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J Hosp Palliat Nurs. Author manuscript; available in PMC 2021 November 15.
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Published in final edited form as:

J Hosp Palliat Nurs. 2020 October ; 22(5): 392–400. doi:10.1097/NJH.0000000000000682.

What Mattered Then, Now, and Always: Illness Narratives from

Persons of Color
C. Robert Bennett, CPNP-AC, MSN [PhD candidate],
College of Nursing, University of Colorado Denver.

Nadia Shive, BA, CCRC [Professional Research Assistant],

College of Nursing, University of Colorado Denver.
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Heather Coats, PhD, APRN-BC [Assistant Professor of Research]

College of Nursing, University of Colorado Denver.

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 co-created 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, three main themes emerged: 1) time, 2) life changes, and 3) family.
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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.

Keywords
Illness narratives; serious illness; narrative analysis; person-centered; palliative care

INTRODUCTION
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In recent years Western Medicine has seen a shift toward incorporating the person’s entire
life experience into the development of his or her plan of care. The IHI (Institute for
Health Improvement) 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

Address correspondence to Heather Coats, PhD, APRN-BC, College of Nursing, University of Colorado Denver, Anschutz Medical
Campus 13120 E. 19th Avenue, C288-18, Education 2 North, Aurora, CO 80045 ([Link]@[Link]).
Declaration of Conflicting Interests: The authors have no conflicts of interests to declare.
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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
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of quality of life and the meaning of illness.2-5 Persons of color with serious illness have
experienced difficult interactions with their healthcare 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 quality of life 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 healthcare to provide healing and avoid contributing
to suffering. Healing is defined as a subjective and multidimensional concept that creates a
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“sense of wholeness as a person” despite one’s illness7 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
healthcare 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) are 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
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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 Co-created 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) healthcare 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
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“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 (PCC) for patients with serious illness improves
quality of life (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

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provides opportunities to improve QOL for this population. Using narrative analysis, the
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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 theory of Health as Expanding Consciousness7, the
premise of which is to understand the connection between environment and lived experience
of the person’s continumm of wellness and illness. In this theory, illness and its antithesis,
wellness, are united into a single concept called health.7 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 paradigm of health, and it is used to evaluate patterns based on their whole in
order to understand their meanings.7 Pattern recognition may help individuals intuitively
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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 Health as Expanding Consciousness perspective
to understand the contextual factors surrounding the participants’ health, in conjunction with
Riessman’s approach for developing the illness narratives.

Co-creating 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 approach to narrative methods for human
sciences12 which develops co-created narratives, or stories. Co-created 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
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of the participant’s experiences and their prescribed meanings.12,13 In this co-created 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/narrator’s inner emotions, thoughts, or reasons for action. The interview
guide used for the co-creation of the illness narratives is shown in Figure 1. For an exemplar
of a co-created illness narrative, a participant who had been diagnosed with end-stage renal
disease receiving hemodialysis told the most detailed narrative. (See Figure 2.)

METHODS
Study Design
A secondary analysis using narrative analysis methodology was used for this study. The
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purpose of the primary study was to define and refine the narrative intervention, seeking
input from key stakeholders: person of color and the acute care nurse who cared for them.10

Participants and Setting

Once the Institutional Review Board approved the study, participants were recruited from
an inpatient academic hospital, from five individual units that cared for patients with
cancer, heart failure, chronic obstructive pulmonary disease (COPD), and/or end-stage

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renal disease (ESRD).14 The research team did weekly recruitment rounds on all five
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participating units. Study inclusion criteria required that patient participants self-identify as
a minority in order to be eligible.14 Once the research team identified a potential participant,
the study was introduced and if the person was interested in participating, consent was
obtained. After enrollment, the research team scheduled a convenient time for collecting
the patient’s narrative and demographic information. As part of the primary study, the last
author uploaded each co-created illness narrative13 into the patient’s electronic health record
(EHR).10

