Accepted Manuscript Title: Contrasting Stories of Life-threatening Illness: A Narrative Inquiry Author: L. Sheilds A. Molzahn A. Bruce K. Schick Makaroff K. Stadjuhar R. Beuthin S. Shermak PII: DOI: Reference:

S0020-7489(14)00266-1 http://dx.doi.org/doi:10.1016/j.ijnurstu.2014.10.008 NS 2459

To appear in: Received date: Revised date: Accepted date:

11-3-2014 10-10-2014 17-10-2014

Please cite this article as: Sheilds, L., Molzahn, A., Bruce, A., Makaroff, K.S., Stadjuhar, K., Beuthin, R., Shermak, S.,Contrasting Stories of Life-threatening Illness: A Narrative Inquiry, International Journal of Nursing Studies (2014), http://dx.doi.org/10.1016/j.ijnurstu.2014.10.008 This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

Title: Contrasting Stories of Life-threatening Illness: A Narrative Inquiry

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Funding: Canadian Institute of Health Research (84509)

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Sheilds, L., Molzahn, A., Bruce, A., Schick Makaroff, K., Stadjuhar, K., Beuthin, R. & Shermak, S.

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Acknowledgements: Participants who generously shared their stories and time and the community research advisory committee members for their advice and guidance

Corresponding Author:

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250.721.8051 [email protected]

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Dr. Laurene Sheilds, PhD, RN Associate Professor, School of Nursing Associate Dean, Faculty of Human and Social Development Box 1700 STN CSC Victoria, BC V8W2Y2 Canada

Authors:

Dr. Anita Molzahn, Professor and Dean, Faculty of Nursing, University of Alberta Dr. Anne Bruce, Associate Professor, School of Nursing University of Victoria Dr. Kara Schick Makaroff, Post-doctoral Fellow, Faculty of Nursing, University of Alberta Dr. Kelli Stadjuhar, Professor, School of Nursing, University of Victoria Dr. Rosanne Beuthin, Professional Practice Consultant, Island Health Ms. Sheryl Shermak, Doctoral Candidate, Schools of Nursing and Social Work, University of Victoria

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Title: Contrasting Stories of Life-threatening Illness: A Narrative Inquiry

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INJS Submission: Contrasting Stories of Life-threatening Illness: A Narrative Inquiry

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INJS Submission: Contrasting Stories of Life-threatening Illness: A Narrative Inquiry

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Contribution of the Paper:

What is known about this topic?

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 People with life-threatening illness, including cancer, chronic kidney disease (CKD) and HIV, are living longer and healthier lives.  The outcomes of treatment and the experience of living with a life-threatening illness are not well understood.  The promise of treatment and prolonged life as well as the threat of recurrence or progression of the disease are liminal experiences associated with life-threatening illnesses.

What this paper adds?  Participants described living with life-threatening illness as a delicate balance of focusing on living their lives while at the same time having an acute awareness of death and their own mortality.  Stories of life-threatening illness differ dramatically across the three illness groups  Narratives of participants living with cancer, CKD and HIV reflect illness processes that are often variable and complex. Some people describe living in a state of relative well being, while others describe living with increasing burdens of illness. Still others describe experiencing a recurrence, acute event, or a palliative diagnosis. There was continual change, shifting cognitive and emotional responses, and fragility of narratives across all of the illness groups as participants navigated and re-storied their illness experience. 

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People with life-threatening illnesses including cancer, chronic kidney disease (CKD) and HIV now live longer and healthier lives because of advances in science and

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technology. However, there is considerable evidence that the threat to life from these diseases is real (CIHI, 2011). People living with these illnesses describe the challenges of

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living in-between the hope offered by life-prolonging treatments and the realities

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associated with disease progression and possible recurrence (Lynn, 2005; Lynn & Adamson, 2003). The experience of life-threatening illness may extend over years. Lack

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of understanding of these tensions by health care providers may result in misperceptions of needs, miscommunication about prognosis (positive and negative), insensitive

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communication and unnecessary anxiety (Frank, 1991; 2001). Further, these factors have the potential to impact decision-making as well as effective provision of care (Kings

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Fund, 2012). Health care professionals may not know the answers to many of the

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unhelpful (Frank, 2001).

