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.

Living with Chronic Kidney Disease: Illness Perceptions, Symptoms, Coping, and Quality of Life.

The purpose of this study was to explore how illness perceptions, specifically intrusiveness, impact individuals with chronic kidney disease living with dialysis therapy and kidney transplants, and to determine the relationships among illness perceptions, symptoms, coping, and quality of life (QoL). Forty-two individuals on dialysis and with renal transplants completed an online survey. We found strong relationships between illness intrusiveness, symptom scores, and QoL. Illness intrusiveness was highly disruptive to one's financial situation, health, and work. Intrusiveness was also significantly related to individual symptoms, especially tiredness, feelings of well-being, and sleep. Correlations between intrusiveness and QoL were significant. Emotion-focused coping strategies were also significantly associated with intrusiveness. Health professionals can target illness perceptions, symptom burden, and coping strategies to enhance QoL.

Symptoms, Coping, and Quality of Life of People with Chronic Kidney Disease.

The purpose of this study was to explore how symptoms affect quality of life (QOL) for people living with chronic kidney disease (CKD) and kidney transplants, and to determine the relationship among various coping styles, symptoms, and QOL. An online survey was conducted; 42 people with CKD or a kidney transplant completed all parts of the survey. We found strong significant relationships between symptoms and QOL ratings. Problem-focused coping strategies were the most frequently employed, but there were few significant relationships between symptoms and coping, or between problem focused coping strategies and QOL. Future research should explore whether interventions to address emotion-focused coping strategies impact QOL as well as symptom burden.

Examining the Transition from Child to Adult Care in Chronic Kidney Disease: An Open Exploratory Approach.

For youth with chronic kidney disease (CKD) and their families, shifting from pediatric to adult systems of renal care can be challenging. This study explored the transitional process experienced by youth with CKD and their families, including perceived facilitators and barriers to effective transition. Qualitative interviews were conducted with youth with CKD (n=28) and their parents (n=28). Ambiguity regarding healthcare provider roles within the adult system was frequently reported. Themes reflected parental challenge relinquishing care responsibility, synergistic and divergent expectations between youth and parents, tensions in youth self-care readiness, desired healthcare provider roles in transition preparedness, and system considerations in transition. A "learning stage" was recommended in which youth experienced the adult system while supported by known pediatric team members.

Evaluation of real-time use of electronic patient-reported outcome data by nurses with patients in home dialysis clinics.

BACKGROUND: Internationally, the use of patient-reported outcomes (PROs) is increasing. Electronic PROs (ePROs) offer immediate access of such reports to healthcare providers. The objectives of this study were to assess nurses' perspectives on the usefulness and impact of ePRO administration in home dialysis clinics and assess patient perceptions of satisfaction with nursing care following use of ePROs. METHODS: A concurrent, longitudinal, mixed methods study was conducted over 6 months during home dialysis outpatient clinic visits in two cities. Patients (n = 99) provided ePROs using tablet computers when they visited the clinic on two consecutive occasions approximately 3 months apart. Results were scored, printed, and given to nurses before patient appointments. Patients completed satisfaction items from the Comox Valley Nursing Centre Client questionnaire following their appointments. All clinic nurses (n = 11) participated and they were each interviewed twice, three months and six months after the start of the study. RESULTS: The five themes that emerged from the interviews with the nurses include: enhancing focus of the nurses, directing interdisciplinary follow-up, offering support to patients through the process, interpreting results from the visual display, and integrating into workflow. Scores on the Client Questionnaire suggested that patients believed that they received excellent care (97%), and that the nurses perfectly understood their needs (90.9%). However, their satisfaction with care did not change over time when ePRO data was repeatedly provided to their nurses. CONCLUSIONS: Nurses reported that sharing ePRO data in real-time informed their practice. Although there was no statistically significant change in patient satisfaction scores over time, some patients reported changes and benefits from the use of ePROs. Further research is needed to provide guidance about how ePRO data could enhance person-centered care.

The Relationship of the Spiritual and Religious Dimensions with Quality of Life and Health of Patients with Chronic Kidney Disease: An Integrative Literature Review.