Data Collection/Management
During the primary study, audio-recorded narrative interviews were collected by the last
author from 20 hospitalized persons of color14, who had illnesses of heart failure, cancer,
COPD, or ESRD who were recruited at a single academic hospital. All 20 stories were
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collected by the last author, from November 2017 through November 2018, through
audio-recorded, open-ended interviews. The initial segment of the interview gathered the
demographic information such as age, time since diagnosis, education level, marital status,
insurance status, and religious tradition. The second segment of the interview was divided
into sections and began with an open-ended question: “Tell me about your illness.”
The interviewer then used prompts to further query about emotional, social, or spiritual
dimensions of the participant’s illness experiences with questions such as, “How has your
illness changed you emotionally?” (See Figure 2 for Interview Guide.) After each interview,
the last author audio-recorded any field notes and completed the co-created hybrid illness
[Link] member checking, the patient participant reviewed written narratives for
accuracy, noting satisfaction level with content. Once a patient participant approved his or
her co-created narrative, it was uploaded into that person’s EHR.
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At this point, the last author assigned numbers to each participant and de-identified the
illness narratives. For confidentiality, only de-identified transcripts of interviews were
available to the research team. The master de-identified transcripts were kept on a password­
protected computer and inputted into [Link], a qualitative data analysis software program.
During the analysis phase and for manuscript purposes, participant IDs were assigned to
each participant. For data accuracy, the entire transcripts were transcribed by an external
transcriptionist for use as comparison during the data analysis process of analyzing the
illness narratives.

Data Analysis
For this study, a thematic analysis was conducted of the 20 co-created illness narratives.
The de-identified hybrid illness narratives were shared with the research team. Using an
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iterative inductive analysis, all three authors did independent open coding. First, open
coding was used allowing the emerging codes to come directly from the illness narratives.12
The preliminary codes of experiences emerged from reading the illness narratives line by
line, both manually and electronically within [Link]. Once the initial codes were chosen,
the illness narratives were read and reread through a “recursive process.” This recursive
process was defined as “a movement back and forth through” the data -- a coding process
that created the thematic analyses.12 The processes of this thematic analysis allowed the

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authors to categorize recurrent experiences.15-17 Throughout the entire analytical process,

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the categories/patterns were refined and defined at the weekly meetings attended by all
authors. The exemplars used in the results below are verbatim quotes, used in the interest of
reflecting the participants’ voices and not the authors’.

Rigor
Trustworthiness is the accepted measure of rigor in qualitative research.18 Criteria for
trustworthiness (credibility, applicability, consistency, and neutrality) were used for this
study. Credibility was achieved through the use of the reflective field notes kept by the last
author and the analytical memos that each research team member kept of his or her coding.
This process allowed all authors to recognize and separate their own thought processes
from those of the participants in an attempt to stay true to the voice of each participant.
For applicability, detailed analytical memoing was kept by each author, then shared and
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reviewed by all three authors at the weekly research team meetings. Consistency was met by
providing detailed descriptions of the data collection, data analysis, and verbatim excerpts
from the participants’ interviews within this manuscript. Neutrality occurs when there is
“freedom from bias in both research, process and product.”18 In this manuscript, particular
steps were detailed so others can see how the authors achieved credibility, applicability,
and consistency. The authors recognized the possibility of personal biases but attempted to
portray the subjective experience of the persons living with serious illnesses as part of the
interpretive research process.

RESULTS
A purposive sample of 20 persons of color living with serious illness were recruited. (Table
1) Consistent with other narrative literature, all 20 illness narratives had similar structural
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content with past and present experiences and future hopes. Overall, three prominent
themes emerged from the analysis of the narratives: time, life changes, and family. Themes,
subthemes and corresponding quotes are listed in Tables 2-4.

Time: What mattered then, now, and always

In life narratives, time is a recurrent concept that reflects persons’ past, present, and future
lives. This comes through in the stories “lived and told.”12,13 In the theme of “what mattered
then, now, and always,” the participants described a wide range of time orientation, linking
the concept to family, employment, culture, life before and after illness, and beliefs about
spirituality. The word “time” was prominent and occurred in 133 instances in the narratives.
Participants used time in past tense (e.g. “I went”), present tense (e.g. “I am”), and future
tense (e.g. “I hope”) as it related to their individual identities. While some participants’
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individual identities seemed to remain constant throughout the passage of time, other
identities appeared transient or had evolved. (See Table 2 for verbatim quotes.)

Participants rooted their identities in time. For example, 15 of the 20 participants described
evolving identities linked to their employment. Negative social impacts of their illness
also included discussions regarding finances, work, and disability across time. Participants
remarked about the difficulty of quitting work by reflecting on their work life through time.

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Table 2 provides an example quote linking the past to the present, in which a participant was
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raised with a strong work ethic and is now struggling with their current inability to work.

