Category: Journal Publications

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Ten minutes to midnight: a narrative inquiry of people living with dying with advanced COPD and their family members.

Our research team has published an article in the International Journal of Qualitative Studies on Health and Well-being

Ten minutes to midnight: a narrative inquiry of people living with dying with advanced COPD and their family 

Abstract:

Purpose: To explore how people with end stage chronic obstructive pulmonary disease and their family members describe living in the face of impending death.

Methods: A narrative inquiry was undertaken using a social constructionist perspective. Data were collected in 2017-18 in two in-depth interviews, lasting 90 to 120 minutes approximately 3-4 months apart, with a telephone follow-up 2-3 months later. Thematic analysis was conducted including analysis within and across participants.

Results: Sixteen people with advanced chronic obstructive pulmonary disease and seven family members participated. For both people with the disease and family members, six key themes/storylines emerged including missing life, being vigilant, hope and realism, avoiding death talk, the scary dying process, and need to prepare.

Conclusion: This study highlighted six key storylines about death and dying with advanced chronic obstructive pulmonary disease for people with the illness and their family members. The participants with the illness and their family members held similar perceptions about end of life. More supports are needed for people with advanced chronic obstructive pulmonary disease and their family members in living with their illness while ensuring that they experience a “good death.”

Reference:  Molzahn, A. E., Sheilds, L., Antonio, M.,, Bruce, A., Schick-Makaroff, K., & Wiebe,R. (2021). Ten minutes to midnight: a narrative inquiry of people living with dying with advanced COPD and their family members. International Journal of Qualitative Studies on Health and Well-being, https://doi.org/10.1080/17482631.2021.1893146

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Life and priorities before death: A narrative inquiry of uncertainty and end of life in people with heart failure and their family members

Our research team has published an article in the   European Journal of Cardiovascular Nursing: https://doi.org/10.1177/1474515120918355 

Abstract:
Background: Most patients with advanced heart failure are ill-prepared and poorly supported during the end of life. To date, research has focused primarily on generalized patient accounts of the management or self-care phase of the
syndrome. Little research has examined the end of life in depth or from the perspectives of family members.

Aims: The purpose of this study is to describe how people diagnosed with heart failure and their family members describe uncertainty related to impending death.

Methods and results: A narrative inquiry was undertaken using a social constructionist perspective. Twenty participants took part in over 60 interviews: 12 participants with heart failure (eight male and four female; mean 67.3 years) and eight family members (mean 61.6 years) engaged in two in-depth interviews, approximately 3–4 months apart, followed by a telephone follow-up 2–3 months later. Six key themes/storylines were identified. These included: prognosis messages received from physicians; whenever I die, I die; loss isn’t new to me but . . . ; carrying on amidst the
fragility of life; ultimately living not knowing; and the need to prepare.

Conclusion: The six key storylines of death and dying with advanced heart failure were consistent for both patients and family members. There was a desire for better communication with physicians. Many participants were critical of how the prognosis of advanced heart failure was communicated to them, even if they anticipated the news. Participants wanted frank, open conversations with their healthcare providers that both acknowledged that they were at end of life but did not remove all hope.

Reference:  Molzahn, A. E., Sheilds, L., Bruce, A., Schick-Makaroff, K., Antonio, M., & Clark, A. M. (2020). Life and priorities before death: A narrative inquiry of uncertainty and end of life in people with heart failure and their family members. European Journal of Cardiovascular Nursing, 1474515120918355.

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Holding secrets while living with life-threatening illness: Normalizing patients’ decisions to reveal or conceal.

Our research team has published an article about how patients hold secrets and the role these secrets may play regarding health and illness.

Abstract: Communicating openly and directly about illness comes easily for some patients, whereas for others fear of disclosure keeps them silent. In this article, we discuss findings about the role of keeping secrets regarding health and illness. These findings were part of a larger project on how people with life-threatening illnesses re-story their lives. A narrative approach drawing on Frank’s dialogical narrative analysis and Riesman’s inductive approach was used. Interviews were conducted with 32 participants from three populations: chronic kidney disease, HIV/AIDS, and cancer. Findings include case exemplars which suggest keeping secrets is a social practice that acts along continuums of connecting–isolating, protecting–harming, and empowering–imprisoning. Keeping secrets about illness is a normative practice that is negotiated with each encounter. Findings call health-care providers to rethink the role of secrets for patients by considering patient privilege, a person’s right to take the lead in revealing or concealing their health and illness experience.

