Neuroticism as a moderator of symptom-related distress and depression in 4 noncancer end-of-life populations.

OBJECTIVES: Neuroticism is a significant predictor of adverse psychological outcomes in patients with cancer. Less is known about how this relationship manifests in those with noncancer illness at the end-of-life (EOL). The objective of this study was to examine the impact of neuroticism as a moderator of physical symptoms and development of depression in patients with amyotrophic lateral sclerosis (ALS), chronic obstructive pulmonary disease (COPD), end-stage renal disease (ESRD), and frailty in the last 6 months of life. METHODS: We met this objective using secondary data collected in the Dignity and Distress across End-of-Life Populations study. The data included N = 404 patients with ALS (N = 101), COPD (N = 100), ESRD (N = 101), and frailty (N = 102) in the estimated last 6 months of life, with a range of illness-related symptoms, assessed longitudinally at 2 time points. We examined neuroticism as a moderator of illness-related symptoms at Time 1 (∼6 months before death) and depression at Time 2 (∼3 months before death) using ordinary least squares regression. RESULTS: Results revealed that neuroticism significantly moderated the relationship between the following symptoms and depression measured 3 months later: drowsiness, fatigue, shortness of breath, wellbeing (ALS); drowsiness, trouble sleeping, will to live, activity (COPD); constipation (ESRD); and weakness and will to live (frailty). SIGNIFICANCE OF RESULTS: These findings suggest that neuroticism represents a vulnerability factor that either attenuates or amplifies the relationship of specific illness and depressive symptoms in these noncancer illness groups at the EOL. Identifying those high in neuroticism may provide insight into patient populations that require special care at the EOL.

Developing a question prompt list for family caregivers concerning the progression and palliative care needs of nursing home residents living with dementia.

Objective: Communication around a palliative approach to dementia care often is problematic or occurs infrequently in nursing homes (NH). Question prompt lists (QPLs), are evidence-based lists designed to improve communication by facilitating discussions within a specific population. This study aimed to develop a QPL concerning the progression and palliative care needs of residents living with dementia. Methods: A mixed-methods design in 2 phases. In phase 1, potential questions for inclusion in the QPL were identified using interviews with NH care providers, palliative care clinicians and family caregivers. An international group of experts reviewed the QPL. In phase 2, NH care providers and family caregivers reviewed the QPL assessing the clarity, sensitivity, importance, and relevance of each item. Results: From 127 initial questions, 30 questions were included in the first draft of the QPL. After review by experts, including family caregivers, the QPL was finalized with 38 questions covering eight content areas. Conclusion: Our study has developed a QPL for persons living with dementia in NHs and their caregivers to initiate conversations to clarify questions they may have regarding the progression of dementia, end of life care, and the NH environment. Further work is needed to evaluate its effectiveness and determine optimal use in clinical practice. Innovation: This unique QPL is anticipated to facilitate discussions around dementia care, including self-care for family caregivers.

Toward a holistic understanding of cancer cachexia: Application of the human response to illness model.

Cachexia is a commonly presenting multidimensional syndrome in individuals living with advanced cancer. Given its prevalence of between 50% and 80%, nurses are going to encounter individuals manifesting ongoing loss of skeletal muscle mass (with or without loss of fat mass) that can be partially but not entirely reversed by conventional nutritional support. Thus nurses require a comprehensive understanding of this complex clinical problem. Research suggests, however, that nurses receive minimal education about cachexia or its management. Limited understanding undermines the ability to confidently care for patients with cachexia and their families, thereby hampering effective practice. The human response to illness model provides nurses with an organizing framework to guide and make sense of their assessments in clinical practice when caring for patients with cancer cachexia and provides direction for appropriate intervention. This article illustrates the integration of the human response to illness model to clinical practice, thereby assisting nurses to develop a comprehensive understanding of the physiological, pathophysiological, behavioral, and experiential facets of cachexia in advanced cancer patients. Contemporary areas of further interest and research will be presented.

More than just a task: intimate care delivery in the nursing home.

