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

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