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questions facing people with life-threatening illness but ignoring the questions is clearly

With more effective treatment, the distinction between life-threatening illness and

chronic illness has been obscured (Lynn & Adamson, 2003). The literature on lifethreatening illness has focused on disease-specific research while the literature on chronic disease tends to focus on similarities across illnesses (Corbin, 1998) without acknowledging the impact of perceptions concerning threat to life. Cancer, CKD and HIV are three examples of diseases where the distinction between life-threatening illness and chronicity has blurred. This means that people with life-threatening illness may live for an extended period of time resulting in an unexpected illness experience. Growth of

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the aging population along with greater chronic illness and multi-morbidity further accentuate the need to understand this new phase of illness (PHAC, 2012). In this article, we report findings of a three-year narrative inquiry focused on

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narratives of life-threatening illness. Narrative research provides an opportunity to delve deeply into people’s complex experiences of illness. We describe how people story and

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re-story their lives in the context of illness. The study included three illness groups

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(cancer, CKD and HIV) where the perceptions of threat to life vary. The term re-storying

shift and change over time (Madigan, 2010).

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is used to describe a dynamic, ever-changing process whereby participants’ illness stories

Literature Review

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Life-threatening illness is a term that is often undefined in the literature. For the

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purposes of this study, we use this term to refer to three illnesses that pose a significant

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threat to life, specifically cancer, CKD and HIV. In this section, we provide an overview of the experience of living with each of the three life-threatening illness. We then

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summarize the interrelationships between the illness experiences. Living with cancer

Cancer is perhaps the most identifiable life-threatening illness within western

society. As Frank (1991, p. 1) says, it takes one to the “threshold of life, from which you can see where your life could end”. Extensive research related to the experience of people with cancer includes studies focusing on psychological adjustment (e.g., Lee et al., 2006; Schroevers, Ranchor & Sanderman, 2006), communication (e.g., Thorne, Hislop, Kuo & Armstrong, 2006), decision-making (e.g., Hack, Degner, Watson & Shina, 2006), coping strategies (e.g., Thune-Boyle, Stygall, Keshtgar & Newman, 2006), meaning making

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(e.g., Appleton et al., 2014; Fife, 2005) and quality of life (e.g., Sarna et al., 2002). Schroevers et al. (2006) suggest that cancer survivors are remarkably resilient in the years following recovery. In a longitudinal study, they found that survivors do not differ

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significantly from healthy individuals on measures of depression, anxiety, life

satisfaction, self-esteem, social support and marital satisfaction. Similarly, other studies

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show that cancer survivors fare well on global measures (Kornblith et al., 2003). In

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contrast, others have found that cancer survivors experience distress and uncertainty as a result of their diagnosis (Higginson & Costantini, 2008).

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Living with renal disease

CKD is less likely to be considered a life-threatening illness. Dialysis treatment

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offers hope for continuing longevity, but mortality rates are higher than for other life-

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threatening illnesses (Schell, Da Silva-Gane & Germain, 2014; Sud, Tangri, Levin,

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Pintilie, Levey, & Naimark, 2014). While long-term survival rates have gradually improved, the unadjusted 5 year survival rate for all people on dialysis is 43.2% (CIHI,

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2011). There have been numerous studies about the well-being of people with CKD, and a smaller number describing the qualitative experience of living and making decisions with this life-threatening illness (Morton, Tong, Howard, Snelling & Webster, 2010; Polashek, 2003). In a systematic review, Morton and her colleagues (2010) reported on findings of 18 studies. Four major themes were identified: confronting mortality, lack of choice, gaining knowledge of options, and weighing alternatives. Little research has explored peoples’ perceptions about the threat to life associated with CKD. It seems that there is a culture of not talking about death in dialysis settings, where emphasis is placed on the benefits of technology (Moss, 2003; Authors,

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2012). Typically, concerns regarding threat to life are not raised by participants in qualitative studies of experience with CKD (e.g., Clarkson & Robinson, 2010; Hagren, Pettersen, Severinsson, Lutzen, & Clyne, 2001; Hutchinson, 2005) Rather, the themes

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from these studies point to transitions and the re-evaluation of identity. In our previous work (Authors, 2008; 2012), we reported patients’ concerns regarding facing life-

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threatening illness, and this anxiety is not always discussed with health professionals.

