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

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

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

Exploring Narrative Analyses and Dissemination: Re-stor(y)ing Life within Life-threatening Illness Symposium

Our team presented at the Qualitative Health Research Conference in Victoria, BC.  The symposium began with a an arts-based presentation that shared people’s experiences of living with life threatening illness, followed by exploring metaphors of HIV and ended with some of considerations for knowledge translation.

Exploring Narrative Analyses and Dissemination: Re-stor(y)ing Life within Life-threatening Illness 

Symposium

Chair:Anita Molzahn,

Introduction: Increasing numbers of people with serious 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. A better understanding of these liminal experiences is important for developing meaningful supports and resources to improve quality of life for people living with cancer, end-stage renal disease and HIV. This symposium will focus on mixed analytic and dissemination approaches within narrative inquiry. Drawing on findings from a narrative study exploring how people living with life-threatening illness story and re-stor(y) their lives, the symposium will present: 1) narratives of keeping secrets using métissage; 2) describe how metaphor may illuminate stories of aging with HIV; and 3) explore the space between data analysis and Abstract, Symposium 575 dissemination using an array of knowledge translation strategies. Creative and innovative analytic and dissemination strategies to share stories of living with life-threatening illness will be discussed.

Presentation #1: Keeping Secrets: A Métissage of Living with Life-Threatening Illness

Anne Bruce, Laurene Sheilds and Rosanne Beuthin

In Canadian society, living with a life-threatening health condition can be troublesome. For some patients, communicating openly and directly about their illness comes easily, while for others fear of disclosure keeps them silent. In this paper we discuss findings from a narrative study examining the nature of keeping secrets in the context of health and illness. These findings are part of a larger project studying how people living with life-threatening illnesses story and re-story their lives. A narrative approach drawing on Frank’s (2010) socio-narratology and Reissman’s (2008) inductive approaches were used. Semi-structured in-depth interviews were conducted with 32 participants representing three disease populations of interest: (a) 10 people living with cancer, (b) 14 with end-stage renal disease, and (c) 8 people living with HIV/AIDS. Using the metaphor of a double-edged sword we explore the importance of orientating to secrecy as a social practice that cuts both ways through three metonymic narratives of: connecting-and-isolating, protectingand-harming, and empowering-and-imprisoning. To bring the richness of narrative forward, we weave a ‘métissage’ approach for disseminating findings. Métissage uses performativity that lets stories breath (Frank, 2010), having others bear witness to the challenges people with life-threatening illnesses face when withholding and revealing about their illness. Using métissage as a performative methodology of narrative research, we create stories of similarity and difference, where narrators and listeners enter stories that play with particular themes and yet as metonymies refuse to be allied with any one.

Presentation #2: Metaphors of Aging with HIV

Rosanne Beuthin and Laurene Sheilds

The second presentation in the symposium focuses on metaphors embedded in the stories of older adults living with HIV, and how metaphors help illuminate often hidden meaning. The success of antiretroviral treatment has enabled persons with HIV to survive to age 50 and beyond. By 2015 approximately half of adults with HIV in the USA will be 50 and older. While HIV may be more manageable with medications, to age with HIV is not without challenges and the implications of this extended life expectancy are only beginning to be fully understood. For this reason, the graying of HIV is considered a new crisis. Metaphors have a powerful influence on how an individual tells of and lives their illness. They have the ability to shape, constrain, expose, liberate, or illuminate how one actually experiences the disease itself and their own person. Narrative inquiry was used to examine metaphors within the stories of five older adults living with HIV for at least 10 years. This presentation will offer a balance between description and interpretation, and highlight a Abstract, Symposium 576 shift in metaphors of aging within this population over the past three decades. Often it is the case that health care providers do not listen for, hear, or understand metaphors as a means to support wellness, yet an increased understanding of the role of metaphors used by adults aging with HIV can generate insights inspire and improve care.

Presentaion #3: Knowledge Translation in Action: The Space Between Analysis and Dissemination

Laurene Sheilds, Anne Bruce and  Rosanne Beuthin

The final presentation in the symposium will explore the tensions between qualitative analysis and knowledge dissemination through examining a range of knowledge translation (KT) resources. Data analysis and dissemination of findings are often described as distinct or sequential processes, however, our narrative research team has used the knowledge translation process to further our analytic skills and to explore how knowledge translation also illuminates the stories we tell. Based on narrative interviews with 32 participants conducted over a three-year period, including representational symbols of illness, findings from the project will presented through sharing a range of KT strategies. These innovative resources include web-based approaches (vignettes with participant voice overs), community brochures using aesthetically pleasing images and narrative quotations, and symbolic images with poetic renderings. The contribution of creative and innovative arts and web-based strategies will be discussed in relation to the analytic process of narrative research. While evaluation research on the impact of these arts-based strategies is needed, these strategies have benefits in guiding and focusing the process of analysis itself as well as in offering accessible and evocative platforms for nursing research.

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