Use of Narrative and Portraiture in Qualitative Research: Exploring the Lived Experiences of Gay Men with HIV
By: David Leary, PhD, OTR/L
At a recent professional conference I attended, a presenter described the current health care climate as “volatile”. At first, I thought that too strong a word, perhaps too negative. Yet the terms “dynamic” and “challenging” seemed over used. However we describe the current experience of health care, we might agree that the experiences of being a health care consumer, as well as a health care professional are filled with change. I find that when things around me are changing too fast, I try to ground myself in the familiar. As an occupational therapist, I find a way to make sense of the health care climate by returning to the foundational concept of occupation. One of my personal occupations over the past ten years has been attending classes in pursuit of a PhD.
As part of this schooling occupation, several years ago, I immersed myself in the process of conducting a qualitative research study. I wanted to take part of my clinical practice and get to know more about occupation in the lives of my clients. I chose for my topic to utilize narrative to explore the lives of men with HIV. One of my foundational assumptions was that these men experienced particular challenges to their engagement in meaningful activities or occupations. The five men who participated in this study self identified as gay men. I proposed that for these men living with HIV along with their membership in this marginalized group resulted in a unique and complex experience. The following describes the unique method I chose and what I learned about occupation through this research.
I have always been an avid reader of stories; I might even say that reading is one of my primary occupations. I do it for pleasure and I do it for work. I remember reading that the best place to begin a story was at the beginning. I used this simple idea to frame this research; as a collection of stories. There are a variety of different types of stories and they can serve a number of purposes. Storytelling can contribute to a sense of self and locate one in a cultural community. Stories can serve as a resource for making sense of conflicts and contradictions. The stories I explored in this research represented a variety of voices and genres. The men who participated in this storytelling process did so through their own words and actions. Transcripts of narrative interviews and field notes based on my observations reflected their words. On occasion, I added my voice to the collection and told a few of my own stories. Each of these stories focused on the intersections of experience, occupation, and health in the lives of gay men infected with the human immunodeficiency virus (HIV).
Living with the double stigma of homosexuality and HIV / AIDS may, perhaps, be outside of the experience of the majority in our society. “Misinterpretations of people’s experiences and meanings are commonplace with behavior outside the experience and lifestyle of conventional academic researchers” (Becker, 1998, p.15). Foregrounding personal narratives allowed the participants themselves to relay their experiences and their meanings in their own words; thereby reducing the potential for misinterpretation. This research emphasized a focus on particularities; recording subtle, specific, descriptions and nuanced details of human experiences. I proposed that understanding several differing perspectives offered glimpses into the array of possible lived experiences; perhaps illuminating more universal patterns.
I am an occupational therapist. I found it difficult to transition to a “researcher”. I chose a method to conduct my study that I felt complemented my skills used in clinical practice. Portraiture is an innovative methodology drawing on phenomenological, narrative and ethnographic foundations. The goal of portraiture was to create a narrative that included the systematic and careful description of good ethnography, with the evocative resonance of fine literature. This method, developed by Sarah Lawrence-Lightfoot, was a means to join science and art; the empirical and the aesthetic. In this study, this method was used to create a narrative portrait of each of the five participants, conveying their essence through a painting with words. “The portraits are designed to capture the richness, complexity, and dimensionality of human experience in social and cultural context, conveying the perspectives of the people who are negotiating those experiences.” (Lawrence-Lightfoot & Davis,1997, p.3).
The development of portraiture was based on “…a long and rich history of dialogue and collaboration between artists and scholars” (Lawrence-Lightfoot & Davis, 1997, p.5). Lawrence-Lightfoot drew upon the work of Oliver Sacks (1985), The Man Who Mistook His Wife for a Hat, as he argued that science and art together contributed to the medical stories patients share with physicians. Works by William James and John Dewey were noted as examples of “boundary crossings and improvisations” between science and the representations of reality in their writings (Lawrence-Lightfoot & Davis, 1997, p. 6).
The visual metaphor of the portrait utilized in this study, had been previously used to describe ethnographic work. Clifford Geertz (1973) likened ethnographic work as being made or created, such as representing someone in a painting. “The line between the mode of representation and substantive content is as undrawable in cultural analysis as it is in painting” (p.16). Portraiture emphasized the importance of the humanistic dimensions of art via interpretation, imagination and creativity, balanced by “rigorous and systematic attention to the details of social reality and human experience” (Lawrence-Lightfoot & Davis, 1997, p.10).
This method allowed the researcher to navigate borders that typically separate disciplines, purposes, and audiences in the social sciences, “…bridging aesthetics and empiricism, appealing to intellect and emotion, seeking to inform and inspire….” (Lawrence-Lightfoot & Davis, 1997, p xvi). In this research study, I focused on the subjective point of view of the five individual gay men, rather than to emphasize homosexuals as an institutional group. The portraits developed of these five men were narratives of particular individuals, rather than landscapes of a community or cultural group. Descriptions of social and cultural contexts were key elements of the method, but it was a perspective seen through the subject and the researcher’s view. Portraiture included the careful and systematic documenting of words and actions. The focus was on how these actions were experienced and perceived by the individual, and explored the meanings attached to these actions.
Portraiture guides the interviews and participant observations in the study; additional lenses of narrative and experience contribute to the analysis. A narrative portrait of each man is presented along with in-depth thematic analysis of his experiences. Emergent themes include uncertainty with daily medications and side effects, which serve as constant reminders of their HIV status. A sense of control over their lives is achieved through adapting routines and reliance on social supports. Their narratives include rich diversity in self understandings that are deeply intertwined in their coming out as gay, the awareness of their HIV status, and their experiences of their body. The development of multiple identities is an ongoing process situated in a larger context of social relatedness. The men search for ways to make sense of the death of friends, their fear of their own sickness and death, and their possible future lives with HIV. These experiences of loss are expressed, negotiated, and narrated through the appropriation of metaphors, engagement in social action, and utilizing narrative as a cultural resource. The intersections of portraiture, narrative and engagement provide a better understanding of the complexity of the lived experiences of these five men.
As our clinical practice develops in this “dynamic” and “challenging” health care climate, I believe that our focus on the power of occupation in the daily life experiences of our clients can truly make a difference. Perhaps we can therapeutically connect with our clients in ways that help quell the “volatility” of health care and the challenges of each individual’s particular life.
About the Author:
David Leary, PhD, OTR/L is a presently a senior Occupational Therapist at Cedars-Sinai Medical Center in Los Angeles, CA. He received his PhD in Occupational Science from USC. He has a colorful and extensive background spanning clinical work, assistant professorship at the OTA and MSOT levels, and administration and management. He is passionate about mentoring other therapists, supporting the OT student fieldwork program, and improving therapy line service delivery. David recently presented a workshop at AOTA 2015, Effective Occupation-Based Services in Acute Care: Integrating Practice-Based Evidence With Clinical Reasoning.
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