The participants described their own sense of self, regardless of their illness, in a way that
bridged events and perceptions of themselves throughout their lives. When the participants
described these identities, their language indicated that the identities felt constant, such as
“I am a people person, a helper” (P12). Similarly, even when some participants described a
perception of themselves as living with illness, they still threaded that identity into broader
perspectives of self, saying, “I am determined” (P14) or “I am a survivor” (P2). For the
identities linked to family, they stated, I am a“mom” or “granddaddy; and this tickles me to
say that I am a grandparent” (P13). Participants described their individual identities linked
to spiritual/religious beliefs with the same past, present, and future orientation, for example,
“we are also Catholic which is an important part of who I am” (P8).
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Life Changes
Participants described a broad range of impacts caused by their illness which included
sub-themes emerging from not only the physiological aspect of illness, but also from the
social, psychological, and existential. Table 3 contains subthemes related to “Life Changes”
and supporting quotes. Participants described how their identities had been remodeled in the
context of coping with their illness while discovering a new purpose/meaning in their current
life. Participants relayed the impact of illness on the whole person. Within each of these
sub-themes, the impacts described were both positive and negative. The most prominent
theme was from the existential domain -- fewer illness narratives included psychological or
physical aspects. (See Table 3 for verbatim quotes.)

Existential—Participants described changes in the existential domain as identity changes

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related to time. We define existential as “a dynamic and intrinsic aspect of humanity, through
which individuals seek meaning, purpose, transcendence and experience relationship to self,
family, others, community, society, and the significant or sacred that is expressed through
beliefs, values, traditions, and practices.” The NCHPC defines existentialism as a journey
of evaluating beliefs previously held as true while searching for meaning and purpose in
one’s life.2 The participants in this study used religious words such as “God” or “Lord”
or “church” in their illness narratives. Only three of the 20 participants did not have the
words “God” or “Lord.” Of these, P1, P13, and P17 stated, “I am not religious,” when
asked how their illness had affected their religious or spiritual beliefs, and their narratives
did not include any religious words such as church, god, or religion. Other participants
described their reasons for being alive as lodged in their belief in the sacred. For example,
when discussing her heart transplant, one participant stated, “God gave me a miracle” (P5)
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and another credited God outright by saying, “I firmly believe the only reason I am here is
because of God” (P7). Other participants said similar statements such as, “Looking back,
even at those times when the medical team brought me back, I knew the hand of God was in
it” (P11), and “The Lord takes care of me” (P18).

Physiological—Participants described physiological impacts by stating the illness and

then linking that to physical body changes they experienced throughout the duration of

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their illness. The word “sick” occurred 67 times and “illness” 31 times and the participants
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described the illness impact in both positive and negative ways. In a negative perspective,
participants described acquiring symptoms of fatigue, body swelling, weight changes, and
generalized discomfort. In the positive perspective, participants described learning to adapt
and overcome physical changes.

Psychological—Changes in the psychological domain focused on individual emotions

and participants’ ability to cope with illness and were described in both positive and negative
perspectives. Some participants described impacts in a positive vein, learning how to “stay
positive” despite illness. In the negative perspective, some participants expressed emotions
of helplessness and fear.

Some of these meaning/purpose statements describe an individual change in the participant’s

outlook on life. Participants described the following after a heart transplant: “I feel like a
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new person, a person who has a new life” (P5), and “I am excited for a second chance and
to make the most of it” (P12). Other participants described immediate hopes, such as the
participant who stated, “looking forward to ringing the bell when I leave the hospital” (P5),
or daily changes, such as another who said, “I have to stop and smell the roses” (P7).

Family
Family was prominently represented in all 20 narratives by a variety of terms. The word
“family” occurred 113 times throughout the narratives. Words associated with family
occurred with the the frequencies delineated in parenthesees : Mom (82); Dad (78); Kids
(50); Sister (42); Daughter (38); Brother (37); Son (32); Children (24); and Wife (28).
Other terms for family included “abuelo” (grandfather) and “god-son.” Similar findings
underscoring the importance of social support included the appearance of words such as
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“people” (46), “together” (40), and “us” (35). For this paper, family is defined as a social
unit consisting of parents and children which subjectively extends to include people who
share a kinship. As found in the other themes, the participants described both positive and
negative impacts about family as it related to illness. (See Table 4 for verbatim quotes.)