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Living with HIV

The diagnosis and treatment of HIV has changed dramatically over the past ten

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years. People with HIV infection are living longer, largely as a result of HAART, and clinicians have shifted their perspective to HIV as a chronic condition (Bernays, Rhodes,

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& Terzic, 2014). Bernays, Rhondes, and Terzic (2014), in a longitudinal qualitative

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study of 20 people living with HIV in Serbia, reported narratives of coping, hoping and

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distress. Solomon, O’Brien, Wilkins, and Gervais (2014) studied the role of uncertainties in adults living with HIV. They found that the episodic nature of the illness led to

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uncertainty about current care and future needs as well as an inability to plan. Gosselink and Myllykangas (2007), in their study of women with HIV, found inequalities of health and leisure resources. Yet, each woman showed resilience. Ironson and Kremer (2011) found evidence that a variety of coping strategies are effective and that avoidant coping strategies have a detrimental effect for persons of all ages living with HIV. Research shows that many adults with HIV face depression (Jang, Anderson, & Mentes, 2011) and social withdrawal (Vance & Burrage, 2006). Antoni’s (2011) research on stress, coping, and health in HIV/AIDS highlights the need for psychosocial interventions that support optimal physical and mental outcomes. Further, the significant long-term impacts of

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treatment (Vance & Burrage, 2006) and aging have emerged as concerns (Patel & Crane, 2011; Authors, in review). In summary, cancer, CKD and HIV are illnesses that engender anxiety, stress and

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fear of death. Personal narratives often unravel in the face of life-threatening illness as people re-story their lives (Frank 1991, 1995, 2002, 2004). Many people with life-

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threatening illness engage in an on-going process of reflection (Tanyi & Werner, 2008;

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Tomer, Eliason & Wong, 2007). For example, Fife (2005) identified constructed meaning as a key variable in individuals’ responses to cancer and HIV/AIDS.

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Narratives of people experiencing illness are influenced by differing perceptions of life threat (Frank, 1991, 2004). However, there is little understanding of how the threat

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to life is perceived by people across these illnesses. It is important that health care

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providers, who are frequently required to provide care across populations, understand the

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diverse narratives of living with life-threatening illness. Using narrative inquiry, the aim of this study was to describe how people story and re-story illness in the context of

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cancer, CKD and HIV.

Methodology

Narrative Inquiry

Narrative inquiry is effective in illuminating illness experience as it provides a

“window” into understanding how individuals story their experience within the context of their broader lives (Gaydos, 2005; Riessman, 2008; Salkalys, 2003). Rich, thick descriptions of individual stories embedded within social context, place and time are characteristic of narrative research. From a social constructionist perspective, individual stories about life and illness “flow from” cultural narratives and back into them

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(Plummer, 1995). In this way, stories are inscribed and constituted through discursive processes (Lather, 1991; Madigan, 2010). Therefore, narrative inquiry allows researchers to explore multiple narratives and discourses (cultural narratives) that shape how

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individuals story and re-story experience. We used Riessman's (2008) approach to narrative inquiry to guide our study.

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Participants

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Participants were recruited through purposive sampling using community advertising, word of mouth and snowball strategies. Participants self-identified

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themselves as having one of the three diseases under study. The telephone screening process ensured that all participants were at least 12 months post-diagnosis, able to speak

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English, and willing to reflect upon their experiences of living with their illness and its

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impact on their life.

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Data collection occurred through in-depth interviews (approximately 1.5-3.0 hours). All interviews were audio-recorded and transcribed verbatim. Using descriptive,

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exploratory and contrasting questions, the first interview focused on building rapport and understanding the story of the participants. The second and third interviews provided opportunities for deepening understanding, clarification of comments, further questions, and confirmation of what was heard. The fourth interview was used for closure. Field notes were written after each interview, focusing on the researcher's reflections, participants’ nonverbal communication and the context of the interview. A Research Advisory Council consisting of health professionals and community members with direct illness experience was established. They provided guidance to the research team over the course of the study. All aspects of this study were reviewed and

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approved by a University Human Research and Ethics Board. Written informed consent was obtained from all participants prior to the first interview, and consent was verified before subsequent interviews. Participants were told that they could withdraw at any time

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without penalty and that they could stop the interview if they became fatigued. They were assured of confidentiality. Numerical codes were assigned to transcribed data and

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pseudonyms have been used in presentations of data.

