What Mattered Then, Now, and Always

Illness Narratives From Persons of Color

C. Robert Bennett, CPNP-AC, MSN; Nadia Shive, BA, CCRC; Heather Coats, PhD, APRN-BC

Disclosures

Journal of Hospice and Palliative Nursing. 2020;22(5):392-400. 

In This Article

Abstract and Introduction

Abstract

Developing solid communication-based partnerships through obtaining illness narratives allows for an understanding of patients' social resources, values, and beliefs and allows an opportunity to provide person-centered care. This study aimed to elicit cocreated illness narratives from persons of color who have serious illness. Twenty patients receiving care for serious illness were interviewed at a large academic medical center. The interviews focused on how illness affected patients' lives and were followed by formation of illness narratives. From the persons living with serious illness, 3 main themes emerged: (1) time, (2) life changes, and (3) family. Participants described how illness did influence their lifestyles and identities but did not define their personhood. Family influence had a lasting effect on participants' values and beliefs, and family presence was viewed as valuable in their current lives. Narratives from persons of color with serious illness can provide an intimate account informing nurses' understanding of patients' illness experiences and may enhance communication between nurses and patients.

Introduction

In recent years, Western Medicine has seen a shift toward incorporating the person's entire life experience into the development of his/her plan of care. The Institute for Health Improvement (IHI) emphasizes "person- and family-centered care," which is described as "putting the patient and the family at the heart of every decision and empowering them to be genuine partners in their care."[1] In this, the IHI's goal is to develop "partnerships between clinicians and individuals where the values, needs, and preferences of the individual are honored; the best evidence is applied; and the shared goal is optimal functional health and quality of life."[1] Culture influences health behaviors as well as patients' perceptions of quality of life (QOL) and the meaning of illness.[2–5] Persons of color with serious illness have experienced difficult interactions with their health care providers, lack of psychosocial and spiritual support, and insufficient symptom control.[4,5] Therefore, research that examines psychological, social, and spiritual experiences for persons of color is necessary to understand their cultural values, needs, and preferences.[4,5]

For persons with serious illness, creating the best QOL likely cannot always be a physiological cure, considering that serious illness is defined as "a persistent or recurring condition that adversely affects one's daily functioning or will predictably reduce life expectancy."[4–6] However, even if a biomedical cure is unattainable for persons living with serious illness, opportunities exist in health care to provide healing and avoid contributing to suffering. Healing is defined as a subjective and multidimensional concept that creates a "sense of wholeness as a person" despite one's illness[7] and suffering—which is defined as an "unpleasant, emotional experience that can be psychological, social and/or spiritual."[8]

Since 2015, the IHI has promoted a reframing of the clinician-person interaction to orient care toward the whole person by encouraging clinicians to ask the individual receiving health care a simple question: "What matters to you?" in addition to "What's the matter?" This reframing lends a different perspective to a plan of care that opens the door for opportunities to involve the person's whole self.[1] Certainly, the authors do not want to diminish the physiological as an important component in the delivery of care. First, as clinicians, our expertise (life experiences and training) is grounded in knowledge of the physiological, but we also appreciate that we are not experts in the whole person who is sitting across from us in clinic. Second, when a person is facing an illness, even if curing the illness is unlikely, healing of the self is still possible. On June 8, 2019, National Public Radio, ran a story in its NPR Morning Edition titled "Storytelling Helps Hospital Staff Discover the Person Within the Patient."[9] Cocreated illness narratives are one proposed tool for shifting to more person-centered care.[10]

Person-centered care is a lens through which to refocus the Western (US) health care system on the user of the system—the person who has a health need—in such a way that emphasizes the entirety of that person's life experience, not just the part concerning the illness. Each person holds past, present, and future narratives of experiences that compose our identity—that idea of "who we are." Yet in Western medicine, these narratives are often viewed as separate from one another, as if the individual was composed of parts rather than existing as a whole person. Consider that a clinician might think, for example, about "the cancer patient in room 202," instead of about "Jon, the person in room 202, who is a grandpa, a dad, and businessman and whose illness is impacting his ability to be all of these things."

Comprehensive person-centered care for patients with serious illness improves QOL, quality of care, and patient satisfaction.[11] Cultural aspects of care for persons living with serious illness can be discovered through listening to them and collecting their illness narratives. Research defining and integrating cultural values and beliefs in care provides opportunities to improve QOL for this population. Using narrative analysis, the purpose of this study is to describe serious illness experiences of persons of color.

Theoretical Framework and Conceptual Definitions

This study used Margaret Newman's[7] theory of health as expanding consciousness, the premise of which is to understand the connection between environment and lived experience of the person's continuum of wellness and illness. In this theory, illness and its antithesis, wellness, are united into a single concept called health. Disease may be manifest from an implicate pattern based on an individual's position in space and time.[7] Individuals with similar personality types and symptoms may manifest their illnesses as a result of implicate pattern similarities positioned in space and time.[7] Pattern recognition is part of Newman's[7] paradigm of health, and it is used to evaluate patterns based on their whole in order to understand their meanings. Pattern recognition may help individuals intuitively sense patterns of their lives and gain insight into actions that can be taken in response to these patterns.[7] The pattern manifested in the form of illness may provide insight into the dynamics of a person's life experiences that may not be manifest by other means. For this study, the research team applied Newman's[7] "health as expanding consciousness" perspective to understand the contextual factors surrounding the participants' health, in conjunction with Riessman's[12] approach for developing the illness narratives.

Cocreating illness narratives with persons with serious illness may assist these individuals to examine their life patterns, the meaning of illness events, and the interactions within their lived experiences. This study used Reissman's[12] approach to narrative methods for human sciences, which develops cocreated narratives or stories. Cocreated illness narratives are the sense made out of phenomena through the negotiation and extended dialogue between a researcher and participant, arriving at a mutually agreed-upon person-centered narrative of the participant's experiences and their prescribed meanings.[12,13] In this cocreated story, the teller persuades the receiver about the course of and perception about events.[12,13] The receiver reinterprets the teller's story despite not being present and not having the ability to know the teller's/narrator's inner emotions, thoughts, or reasons for action. The interview guide used for the cocreation of the illness narratives is shown in Figure 1. For an exemplar of a cocreated illness narrative, a participant who had been diagnosed with end-stage renal disease receiving hemodialysis told the most detailed narrative (Figure 2).

Figure 1.

Interview questions.

Figure 2.

Exemplar on My Way to Texas (vignette).

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