion: The Practice Experience of a Medical Assistance in Dying Coordinator in Canada:

Accessing medical assistance in dying (MAiD) became legal in Canada in June, 2016. This marks a unique time in our history, as eligible persons can now opt for an assisted death and health care professionals can be involved without criminal repercussion. I used an autoethnographic approach to explore and describe my experience of implementing and coordinating a new MAiD program in a local health authority. Part I is a self-reflexive narrative based on journal entries about my immersion in this practice role over a 6 month period. In Part II, I share five emergent storylines: coming to the role (the calling), embodiment (becoming the face of), immersion in clinical practice, interactions with those seeking MAiD, and self survival (sense making). The created story and storylines shine a light on new ethical practice realities, enhance understanding about MAiD as it continues to unfold, and hopefully inspire human centered, compassionate care.

Narrative Research Evolving: Evolving Through Narrative Research

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.

Medical assistance in dying (MAiD): Canadian nurses’ experiences

Abstract Medical assistance in dying (MAiD) represents a historic change in Canadian society and the provision of end‐of‐life care. In this descriptive narrative inquiry, 17 nurses were interviewed during the first 6 months of assisted dying becoming a legal option for patients in Canada. Nurses’ experiences of either providing care for a patient who had chosen MAiD, or declining to participate in MAiD, were explored. Findings describe three themes and eight storylines of the impact of MAiD on nurses’ view of the profession, clinical practice, and personally. While most nurses perceived MAiD as an extension of the profession and their nursing practice, a small number also expressed moral distress as they grappled with assisted dying. Narratives illustrated an ongoing sensemaking process and spectrum of emotions. These findings offer insight and provide direction for nurses and managers in this new clinical and legal reality. Further research is needed to understand more fully the moral distress of some nurses, as well as the importance of communicating openly and nonjudgmentally with patients, families, and the health‐care team.