An integrative literature review examining the relationship of the spiritual and religious dimensions in quality of life (QoL) to the health of patients with chronic kidney disease was conducted. Questions included: "What is the relationship of the religious and spiritual dimension with QoL and health of people with chronic kidney disease (CKD)?" and "How does religious and spiritual coping influence the patient with CKD?" From the studies selected for review, it appears patients' spiritual and religious dimensions can positively influence the patients' QoL, increase their survival rate, and improve their health status.

Relocation of remote dwellers living with hemodialysis: a time trade-off survey.

BACKGROUND: There has been little research exploring the experience of dialysis therapy for people living in remote communities. Remote residence location has previously been associated with excess mortality in hemodialysis (HD) patients, suggesting that relocation to a referral center might improve outcomes. It is unknown whether patients view this approach as acceptable. METHODS: We studied 121 remote-dwelling chronic HD patients using the time trade-off method applied to hypothetical scenarios. RESULTS: Participants indicated that they would trade a median of 6 years of life in their current location (including current social supports) (95% CI 2.25-7) for 10 years of life in a referral center without any of their existing social supports (meaning they would be willing to forgo 4 years of life to remain in their current residence location). When current social supports were assumed to continue in both locations, people were only willing to forego a median of 2 years of life (95% CI 1-4) to remain in their current location. Older participants were much less willing to accept relocation than younger participants; the median time trade-off associated with relocation and without social supports was 2 years for participants aged <50 years, 3 years for those aged 50-69.9 years and 9 years for those aged ≥70 years. CONCLUSIONS: Hemodialysis patients currently living remotely were willing to forgo much of their remaining life expectancy rather than relocate-especially among older participants. These findings suggest that decisions about relocation should be accompanied by discussion of anticipated changes in quality of life and life expectancy.

Strategies to use tablet computers for collection of electronic patient-reported outcomes.

BACKGROUND: Mobile devices are increasingly being used for data collection in research. However, many researchers do not have experience in collecting data electronically. Hence, the purpose of this short report was to identify issues that emerged in a study that incorporated electronic capture of patient-reported outcomes in clinical settings, and strategies used to address the issues. FINDINGS: The issues pertaining to electronic patient-reported outcome data collection were captured qualitatively during a study on use of electronic patient-reported outcomes in two home dialysis units. Fifty-six patients completed three surveys on tablet computers, including the Kidney Disease Quality of Life-36, the Edmonton Symptom Assessment Scale, and a satisfaction measure. Issues that arose throughout the research process were recorded during ethics reviews, implementation process, and data collection. Four core issues emerged including logistics of technology, security, institutional and financial support, and electronic design. CONCLUSIONS: Although use of mobile devices for data collection has many benefits, it also poses new challenges for researchers. Advance consideration of possible issues that emerge in the process, and strategies that can help address these issues, may prevent disruption and enhance validity of findings.

Quality of life of older adults in rural southern Brazil.

INTRODUCTION: Ageing in rural communities poses unique challenges that can have an impact on older adults' quality of life (QoL). These limitations can be costly to the healthcare system but there is potential for them to be addressed with a better understanding of factors that affect QoL. The goal of this study was to assess the perceptions of QoL of older adults living in rural areas of southern Brazil and to identify factors associated with QoL in this population. METHODS: A cross-sectional study was conducted with 197 older adults (mean age 69.7±7.5 years). Instruments included the Katz and Lawton activities of daily living scales, QoL instruments and a questionnaire that addressed social, economic, demographic and health variables. Multiple regression analysis was performed, using various domains and overall QoL as dependent variables. RESULTS: Older adults who were more independent, living with a spouse, with higher income and educational levels, fewer morbidities, fewer years of tobacco use, and who did not report falls in the last year were significantly more likely to rate their QoL higher on one or more domains/measures. CONCLUSIONS: Factors associated with QoL of older adults in rural areas are similar to those found in studies conducted in urban areas, but the rural context may influence these variables in unique ways.

Exploring safety and quality in a hemodialysis environment with participatory photographic methods: a restorative approach.