Purpose: Intimate care procedures, such as bathing and toileting, are often regarded as simple, humble tasks. However, the provision of such care transforms a very private, personal activity into a social process. Understanding this complex process and the psychological impact it has on those providing and receiving care is critical in order to mitigate potential distress. The purpose of this study to examine the experience of delivering and receiving intimate personal care in the NH.Methods: A focused ethnographic approach with participant observation, semi-structured interviews, focus groups and drop-in sessions, document review, and field notes. Data were analysed using constant comparative analysis.Results: Quality care in this context is predicated on the care provider recognition of the emotional impact of care delivery on the care recipient. Our analysis identified that the overarching theme, of providing quality person-centred intimate care, requires creating and maintaining a relational space that promotes integrity.Conclusions: The provision of intimate personal care consists of a complex interplay at the level of resident/care provider interaction (micro level); health care organization (meso level); and policy (macro level). Each of these levels interacts with and influences the other two. The components identified in our model may provide the basis from which to further examine resident experiences of quality intimate personal care.

A Practical Guide for Item Generation in Measure Development: Insights From the Development of a Patient-Reported Experience Measure of Compassion.

BACKGROUND AND PURPOSE: Although various measure development guidelines exist, practical guidance on how to systematically generate items is nascent. This article provides practical guidance on item generation in measure development and the use of a Table of Specifications (TOS) in this process. METHODS: In addition to a review of the literature, the item generation process within an ongoing study to develop a valid and reliable patient-reported measure of compassion is provided. RESULTS: Consensus on an initial pool of 109 items and their response scale was achieved with the aid of a TOS. CONCLUSIONS: Dynamic, experiential, and relational care constructs such as compassion lie at the heart of nursing. Practical guidance on item generation is needed to allow nurses to identify, measure, and improve compassion in research and practice.

Initial Validation of a Patient-Reported Measure of Compassion: Determining the Content Validity and Clinical Sensibility among Patients Living with a Life-Limiting and Incurable Illness.

BACKGROUND: Although compassionate care is considered a cornerstone of quality palliative care, there is a paucity of valid and reliable measures to study, assess, and evaluate how patients experience compassion/compassionate care in their care. OBJECTIVE: The aim was to develop a patient-reported compassion measure for use in research and clinical practice with established content-related validity evidence for the items, question stems, and response scale. METHODS: Content validation for an initial 109 items was conducted through a two-round modified Delphi technique, followed by cognitive interviews with patients. A panel of international Subject Matter Experts (SMEs) and a Patient Advisory Group (PAG) assessed the items for their relevancy to their associated domain of compassion, yielding an Item-level Content Validity Index (I-CVI), which was used to determine content modifications. The SMEs and the PAG also provided narrative feedback on the clarity, flow, and wording of the instructions, questions, and response scale, with items being modified accordingly. Cognitive interviews were conducted with 16 patients to further assess the clarity, comprehensibility, and readability of each item within the revised item pool. RESULTS: The first round of the Delphi review produced an overall CVI of 72% among SMEs and 80% among the PAG for the 109 items. Delphi panelists then reviewed a revised measure containing 84 items, generating an overall CVI of 84% for SMEs and 86% for the PAG. Sixty-eight items underwent further testing via cognitive interviews with patients, resulting in an additional 14 items being removed. CONCLUSIONS: Having established this initial validity evidence, further testing to assess internal consistency, test-retest reliability, factor structure, and relationships to other variables is required to produce the first valid, reliable, and clinically informed patient-reported measure of compassion.

Critical nursing and health care aide behaviors in care of the nursing home resident dying with dementia.

BACKGROUND: With the aging of the population, dying with dementia will become one of the most common ways in which older adults will end their final years of life, particularly for those living in a nursing home. Though individuals living with dementia have complex care needs and would benefit from a palliative approach to care, they have traditionally not been recipients of such care. An important aspect of determining quality in end-of-life care is the identification of expert practices, processes or behaviors that may help achieve this care. However, for those living with dementia in nursing homes, we have a limited understanding of how to best support expert end of life care. To redress this gap in knowledge, the purpose of this study was to examine and describe expert care of the individual with dementia approaching death from the perspective of nurses and health care aides (HCAs) identified by their peers as having special expertise in caring for this population. METHODS: A qualitative research design known as Interpretative Description was used to conduct the study. Expert nurses and HCAs were identified through a two-phase nomination process. Individual semi-structured interviews were conducted with consenting participants. Data were analyzed using constant comparative analysis to determine the key critical behaviors. RESULTS: Analysis of data collected from expert nurses (n = 8) and HCAs (n = 7) revealed six critical behaviors when caring for residents dying with dementia. All nurses and HCAs unanimously endorsed that the overarching goal of care is similar for all residents who are actively dying; to achieve comfort. The six critical behaviors in caring for residents dying with dementia included: 1) recognizing and responding to changes in a resident's pattern of behavior; 2) attending to the person; 3) working with the family; 4) engaging with others; 5) responding after the death has occurred; and 6) having a positive attitude toward care of the dying. CONCLUSIONS: The critical behaviors described by nurses and HCAs in this study provides emerging evidence of best practices in care of those with dementia and their families, particularly near the end of life within the nursing home setting.

