Holding Secrets While Living With Life-Threatening Illness: Normalizing Patients' Decisions to Reveal or Conceal.

Communicating openly and directly about illness comes easily for some patients, whereas for others fear of disclosure keeps them silent. In this article, we discuss findings about the role of keeping secrets regarding health and illness. These findings were part of a larger project on how people with life-threatening illnesses re-story their lives. A narrative approach drawing on Frank's dialogical narrative analysis and Riesman's inductive approach was used. Interviews were conducted with 32 participants from three populations: chronic kidney disease, HIV/AIDS, and cancer. Findings include case exemplars which suggest keeping secrets is a social practice that acts along continuums of connecting-isolating, protecting-harming, and empowering-imprisoning. Keeping secrets about illness is a normative practice that is negotiated with each encounter. Findings call health-care providers to rethink the role of secrets for patients by considering patient privilege, a person's right to take the lead in revealing or concealing their health and illness experience.

Living with dying: A narrative inquiry of people with chronic kidney disease and their family members.

AIMS: To describe how people diagnosed with chronic kidney disease and their family members describe uncertainty related to impending death. BACKGROUND: There has been little research about the experiences of people with chronic kidney disease and their family members as they near the end-of-life. We need to understand these experiences to give holistic person-centred care. DESIGN: A narrative enquiry was undertaken using a social constructionist perspective. METHODS: Data were collected in two in-depth interviews, approximately 3-4 months apart, followed by a telephone follow-up 2-3 months later. RESULTS: Eleven people with advanced chronic kidney disease and nine family members/significant others participated. For both participants in the dyad, a number of key themes/storylines were identified. These included recognition that: @life has a boundary, living on the edge, I'm not afraid to die but… and remembering loss and death experiences@. CONCLUSIONS: This enquiry illuminated four key storylines of about death and dying with advanced chronic kidney disease for people with the illness and their family members. Discussion about past experiences with illness, loss, death, and dying can give an entry for discussion about end-of-life. The person with illness and family members often held very similar perceptions and desires, but healthcare professionals' contributions to understanding of the experience were not mentioned. Implications for clinicians include attending to peoples' awareness of death as a distinct opportunity, listening attentively and posing questions that genuinely invite concerns and wishes about end-of-life and living well.

Storylines of aging with HIV: shifts toward sense making.

Aging with HIV is a new phenomenon. It is expected that by 2015, approximately half of adults living with HIV in the United States will be age 50 and older. We used narrative inquiry to explore how older adults with HIV storied their experience and made sense of aging. Over a 3.5-year period, we interviewed 5 older adults living with HIV for 13 to 24 years. In analyzing the coconstructed stories, we identify six storylines that enhance understanding and guide listening: embodiment of the illness, sense making, death and loss, secrets and stigma, identity, and seeking connection. We theorize that the degree to which one reconciles each storyline influences how well one lives with illness. We share a storied exemplar to illustrate these storylines in one participant's experience of aging with HIV. These findings emphasize how vital is telling one's illness story, because sense making happens in the telling.

Stories of African HIV+ Women Living in Poverty.

In this study researchers explored the daily experiences of HIV+ women living in Kibera, Kenya. Using a convergence of narrative, feminist, and indigenous approaches, we engaged in individual in-depth interviews with nine HIV+ women. Interpretive storylines include the following: Being an African woman; If I sit there, that 10 bob won't come; If I die, who will take care of my children?; I am stigma; They just come to you; Being up, feeling down, and stress-up; and Living with HIV is a challenge. We present our findings to provide evidence-based insights to better support HIV+ women living in poverty.

Shadows and Sunshine: What Metaphors Reveal about Aging with HIV.

Using narrative inquiry, the researchers interviewed 5 older adults on 5 occasions over a period of 3.5 years about their experiences of aging with HIV. The participants' stories were analyzed for metaphors. Individual metaphors reveal a complex, unique struggle: living between tensions of uncertainty and hope, facing death and living in the moment, and suffering hurt amidst the joys of evolving identity. The tensions are fluid, although time and life experience facilitate a shift towards reconciliation. An overarching metaphor across this group of survivors is shadows and sunshine: to survive and live in a fragile state, balancing multiple shadows such as stigma and side effects with joyful experiences of support and belonging. The findings suggest that when nurses invite stories of life experience and listen for language used, they build compassion and gain understanding of what support is most needed to honour the personhood of older adults who are HIV-positive.