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Narrative Analysis

Within narrative inquiry, narrative truths are co-constructed, evolving,

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incomplete, and always situated within context (Riessman, 2008). Using's Riessman's approach to narrative analysis, we organized data by participant. Emphasis was placed on

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understanding each participant’s narrative in depth and over time. We then examined

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data across the illness groups and identified narratives that transcended the three illness

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groups. Analyses of the interviews were conducted inductively. Analytic memos were used to chart relationships between codes, generate case studies and create themes.

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NVivo was used to facilitate analysis and coding of the data. The participants represented a diverse purposive sample reflecting the breadth and

depth of experiences necessary to ensure rigor and credibility. Strategies to maintain rigor of the study included: conducting interviews with participants over time, seeking out additional information in subsequent interviews to add depth and clarify data, writing field notes following each interview, transcribing data verbatim, involving all research team members in analyzing and critically evaluating data and interpretations, and ensuring that interpretations were founded within the data. Data saturation was attained after we interviewed approximately five participants in each group. After that point, no

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new storylines emerged. Further data collection focused on deepening our understanding of the complexity of the illness stories. The requirements for reflexivity described by Clandinin and Connelly (2000) as

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wakefulness and by Riessman (2008) as critical self-awareness were met. Our data

analyses and interpretations were verified with the assistance of the Research Advisory

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Council who noted that the findings resonated with their experiences.

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Findings

Thirty-two participants took part in up to four in-depth interviews over three

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years. A total of 113 interviews were conducted. Eight participants were interviewed less than the four times because of lack of availability, illness or death. Each of these

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participant’s interviews was examined to assess depth and quality of data

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The study included 10 people with a primary diagnosis of cancer (bladder (N=1),

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breast (N=4), colon (N=1), ovarian (N=2), prostate (N=2), 14 people with CKD and 8 people with HIV. Of the 32 participants, 5 people had a dual diagnosis of CKD and

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cancer, 1 person was diagnosed with CKD and HIV, 1 person with HIV and cancer and 1 person with two types of cancer (bladder and prostate). Self-reported multi-morbidity was the norm in the CKD group with all but one person reporting co-morbidities (e.g. diabetes, heart disease and hypertension). Three of the CKD participants were kidney transplant recipients. Four of nine participants in this study were diagnosed with HIV prior to the advent of HAART, and two of those had been diagnosed with AIDS prior to receiving HAART. Participants varied in age (37-83 years old, Mean = 61.2 years), gender (17 men and 14 women), location (urban and rural), time post-diagnosis (Median = 8 years), intensity or invasiveness of treatment, and prognosis (continuous treatment,

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remission, cure, palliative). Five participants died over the course of the study (all from the CKD group). These narratives are included in the data set. Shared narratives for the three illness groups are presented followed by disease

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specific storylines (cancer, CKD and HIV). While the contrasts between the three groups are evident, there were also similarities in participants’ stories of facing life-threatening

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illness. Further, stories shifted over time and were contextualized within the participant’s

Stories of Living with Life-threatening Illness

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life-story.

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All the participants in the study described living with illness as a fine and delicate balance between a focus on living their lives and an awareness of death. Uncertainty

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was a continuous companion. Participants across all disease groups were aware of the

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tenuous nature of life. They tried to focus on living well and ultimately recognized the

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precarious vulnerability of their own mortality. This embodied awareness drew them to focus on the importance of day-to-day life. Relationships with family, friends and

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significant others were commonly identified as the most important elements of living well. Although the awareness of vulnerability and death “faded” for periods of time, there was an undercurrent of uncertainty that continued. As participants navigated life events and changes in their health status, this sustained uncertainty re-emerged and was not necessarily resolvable. Participants recognized that many aspects of living with lifethreatening illness were beyond their control. They were aware that the disease may recur or progress, and that treatment could become less effective or not possible. Through their experience with life-threatening illness, they were also acutely aware that eventually they would die. This awareness was evident even for those whose disease was well managed

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or potentially cured. While all the participants faced life-threatening illnesses, the differences between the three diseases were distinctive. These differences reflect trajectories of disease,

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personal stories and social constructions of illness. Three contrasting stories are: 1) Cancer: Turning Points and Journeying On, 2) CKD: Stealthy Beginnings to Life-

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extending Treatment and e) HIV: A Death Sentence to . . . Hope . . and “Living With”

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(Table 1).

