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. Author manuscript; available in PMC: 2021 Feb 10.
Published in final edited form as: Qual Health Res. 2017 Sep 9;28(3):346–356. doi: 10.1177/1049732317728916

A Discourse Analysis: One Caregiver’s Voice in End-of-Life Care

Erin Kitt-Lewis 1, Susan Strauss 1, Janice Penrod 1
PMCID: PMC7875470  NIHMSID: NIHMS1664870  PMID: 28891387

Abstract

Informal family caregivers make a significant contribution to the U.S. health care system, and the need for caregivers will likely increase. Gaining deeper insights into the caregiver experience will provide essential knowledge needed to support the future caregiver workforce delivering care. Discourse analysis is a viable approach in analyzing textual caregiver data that focuses on the end-of-life caregiving experience. The purpose of this study was to conduct an in-depth discourse analytic examination of 13 hours of caregiver interview data, which reveal the multiplicity of shifting stances and perceptions of one caregiver in the midst of end-of-life care, specifically with regard to his perceptions of self (caregiver) and other (care recipient). By isolating a specific but limited set of reference terms used throughout the discourse, we gained systematic glimpses into the mind and perceptions of this single caregiver in relation to his role as caregiver for his terminally ill wife.

Keywords: discourse analysis, secondary analysis, informal family caregiver, qualitative methods, Northeastern United States

Informal family caregivers make a significant contribution to the U.S. health care system, and the need for caregivers will likely increase. Gaining deeper insights into the caregiver experience will provide essential knowledge needed to support the future caregiver workforce delivering care. Discourse analysis (DA) is a viable approach in analyzing textual caregiver data that focuses on the end-of-life (EOL) caregiving experience. The purpose of this study was to conduct an in-depth discourse analytic examination of 13 hours of caregiver interview data, which reveal the multiplicity of shifting stances and perceptions of one caregiver in the midst of EOL care, specifically with regard to his perceptions of self (caregiver) and other (care recipient). By isolating a specific but limited set of reference terms used throughout the discourse, we gained systematic glimpses into the mind and perceptions of this single caregiver in relation to his role as caregiver for his terminally ill wife.

Nearly 66 million Americans are unpaid informal family caregivers (caregivers) and make a significant contribution to the U.S. health care system (American Association of Retired Persons [AARP], 2013; National Alliance for Caregiving & AARP, 2009). Caregivers provide care for adult family members or friends with chronic or life-limiting conditions. As a result of changing demographics (i.e., the graying of America, increases in life-limiting conditions) as well as shifts in the locations (i.e., from institution- to community-based) and level of EOL care, many caregivers work tirelessly to provide care to family members/friends as the care recipient’s illness progresses and EOL becomes imminent (Halaweish & Alam, 2015). The care provided by caregivers accounts for 37 billion hours of unpaid care, such as assisting with activities of daily living, managing medications, and preparing meals. In 2013, the estimated economic value of informal family caregivers’ unpaid support was US$470 billion to US$522 billion (Chari, Engberg, Ray, & Mehrotra, 2015; Reinhard, Feinberg, Choula, & Houser, 2015). This is a US$20 billion increase from 2009 (Feinberg, Reinhard, Houser, & Choula, 2011).

Although an extensive scientific literature can be found on EOL caregiving, most research has either been quantitatively focused, revealing statistical trends and patterns, or broadly qualitatively focused, revealing general trends and themes within data (Lendon et al., 2015; Morgan, Ann Williams, Trussardi, & Gott, 2016). To date, no research on EOL caregiving has been conducted through a discourse analytic lens that unveils the actual perspectives, feelings, attitudes, and voices of the caregivers as they become immersed in the day-to-day activities of caring for a friend or loved one. A combined macro-micro analysis of caregiver discourse allows the researcher and the nursing community to more accurately “hear” the voices of the individuals involved and to view with more precision and systematicity the multiple ways in which the caregivers conceptualize self and their roles in the caregiving process, in addition to the ways they conceptualize the care recipients.

The purpose of this study was to conduct an in-depth discourse analytic examination of 13 hours of caregiver interview data, which reveals the multiplicity of shifting stances and perceptions of one caregiver in the midst of EOL care, specifically with regard to his perceptions of self (caregiver) and other (care recipient). The focus of this study was on the types of reference terms used throughout the caregiver interview and narrative data. Specifically, the patterned use of third-person reference terms (“she”/“her,” “my wife,” wife’s name) and first-person reference terms (e.g., “I” and “we”) to elucidate the more subtle and less obvious manifestations of his perceptions of self as husband/father/caregiver and perceptions of his wife as wife/mother/daughter/care recipient were analyzed. Through the use of the semiotic lenses of reference and indexicality, this article sheds light on the already established theoretical underpinnings of caregiver discourse, namely Seeking Normal and EOL Caregiving Trajectories (Penrod, Baney, Loeb, McGhan, & Shipley, 2012) in the original study (and upon which this secondary data analysis is based).