Utilisant une approche axée sur l'enquête narrative, les chercheuses ont réalisé des entrevues auprès de cinq aînés, à cinq reprises, sur une période de 3,5 années. Les entrevues portaient sur leurs expériences en tant que personnes vieillissantes vivant avec le VIH. Les récits des participants ont fait l'objet d'une analyse en vue de relever les métaphores. Les métaphores individuelles révélaient une lutte complexe et unique issue de tensions provoquées par le fait de vivre de l'in certitude et de l'espoir, de côtoyer la mort, de vivre dans l'instant présent et d'éprouver une souffrance parmi les joies découlant d'une identité en évolution. Les tensions sont fluides, bien que le temps et le vécu facilitent un virage vers une réconciliation. Une métaphore commune présente dans le groupe de survivants était celle de l'ombre et de la lumière, qui traduisait l'expérience de survivre et de vivre dans un état de fragilité, de composer avec plusieurs côtés sombres, comme le stigmate et les effets secondaires, et de vivre des expériences heureuses, comme le soutien et le sentiment d'appartenance. Les résultats de l'étude indiquent que les infirmières qui invitent les patients à partager leur vécu et qui portent attention au langage utilisé acquièrent un sentiment de compassion et comprennent davantage le type de soutien qu'elles doivent dispenser pour honorer l'identité individuelle des aînés séropositifs.

Stories of chronic kidney disease: listening for the unsayable.

AIMS: To explore individuals' stories of chronic kidney disease, particularly those aspects of experience that are difficult to discuss using language (i.e. unsayable). BACKGROUND: Chronic kidney disease is continuous, but it is also life-threatening and sometimes people ask difficult questions about life and death that can be challenging and for some, impossible to discuss. These 'unsayables' are the focus of this article. The unsayable may reside both within and beyond language. Careful analysis of narratives of illness for sayable and unsayable aspects of the experience can help illuminate new areas of concern for people with chronic kidney disease. DESIGN: Narrative inquiry, located in a social constructionist framework, guided this study. METHODS: Secondary data analysis was conducted with 46 in-depth interviews (collected between 2008-2011) with 14 people living with chronic kidney disease. FINDINGS: Through narrative thematic analysis, we identify that the unsayable includes the following five themes: living with death, embodied experiences that were difficult to language, that which was unthinkable, unknowable mystery and that which was untold/unheard. Whereas the first four themes attend to that which is unsayable for people living with chronic kidney disease, the last theme acknowledges that which is unsayable to people living with chronic kidney disease. CONCLUSION: Not all experiences of illness can be explicitly articulated in language. Listening for both the sayable and unsayable aspects of life with chronic and life-threatening illness is an important nursing role.

Lessons learned about art-based approaches for disseminating knowledge.

AIM: To present a case example of using an arts-based approach and the development of an art exhibit to disseminate research findings from a narrative research study. BACKGROUND: Once a study has been completed, the final step of dissemination of findings is crucial. In this paper, we explore the benefits of bringing nursing research into public spaces using an arts-based approach. DATA SOURCES: Findings from a qualitative narrative study exploring experiences of living with life-threatening illnesses. REVIEW METHODS: Semi-structured in-depth interviews were conducted with 32 participants living with cancer, chronic renal disease, or HIV/AIDS. Participants were invited to share a symbol representing their experience of living with life-threatening illness and the meaning it held for them. DISCUSSION: The exhibit conveyed experiences of how people story and re-story their lives when living with chronic kidney disease, cancer or HIV. Photographic images of symbolic representations of study participants' experiences and poetic narratives from their stories were exhibited in a public art gallery. The theoretical underpinning of arts-based approaches and the lessons learned in creating an art exhibit from research findings are explored. CONCLUSION: Creative art forms for research and disseminating knowledge offer new ways of understanding and knowing that are under-used in nursing. IMPLICATIONS FOR PRACTICE/RESEARCH: Arts-based approaches make visible patients' experiences that are often left unarticulated or hidden. Creative dissemination approaches such as art exhibits can promote insight and new ways of knowing that communicate nursing research to both public and professional audiences.

Symbolic representations of living with chronic kidney disease.

Visual or aesthetic data can contribute to understanding experiences that may not be able to be fully understood through spoken or written words. This article describes stories of symbols that represent the experiences of individuals living with chronic kidney disease. Symbols included both objects (i.e., a family photograph) and intangible representations (i.e., apiece of music) that were chosen because they innately held meaning to the person. Descriptive themes of the symbols included hopes and inspirations, reflections on "who I am," and confrontations of illness. Participants' expressions through symbols were further described through the use of stories of memories, emotions, and poetic devices. We contend that symbols convey aspects of experience that cannot easily be translated into oral expression.

People living with serious illness: stories of spirituality.