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Table 1. Contrasting Stories of Living with Life-threatening Illness CKD Stealthy Beginning to LifeExtending Treatment

 Shock of diagnosis  Intensiveness of treatment  Living well post-treatment

 Insidious onset  Increasing burdens of illness  Facing a chronic and life

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Cancer Turning Points & Journeying On

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threatening condition

HIV Death Sentence to…Hope…. and “Living With”

 Contracting HIV: Private narratives

 Living by the numbers  Navigating stigma

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Cancer: Turning Points and Journeying On. Participants storied their experiences of cancer in relation to various turning

points in their disease process and treatment. Throughout the illness, these turning points were peppered with numbers. Participants were acutely aware of significant dates and anniversaries. In some instances, numbers were associated with biological markers (e.g., PSA) that provided an indication of the progression of disease. This was even true for participants living ten to twenty years beyond their initial diagnosis. Story-lines of living with cancer included: shock of diagnosis, the intensiveness and invasiveness of treatment, and the challenges of living well post-treatment.

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Shock of diagnosis characterized the experience of life-threatening illness in the cancer group. Participants were able to describe, in exquisite detail, the moment in time and space when they received their diagnosis. For many, perceptions of time and space

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were altered or even stopped. As Diana said,

I remember coming out of his office, looking at the world outside, and thinking, it’s

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not changed at all for anybody else. The sun was still shining, people were walking

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their dogs, people were singing, people were – their life was just going on but my life was just all of a sudden not the same. And I don’t know how I can describe the ‘not

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the same’ but it was, from then on, life was different.

The diagnosis story was characterized by abruptness. A rupture or disjuncture in life took

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place, and then life was defined by “before and after.” The dates were etched in the minds

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of participants and subsequent milestones were often acknowledged, sometimes in

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celebration and sometimes with sadness or depression even many years later. As a result of the “shock” of diagnosis, participants in the cancer group described a sense of

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vulnerability that extended well beyond their diagnosis and treatment phase. The stories of people living with a diagnosis of cancer included rich descriptions

detailing treatment. These precise descriptions related to individual diagnosis, tumor pathology and prognosis. Communication with health providers was directly focused on prognosis and the life-threatening nature of the diagnosis. Yet, participants noted others around them, including family members, often had little understanding of the complexity of the diagnosis or the specificity of treatment. Participants described treatment as intensive, with invasive procedures (e.g., biopsy, surgery, chemotherapy, radiation). The experience was characterized by unexpected “twist and turns” often without warning or

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preparation. In short, they came to expect the unexpected and recognized that no two cancer journeys are the same. The cancer story post-treatment was characterized by a search for normalcy, a

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desire to return to normal. However, the rupture in participants’ stories was life changing as they attempted to define a “new normal” for themselves. They recognized that life

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would never be the same again. For some, there was a sense of relative well-being, while

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for others, life post-treatment included experiences of depression and loss sometimes years after initial diagnosis. Some participants made significant life changes (moved,

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changed jobs, chose volunteer work to assist others) with the deliberate intent of moving beyond treatment. In deepening their narrative, participants described living well with an

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underlying fear and threat of recurrence. As Helena said,

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Live in harmony, yeah, low, smoldering harmony…low and smoldering. It’s there. It’s

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not active, it’s not inactive but it’s - low and smoldering . . . And I wonder . . . if that’s what, what um knocked me over is - because then it becomes harder to, to, do the

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harmony thing. And, and that phrase, low smoldering, is not exactly, it doesn’t give you hope or confidence. When I think of that phrase it’s like something ready to burst into flames.

This time was marked by check-ups, blood work (related to indicators of recurrence), and vigilance in watching for any signs of the return of cancer. While vulnerability was etched into participant’s stories in the cancer group, at the same time, “one goes on with life.” They remained aware of the shock of the original diagnosis and monitored milestones that they had set for themselves (e.g., 5 years). For some, the identity of a survivor was embraced. The language of survivorship was

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uncomfortable for others and was held tentatively, with less confidence than external appearances suggested. This contrasted sharply with the assumptions made by family, friends and the broader community. Ultimately, participants talked about learning to live

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well, to regain the fullness of their lives while being fully aware of their mortality. For two of the participants in the study, this journey included the recurrence of cancer.

