INTRODUCTION: Despite the high mortality rates in long-term care (LTC) homes, most do not have a formalised palliative programme. Hence, our research team has developed the Strengthening a Palliative Approach in Long Term Care (SPA-LTC) programme. The goal of the proposed study is to examine the implementation and effectiveness of the SPA-LTC programme. METHODS AND ANALYSIS: A cross-jurisdictional, effectiveness-implementation type II hybrid cluster randomised control trial design will be used to assess the SPA-LTC programme for 18 LTC homes (six homes within each of three provinces). Randomisation will occur at the level of the LTC home within each province, using a 1:1 ratio (three homes in the intervention and control groups). Baseline staff surveys will take place over a 3-month period at the beginning for both the intervention and control groups. The intervention group will then receive facilitated training and education for staff, and residents and their family members will participate in the SPA-LTC programme. Postintervention data collection will be conducted in a similar manner as in the baseline period for both groups. The overall target sample size will be 594 (297 per arm, 33 resident/family member participants per home, 18 homes). Data collection and analysis will involve organisational, staff, resident and family measures. The primary outcome will be a binary measure capturing any emergency department use in the last 6 months of life (resident); with secondary outcomes including location of death (resident), satisfaction and decisional conflict (family), knowledge and confidence implementing a palliative approach (staff), along with implementation outcomes (ie, feasibility, reach, fidelity and perceived sustainability of the SPA-LTC programme). The primary outcome will be analysed via multivariable logistic regression using generalised estimating equations. Intention-to-treat principles will be used in the analysis. ETHICS AND DISSEMINATION: The study has received ethical approval. Results will be disseminated at various presentations and feedback sessions; at provincial, national and international conferences, and in a series of manuscripts that will be submitted to peer-reviewed, open access journals. TRIAL REGISTRATION NUMBER: NCT039359.
Long-Term Care , Nursing Homes , Humans , Motivation , Data Collection , Palliative Care , Randomized Controlled Trials as Topic
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 (â¼6 months before death) and depression at Time 2 (â¼3 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.
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.
PURPOSE: Pancreatic cancer is a lethal disease. Many patients experience a heavy burden of cancer-associated symptoms and poor quality of life (QOL). Early palliative care alongside standard oncologic care results in improved QOL and survival in some cancer types. The benefit in advanced pancreatic cancer (APC) is not fully quantified. METHODS: In this prospective case-crossover study, patients ≥ 18 years old with APC were recruited from ambulatory clinics at a tertiary cancer center. Patients underwent a palliative care consultation within 2 weeks of registration, with follow up visits every 2 weeks for the first month, then every 4 weeks until week 16, then as needed. The primary outcome was change in QOL between baseline (BL) and week 16, measured by Functional Assessment of Cancer Therapy - hepatobiliary (FACT-Hep). Secondary outcomes included symptom control (ESAS-r), depression, and anxiety (HADS, PHQ-9) at week 16. RESULTS: Of 40 patients, 25 (63%) were male, 28 (70%) had metastatic disease, 31 (78%) had ECOG performance status 0-1, 31 (78%) received chemotherapy. Median age was 70. Mean FACT-hep score at BL was 118.8, compared to 125.7 at week 16 (mean change 6.89, [95%CI (-1.69-15.6); p = 0.11]). On multivariable analysis, metastatic disease (mean change 15.3 [95%CI (5.3-25.2); p = 0.004]) and age < 70 (mean change 12.9 [95%CI (0.5-25.4); p = 0.04]) were associated with improved QOL. Patients with metastatic disease had significant improvement in symptom burden (mean change -7.4 [95%CI (-13.4 to -1.4); p = 0.02]). There was no difference in depression or anxiety from BL to week 16. CONCLUSION: Palliative care should be integrated early in the journey for patients with APC, as it can improve QOL and symptom burden. TRIAL REGISTRATION: Clinicaltrials.gov identifier: NCT03837132.
Neoplasms , Pancreatic Neoplasms , Adolescent , Aged , Female , Humans , Male , Cross-Over Studies , Palliative Care/methods , Pancreatic Neoplasms/therapy , Patients , Quality of Life , Pancreatic Neoplasms
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.