AIMS AND OBJECTIVES: To examine stories of spirituality in people living with serious illness. BACKGROUND: Although knowledge about the experience of people with various chronic illnesses is growing, there is little known about peoples' beliefs and perspectives relating to spirituality where there is a diagnosis of a serious chronic and life-limiting illness. DESIGN OF THE STUDY: A social constructionist approach to narrative inquiry was used. METHODS: In-depth narrative interviews were conducted on one occasion with 32 participants. This included 10 people with cancer, 14 people with end stage renal disease (ESRD) and eight people with HIV/AIDS. They ranged in age from 37-83 and included 18 men and 14 women. RESULTS: The themes were reflecting on spiritual religious and personal beliefs, crafting beliefs for their own lives, finding meaning and transcending beyond words. Participants melded various belief systems to fit their own lives. They also looked to find meaning in their illness experience and described what gave life meaning. For some aspects of these belief systems, participants could not or would not express themselves verbally, and it seemed that aspects of their experience were beyond language. CONCLUSIONS: The stories revealed considerable depth relating to perspectives on life, illness and existential questions, but many participants were not comfortable with the term 'spirituality'. RELEVANCE TO CLINICAL PRACTICE: Nurses must remain open to learning about belief systems of each individual in their care, regardless of that individual's declared religious affiliation or declaration of no religious affiliation, given that personal beliefs and practices do not always fit into specific categories.

Perceptions regarding death and dying of individuals with chronic kidney disease.

This research explores perceptions regarding death and dying among people with chronic kidney disease. The methodology for the study was narrative inquiry informed by social constructivism. In-depth narrative interviews were conducted on two occasions with 14 participants. The participants included 10 men and 4 women (mean age of 66) who were treated in a mid-size Canadian city. Four themes relating to death and dying emerged from the data: awareness of death as a consequence of kidney failure, close calls, contemplation of suicide and/or withdrawal from dialysis, and preparing for death while living life. From the findings, it appeared that participants were very aware of the risk of dying from their illness, experienced serious health crises, and planned for their deaths. They were comfortable in discussing death and dying and acknowledged withdrawal from dialysis as an option.

Ten minutes to midnight: a narrative inquiry of people living with dying with advanced copd and their family members.

Purpose: To explore how people with end stage chronic obstructive pulmonary disease and their family members describe living in the face of impending death.Methods: A narrative inquiry was undertaken using a social constructionist perspective. Data were collected in 2017-18 in two in-depth interviews, lasting 90 to 120 minutes approximately 3-4 months apart, with a telephone follow-up 2-3 months later. Thematic analysis was conducted including analysis within and across participants.Results: Sixteen people with advanced chronic obstructive pulmonary disease and seven family members participated. For both people with the disease and family members, six key themes/storylines emerged including missing life, being vigilant, hope and realism, avoiding death talk, the scary dying process, and need to prepare.Conclusion: This study highlighted six key storylines about death and dying with advanced chronic obstructive pulmonary disease for people with the illness and their family members. The participants with the illness and their family members held similar perceptions about end of life. More supports are needed for people with advanced chronic obstructive pulmonary disease and their family members in living with their illness while ensuring that they experience a "good death."

Life and priorities before death: A narrative inquiry of uncertainty and end of life in people with heart failure and their family members.

BACKGROUND: Most patients with advanced heart failure are ill-prepared and poorly supported during the end of life. To date, research has focused primarily on generalized patient accounts of the management or self-care phase of the syndrome. Little research has examined the end of life in depth or from the perspectives of family members. AIMS: The purpose of this study is to describe how people diagnosed with heart failure and their family members describe uncertainty related to impending death. METHODS AND RESULTS: A narrative inquiry was undertaken using a social constructionist perspective. Twenty participants took part in over 60 interviews: 12 participants with heart failure (eight male and four female; mean = 67.3 years) and eight family members (mean = 61.6 years) engaged in two in-depth interviews, approximately 3-4 months apart, followed by a telephone follow-up 2-3 months later. Six key themes/storylines were identified. These included: prognosis messages received from physicians; whenever I die, I die; loss isn't new to me but … ; carrying on amidst the fragility of life; ultimately living not knowing; and the need to prepare. CONCLUSION: The six key storylines of death and dying with advanced heart failure were consistent for both patients and family members. There was a desire for better communication with physicians. Many participants were critical of how the prognosis of advanced heart failure was communicated to them, even if they anticipated the news. Participants wanted frank, open conversations with their healthcare providers that both acknowledged that they were at end of life but did not remove all hope.

Qualitative Data Management and Analysis within a Data Repository.

Data repositories can support secure data management for multi-institutional and geographically dispersed research teams. Primarily designed to provide secure access, storage, and sharing of quantitative data, limited focus has been given to the unique considerations of data repositories for qualitative research. We share our experiences of using a data repository in a large qualitative nursing research study. Over a 27-month period, data collected by this 15-member team from 83 participants included photos, audio recordings and transcripts of interviews, and field notes. The data repository supported the secure collection, storage, and management of over 1,800 files with data. However, challenges were introduced during analysis that required negotiations about the structure and processes of the data repository. We discuss strengths and limitations of data repositories, and introduce practical strategies for developing a data management plan for qualitative research, which is supported through a data repository.