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CKD: A Stealthy Beginning to Life-extending Treatment.

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In contrast to the storylines of cancer, the diagnosis of CKD was characterized by a quiet, prolonged beginning, a stealthy onset, without the shock of a death narrative. With

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the onset occurring over extended periods, there was little initial recognition by participants that CKD was a life-threatening illness. Interactions with health care

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professionals also did not reflect the severity of the illness. As Ted said,

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The first year medical student . . . had told me, a couple of times, . . . your creatinine

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levels are off. At the same time I was complaining of an itchy back and he kept telling me, well don’t use any soap on it, and this went on for a year or year and a half.

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The advent of dialysis was a more profound event, but again, the focus of the

participants’ stories was on the potential for dialysis to extend their life rather than on the life-threatening nature of the disease itself. As Theo said, Well, I was diagnosed with this now over 20 years ago I guess. I was diagnosed as

it was high blood pressure and my kidneys were starting to fail. So I’ve known about kidneys since then. It’s taken a long time to get to the point where I’m now on dialysis but now I really don’t look at it as anything depressing as such because up to the moment like I don’t have any symptoms so I lead a very good life and with this home dialysis that we have now it’s even easier.

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The insidious onset of CKD was in direct contrast to the intensive care required in the day-to-day management of the illness. Most participants with CKD had comorbidities (e.g., diabetes, heart disease, liver disease, cancer, HIV) as well as

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challenging symptoms (e.g., cognitive decline, fatigue, lethargy). Other co-morbidities

often pre-dated the diagnosis of CKD but the narrative of CKD dominated their lives and

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reports. For example, Belinda described:

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Well you know when it really hits you that your kidneys are not going to work anymore. See I had . . . I had a ‘bleed-out’ - three big ulcers in my stomach and

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bled at both ends and they lost me . . . but by then it was too late – my kidneys were dying.

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For other participants, the burdens of illness increased following their diagnosis

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with CKD. As Paul said,

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I’ve got a fistula infection, I got it in the hospital and uh nobody was doing their job to monitor what went on with the wound and the whole thing just completely

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crumbled and when I got back here they pulled the dressing off and there was a huge black patch of necrotic tissue that had withered right to the bone so I had a couple of days [where] I got sick cause it was toxic. The day-to-day intensity of managing symptoms and technologies defined the

experience of living with CKD. The need for support from family, partners, friends as well as formal health care providers was essential, visible and tangible. For example, several partners transformed an extra room in their home into a “mini dialysis unit.” Some described their own challenges with “hopes for kidney transplantation.” As Shannon said,

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I had my kidney transplant in February. So that’s a big change as far as the progress of my disease, but it’s been - it’s been really challenging so um the surgery itself went fine, but I had complications . . . I’ve pinned a lot of hopes on getting a new

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kidney, thinking that it would – change my life and I would feel so much better and – cause for years that’s sort of what I’ve been heading towards is the kidney

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transplant. I knew it was on the horizon and sort of had that as the end goal and

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then when I came through it and I feel worse than I did before, even still. So I’ve grappled with I think some grief around that and a lot of disappointment and um

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now I’m still facing uncertainties cause there’s – I need to have more surgery . . . . It’s all – it’s shifted now to a new set of issues wrapped up in that disease.

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Participants in the CKD group experienced their illness as both chronic and life-

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threatening, with great variations in the perceptions of threat to life of CKD. However,

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death was discussed or alluded to by all CKD participants. Many described “close calls,” and all were very aware of the deaths of other patients they knew through the dialysis unit

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or community organizations. This acute awareness of potential death was in sharp contrast to their perception of health care providers’ focus on technological intervention and life-extension through dialysis. Participants understood that CKD treatment was life extending although facing their own mortality was rarely discussed with family or health care providers.

HIV Positive: A Death Sentence to . . . Hope . . . and “Living With” Living with HIV disease was characterized by personal accounts of how they “got HIV,” and how they have been asked to account for “getting HIV” by family, friends and health care providers. For many, the intensely private nature of how they originally

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contracted HIV (e.g., sexual transmission or IV drug use) was held within the stories of their lives and relationships. Unlike people with cancer and CKD, they closely guarded information about their illness. Participants described an acute awareness of the necessity

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for “life-saving medications”. Furthermore, all of the participants described managing a chronic and life-threatening long-term illness. Some lived in a relative state of well-

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being, while others experienced considerable symptoms and side-effects related to

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HAART.