Caregiving at the EOL

An informal family caregiver is “any relative, partner, friend or neighbor who has a significant personal relationship with, and provides a broad range of assistance for, an older person or an adult with a chronic or disabling condition” (Family Caregiver Alliance, 2014, para. 6). For the purpose of this article, informal family caregivers are referred to simply as “caregivers.” Numerous research studies have documented the challenges and demands associated with caregiving at the EOL. Caregivers providing EOL care report significant personal cost, including emotional, physical, financial, and social strain or burden (Bee, Barnes, & Luker, 2009; Grande et al., 2009; Kuyper & Wester, 1998; Ohman & Soderberg, 2004; Pinquart & Sorensen, 2003; Stajduhar et al., 2010; Wolff et al., 2009). Insufficient preparation of and challenges/demands faced by the caregiver have been linked to indicators of poor quality of life, such as sleep disturbance, poor physical health, and poor financial well-being (Boter, Rinkel, & de Haan, 2004; Brummett et al., 2006; James, Andershed, & Ternestedt, 2009; Northouse, Williams, Given, & McCorkle, 2012; op Reimer, DeHann, Rijnders, Limburg, & van den Bos, 1998; Pinquart & Sorensen, 2003; Roth, Perkins, Wadley, Temple, & Haley, 2009; Thommessen, Wyller, Bautz-Holtzer, & Laake, 2001). Despite poor quality of life indicators, caregivers perceive a value in their role and find some reward in the experience (Vellone, Piras, Talucci, & Cohen, 2008; Wolff et al., 2009); however, caregiver distress continues to override positive quality of life factors, and caregivers experience burnout (Yilmaz, Turan, & Gundogar, 2009). Stress, strain, and burden remain strong influences when considering caregiver outcomes (Boter et al., 2004; Brummett et al., 2006; Northouse et al., 2012; op Reimer et al., 1998; Roth et al., 2009; Thommessen et al., 2001).

Caregiver distress has been examined across the trajectory of caregiving from role acquisition through bereavement (Dumont, Dumont, & Mongeau, 2008; Given et al., 2004; Kurtz, Kurtz, Stommel, Given, & Given, 2002; Nijboer, Tempelaar, Triemstra, van den Bos, & Sanderman, 2001; Northouse, Mood, Templin, Mellon, & George, 2000; Weitzner, Haley, & Chen, 2000; Weitzner, Moody, & McMillan, 1997; Wyatt, Friedman, Given, Given, & Beckrow, 1999). Caregiver distress is defined as negative physical and emotional symptoms experienced by the caregiver (Yilmaz et al., 2009). Despite understanding caregiver distress, interventions to mitigate the challenges/demands faced by caregivers and prevent or minimize caregiver stress, strain, or burden are not well established. Expressions of uncertainty are remarkable indicators of caregiver distress (Given, Given, & Kozachik, 2001; Penrod, Hupcey, Shipley, Loeb, & Baney, 2012). Examining these caregivers’ expressions or linguistic cues is a logical next step in the caregiver inquiry.

Discourses in Caregiving

To date, there has been limited discourse-based research on caregiving. Studies of caregiving discourse first emerged with child/parent dyads or child/child dyads and sought to understand how language shapes children as they assimilate into a culture, family, or friend group (Corman, 2013; Kendall, 2006; Nwokah, 1987). Research on caregiving of adults with chronic conditions and/or at the EOL is minimal. Hepburn et al. (2002) used coded, open-ended interviews of spousal caregivers sharing their experience of caregiving; findings revealed that despite wife caregivers reporting more distress than husband caregivers, the caregivers interviewed were more similar than dissimilar. Hepburn et al. (2002) established four themes in caregiving discourse: (a) the description of the caregiving situation, (b) caregiver self-care, (c) caregiver needs, and (d) lessons learned from caregiving. Paoletti (2002) provided a discursive analysis in caregiving as “giving help” and a sense of duty, expressed by such comments as, “I must do it (provide care) because he is my husband,” or, “I do it (provide care) because she is my mother” (p. 810).

Despite these informative studies, none delves deeply into the meaningful patterns of discourse that run through the narratives or responses to interview questions. Nursing science still lacks understanding of effective next strategies to support caregivers providing EOL care. Understanding linguistic cues and discursive patterns could be a first step for health care practitioners seeking to more deeply and acutely understand the stances, positions, emotions, memories, hopes, fears, and perceptions of caregivers, especially those in late-stage and EOL caregiving situations with terminally ill patients.