Challenges and opportunities in graduate nursing education by distributed learning in Canada and Brazil.

In this paper, the authors share their experience related to graduate nursing programs offered by distributed learning (DL) in Canada and Brazil. Although degrees offered by DL are often the subject of criticism, the authors' experience has been that learning outcomes have been very good. Nevertheless, a number of challenges and opportunities have been encountered including those associated with flexibility of the program, delivering practice courses at a distance, facilitating interaction, faculty workload and preparation and student support, Newer technologies that may assist in this effort are identified. Despite the challenges encountered, students rate the program highly and ongoing efforts are underway to ensure excellence of such flexible innovative graduate programs in nursing. The authors argue that despite the challenges, DL programs offer high quality graduate education that meets the needs of many nurses.

Learning from stories of people with chronic kidney disease.

The purpose of this study was to explore how people with chronic kidney disease (CKD) describe/story experiences of liminality associated with CKD and its treatment. This narrative inquiry was undertaken using secondary data. The people relating the stories described a number of liminal spaces, including living/not living independence/dependence, restrictions/freedom, normal/not normal, worse off/better off and alone/connected. Awareness of the liminal spaces can help nurses provide care that addresses the complexity of CKD.

Why is it so hard to talk about spirituality?

Although there is recognition of the importance of spirituality in the nursing literature and in nursing theory, many nurses find it difficult to talk about this sensitive area with people for whom they provide care. In this article, the authors discuss why spirituality is integral to nursing care and explore why nurses don't talk about spiritual concerns with their clients. The authors examine the meaning of spirituality and the factors that contribute to the reluctance of nurses to discuss spirituality with others: not having the right words, lack of education, a view that spiritual care is someone else's responsibility, influences of secularism and diversity in society, and the current health-care context. Openness to learning about the spiritual beliefs of individuals and attending to their nursing needs in a holistic way will enhance nursing care.

Narrative Knowing: A Learning Strategy for Understanding the Role of Stories in Nursing Practice.

BACKGROUND: Stories are vital to understanding and creating meaning related to illness experiences. METHOD: An innovative learning strategy was designed and implemented to highlight the role of narrative and empirical ways of knowing when developing collaborative relationships with patients and their families. Students engaged in developing nursing assessments, as well as in the creative process of writing patient stories, to improve their understanding of human experiences of illness. RESULTS: Through comparing empirical and narrative data, students increased their awareness of different ways of knowing and the importance of stories to the construction of the meaning of illness. CONCLUSION: Students' reflective feedback indicated a shift in perception toward the inclusion of storied knowing within relational nursing practice. [J Nurs Educ. 2016;55(12):711-714.].

Stories of liminality: living with life-threatening illness.

PURPOSE: The purpose of the study is to examine liminal experiences of living with the uncertainty of life-threatening illness. Increasing numbers of people with life-threatening illness live in-between the promise of treatment and the threat of recurrence or progression of disease, and yet this experience is not well understood. DESIGN: A narrative inquiry methodology within a constructionist frame was used. METHOD: Semistructured in-depth interviews were conducted with 32 participants from three populations of interest: (a) 10 people living with cancer, (b) 13 people with chronic renal disease, and (c) 9 people living with HIV/AIDS. FINDINGS: An overarching theme of "pervasive liminality" and four narratives are identified: storying into fear(lessness), being alive but not living; knowing and not knowing, and the (in)visibility of disease. CONCLUSIONS: Over time, living with a life-threatening illness produces complex and paradoxical experiences that do not easily fit within familiar categories of experience. Findings highlight pervasive liminal experiences as in-between narratives that are neither problematic nor need to be resolved, and endure over time.

Language and the (im)possibilities of articulating spirituality.

Despite growing interest in spiritual matters throughout society, definitions and descriptions of spirituality seem incomplete or otherwise unsatisfactory. In this article, the authors consider the possibility that such incompleteness is perhaps necessary and welcomed in addressing spirituality. In particular, they investigate the challenges of using metaphor and metonymic approaches to "languaging" spirituality. By exploring these figures of speech they hope to diversify how nurses articulate deeply personal and perhaps enigmatic human phenomena such as spirituality. Metaphoric language uses everyday structures to help make sense of complex, emotional, and abstract experience. Whereas metaphor creates substitutive relationships between things and provides insights into conceptualizing spirituality, metonymy and metonymic writing establish relationships of contiguity. Whereas metaphor functions to represent and facilitates understanding and feelings about spirituality, metonymy disrupts while opening possibilities of moving beyond binary thinking. Attending to language and its various ontological assumptions opens diverse and potentially more inclusive possibilities.