An emergent theme in the topic of family was the election of non-related people to the
particpant’s family. Greater than half (14/20) of the participants described people in their
lives they embrace as family members who have been supportive during their illness course.
Types of persons commonly embraced as chosen family members included close friends
from organized groups such as church or tribes. Participants described a type of kinship
with these friends based on similarities in spiritual beliefs and values. Other types of chosen
family members were labeled “soul sisters” or “best friends,” and were included to fill
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a void in the absence of significant family support. Regarding lifelong friendships, one
participant remarked, “we have been best friends since we were kids” (P17).

Many participants recalled how early influences of their parents’ and grandparents’ words
and actions helped shape their character while growing up. Lessons from parental figures
provided a framework of family values with which their future actions were consistent.
Participants described several values their parents and grandparents imparted upon them
early in their lives -- most commonly kindness, altruism, generosity, discipline, spirituality,

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work ethic, and helping others -- and how they choose to emulate based on their parents’
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examples. A participant described her father’s kindness and generosity with the statement,
“He was one of the best persons you would ever know” (P4). Another participant described
his early examples of having a strong mother and gentle father leading him to become
a young patriarchal figure among his siblings and cousins. A participant raised in a single­
parent household described their mother as having a positive attitude and a strong work
ethic, imparting an ability to “work things out together” (P13).

Multiple participants described the positive impact of illness by relaying how their
family relationships improved, specifically becoming closer. Conversely, some participants
described negative stressors imposed on the family unit by illness, including inability to
engage in leisure activity with their family. One participant described difficulty related to
others’ interactions with her since her illness.
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Participants prominently identified the importance and positive influence of family based
on the quotes in Table 4. In addition to the importance of family relationships in their
current lives, participants discussed the interplay between their current illness and the role of
their families. Multiple participants described the benefits of having a close family through
statements about their support over the years, and gratitude for their early influences.

DISCUSSION
The themes derived from the participant illness narratives of Time, Life Changes, and
Family demonstrate how multiple contextual factors contribute to the lived experiences of
seriously ill persons of color. Within these illness narratives, one can begin to understand the
patient as a whole person. They describe their identities which are not linked to their illness,
describing themselves as persons prior to being ill. Consistent with Newman’s Theory
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of Health as Expanding Consciousness, they all described how their illness experiences
may have impacted their personhood in their social, spiritual, psychological, and physical
domains.

In relation to the participants’ illness, specifically, the description of time was very
prominent, whether it was being discussed in past, present, or future tense. Participants
relayed that the ability to have positive psychological, social, or spiritual outlooks helped
them through difficult “times.” In the narratives, there were descriptions about waiting,
worry of the unknown, and uncertainty, and how these experiences made the participants
feel a lack of control over illness. Time expressed as past, present, and future was an
important factor discussed in reference to participants’ personhood. Participants reported
their perspectives changing over the course of time, which is additionally supported
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by literature describing patients experiencing clarity in what they value.19 Many of the
participants were waiting for something: to receive an organ transplant, to complete
treatment, to feel better, and to return to a “regular” life. Waiting -- and its associated
loss of control -- may contribute to physical and emotional suffering.19 The phenomenon
of suspended time while waiting has been documented in patients receiving palliative care,
especially waiting for treatments and appointments.19

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Within the theme of Life Changes, none of the participants described negativity in the
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existential domain. This even includes three participants who did not discuss spirituality.
The 17 participants whose narratives included spiritual content described this domain as a
highly important part of their lives. The participants linked their meaning and purpose for
living to spiritual beliefs and values. Some of these meaning/purpose statements link to the
theme of family.

In the theme of family, the participants described their concept of family with various
compositions. This is consistent with the definition of family as suggested by the National
Coalition for Hospice and Palliative Care (NCHP)2. Family includes: the family of origin
and/or the family of choice, as defined by the person.2 Greater than half of the participants
(13/20) described their family as having a nuclear structure, explicitly including their
siblings, spouse or significant other, children, stepchildren, and grandchildren. Other family
structures included naming either a single parent or adult child as a primary supportive
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family member. When analyzing frequency of mention based on ethnicity, there were
apparent similarities between groups. An exception is that the grandmothers were mentioned
more frequently among the Hispanic/Latino participants than among the Black, Asian, or
Native American participants.

