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.

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.

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."

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.

Quality of life associated with adult day centers.

The purpose of this study was to describe the quality of life (QOL) of current adult day center (ADC) clients and their family caregivers in one region of Canada. Semi-structured interviews were conducted with 10 ADC clients and 10 caregivers. Data analysis used a modified constant comparative method. The major categories relating to QOL that emerged in the analysis included Physical Health and Well-Being, Social Networks/Relationships, Aging in Place, Safety, Respite, Activation, Respect and Inclusion, and Adequate Health Care Services. These themes are consistent with those of other studies of QOL of older adults. It was evident that ADCs played an important role in maintaining and improving the QOL of both the older adults and caregivers participating in this study.

Quality of life in contemporary nursing theory: a concept analysis.

A critical appraisal of the concept, quality of life, as used in nursing theories, is presented in a historically situated context. This approach to concept analysis was selected to illuminate the subjective, contextual, and fluid nature of the concept. Based on this review, quality of life is defined as an intangible, subjective perception of one's lived experience. From a review of Peplau's, Rogers', Leininger's, King's, and Parse's conceptualizations of quality of life, it is concluded that it may be viable to replace health with quality of life as a metaparadigm concept for nursing.

Quality of life of older adults in Canada and Norway: examining the Iowa model.

In this study, Glick and Tripp-Reimer's (1996) Iowa model for gerontological nursing serves as a guiding framework for a descriptive exploratory study of quality of life (QOL) of older adults. Using secondary data, the authors explored whether the effects of health appraisal, morbidities, social support transitions (SST), and the environment on QOL would be partly mediated by cognitive developmental transitions (CDT). Data sets were available from studies with random samples of community-dwelling older adults from Canada (n = 202) and Norway (n = 490). The partly and fully mediated effects found suggest positive CDT in older age might be significantly enhanced by the presence of intimate ties, positive perceptions of one's health limitations, and residence in a healthy, safe, and resource-rich physical environment. These findings represent a novel attempt at testing complex linkages between aspects of elder, environment, and nursing concepts within the Iowa model warranting further research.

Managing chronic kidney disease in a nurse-run, physician-monitored clinic: the CanPREVENT experience.

The purpose of this study was to examine the nature of the care provided to people with chronic kidney disease within a larger study of nurse-run, physician-monitored clinics, as well as how patients, nurses, and nephrologists described their experience with the clinics. Interviews were conducted with 7 nurses, 5 physicians, and 23 patients. Data collection also entailed review of 40 randomly selected charts. Identified themes related to characteristics of the nurse, patient-centred care, health promotion, teaching, dealing with problems, time, protocols, consultation and referrals, clinic logistics, paperwork/documentation, and nurse-physician collaboration. Challenges and outcomes were also described as part of the experience with the clinic. Patients were actively engaged in self-management and reported high levels of satisfaction with care as well as improvements in selected outcomes. Overall, the perceptions of this model of care were positive and the approach warrants further exploration.

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.

A Survey of Information Needs and Preferences of Patients With Head and Neck Cancer.

OBJECTIVES: To determine the information needs and preferences of patients who had human papillomavirus-associated head and neck cancer (HNC) and who were aged 18-65 years in the post-treatment phase of recovery. SAMPLE & SETTING: 205 patients who completed treatment for HNC at two large cancer centers in Western Canada. METHODS & VARIABLES: A self-administered survey was completed in paper or online format. Participants were asked about information considered most important, sources of information used during recovery, and sources considered most helpful. RESULTS: Participants wanted information on signs and symptoms of recurrence, cure rates, post-treatment rehabilitation, treatment and recovery time frames, and financial assistance. They identified healthcare providers as the most frequently used and helpful source of information, but also reported that the Internet was useful and that an online information resource would be helpful during recovery. IMPLICATIONS FOR NURSING: Nurses can provide more personalized information for survivors of HNC by contributing to the development of reliable Internet-based resources. The developers of these resources could also consider creating ways to directly link healthcare providers and survivors of HNC who are experiencing problems stemming from diagnosis and treatment.

Spirituality in later life: effect on quality of life.

The purpose of this study was to explore the effects of spirituality on quality of life (QOL) in older adults when age, gender, social support, and health status are controlled. A secondary analysis of data was conducted using results from a cross-sectional survey of older adults. Data were available from a convenience sample of 426 people living in British Columbia, Canada, who volunteered to complete the questionnaire. Instruments included the WHOQOL-100 and a demographic data sheet. The results show spirituality was not a significant factor contributing to QOL in this sample, and that the strongest predictors of overall QOL were social support and health satisfaction. Given difficulties in measuring spirituality and homogeneity of the sample, further research is warranted.

Sexuality and quality of life.

The purpose of this research was to explore the relationships between sexual activity and intimacy and quality of life (QOL) of older adults. The authors' research question was "To what extent do age, gender, marital status, health status, education, satisfaction with personal relationships, sexual activity, and satisfaction with intimacy explain older adults' ratings of QOL?" A secondary analysis was conducted using results from a cross-sectional survey. Data were available from a convenience sample of 426 individuals living in British Columbia, Canada, who volunteered to complete the questionnaire. Instruments included the WHOQOL-100, WHOQOL-OLD, and a demographic data sheet. It was found that the strongest contributors to the variance of overall QOL were satisfaction with personal relationships, followed by health status andsexual activity. Age, gender, marital status, and education were not significant. The implications for gerontological nurses include the need to support personal relationships for older adults, to encourage health promotion, and to ensure sexuality is discussed with older adults.