OBJECTIVES: This study aimed to explore the construct of dignity of the patient-family dyad in hospice palliative care, as well as its influencing factors from the perspective of hospice palliative care staff. METHODS: A qualitative descriptive study was conducted with 34 staff members from a residential hospice in Amherst, USA, and an inpatient palliative care unit in Winnipeg, Canada, between September 2013 and December 2016. Data were collected through semistructured interviews and were analysed using the thematic analysis approach. RESULTS: Findings suggested that staff members viewed dignity as something that is reciprocally supported within the patient-family unit. Themes including respect, comfort, privacy, being informed and quality family time were common in the conceptualisation of dignity in patients and families; themes of being human and being self, autonomy and living with dignity were uniquely used to conceptualise patient dignity. Themes solely constituting family dignity included being included in care, being capable and being treated fairly. Cultural considerations, environmental factors, teamwork and patient/family-staff relationship were the factors identified by staff members that affected dignity in hospice palliative care. CONCLUSION: Findings of this study provide insights into the development of strategies to support the dignity of the patient-family unit in hospice palliative care.
Hospice Care , Hospice and Palliative Care Nursing , Hospices , Hospice Care/methods , Humans , Palliative Care/methods , Respect
PURPOSE: This study aimed to explore the meaning of patient dignity at the end of life in traditional Chinese culture from perspectives of advanced cancer patients and their family members. METHOD: A descriptive qualitative study was conducted with 15 advanced cancer patients and 10 family members in a tertiary hospital in Beijing, China between March and July 2019. Data were collected through face-to-face semi-structured interviews and were analyzed using thematic analysis. RESULTS: Dignity at the end of life in traditional Chinese culture were classified into four categories: (1) cultural-specific dignity, including themes of stigma-free, moral traits and "face"; (2) self-related dignity, including themes of staying healthy and alive, living a normal life as a normal person, spiritual peace, personal value and privacy; (3) family-related dignity, including themes of concerns to the family, not being a burden to the family, and family support; and (4) care- and treatment-related dignity, including themes of being respected, high quality service and disclosure of information and consent-based decision making. CONCLUSIONS: Patient dignity at the end of life in traditional Chinese culture was relevant to the culture, the individuals, their family, and the care and treatment they received. Patient dignity is supposed to be supported by collaborative efforts from the family and healthcare professionals, and meanwhile taking patient's cultural background and personal wishes and values into account.
Neoplasms , Respect , China , Death , Family , Humans , Neoplasms/therapy , Palliative Care , Qualitative Research
The purpose of this article is to discuss the different types of adipose tissue involved in cachexia and describe their role in contributing to increased energy expenditure and negative energy balance. Armed with this knowledge, nurses will be better positioned to understand the clinical picture of cachexia, appreciate the rationale for proposed therapeutic interventions, and confidently dialogue with patients, families, and members of interdisciplinary health care teams about this prevalent condition.
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.
Nursing Homes , Quality of Health Care , Delivery of Health Care , Humans , Interpersonal Relations , Sexual Partners
OBJECTIVES: Compassion is a key indicator of quality care that is reportedly eroding from patients' care experience. While the need to assess compassion is recognised, valid and reliable measures are lacking. This study developed and validated a clinically informed, psychometrically rigorous, patient-reported compassion measure. DESIGN: Data were collected from participants living with life-limiting illnesses over two study phases across four care settings (acute care, hospice, long term care (LTC) and homecare). In phase 1, data were analysed through exploratory factor analysis (EFA), with the final items analysed via confirmatory factor analysis (CFA) in phase 2. The Schwartz Center Compassionate Care Scale (SCCCS), the revised Edmonton Symptom Assessment Scale (ESAS-r) and Picker Patient Experience Questionnaire (PPEQ) were also administered in phase 2 to assess convergent and divergent validity. SETTING AND PARTICIPANTS: 633 participants were recruited over two study phases. In the EFA phase, a 54-item version of the measure was administered to 303 participants, with 330 participants being administered the final 15-item measure in the CFA phase. RESULTS: Both EFA and CFA confirmed compassion as a single factor construct with factor loadings for the 15-item measure ranging from 0.76 to 0.86, with excellent test-retest reliability (intraclass correlation coefficient range: 0.74-0.89) and excellent internal reliability (Cronbach's alpha of 0.96). The measure was positively correlated with the SCCCS (r=0.75, p<0.001) and PPEQ (r=0.60, p<0.001). Participants reporting higher experiences of compassion had significantly greater well-being and lower depression on the ESAS-r. Patients in acute care and hospice reported significantly greater experiences of compassion than LTC residents. CONCLUSIONS: There is strong initial psychometric evidence for the Sinclair Compassion Questionnaire (SCQ) as a valid and reliable patient-reported compassion measure. The SCQ provides healthcare providers, settings and administrators the means to routinely measure patients experiences of compassion, while providing researchers a robust measure to conduct high-quality research.
