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


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

In This Article


Study Design

A secondary analysis using narrative analysis methodology was used for this study. The 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 5 individual units that cared for patients with cancer, heart failure, chronic obstructive pulmonary disease, and/or end-stage renal disease.[14] The research team did weekly recruitment rounds on all 5 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 cocreated illness narrative[13] into the patient's electronic health record.[10]

Data Collection/Management

During the primary study, audio-recorded narrative interviews were collected by the last author from 20 hospitalized persons of color,[14] who had illnesses of heart failure, cancer, chronic obstructive pulmonary disease, or end-stage renal disease who were recruited at a single academic hospital. All 20 stories were 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 the interview guide). After each interview, the last author audio-recorded any field notes and completed the cocreated hybrid illness narrative. Through member checking, the patient participant reviewed written narratives for accuracy, noting satisfaction level with content. Once a patient participant approved his/her cocreated narrative, it was uploaded into that person's electronic health record.

At this point, the last author assigned numbers to each participant and deidentified the illness narratives. For confidentiality, only deidentified transcripts of interviews were available to the research team. The master deidentified transcripts were kept on a password-protected computer and inputted into Atlas.ti, 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 cocreated illness narratives. The deidentified hybrid illness narratives were shared with the research team. Using an iterative inductive analysis, all 3 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 Atlas.ti. 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 authors to categorize recurrent experiences.[15–17] Throughout the entire analytical process, 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'.


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/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 and then shared and reviewed by all 3 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 article. Neutrality occurs when there is "freedom from bias in both research, process, and product."[18] In this article, 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.