Assessing the credibility and transferability of the patient compassion model in non-cancer palliative populations.

BACKGROUND: A lack of evidence and psychometrically sound measures of compassion necessitated the development of the first known, empirically derived, theoretical Patient Compassion Model (PCM) generated from qualitative interviews with advanced cancer inpatients. We aimed to assess the credibility and transferability of the PCM across diverse palliative populations and settings. METHODS: Semi-structured, audio-recorded qualitative interviews were conducted with 20 patients with life-limiting diagnoses, recruited from 4 settings (acute care, homecare, residential care, and hospice). Participants were first asked to share their understandings and experiences of compassion. They were then presented with an overview of the PCM and asked to determine whether: 1) the model resonated with their understanding and experiences of compassion; 2) the model required any modification(s); 3) they had further insights on the model's domains and/or themes. Members of the research team analyzed the qualitative data using constant comparative analysis. RESULTS: Both patients' personal perspectives of compassion prior to viewing the model and their specific feedback after being provided an overview of the model confirmed the credibility and transferability of the PCM. While new codes were incorporated into the original coding schema, no new domains or themes emerged from this study sample. These additional codes provided a more comprehensive understanding of the nuances within the domains and themes of the PCM that will aid in the generation of items for an ongoing study to develop a patient reported measure of compassion. CONCLUSIONS: A diverse palliative patient population confirmed the credibility and transferability of the PCM within palliative care, extending the rigour and applicability of the PCM that was originally developed within an advanced cancer population. The views of a diverse palliative patient population on compassion helped to validate previous codes and supplement the existing coding schema, informing the development of a guiding framework for the generation of a patient-reported measure of compassion.

Assessing Symptoms, Concerns, and Quality of Life in Noncancer Patients at End of Life: How Concordant Are Patients and Family Proxy Members?

CONTEXT: It has become commonplace to use family caregivers as proxy responders where patients are unable to provide information about their symptoms and concerns to health care providers. OBJECTIVES: The objective of this study was to determine the degree of concordance between patients' and family members' reports of patient symptoms and concerns at end of life. METHODS: Sample dyads included a mix of patients residing at home, in a nursing home, in a long-term care facility, or in hospice. Diagnoses included patients with amyotrophic lateral sclerosis (n = 75), chronic obstructive pulmonary disease (n = 52), end-stage renal disease (n = 42), and institutionalized, cognitively intact frail elderly (n = 49). Dyads completed the Patient Dignity Inventory (PDI), the modified Structured Interview Assessment of Symptoms and Concerns in Palliative Care, and Graham and Longman's two-item Quality of Life Scale. RESULTS: Concordance was less than 70% for seven of the 25 PDI items, with the lowest concordance (65.1%) for the item "not being able to continue with my usual routines." For all but one PDI item, discordance was in the direction of family members reporting that the patient was worse off than the patient had indicated. Where discordance was observed on the Structured Interview Assessment of Symptoms and Concerns in Palliative Care and Quality of Life Scales, the trend toward family members overreporting patient distress and poor quality of life continued. CONCLUSION: Understanding discordance between patients and family member reports of symptoms and concerns is a valuable step toward minimizing patient and family burden at end of life.

Developing and testing a nursing home end -of -life care chart audit tool.

BACKGROUND: Nursing home (NH) administrators need tools to measure the effectiveness of care delivered at the end of life so that they have objective data on which to evaluate current practices, and identify areas of resident care in need of improvement. METHODS: A three-phase mixed methods study was used to develop and test an empirically derived chart audit tool aimed at assessing the care delivered along the entire dying trajectory. RESULTS: The Auditing Care at the End of Life (ACE) instrument contains 27 questions captured across 6 domains, which are indicative of quality end-of-life care for nursing home residents. CONCLUSIONS: By developing a brief chart audit tool that captures best practices derived from expert consensus and the research literature, NH facilities will be equipped with one means for monitoring and assessing the care delivered to dying residents.