Types of chosen family members included in-laws, step-family members, or half siblings.
Several participants embraced their stepchildren and grandchildren as their own. Some
participants regarded a half sibling as a full sibling because they were raised together,
in contrast to half siblings with whom they were not raised. Other prominent types of
chosen family members were extended family such as 3rd cousins and God-children. Some
participants regarded former significant others with whom they are co-parenting children
as their primary source of family support. It was evident in each of these scenarios that
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embracing a person as family or not was a choice.

Family virtues imparted by parents and grandparents had a lasting effect on participants,
continuing to influence their present experiences. Participants described the value of religion
(most commonly Christianity), and how the importance of attending church as a way of life
had been passed on to them. Faith was passed on as a legacy through a tradition followed by
generations of family members. Participants whose parents were deceased utilized lessons
from their parents’ mortality. A participant who had a hereditary illness utilized her mother’s
mortality as an opportunity to recognize the importance of self-care so she may avoid a
premature death and continue to provide care for her son. Another participant drew from
the experience of her parents being deceased and her professional training as a counselor
to keep her family together. Regarding the social aspects of care, awareness of a patient’s
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social-support systems, relationships, and social resources is important in order to optimize

the patient’s coping abilities and to ultimately support quality of life.2

As a culmination of lessons from their parents and grandparents, participants discussed

their future thoughts about family and their desire to influence the next generation. One
participant stated, “I want to be able to teach my son right from wrong and be a positive
example for him. My grandparents taught me those things” (P17). A participant melded the
concepts of identity, pride, and influence on the next generation with the quote, “I am so

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glad my daughter has become a strong independent woman. I heard from my daughter how
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she wants to be like me, a strong Hispanic woman who takes care of herself” (P7).

IMPLICATIONS FOR RESEARCH

Culture plays an influential role in how patients report their illness experiences, and express
their symptoms and care preferences.2 Participants spoke about how their illness impacted
the social and existential parts of their lives. This study provides unique insights into the
life experiences and social structures of persons of color and continues to add to the extant
literature on psychological, social, and existential domains. It is imperative to assess these
aspects of the person living with serious illness to adequately support these patients and their
families. Understanding the importance of the cultural domains of care for persons of color
who have serious illness may improve healthcare providers’ understanding of underlying
factors contributing to patients’ decision making and underlying social determinants of
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health.

LIMITATIONS
First, recruitment at a single academic medical center was a limiting factor for this
study. Transferability of these results may be partly limited by the geographic region and,
therefore, may not represent a wide range of cultural experiences of persons of color who
have serious illness residing in other parts of the country. Second, it should be noted the
data used for the analysis were previously collected, co-created illness narratives between
patients and the last author from a prior study and not a data set of raw verbatim interview
transcripts. Despite these limitations, data analysis for this paper included two outside
members, the first and second author, who independently coded the illness narratives to
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decrease bias of the last author who had been involved in the primary study. Third, use of
secondary data and the application of Newman’s conceptual framework was not the original
theoretical framework of the primary study, though Newman’s framework aligns with the
person-centered whole person approach to the primary study based on the NCP guidelines.

CONCLUSION
This study contributes valuable insight into the experiences of persons of color living with
serious illnesses, and novel information about how their illness experiences influenced their
life but did not define their whole personhood. Family presence and relationships played
significant roles in shaping the participants’ identities prior to illness, during illness, and
beyond the present (i.e., who they aspire to be) and these can also shape their priorities
during each of these stages. Providing patients the opportunity to define and express their
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character through formation of narratives may inform healthcare providers’ understanding

of patients’ coping style, coping resources, healthcare beliefs, and preferences for care.
Knowledge obtained from creating illness narratives may be different from knowledge
shared in questionnaires. Utilizing illness narratives may also overcome barriers such as
literacy or discomfort disclosing personal information in the form of a written questionnaire
while providing more in-depth, authentic information. Narratives from persons of color
with serious illness can inform nurses’ understanding of patients’ illness experiences

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and enhance communication between nurses and patients. Improved communication may
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provide opportunities for the type of culturally congruent care that leads to improved QOL
and can lessen suffering for persons of color with serious illness.

Acknowledgements:
The authors would like to acknowledge the persons living with serious illness who shared their stories as
participants in this study.

Funding: Research reported in this abstract was supported by the National Institutes of Health National Institute of
Nursing Research under award K99 NR016686. The content is solely the responsibility of the authors and does not
necessarily represent the official views of the National Institutes of Health.