Theoretical Framework

This article is based on a complex interrelated set of theoretical/methodological frameworks. The micro-level theoretical frameworks for the analysis of the discourse involve the semiotic systems of reference and indexicality. Reference can be defined as “the relationship between words and the things, ideas, entities, states, and people that such words designate” (Strauss & Feiz, 2014, p. 99)—essentially the network of possible words, labels, and expressions that speakers and writers use to name or refer to the various entities in their discourse (Finch, 2005; Lyons, 1977). Whereas the semiotic system of reference is the more constant, more seemingly objective, and even more finite system of connecting words and meanings to entities and people, indexicality requires context to understand word meaning and paralinguistic meaning. Indexical relationships between words and expressions and the entities or ideas that such expressions are intended to mean are more varied, more variable, and context-dependent (Ochs, 1990, 1996, 2012; Silverstein, 1976, 2003; Silverstein & Urban 1996). Some indexical expressions, such as the personal pronouns “I,” “you,” “she,“ “we,” and demonstrative pronouns “this” and “that,” are also called “shifters” (Jakobson, 1957, 1995) because the entities that they pick out in discourse constantly shift and change depending on the situated context. The broader, macro-level theoretical frameworks that this study sought to expand were Seeking Normal (Penrod, Hupcey, et al., 2012) and EOL Caregiving Trajectory (Penrod, Hupcey, Baney, & Loeb, 2011), both of which were established in the original study through a grounded theory analysis. EOL Caregiving Trajectories, superimposed Seeking Normal on the expected-death trajectory, unexpected-death trajectory, and mixed-death trajectory (Penrod et al., 2011). Little research has been done that focuses specifically on EOL caregiving trajectories. The present study provided a brief introduction to the types of insights a micro-level discourse-based analysis of the larger set of EOL data from the original study could offer to both practitioners and researchers as we strive to better understand the EOL caregiving process.

Method

Design

DA involves the systematic examination of patterned uses of discourse (i.e., language, text, and other surrounding semiotic features of communication) that reveal aspects of the speakers’ or writers’ stances, emotions, feelings, positions, and perceptions. DA was applied to a subset (n = 1; 13 hours of interview) of a larger qualitative secondary data set from Exploring the Formal/Informal Caregiver Interface Across 3 Death Trajectories (NIH/NINR R01NR010127; Penrod et al., 2011). Applying DA to these data further extends the scientific knowledge and allows them to be examined with a new purpose—specifically one that seeks to gain a deeper understanding of the intricate emotions, perceptions, and stances of those engaged in the EOL Caregiving Trajectory, specifically the expected-death. Our over-arching research questions were the following:

  • Research Question 1: How can the principles of DA be applied to develop an analytic framework to further explore the linguistic cues expressing caregiver’s perceptions of self and others?

  • Research Question 2: Which aspects of self and the care recipient are revealed through the discourse of the caregiver?

  • Research Question 2a: How does a caregiver’s perception of self change over time?

  • Research Question 2a: How does a caregiver’s perception of the care recipient change over time?

The research questions being asked were distinct from those in the original study and the subsequent secondary data analyses (McGhan, Loeb, Baney, & Penrod, 2013; Penrod et al., 2011; Penrod, Baney, et al., 2012; Penrod, Hupcey, et al., 2012). The secondary data were de-identified and obtained with the permission of the principal investigator (Penrod). Institutional review board approval was obtained. Written informed consent was obtained at the time of data collection. All identifying information and/or characteristics of the participants were masked to protect the anonymity of the caregiver and care recipient. For the purposes of our discussion, a pseudonym was assigned to the caregiver, Jerry, and the care recipient, Dort. We masked the general details regarding the area where Jerry and Dort reside, in addition to any and all potentially identifying information such as children’s names and ages and the names/affiliations of other individuals involved in their lives that may have emerged in the course of the open-ended interviews. Furthermore, we masked and/or deleted details relating to their local area of residence (e.g., names of schools, shopping malls, grocery stores), in addition to uniquely characteristic manifestations of Dort’s disease or anomalies that could enable identification of the patient, her family, or her place of residence.

Sample

Data were selected and obtained systematically. Over 400 interviews with 46 caregivers were evaluated for quality and completeness. All authors collaborated to determine that it was most appropriate to limit the data set to one trajectory to develop a coding framework for DA. Selection was based on preliminary analysis of the three cases, data richness, and consensus among the authors. The data set was one case (n = 1; 13 interviews) from the expected-death EOL trajectory that provided the richest, most complete data in terms of robustness of oral discourse and elaboration of interview questions. Twelve 1-hour monthly interviews and one closing interview, which used a different interview guide than the monthly interviews provided over 13 hours of discourse between the interviewer and the participant. Transcripts (13) were read and the repertoire of linguistic patterns in Jerry’s discourse that indicated caregiver distress, uncertainty, confidence, and control, influenced by findings from the original study, were identified. A finer-grained analysis of the discourse pointed to additional salient patterns in Jerry’s reference terms (specifically first person and third person). Through collaborative efforts, the expert team from the original study concurred with the preliminary analyses that we proposed. The procedure followed during qualitative data set selection regarding the use of secondary discourse-based analysis is explained in more detail below.