The story-lines for people living with HIV were strongly influenced by the date of

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their original diagnosis and availability of treatment, personal life contexts, as well as the challenges of managing symptoms and side-effects. As with the cancer group,

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participants living with HIV often told of their illness through detailed accounts about

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how they learned of their initial diagnosis and confronted the reality of potential death.

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For those people diagnosed before the advent of HAART, the diagnosis was often a traumatic shock and a “death sentence.” The diagnosis was usually accompanied with

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little hope, high levels of fear/threat, and isolation. Progression to AIDS followed for two of the participants who were diagnosed as palliative prior to access to HAART. Despite the odds, these early survivors went on to live through those years. From the early realities of impending death, through glimmers of hope, to living with a chronic but lifelimiting illness, they transformed their lives. Those diagnosed the longest also had the devastating experience of losing multiple friends and acquaintances to AIDS, while fearing for their own death. As Fraser said, When I talk about [place] being ground zero, you know, neighbors died, people I

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worked with died, friends died. I stopped making a list when it got to be five pages. You know, five pages typewritten. Well that’s about 30 names a page, you know, that’s 150 names.

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Participants living with HIV were acutely aware of “their blood-work” with many describing in detail their current and changing CD4 counts. A few participants “live by

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the numbers”. They chose at times to come off their treatment (to avoid side-effects) and

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then returned to it based on shifts in blood-work. Others in their life often did not understand the importance of numbers. Matt explained:

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Only my sister wants to understand the numbers involved. And I try and tell people this. It’s all about numbers for me. This is how I have to live, by numbers. How my

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immune system works, CD4 count, my viral load. They’re really not interested in

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program and everything.

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that . . . but kind of, you want a bit of acknowledgement for adhering to the drug

This participant went on to describe that while his viral “load” may become essentially

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“negative,” HIV never “goes away” and therefore the threat of the re-emergence of illness was an ever present reality in his life. The on-going stigma related to HIV permeated the transcripts. Participants with

HIV decided whether or not to disclose their HIV status based on their assessments of the responses of others including health care professionals. Many participants kept their HIV status “secret” in at least some aspect of their lives. Thus, hiding their illness also hid the vulnerabilities of their own illness journey. They needed to manage the stigmatizing attitudes of those around them and the concurrent issues of secrecy, fear and disclosure as well as the threat to life. This often

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led to a sense of isolation. Many of the participants in the study mitigated these challenges by participating in advocacy work with HIV non-profit agencies in an attempt to transform, personally and collectively, the stigmatization of people with HIV.

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Through active engagement, participants came to re-story their illness as worthy of health care services, resources and respect.

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Discussion

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Narrative accounts of people’s life-threatening illnesses are not well described in the literature. The findings from this study suggest that, in the context of cancer, CKD

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and HIV, people experience sustained uncertainty. This uncertainty ebbs and flows, reappearing at critical junctures within the context of their illness experience and/or life

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events. There is a delicate balance between focusing on living life and the on-going

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awareness of their own mortality. Uncertainty has been described as an integral

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component of the illness experience (McCormick, 2002; Mishel, 1990). While uncertainty has been conceptualized in relation to adjustment to illness, the sustained

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uncertainty described by participants in this study is more reflective of an awareness of vulnerability and mortality. Uncertainty then, is not so much about an inability to find meaning or categorize illness, but more about recognition from the participants’ perspectives that there is on-going unpredictability in their illness experience. In a related research analysis we have also taken up the phenomena of uncertainty through exploring the construct of liminality (Authors, 2014). Our research shows how stories also differed across the three illness groups. With cancer, turning points and uncertainty were prominent. With CKD, a stealthy beginning to life-extending treatment was evident and with HIV, a perceived death sentence shifted

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to hope and “living with”. Some of the differences can be attributed to disease trajectories and personal life story. However, many of the differences are reflective of the stories told about illness by health care providers and within the broader community. The social

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constructions of the three illnesses are most evident when considering the differences among the three groups and are discussed below. These constructions often caused

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dilemmas for participants.