Correction: Dignity and Distress towards the End of Life across Four Non-Cancer Populations.

[This corrects the article DOI: 10.1371/journal.pone.0147607.].

Dignity and Distress towards the End of Life across Four Non-Cancer Populations.

OBJECTIVE: The purpose of this study was to identify four non-cancer populations that might benefit from a palliative approach; and describe and compare the prevalence and patterns of dignity related distress across these diverse clinical populations. DESIGN: A prospective, multi-site approach was used. SETTING: Outpatient clinics, inpatient facilities or personal care homes, located in Winnipeg, Manitoba and Edmonton, Alberta, Canada. PARTICIPANTS: Patients with advanced Amyotrophic Lateral Sclerosis (ALS), Chronic Obstructive Pulmonary Disease (COPD), End Stage Renal Disease (ESRD); and the institutionalized alert frail elderly. MAIN OUTCOME MEASURE: In addition to standardized measures of physical, psychological and spiritual aspects of patient experience, the Patient Dignity Inventory (PDI). RESULTS: Between February 2009 and December 2012, 404 participants were recruited (ALS, 101; COPD, 100; ESRD, 101; and frail elderly, 102). Depending on group designation, 35% to 58% died within one year of taking part in the study. While moderate to severe loss of sense of dignity did not differ significantly across the four study populations (4-11%), the number of PDI items reported as problematic was significantly different i.e. ALS 6.2 (5.2), COPD 5.6 (5.9), frail elderly 3.0 (4.4) and ESRD 2.3 (3.9) [p < .0001]. Each of the study populations also revealed unique and distinct patterns of physical, psychological and existential distress. CONCLUSION: People with ALS, COPD, ESRD and the frail elderly face unique challenges as they move towards the end of life. Knowing the intricacies of distress and how they differ across these groups broadens our understanding of end-of-life experience within non-cancer populations and how best to meet their palliative care needs.

An exploration of the patient navigator role: perspectives of younger women with breast cancer.

PURPOSE/OBJECTIVES: To delineate the role of the oncology patient navigator, drawing from the experiences and descriptions of younger women with breast cancer. RESEARCH APPROACH: Interpretive, descriptive, qualitative research design. SETTING: Participants' homes, researcher's home, and via telephone, all in Winnipeg, Manitoba, Canada. PARTICIPANTS: 12 women aged 50 years or younger who were diagnosed with breast cancer within the last three years. METHODOLOGIC APPROACH: Face-to-face semistructured interviews explored patient experiences with the cancer care system, including problems encountered, unmet needs, and opinions about the functions of the patient navigator role. The audio-recorded interviews were transcribed and data were broken down and inductively coded into four categories. Constant comparative techniques also were used during analysis. FINDINGS: The role of the oncology patient navigator included two facets: "Processual facets," with the subthemes assigned to me at diagnosis, managing the connection, mapping the process, practical support, and quarterbacking my entire journey; and "Personal qualities: The essentials," with the subthemes empathetic care tenor, knowing the cancer system, and understanding the medical side of breast cancer. CONCLUSIONS: Despite the tremendous effort directed toward enhancing care for younger women undergoing treatment for breast cancer, gaps continue to exist. Younger women with breast cancer require a care approach providing ongoing dialogue, teaching, and emotional support from the point of diagnosis through treatment, including transitions of care within the oncology setting and back to their primary care practitioner. INTERPRETATION: Oncology nurse navigators are well positioned to provide patients with anticipatory guidance from diagnosis to the end of treatment.

Nurses' responses to initial moral distress in long-term care.