Descriptors of the caregiver and care recipient were purposefully vague or masked to ensure anonymity. Jerry was a male caring for his wife, Dort, who had been diagnosed with amyotrophic lateral sclerosis (ALS; commonly known as Lou Gehrig’s disease), approximately one year before the start of data collection. The couple had been married for over 10 years, and they had children. They lived in a rural location in the Southwestern region of the U.S. Jerry maintained his employment in a blue-collar job throughout Dort’s illness. In addition to Jerry’s care, paid caregivers, neighbors, and the children assisted the caregiver and the care recipient. Dort was middle-aged—From the first interview, it was clear that she required total assistance with her daily activities. With the exception of her husband and children, Dort’s family did not live geographically close to her.

In these interviews, Jerry recounted his daily routines in caring for Dort and expressed his concerns about his role as caregiver and Dort’s overall health, which declined significantly throughout the course of the study. He responded to interview questions in extended, open-ended narratives in which he described the couple’s past and the details of their marriage, his fears and apprehensions about the future, as well as the various medical treatments that Dort had to undergo and the complex care decisions that needed to be made.

Analysis

We conducted an analysis of Jerry’s oral discourse. Analysis was conducted independently by (Kitt-Lewis) and (Strauss). Coded segments were analyzed through multiple lenses of linguistic devices, including grammar, reference, deixis, stance, and indexicality. In preliminary analysis, this coding process was used to develop categories (e.g., self-characterization, characterizing the care recipient, characterization of the disease/illness, expressions of challenges, expressions of resources, and transitions in the state of self, care recipient, disease/illness, challenges, and resources).

Weekly iterative collaborative meetings were held to discuss and verify preliminary analysis, the development of the coding schema, and final analysis. The primary researcher re-coded the data independently using the established coding frame, examining self-characterization and characterizing the care recipient. We analyzed a subsample of the coded segments throughout the coding phase, verified, and refined the coding scheme. For example, referent terms of “we” and “I” were coded as shifts in expressions of “I” as an individual to “we” as an individual were noted, indexing the change in agency during times of uncertainty. That is, even when Jerry was referring to himself and only himself, he would shift from “I” to “we”. Referent terms specific to the care recipient were coded as these shifted from “she” and “her” to “my wife” and “wife’s name.” Categories emerged from coded segments, which were conceptualized into broader themes. Iterative cycles of team meetings facilitated discussion, verification, and validation of categories and broader themes.

The study yielded insights into the interviewee’s perceptions of self as husband/caregiver and his wife as care recipient, as they adapted to the ever-changing EOL caregiving trajectory. Understanding linguistic cues and discursive patterns expressed by the caregiver could be a first step taken by health care practitioners who seek to more deeply and acutely understand the stances, positions, emotions, memories, hopes, fears, and perceptions of caregivers, especially those in late-stage and EOL caregiving.

Guided initially by the original study and framework of Seeking Normal and EOL Caregiving Trajectories, the repertoire of linguistic patterns in Jerry’s discourse that indicated varying degrees of caregiver distress, uncertainty, confidence, and control was identified. Notably, coding included first-person singular/plural reference to self and care recipient as I, we; third-person reference to care recipient as she, her, my wife, wife’s name; modal expressions as be able to, can, could, must, have to; expressions of coping and lifestyle management such as get/have/lose/out of my control, change, adapt, get used to; and markers of epistemic uncertainty, for example, don’t know, figure out, learn as you go—all with a view toward plotting and graphing Jerry’s gradient sense of control, agency, distress, confidence, and uncertainty over the course of the 12-month interview trajectory. A clear decline in Jerry’s stances of confidence, control, and agency was discovered. Over time, these discursive patterns indexed his growing sense of distress and uncertainty, especially as his wife’s condition progressed.

Salient patterns in Jerry’s use of reference terms for self and other, especially the first-person reference “I”/“we” and his use of third-person reference terms to designate his wife, for example, “she/her,” “my wife,” and “Dort,” was noted. These patterns of reference and indexicality then became the focus of the present study because such discursive variability was not predicted or anticipated at the outset and proved to be quite revelatory of Jerry’s stances vis-à-vis himself, Dort, and their relationship.

Results

In this section, we present our findings with regard to the various ways in which Jerry positioned himself as caregiver and his wife as care recipient/mother in the narratives. A framework was established to assess the narratives with a particular focus on the expected-death EOL Caregiving Trajectory, uncertainty, and confidence and control. We begin with an analysis of reference, specifically concerning third-person reference as Jerry referred to Dort throughout the 13 hours of interviews. We then shift to indexicality, which provides an analytic lens to understand this single caregiver in relation to his perception of self and his terminally ill wife. Patterns using indexical pronouns “I”/“me” (first-person singular) and “we”/“us” (first-person plural) serve to index a pattern of Jerry, Jerry and Dort as a couple, and intermeshing self with wife/care recipient, in situations which are actually more skewed as a reference to self (Jerry alone) or care recipient (Dort alone).

