Stories of Aging with HIV: (Un)Certainty and Sense Making

Abstract: Supervisory Committee Dr. Laurene Sheilds, (School of Nursing and Faculty of Human and Social Development) Co-Supervisor Dr. Anne Bruce, (School of Nursing) Co-Supervisor Dr. Donna Trueit, (School of Nursing) Departmental Member Dr. Marie Hoskins, (School of Child and Youth) Outside Member To live HIV positive and age into older adulthood is a new phenomenon. Research is helping to identify how the body is biologically impacted by the complex convergence of the virus, antiretroviral drug treatment, and aging. And yet there is more. One has to live in their body. Believing that stories of living with illness hold meaning, we also need to understand the lived experience of persons aging with HIV. When we engage and listen to stories of everyday lived experience, we are afforded a way to gain insight into particulars of aging with HIV, and this in turn generates understanding and compassion that can connect and teach all of humanity about the broader experience of life. The intent of this dissertation is to present the narrative inquiry I have undertaken over a five year period. I begin with an introduction to the phenomenon of aging with HIV and then present four manuscripts, two that highlight research findings related to metaphors and themes within stories, and two that focus on the interview process and narrative practice. In a concluding chapter I weave together my emergent understanding of what it means to age with HIV, narrative inquiry, and discuss implications of the findings that may take nursing and nursing care forward. iv In the first manuscript I address tensions that arose and troubled my narrative interviewing approach. Tensions arose when a) presence was tempered by performance, b) power by equality, c) leading by following, d) insider by outsider, e) being noninfluential by social influences, and f) trust tempered by responsibility. These tensions, which I refer to as a dynamic process of breathing in the mud, can act as catalysts that ignite clarity and advance narrative interviewing. In the second manuscript I explore metaphors within the stories of 5 adults’ experiences of aging with HIV. Metaphors reveal a complex struggle of living in-between tensions of uncertainty and hope, of facing death and living in the moment, and of hurt amidst joys of evolving identity. The overarching metaphor of “shadows and sunshine” reveals that to age with HIV is to survive and live in a fragile state, balancing multiple shadows such as stigma and side effects with joyful experiences of support and belonging. In the third manuscript I present results of a narrative analysis exploring HIV and aging stories of five adults, age 55-62, who have lived with HIV for 13-24 years. In analyzing the co-constructed stories, six common storylines were identified: the illness embodied, the journey of sense making of, intimacy with death and loss, ongoing secrets and stigma, evolving identity, and living in connection. These findings illustrate the vitalness of telling one’s illness story, as sense making happens in the telling and supports one to adapt. The final manuscript is a call to action and emphasizes cultivating a narrative sensibility in nursing practice. I offer the mnemonic STORIED to help nurses weave together essential elements of a narrative practice approach: Subjective, Tell/Listen, Openness, Reflection, Invite/Intention, Engage, and Document.