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
People Living with Serious Illness: Stories of Spirituality
In this paper we examine stories of spirituality in people living with serious illness.
Abstract:
Aim: To examine stories of spirituality in people living with serious illness.
Background: Although knowledge about the experience of people with various chronic illnesses is growing, there is little known about peoples’ beliefs and perspectives relating to spirituality where there is a diagnosis of a serious
Design of the Study: A social constructionist approach to narrative inquiry was used.
Methods: In-depth narrative interviews were conducted on one occasion with 32 participants. This included 10 people with cancer, 14 people with end stage renal disease (ESRD) and eight people with HIV/AIDS. They ranged in age from 37-83 and included 18 men and 14 women.
Results: The themes were reflecting on spiritual religious and personal beliefs, crafting beliefs for their own lives, finding meaning and transcending beyond words. Participants melded various belief systems to fit their own lives. They also looked to find meaning in their illness experience and described what gave life meaning. For some aspects of these belief systems, participants could not or would not express themselves verbally, and it seemed that aspects of their experience were beyond language.
Conclusions: The stories revealed considerable depth relating to perspectives on life, illness and existential questions, but many participants were not comfortable with the term ‘spirituality’.
Relevance to Clinical Practice: Nurses must remain open to learning about belief systems of each individual in their care, regardless of that individual’s declared religious affiliation or declaration of no religious affiliation, given that personal beliefs and practices do not always fit into specific categories.
Reference: Molzahn, A., Sheilds, L., Bruce, A., Stadjuhar, K., Schick Makaroff, K., Beuthin, R. & Shermak, S. (2012). People Living with Serious Illness: Stories of Spirituality. Journal of Clinical Nursing, 21(15-16), 2347-2356.
Learning from Stories of People with Chronic Kidney Disease
Our publication that explored how people with chronic kidney disease described their experiences of liminality associated with chronic kidney disease and treatment.
Abstract: The purpose of this study was to explore how people with chronic kidney disease (CKD) describe/story experiences of liminality associated with CKD and its treatment. This narrative inquiry was undertaken using secondary data. The people relating the stories described a number of liminal spaces, including living/not living, independence/dependence, restrictions/freedom, normal/not normal, worse off/better off, and alone/connected. Awareness of the liminal spaces can help nurses provide care that addresses the complexity of CKD
Reference: Molzahn, A., Bruce, A., & Sheilds, L. (2008). Learning from Stories of People with Chronic Kidney Disease. Nephrology Nursing Journal, 35(1), 13-20.