Third-Person Reference “She”/“Her”/“Hers” Versus “Dort”/“Dort’s”

Our shift to the analysis of reference terms revealed a pattern whereby Jerry only referred to Dort as “she” or “her” throughout the entire first interview, but as time went on Jerry referred to the care recipient as “my wife” or “Dort.” As is evident in Table 1, Jerry referred to Dort either by name or as “my wife” only 6 times in the first 3 hours of his interviews. Not a single instance (or token) of a specific reference term as her name or as his spouse was evident in the first interview. The second and third interviews contained three instances of “my wife” or “Dort,” respectively. Instead, Jerry systematically and consistently spoke of his wife in very general, objective, and distanced third-person terms, for example, she, her, hers.

Table 1.

Jerry’s Patterns of Reference “She”/“Her” Versus “My Wife” or “Dort.”

Interview Transcript No. of Lines in Transcript Tokens of “My Wife” or “Dort”
6.1 207 0 (0%)
6.2 200 3 (1.5%)
6.3 122 3 (2.4%)
6.4 267 18 (6.74%)
6.5 270 10 (3.7%)
6.6 317 8 (2.52%)
6.7 363 50 (13.77%)
6.8 321 18 (5.6%)
6.9 598 (lines are very short) 8 (1.33%)
6.10 331 10 (3.02%)
6.11 485 48 (9.9%)
6.12 402 70 (17.41%)
6.13 446 9 (2.01%)
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Jerry’s initial narrative provides a clinical and seemingly objective summary and description of his care recipient and of his responsibilities and tasks as a caregiver. While Jerry expressed his love for his wife (“… She’s my number 1 priority. Ain’t nothing else that I care about …” 6.1, line 147; “I live every day to the best of my ability and show her everyday as much as I can that I love her …” 6.2, line 114–115), he framed her here and throughout the entire initial interview as a once viable, strong, and active individual who was a family member, worker, and member of society, now transformed into a patient requiring the most basic of care needs: bathing, toileting, feeding.

  • Excerpts from Interview 6.1—“she”/“her” (Total tokens of “my wife”/“Dort:” 0)

… she was walking with a cane … She gave her driver’s license up. She had to be let go from work because she was a liability.

(lines 24–27)

Then she gets fed. One of the kids will feed her, or I’ll feed her.

(line 53)

She did it all. She did it all … housework, laundry, taking care of the kids, making dinner, she did it all.

(lines 90–93)

She’s my number 1 priority. Ain’t nothing else that I care about …. she’s my number 1 priority.

(lines 147–148)

  • Excerpts from Interview 6.2—“she”/“her” (Total tokens of “my wife”/“Dort:” 3)

That’s [i.e., outside paid caregiver] been a big help to her and it’s also boosted her spirits up and that gives her another interactive with somebody else.

(lines 14–15)

they [i.e., outside paid caregiver(s)] give her a little bit of heck today because she’s not doing her range of motion … very bullheaded. She’s very strong willed.

(lines 17–19)

  • Excerpts from Interview 6.3—“she”/“her” (Total tokens of “my wife”/“Dort:” 3)

I’m able to take my frustration out on a game from a day of work vs. jumping right in and dealing with the kids and dealing with her.

(lines 49–51)

Jerry’s systematic and consistent avoidance of specific reference to his wife in the first 180 minutes of the interviews indexes a psychological/affective distance from his wife and partner, at least in his discourse. However, as indicated in Table 1, in the seventh and 12th months of the interview process there was a notable shift in Jerry’s manner of referring to Dort. That is, the number of tokens of “my wife”/“Dort” increased sharply from 0 in Interview 1, and 3 in Interviews 2 and 3, respectively, to 50 and 70 in Interviews 6.7 and 6.12, respectively. In contrast with his earlier narratives, Jerry’s patterns of referring to Dort replaced the preponderance of pronouns “she,” “her,” and “hers” to a name and a close familial relationship.

By the seventh interview, Dort’s condition had taken a sharp turn for the worse. Jerry’s narratives were now replete with details concerning the dire situation that his family was facing. Throughout Interview 6.7, Jerry talked about the joint EOL decisions that he and Dort had to make, for example, respirator, intubation. Dort emerges in these narratives with her name, as Jerry’s partner, his wife, and the object of his love, support, respect, and care. The medical care decisions are not and never have been unilateral. Jerry’s life was now being framed as one in union with, in collaboration with, his wife whose medical condition was worsening and who was now more visibly approaching the end of her life.