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Although stories related to the success of cancer treatment are frequently promoted in the media, participants with cancer struggled to make sense of what might be

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seen as a 'cure'. Their own survival was fraught with a reification of the “numbers” associated with dates, anniversaries and prognostic statistics. Their stories were often “at

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odds” with public perceptions of survivorship and cure. As a result, participants reported

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discomfort and perceived that their fears were minimized. The findings from this study

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illuminate the disquieting aspects of living with a cancer diagnosis even years after the initial event. For example, the need for ongoing, up-to-date information about prognosis

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is particularly important as participants encounter significant anniversary dates and other milestones. The success of treatment is often accompanied by the reality of “living beyond” dates suggested by prognosis, resulting in a new, as yet unrecognized, phase of the illness experience. This new information could be used in planning long-term follow up of people with cancer.

The stories of participants living with CKD were marked by a quiet onset and access to life-extending technology. Participants living with CKD described increasing burdens of illness. Although participants talked about “being lucky” to have access to care, many also talked about death during their interviews. While most focus on hope

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(often for transplants), the realities of mortality rates for those facing CKD were troubling for participants. This was evident also to us during the project since five of the fourteen participants with CKD died over the three-year study period. The dominant narrative in

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CKD focuses on dialysis as life-saving treatment. Our participants clearly heard these social constructions of life-extending treatments (Authors, 2012; Davison, 2010).

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However, participants were acutely aware of the threat to life, even if health professionals

concerns about death and dying within this population.

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did not discuss it with them. These findings highlight the need for opportunities to discuss

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Unlike the participants in the CKD group, narratives of death and dying have shifted substantially over the past fifteen years for those living with HIV. With the advent

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of HAARTs, the prognosis for HIV has shifted from a death sentence to…hope…. and

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“living with” this illness. However, unlike those living with cancer and CKD, the realities

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of shame and stigma continue to negatively and profoundly inscribe the experience of living with HIV. In contrast to the descriptions of valor, survivorship and the work

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entailed in undergoing treatment related to cancer and CKD, participants in the HIV group described on-going discrimination and marginalization. They suffered within the social constructions of HIV as a shameful disease. Each participant's story was unique and ever-changing. While we sometimes

believed that enduring storylines were emerging, at subsequent interviews, we found that stories had shifted, and a new story emerged. This re-storying (Madigan, 2010) is not typically described in the health care literature. The limitations of this narrative study include inability to generalize. Narratives are unique and contextualized, and specific to the participants in this study. However, the

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subtleties and complexities of the stories may provide insight into the experience of lifethreatening illness and may resonate for others exploring this topic. Despite the inability to generalize, the study findings suggest some important

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implications for practice and education. Careful listening is important since the stories as well as cognitive perceptions and emotions may change over time. We need to prepare

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health care providers to effectively engage with patients throughout their illness without

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making assumptions based on earlier stories or dominant social narratives.

Practitioners need to consider the prevailing social constructions of each of the illnesses

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described, while recognizing the uniqueness of each individual’s stories. With each illness, perceptions regarding risk of death need to be considered. Timing, fear, dates,

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numbers, and context need to be considered to offer effective care. Further, given the

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persistent stigma associated with HIV, there is a moral imperative for health care

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providers to serve as allies to people living with HIV. There is also a need to create an alternative discourse relating to HIV disease.

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Narrative inquiry offers rich opportunities to further explore how life-threatening

illnesses is experienced differently across diverse disease groups. In addition, studies of people in different phases of their illness trajectory including nearing end-of life would also be of value. Exploration of ways to support people and intervene appropriately could add knowledge and enhance care.

In closing, findings revealed that journeys of illness for participants living with cancer, CKD and HIV are complex and differ across the three illness groups, with some people living in a state of relative well being, others living with increasing burdens of illness and still others experiencing a recurrence, acute event, or being diagnosed as

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palliative. There was sustained uncertainty and a re-crafting of narratives across all of the illness groups as participants navigated and re-storied their illness journey. This longitudinal narrative inquiry illuminated the importance of understanding differences

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between three life-threatening conditions as well as the differences among people in each illness category.

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Contrasting stories of life-threatening illness: a narrative inquiry.

Advances in science and technology have resulted in longer lives for people with life-threatening illnesses. However, little research compares the sto...
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