Reference:  Bruce, A., Beuthin, R., Sheilds, L., Molzahn, A., & Schick-Makaroff, K. (2019). Holding secrets while living with life-threatening illness: Normalizing patients’ decisions to reveal or conceal. Qualitative Health Research, , 104973231988771. doi:10.1177/1049732319887714

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Qualitative data management and analysis within a data repository

Our research team has a publication on how we organized and managed the data during our second research study. In this paper, we also offer some insight into some of the limitations of secure, online data management that is offered through a data repository.

Abstract: Data repositories can support secure data management for multi-institutional and geographically dispersed research teams. Primarily designed to provide secure access, storage, and sharing of quantitative data, limited focus has been given to the unique considerations of data repositories for qualitative research. We share our experiences of using a data repository in a large qualitative nursing research study. Over a 27-month period, data collected by this 15-member team from 83 participants included photos, audio recordings and transcripts of interviews, and field notes. The data repository supported the secure collection, storage, and management of over 1,800 files with data. However, challenges were introduced during analysis that required negotiations about the structure and processes of the data repository. We discuss strengths and limitations of data repositories, and introduce practical strategies for developing a data management plan for qualitative research, which is supported through a data repository.

Reference: Antonio, M. G., Schick-Makaroff, K., Doiron, J. M., Sheilds, L., White, L., & Molzahn, A. (2019). Qualitative data management and analysis within a data repository. Western Journal of Nursing Research, , 19394591988170. doi:10.1177/0193945919881706

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Living with Dying: A Narrative Inquiry of People with Chronic Kidney Disease and their Family Members

In this open access publication , we explore the experiences shared by people living with chronic kidney disease and their family members:

Abstract:

Aims: To describe how people diagnosed with chronic kidney disease and their family members describe uncertainty related to impending death.

Background: There has been little research about the experiences of people with chronic kidney disease and their family members as they near the end-of-life. We need to understand these experiences to give holistic person-centred care.

Design:  A narrative enquiry was undertaken using a social constructionist perspective.

Methods: Data were collected in two in-depth interviews, approximately 3-4 months apart, followed by a telephone follow-up 2-3 months later.

Results:  Eleven people with advanced chronic kidney disease and nine family members/significant others participated. For both participants in the dyad, a number of key themes/storylines were identified. These included recognition that: @life has a boundary, living on the edge, I’m not afraid to die but… and remembering loss and death experiences.

Conclusions:  This enquiry illuminated four key storylines of about death and dying with advanced chronic kidney disease for people with the illness and their family members. Discussion about past experiences with illness, loss, death, and dying can give an entry for discussion about end-of-life. The person with illness and family members often held very similar perceptions and desires, but healthcare professionals’ contributions to understanding of the experience were not mentioned. Implications for clinicians include attending to peoples’ awareness of death as a distinct opportunity, listening attentively and posing questions that genuinely invite concerns and wishes about end-of-life and living well.

Reference: Molzahn, A.E., Sheilds, L., Bruce, A., Schick-Makaroff, A.E., Antonio, M., & White, L. (2018). Living with Dying: A Narrative Inquiry of People with Chronic Kidney Disease and their Family Members. Journal of Advanced Nursing.  10.1111/jan.13830

 

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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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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

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Shadows and Sunshine: What Metaphors Reveal About Aging with HIV

Through this publication we explore the metaphors people shared when speaking about the uncertainty of living with HIV.

Abstract: Using narrative inquiry, the researchers interviewed 5 older adults on 5 occasions over a period of 3.5 years about their experiences of aging with HIV. The participants’ stories were analyzed for metaphors. Individual metaphors reveal a complex, unique struggle: living between tensions of uncertainty and hope, facing death and living in the moment, and suffering hurt amidst the joys of evolving identity. The tensions are fluid, although time and life experience facilitate a shift towards reconciliation. An overarching metaphor across this group of survivors is shadows and sunshine: to survive and live in a fragile state, balancing multiple shadows such as stigma and side effects with joyful experiences of support and belonging. The findings suggest that when nurses invite stories of life experience and listen for language used, they build compassion and gain understanding of what support is most needed to honour the personhood of older adults who are HIV-positive.

Reference: Beuthin, R., Sheilds, L., & Bruce, A. (2014). Shadows and Sunshine: What Metaphors Reveal About Aging with HIV. The Canadian Journal of Nursing Research = Revue Canadienne De Recherche En Sciences Infirmieres, 46(3), 6-25. doi:10.1177/084456211404600302