  • Excerpts from Interview 6.7—“my wife”/“Dort” (Total tokens: 50)

Dort’s always made a point, if I got to live on a respirator, I don’t want to live. That’s the way we made it known today. Just hearing those words out of her and even me standing up and saying those words myself, puts it back into perspective. Things ain’t forever, I’ve got to face that. I’m telling you, I don’t know what I’m going to do. I just don’t know.

(lines 136–140)

Knowing Dort …, if she does decide to go that option, I’ll be behind her 100%, but I know my wife. She’s just going to be, my time card’s up, punch it. I just know that…

(lines 136–139)

Of course, I’m just as bullheaded as Dort, so I refused as she has, but yeah, there is probably a point that I could use one.

(lines 158–160)

Yes, I’m off work today because of Dort, it’s a vacation day.

(line 179)

Five months later, by Interview 6.12, Dort’s condition had declined even further. In fact, the interview opens with Jerry explaining that he had just gotten off the phone with the physician—He had discussed a procedure necessary to sustain Dort’s life. Jerry referred to Dort almost exclusively as “my wife.”

  • Excerpts from Interview 6.12—“my wife”/“Dort” (Total tokens: 70)

I mean that’s how I feel about anything anymore with dealing with my wife. I mean I want the best for her no matter what.

(lines 54–55)

… anything that the family has to say, in the end it’s my wife’s and my decision.

(lines 97–98)

Yeah it involves my wife, it involves us making a decision the best and granted we always said what’s meant to be will be, no matter what.

(lines 112–114)

This reference pattern, now isolated in the current study, was not noticed or even considered remarkable in the initial original study, which was designed to investigate broad themes expressed by caregivers providing EOL care.

Indexicality

Also revelatory of Jerry’s perceptions of Dort and himself were his patterns in using indexical pronouns “I”/“me” and “we”/“us.” First-person singular “I” invariably and unambiguously referred to him (unless he was quoting others’ speech). In contrast, first-person plural “we”/“us” variably referred to the family or to Jerry and Dort as equal participants in their marriage. However, throughout Jerry’s interviews, his use of “we”/“us” also served to index a patterned intermeshing of self with wife/care recipient, in situations actually more skewed as a reference to Dort or more skewed as a reference to himself.

In the first excerpts, in Interviews 6.1, 6.9, and 6.12, the pronoun “I” denoted Jerry and only Jerry. Despite the consistency in personal reference term, Jerry’s stance in the three interview excerpts clearly shifted, as noted in the juxtaposition between his expressed sense of control and confidence (6.1) and the lack thereof that had gradually ensued by 6.9 and 6.12. The referent “I” remained the same. His sense of confidence and control had shifted.

  • Excerpts of first-person singular “I” in Jerry’s narratives: referent = Jerry

  • Interview 6.1

… if I stand her up … I have to hold her … I’m able to pick her up … I give her a bath … I take care of that. I do that as much as I can.

(lines 10–14)

I don’t use the bed pans, I actually have the actual potty chair, so I’m able to move her … set her down on the pot …

(lines 176–177)

  • Interview 6.9

I lost control. I mean, to me, I think there’s control being taken care of … There’s … but there’s somebody else taking that control. It’s not me no more.

(lines 362–366)

  • Interview 6.12

You know I don’t know, I don’t know how strong I think I am.

(lines 236–237)

Decisions are hard for me. Like they say everybody hates change. Well I hate change totally.

(lines 374–375)

Jerry’s use of first-person plural “we”/“us” referred in an unmarked way to both Jerry and Dort as a couple, with each member framed by the discourse as participating equally in the events that Jerry narrated.

  • Excerpts of first-person plural “we”/“us:” Referents = Jerry and Dort = equal participants

  • Interview 6.2

We make it a point before we close our eyes every night, even though she’s got this disease, we always made it a point that the last words are I Love You and you get a kiss.

(lines 120–122)

  • Interview 6.8

We stayed at home and enjoyed each other’s company and that’s the way we do things now. That’s us. Why should we let something change us to make us something that we ain’t? …

(lines 302–305)

The activities described above are jointly shared and constructed by both participants.

In contrast, Jerry also used “we”/“us” to index a stance of joint participation within an activity, but in reality the activity was being accomplished more by Jerry than by the couple together, as in the following excerpts from 6.1 and 6.4:

  • Excerpt of first-person plural “we”/“us:” Referents = Jerry and Dort = mostly Jerry

  • Interview 6.1

  1. If we’re taking a shower that night, it usually takes us an hour and a half. If we’re not taking a shower, it usually takes us about an hour … (lines 56–57)

  2. She uses the chair and picks herself up. We lean her against the sink and steady her legs and then we’ll set her down on the pot … (line 78)

In 6.1a, Jerry was the participant who was actually bathing his wife. The activity of shower-taking was not a joint one. He defocused his own agency in giving Dort a shower and instead framed the activity as routine as well as mutually cooperative and mutually participatory. Similarly, in 6.1b, it was Jerry who leaned Dort against the sink and set her down on the commode.

