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

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 content with past and present experiences and future hopes. Overall, 3 prominent themes emerged from the analysis of the narratives: time, life changes, and family. Themes, subthemes, and corresponding quotes are listed in Table 2, Table 3 and Table 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 (eg, "I went"), present tense (eg, "I am"), and future tense (eg, "I hope") as it related to their individual identities. While some participants' 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. Table 2 provides an example quote linking the past to the present, in which a participant was 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).

Life Changes

Participants described a broad range of impacts caused by their illness, which included subthemes 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 subthemes, 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 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 National Coalition for Hospice and Palliative Care 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 3 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, a participant stated, "God gave me a miracle" (P5), 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 their illness. The word "sick" occurred 67 times and "illness" 31 times, and the participants 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 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 frequencies delineated in parentheses: 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 "godson." Similar findings underscoring the importance of social support included the appearance of words such as "people" (46), "together" (40), and "us" (35). For this article, 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 nonrelated people to the participant's family. More 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 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, work ethic, and helping others—and how they choose to emulate based on their parents' 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.

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.

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