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Person-Centered Narrative Intervention into the Electronic Health Record: An Implementation
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Figure 1.
Interview questions
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Figure 2.
Exemplar On My Way to Texas (Vignette)
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Table 1.

Participant Demographics
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Characteristic Valid n al
Statistic

Age (mean (sd)) 20 52.15 (14.28)

Sex (n (%)) 20
Female 8 (40%)
Male 12 (60%)
Race/Ethnicity 20
White 0
Black 8 (40%)
Hispanic/ Latino 9 (45%)
Korean/Native American 1 (5%)
Native American 2 (10%)
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Length of Illness (n (%)) 20

<1 year 2 (10%)
1-5 years 8 (40%
6-10 years 4 (20%)
11-15 years 4 (20%
16-20 years 2 (10%)
Type of Illness (n (10%)) 20
Cancer 3 (15%)
Heart Failure 15 (75%)
ESRD 4 (20%)

a
In all tables continuous variables were reported with their mean and standard deviation, while categorical variables were reported with the sample
size and percent within each sub-category.
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Table 2.

Theme: Time- What mattered then, now, and always

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Subthemes Exemplar Quotes

Past “…at this time, no one really seems to know what is causing, so I’ll just keep waiting for more test results” (P1)
Present “Right now, I am stuck in this rut and cannot get a transplant until my sickle cell is better” (P17)
“Those dreaded words ‘you have to be on disability.’ I was raised with a strong work ethic instilled in me by my grandparents
and parents. I have worked every day since I was 18” (P7)
“When you are sick, you lose some control which has been hard for me” (P2)
Future “I continue to have worries about all my medical bills and losing my house” (P4)
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Table 3.

Theme: Life changes

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Subthemes Exemplar Quotes

Existential “Dealing with this illness has made my beliefs in the medicine man a lot stronger and closer to our medicine man” (P19)
“Going through this type of mortality awareness is a real journey of ups and downs. You have to figure out that life is worth
living, decide to fight to stay active so you can win the battle” (P12)
“Real life hits you when you get hit with your mortality. You look at your life with a whole new perspective. Even though I
have always considered myself a man of God, my illness experiences took this to a whole another level. I am stronger; my
relationships with my family are stronger” (P11)
“I have always found my strength in God. You always put it to Him, no matter what. This has always been my blanket of
comfort” (P6)
“Why am I still here? My granddaughter came to mind, I still am here to watch my grandchildren grow up, help them find their
way as my grandmother did for me” (P2)
Physiological “My body became so tired, so heavy, so sore, it is a tired you, it is a tired you cannot even explain” (P14)
“I had to start hemodialysis; it was hell. As soon as I started, I couldn’t eat, always so cold and fainting all the time. I even lost
some 50 pounds” (P15)
“I look forward to a time when I no longer feel wiped out from the cancer treatment” (P1)
Psychological “I have been through so much. Emotions are all different. Up and down” (P19)
“Despite all the physical sickness I have experienced over the last month, I have to stay positive. I believe that the way to get
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through tough times is to stay positive” (P4)

“The last three weeks has been scary. It’s been scary not knowing if I am going to live or die at age 39” (P20)
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Table 4.

Theme: Family
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Subthemes Exemplar Quotes

Chosen Family
“I do not have any other biological family, but I do have several soul sisters. My closest younger soul sister is one of the most
amazing persons I know” (P4)
“I never had any children of my own, but was always the trusted family babysitter for all my nieces and nephews” (P3)
Positive impact
“Since my illness, I think it brought all the family together, my dad, my mom, my sisters, my brothers… everybody’s a little
closer” (P19)
“My illness has taught me to let some things go. I have learned to not deal with people who used to overwhelm me. I have
learned to pull away and change my way of thinking that I don’t have to deal with these people” (P7)
Negative
impact “Illness takes a toll on everyone, the whole family” (P6)
“It hurts when others (family members) look at you ‘sick,’ sometimes others don’t let me do enough and this makes me feel
useless. I don’t want others to see me as a sick person” (P14)
Family
influence “My family is the most important thing to me” (P8)
“If I had not had my grandmother’s influence at a young age, I might have ended up being a part of a gang, dead, or in
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jail…she kept me on the straight and narrow” (P2)

“We both live with our illnesses, and we are by each other’s sides no matter what” (P6)
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