  • Interview 6.4

She caught her chair and we put a bruise on her leg, and I said look, I’m abusing you. She said, no, it happens.

(lines 79–80)

In 6.4, Jerry recounted a particular accident that resulted in Dort’s leg being visibly bruised. By virtue of his use of “we,” Jerry framed the incident as if Dort might have contributed somehow to the outcome. A few lines later, in the same interview, he shifted his stance and said, “I’m hurting her and she’s not saying nothing. I don’t know if I pull the pad under her the right way or if I pinch her …”

Conversely, as noted in the following excerpts, Jerry also used “we”/“us” to index a sense of shared participation when the reference was skewed toward Dort as the primary participant in the narrated actions.

  • Excerpts of first-person plural “we”/“us:” Referents = Jerry and Dort = mostly Dort

  • Interview 6.1

… if we’re going to the bathroom, I don’t use the bed pans, I actually have the actual potty chair, so I’m able to move her.

(lines 76–77)

  • Interview 6.2

I look at other people differently since we’ve come with this disease.

(lines 145–146)

  • Interview 6.11

So we kind of did away with that. I mean the machine is still here but we haven’t used it in probably a good 6 months. We do the nebulizer treatment you know 2 maybe 3 times a day. We’ve never done it more than 3 times a day and it seems like that brings up the mucous pretty good.

(lines 156–159)

In the excerpts above, Jerry used “we” to index a jointly achieved activity or state, but in each case, the issues depicted more realistically designated Dort as the primary participant in the activity: using the bathroom/ coming with this disease/using the equipment.

  • “I” and “we”/“us:” Referent = Jerry

Finally, in excerpt 6.12, Jerry indexed himself as the ultimate decision maker in the final stages of Dort’s care. His discourse in this narrative was predominantly marked by the first-person singular “I” as agent and experiencer during this extremely painful time in the EOL Care Trajectory. Here, Jerry produced a soliloquy-like spate of talk projecting a hypothetical future for himself, and used one key instance of “we,” when clearly and unambiguously, it was he who was the responsible party.

  • Interview 6.12

You know that’s part of my damned if I do, damned if I don’t kind of thing because in the end you know we don’t put her on a respirator when she does go—dad why didn’t you do something—why didn’t you put mom on a machine—why didn’t you help her—she’d still be here. I got to live with that. I got to live with them possibly at being you know cut me out of their life totally I got to be prepared for that. The other side of the coin is you know I got to be prepared for that even going the other way.

I put her on a machine—well if you wouldn’t have put her on the machine she wouldn’t be you know possibly suffering and just laying there being a vegetable. She would be gone and better off. You know can I live with that? You know there’s so many things that I got to feel that I got to be ready to live with no matter how they feel.

(lines 98–108)

The study of both reference and indexicality in the EOL Caregiving Trajectory provides one analytic lens through which to view subtle yet powerful aspects of self and other perception. By isolating a specific but limited set of reference terms used throughout the discourse, we have gained systematic glimpses into the mind of this single caregiver in relation to his perception of self and his terminally ill wife.

Discussion

Discourse-based analysis of qualitative secondary data has great possibilities for advancing nursing and health care research. Reanalyzing a high-quality qualitative data set to answer new research questions or augment findings from the original study can extend understanding of a given phenomenon with limited use of additional resources. International interest has developed around qualitative secondary data sets (Smioski, 2011). This study explored the application of discourse to a qualitative data set and developed a framework through which to analyze these data.

DA is a logical analysis technique for qualitative data sets. DA, the study of language or any significant semiotic event, can offer a unique opportunity to reveal a sense of identity and the relationships between self and others or the flow of events in a given phenomenon of interest (Strauss & Feiz, 2014). DA remains underutilized when addressing caregiver care provision to adult care recipients (J. L. Smith, 2007). This study demonstrated the potential to use DA with qualitative secondary data by establishing a framework and analyzing one case in a larger data set.

This framework provides direction to efforts to apply DA to gain a better understanding of types of linguistic devices used by caregivers to construct agency, express confidence and control throughout the EOL caregiving experience. It was applied to a subset of caregiver data. Researchers agree that a state of confidence and control is a conceptualization of quality of life (Eastwood, Doering, Roper, & Hays, 2008; Kim & Given, 2008). Findings offer initial understanding of the linguistic expressions of an EOL caregiver’s perception of self and others in their role as caregiver. Linguistic cues and expressions examined above represent shifts in confidence and control. Expressions of shifts in confidence and control or uncertainty are remarkable indicators of caregiver distress (Given et al., 2001; Penrod, Hupcey, et al., 2012).