This study used principles and methods of good ecological restoration, including participatory photographic research methods, to explore perceptions of safety and quality in one hemodialysis unit. Using a list of potential safety and quality issues developed during an initial focus group, a practitioner-led photo walkabout was conducted to obtain photographs of the patient care unit and nurses' stories (photo narration) about safety and quality in their environment. Following a process of iterative coding, photos were used to discuss preliminary themes in a photo elicitation focus group with four additional unit staff The major themes identified related to clutter, infection control, unit design, chemicals and air quality, lack of storage space, and health and safety hazards (including wet floors, tripping hazards from hoses, moving furniture/chairs). The visual methods engaged researchers and unit nurses in rich dialogue about safety in this complex environment and provides an ongoing basis for monitoring and enhancing safety.

Attitudes to aging mediate the relationship between older peoples' subjective health and quality of life in 20 countries.

BACKGROUND: With ever-increasing life expectancy globally, it is imperative to build knowledge of how older peoples' views of their own aging, considering their health-related circumstances, affect quality of life for practitioners and policy-makers alike. Based on our literature review, we wanted to determine whether older adults' attitudes toward their own aging would partly mediate the effect of their health satisfaction ratings upon their quality of life. Furthermore, would these attitudes mediate the relationship between health satisfaction and quality of life in the same way when we account for older adults' country of origin, and their age and gender? METHODS: This was a secondary analysis of cross-sectional survey data collected in 20 countries taking part in the 2003 WHOQOL-OLD Field study. The study sample consisted of 4593 adults whom were, on average, 72.10 years of age (range = 60 to 100 years of age); 42.8% were female. The WHOQOL-BREF measured quality of life and health satisfaction. The Attitudes to Aging Questionnaire measured participants' attitudes toward physical change, psychosocial loss, and psychological growth. All items in both questionnaires were measured on a 5-point Likert scale. Questionnaire responses were analyzed using multilevel modeling and path analysis. RESULTS: All three attitudes to aging partly mediated the relationship between health satisfaction and physical, psychological, social, environmental, and global quality of life. These partial mediations manifested in the same way across all 20 country samples, regardless of age or gender. Attitudes toward physical change were the strongest mediator of health satisfaction upon global and domain-specific quality of life, followed by psychosocial loss and psychosocial growth. CONCLUSIONS: Our study is the first cross-cultural study with a large sample to show that quality of life judgements, between 60 to 100 years of age, are a product of older men's and women's perceptions of health-related circumstances, and attitudes toward physical and psychosocial aspects of the aging self. A prospective study of the linkages between older peoples' subjective views of health and attitudes toward the aging self over time using multiple subjective measures of health is warranted. Understanding these linkages may help practitioners and policy makers consider strategies to enhance quality of life.

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.

Comparing the importance of different aspects of quality of life to older adults across diverse cultures.

BACKGROUND: there is limited research examining the relative importance of aspects of quality of life (QOL) to older adults across cultures. OBJECTIVE: to examine the relative importance of 31 internationally agreed areas of QOL to older adults in 22 countries in relation to health status, age and level of economic development. DESIGN: a survey quota sampling design was used to collect cross-cultural data. This study reports a secondary analysis of WHOQOL-OLD pilot study, which was collected simultaneously in 22 centres. SETTINGS: a variety of community, primary, secondary and tertiary health care settings located in Australia, France, Switzerland, England, Scotland, USA, Israel, Spain, Japan, China (mainland and Hong Kong), Turkey, Lithuania, Czech Republic, Hungary, Canada, Norway, Sweden, Denmark, Germany, Brazil and Uruguay. PARTICIPANTS: the total sample contained 7,401 people over 60 years with a mean age of 73.1 years; 57.8% were women and 70.1% considered themselves 'healthy'. RESULTS: there were significant differences in the importance given to various aspects of QOL for people living in medium and high-development countries. Culture explained 15.9% of the variance in the importance ratings of QOL. However, the interaction showed that cultural differences were reduced once health status, gender and age were taken into account. The importance of QOL to age bands in different cultures was not significantly affected by whether or not participants perceived themselves to be healthy. CONCLUSION: understanding the self-reported importance of diverse aspects of QOL for different cultures and for healthy and less healthy people may assist national and international policy makers to decide on priorities for the development of programmes for the ageing population.

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."