While researchers have examined the types of ethical issues that arise in long-term care, few studies have explored long-term care nurses' experiences of moral distress and fewer still have examined responses to initial moral distress. Using an interpretive description approach, 15 nurses working in long-term care settings within one city in Canada were interviewed about their responses to experiences of initial moral distress, resources or supports they identified as helpful or potentially helpful in dealing with these situations, and factors that hindered nurses in their responses. Using a thematic analysis process, three major themes were identified from the nurses' experiences: (i) the context of the situation matters; (ii) the value of coming together as a team; and (iii) looking for outside direction. The work of responding to initial moral distress was more fruitful if opportunities existed to discuss conflicts with other team members and if managers supported nurses in moving their concerns forward through meetings or conversations with the team, physician, or family. Access to objective others and opportunities for education about ethics were also identified as important for dealing with value conflicts.

Health care provider communication: an empirical model of therapeutic effectiveness.

BACKGROUND: Patients who are facing life-threatening and life-limiting cancer almost invariably experience psychological distress. Responding effectively requires therapeutic sensitivity and skill. In this study, we examined therapeutic effectiveness within the setting of cancer-related distress with the objective of understanding its constituent parts. METHODS: Seventy-eight experienced psychosocial oncology clinicians from 24 health care centers across Canada were invited to participate in 3 focus groups each. In total, 29 focus groups were held over 2 years, during which clinicians articulated the therapeutic factors deemed most helpful in mitigating patient psychosocial distress. The content of each focus group was summarized into major themes and was reviewed with participants to confirm their accuracy. Upon completion of the focus groups, workshops were held in various centers, eliciting participant feedback on an empirical model of therapeutic effectiveness based on the qualitative analysis of focus group data. RESULTS: Three primary, interrelated therapeutic domains emerged from the data, forming a model of optimal therapeutic effectiveness: 1) personal growth and self-care (domain A), 2) therapeutic approaches (domain B), and 3) creation of a safe space (domain C). Areas of domain overlap were identified and labeled accordingly: domain AB, therapeutic humility; domain BC, therapeutic pacing; and domain AC, therapeutic presence. CONCLUSIONS: This empirical model provides detailed insights regarding the elements and pedagogy of effective communication and psychosocial care for patients who are experiencing cancer-related distress.

Understanding bereaved family members' dissatisfaction with end-of-life care in nursing homes.

With increasing numbers of older adults identifying a nursing home (NH) as their final place of care, it is important to assess the quality of dying in this setting and understand factors that impact family members' dissatisfaction with end-of-life care. A retrospective bereaved family member survey (N = 208) was conducted in 21 NHs located in urban areas of central Canada. Bereaved family members who were dissatisfied with care identified significantly more concerns in all domains assessed and were more likely to have problems with: (a) receiving confusing information from nursing staff about the resident's care, including medical treatments; (b) receiving inadequate information from nursing staff; and (c) feeling that end-of-life care was different than they had expected. Since the quality of communication between nurses, residents, and family members is the main factor that determines families' dissatisfaction with care, strategies and interventions aimed at reducing unmet information needs will be vital to improving end-of-life care in NHs.

The Patient Dignity Inventory: applications in the oncology setting.

BACKGROUND: The Patient Dignity Inventory (PDI) is a novel 25-item psychometric instrument, designed to identify multiple sources of distress (physical, functional, psychosocial, existential, and spiritual) commonly seen in patients who are terminally ill. It was also designed to help guide psychosocial clinicians in their work with patients. While its validity and reliability have been studied within the context of palliative care, its utility in clinical settings has not as yet been examined. PURPOSE: The purpose of this study was to determine how psychosocial oncology professionals would use the PDI with within their practice and what utility it might have across the broad spectrum of cancer. METHODS: Between October 2008 and January 2009, psychosocial oncology clinicians from across Canada were invited to use the PDI to determine their impressions of this approach in identifying distress and informing their practice. RESULTS: Ninety participants used the PDI and submitted a total of 429 feedback questionnaires detailing their experience with individual patients. In 76% of instances, the PDI revealed one or more previously unreported concerns; in 81% of instances, clinicians reported that the PDI facilitated their work. While it was used in a wide range of circumstances, clinicians were more inclined to apply the PDI to patients engaged in active treatment or palliation, rather than those in remission, having recently relapsed, or newly diagnosed. Besides its utility in identifying distress, the PDI enabled clinicians to provide more targeted therapeutic responses to areas of patient concern. CONCLUSIONS: While this study suggests various clinical applications of the PDI, it also provides an ideal forerunner for research that will directly engage patients living with cancer.

Fecal occult blood testing instructions and impact on patient adherence.