Caregiver distress has been examined across the trajectory of caregiving from role acquisition through bereavement (Given et al., 2004; Kurtz et al., 2002; Nijboer et al., 2001; Northouse et al., 2000; Weitzner et al., 2000; Weitzner et al., 1997; Wyatt et al., 1999). As challenges emerge, caregivers’ sense of confidence and control shift, resulting in caregiver distress (Penrod, Hupcey, et al., 2012). Challenges are conceptualized as the perception of demands on the caregivers.

When resources are available, adequate, and employed to manage the challenges, informal family caregiver distress is minimized and at times even resolved. However, if challenges are not managed or are left unresolved, the levels of distress continue to override positive aspects of informal family caregivers, and quality of life suffers (Yilmaz, Turan, & Gundogar, 2009).

Seeking Normal is a model that frames the ever-changing care demands of informal family caregivers providing EOL care. Informal family caregivers strive to reestablish “a steady state, or a sense of pattern” as care demands continually change (Penrod et al., 2011, p. 10; Penrod, Hupcey, et al., 2012). Key transitions (i.e., the diagnosis of a life-limiting condition, acknowledging treatment will no longer cure the condition, death of the care recipient) challenge caregivers’ perception of achieving a “steady state” and predisposes caregivers to distressed states (Penrod, Hupcey, et al., 2012). Caregivers’ linguistic expressions can be analyzed as they transition through the End-of-Life Caregiving Trajectory and their role as caregiver (Penrod, Hupcey, et al., 2012). The conceptual understanding of EOL caregivers’ linguistic expressions can provide nurses with awareness of the experience of EOL caregivers. However, patterns in perceptions of self and other in a clinical setting may be difficult for practitioners to identify without additional evidence. In fact, simply changing the way in which a condition is labeled can influence the way a patient conceptualizes their health care problem, circumstance, and/or interactions with others (Mosher & Danoff-Burg, 2009; Ogden et al., 2003; Tailor & Ogden, 2009; Tayler & Ogden, 2005). If linguistic cues can be assessed by nurses, future interventions may be devised for dealing with issues related to physical, psychosocial, existential, and financial challenges faced by informal family caregivers. Understanding how caregivers talk about their experiences and their care recipients will assist in tailoring interventions for caregivers who provide care to dying individuals and promote the need for additional analysis of multiple cases.

Limitations of this study include the small sample size. One of the goals of this type of DA-based work is to uncover meaningful preliminary patterns and design frameworks for further study. The linguistic focus of the study was designed to be narrow to enable the discovery of precise and systematic distributions of target forms within this specific data set. An analysis of more descriptive markers of caregiver distress, confidence, and control can serve as a next step to complement findings detailed here. Now that a discourse analytic framework has been developed in full for one of the 46 caregiver interviews from the original study, a more global DA-based analysis can be conducted. Additional analysis can be done on cases in other EOL trajectories (unexpected and mixed) to compare themes that emerge. A more in-depth understanding of the experiences surrounding EOL informal caregivers through times of uncertainty during EOL care will be important contributions to science.

This article has provided an in-depth observation of the discursive patterns and systematic meanings of linguistic cues that are not transparent at the surface level. While we set out to investigate the more surface-level issues of caregiver distress, confidence, and control (e.g., modals, expressions of lifestyle management, and coping), we took the analysis in a more microscopic direction to initially gain a better understanding of linguistic cues emerging in systematic patterns in this data set. Additional studies of these and similar data sets can provide deeper insights into such issues as: What underlies caregiver distress? At which specific times in the EOL Caregiving Trajectory does loss of control manifest itself? For what reasons? What does loss of control actually look like? Future analysis of the discourse in EOL Caregiving Trajectories may focus on elements of time (how the past, present, and future are construed by the interviewees), memory, emotions, expressions of challenge, difficulty, hope, and uncertainty in the other data sets from the original study.

Acknowledgments

The authors wanted to acknowledge and thank the National Centers for Gerontological Nursing Excellence (NCGNE) for their generous support. Erin Kitt-Lewis was awarded a 2012-2014 NCGNE Patricia G. Archbold Scholarship.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Author Biographies

Erin Kitt-Lewis, is nursing instructor of the College Nursing at Penn State University. She was a PhD candidate at the time the research was conducted. Her research interests include formal and informal caregiving, end-of-life care, and geriatric nursing.

Susan Strauss, is an Assoicate Professor of Applied Linguistics at Penn State University. Her research interests include discourse analysis; cognitive linguistics; second language writing; and the interface between discourse, culture, communication, interaction, and grammar.

Janice Penrod, is the Interim Dean of the College of Nursing and Professor of Nursing at Penn State University. Her research interests include qualitative methods, family caregiving, end of life, and geriatric nursing.

Footnotes

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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