Category: Living with a Chronic Illness

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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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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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Stories of Liminality: Living with Life-threatening Illness

In this publication, we examine the  liminal experiences of living with the uncertainty of life-threatening illness.

Abstract:

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.

Reference: Bruce, A., Sheilds, L., Molzahn, A., Beuthin, R., Schick-Makaroff, K., & Shermak, S. (2014). Stories of Liminality: Living with Life-threatening Illness. Journal of Holistic Nursing, 32(1), 35-43.

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Three presentations from our first study

Following are three presentations from our first study  where people shared their experiences of living with HIV, cancer and renal disease.  People were asked to share symbols that represented living with a life-limiting illness.  The first presentation explores peoples experience of living_with_chronic_kidney_disease, the second  offers narratives_of_life_limiting_illness and the third focuses on storying_and_re-storying_life_limiting_illness