INTRODUCTION: Although the physician's role with patients is crucial in encouraging FOBT screening, the nature and content of physician-patient discussions about FOBT screening is unclear. As part of a larger study, this paper reports on our analyses of physician beliefs about fecal occult blood testing (FOBT) and strategies they employed to enhance patient adherence. The second aim of this paper is to report on the perceptions of individuals at average risk for colorectal cancer (CRC) in regard to their awareness of the FOBT and their responses to physician recommendations about FOBT screening. METHODS: The larger study was conducted in urban and rural Manitoba, Canada between 2008 and 2010. We used a qualitative design and conducted semi-structured, audio-recorded interviews with 15 physicians and 27 individuals at average risk for CRC. We included data from 11 family members or friends on their perspectives of FOBT instructions as individuals who were also at average risk for CRC and had their own experiences with CRC screening recommendations. RESULTS: Despite widespread knowledge of The Canadian Task Force on Preventive Health Care CRC screening guidelines, physician attitudes, behaviors, and instructions were not uniform in promoting patient adherence to FOBT screening. Individuals at average-risk for CRC identified that FOBT instructions were confusing and burdensome, which in turn served as a barrier in their adherence to FOBT screening. CONCLUSIONS: Variation in FOBT instruction counseling in relation to the recommended age of individuals at average risk for CRC, as well as adequate patient preparation affected patient adherence. We recommend uniform or standardized instructions and counseling by health care providers who administer the FOBT kit to patients to promote adherence to recommended CRC screening.

Impact of patient smoking behavior on empathic helping by family caregivers in lung cancer.

PURPOSE/OBJECTIVES: To test the impact of patient smoking behavior on family caregiver judgments of responsibility, emotions, empathic responses, and helping behavior. DESIGN: Structural equation modeling. SETTING: Five oncology outpatient settings in Canada. SAMPLE: 304 dyads consisting of patients with lung cancer and their primary caregivers. METHODS: Self-report questionnaires, abstracted medical record data, confirmatory factor analysis, and structural equation modeling. MAIN RESEARCH VARIABLES: Smoking history, judgments of responsibility for controlling the disease, anger, pride, empathic responses, and helping behaviors. FINDINGS: The impact of patient smoking behavior on caregiver help was mediated by caregiver judgments of responsibility, affective reactions of anger and pride, and empathic responses by caregivers. CONCLUSIONS: When patients continued to engage in smoking behavior, despite a diagnosis of lung cancer, caregivers tended to ascribe more responsibility and feel more anger and less pride in the patients' efforts to manage the disease, therefore placing caregivers at risk for less empathy and helping behavior. IMPLICATIONS FOR NURSING: Caregiver blame and anger must be assessed, particularly when the patient with lung cancer continues to smoke. If caregiver judgments of blame and anger are evident, then an attribution approach is indicated involving a dialogue between the caregiver and the patient, with the aim of enhancing the caregiver's understanding of how negative attributions and linked emotions impact his or her ability to engage in empathic helping behaviors.

Dignity therapy: a feasibility study of elders in long-term care.

OBJECTIVE: The purpose of this study was to assess the feasibility of dignity therapy for the frail elderly. METHOD: Participants were recruited from personal care units contained within a large rehabilitation and long-term care facility in Winnipeg, Manitoba. Two groups of participants were identified; residents who were cognitively able to directly take part in dignity therapy, and residents who, because of cognitive impairment, required that family member(s) take part in dignity therapy on their behalf. Qualitative and quantitative methods were applied in determining responses to dignity therapy from direct participants, proxy participants, and healthcare providers (HCPs). RESULTS: Twelve cognitively intact residents completed dignity therapy; 11 cognitively impaired residents were represented in the study by way of family member proxies. The majority of cognitively intact residents found dignity therapy to be helpful; the majority of proxy participants indicated that dignity therapy would be helpful to them and their families. In both groups, HCPs reported the benefits of dignity therapy in terms of changing the way they perceived the resident, teaching them things about the resident they did not previously know; the vast majority indicated that they would recommend it for other residents and their families. SIGNIFICANCE OF RESULTS: This study introduces evidence that dignity therapy has a role to play among the frail elderly. It also suggests that whether residents take part directly or by way of family proxies, the acquired benefits--and the effects on healthcare staff--make this area one meriting further study.