Empathy , Patient Reported Outcome Measures , Delivery of Health Care , Factor Analysis, Statistical , Humans , Psychometrics , Reproducibility of Results , Surveys and Questionnaires
OBJECTIVE: Although there has been an increasing emphasis on assisting nurses with providing quality hospice care to patients and family members, few studies have explored the challenges that oncology nurses face when delivering hospice care in the Chinese cultural context. The objective of this study was to elucidate the challenges for oncology nurses in providing hospice care for terminally ill cancer patients in mainland China. METHODS: A descriptive qualitative study with purposive sampling using audio-recorded fact-to-face interviews. A total of 13 hospice nurses from four hospitals in Beijing, mainland China, participated in this study. Data collection was from April to June 2019, and thematic analysis method was used to analyze the data. RESULTS: Challenges identified by hospice nurses in providing hospice care for terminally ill cancer patients included: (1) public misperception on hospice care, (2) lack of financial support, (3) fear of medical disputes and legal action, (4) shortage of human resources, (5) insufficient specialization and lack of "hierarchy" training on hospice care, (6) inexperience in communication skills, and (7) lack of self-care and stress management skills. CONCLUSIONS: It is imperative and critical for the government, health-care institutions, and hospice care providers to clearly understand the challenges that currently exist in providing hospice nursing. Joint efforts are needed to overcome those challenges, which might result in qualified hospice nurses and provide evidence for further development of hospice care in mainland China.
BACKGROUND: Research has identified inadequacies in the quality and quantity of dementia-related information, particularly end-of-life information provided to those living with dementia and their family caregivers. The purpose of this study was to identify what types of information family caregivers of persons living with dementia in nursing homes would deem useful in preparing them for their relative's end-of-life and assist them to make decisions about care along the dementia trajectory. METHODS: The qualitative methodology of interpretive description was used to guide the study in which semi-structured interviews were conducted with nursing home staff in clinical roles (e.g., nurses, health care aides, social workers, speech language pathologists; N = 26), palliative care clinicians (N = 7), and bereaved family caregivers of persons with dementia (N = 17). Data were analyzed using thematic analysis. FINDINGS: Eight substantive categories essential to meeting family members' needs for information and preparing them for the future were identified including: (i) dementia in general, (ii) dementia toward the end-of-life, (iii) care of persons dying with dementia, (iv) the role of family caregiver as decision maker, (v) sustaining connection, (vi) emotional impact of dementia on caregivers, (vii) relationships with staff, and (viii) general questions about life in a NH. CONCLUSION: Our findings suggest that family caregivers of nursing home residents with dementia have unique information and support needs, some disease specific, others more related to life in a nursing home in general. Health care providers need to support and encourage dementia literacy for family caregivers. A key strategy is to proactively broach these topic areas, as too often family caregivers may not recognize or value their need for information.
Caregivers , Dementia , Family , Humans , Nursing Homes , Palliative Care
Given the nursing shortage, nurse educators and leaders are responsible now more than ever to advocate for baccalaureate education as an entry-to-practice requirement for registered nurses. The world today is complex, with population health issues stemming from the COVID-19 pandemic, high patient acuity and climate change. Accordingly, a nursing workforce that receives high-quality education is required. In this paper, an overview is provided about the evolution of a baccalaureate degree in nursing as an entry-to-practice requirement. We highlight evidence about patient outcomes associated with baccalaureate-prepared nurses, identify gaps and examine the nature of workplace environments in optimizing contributions stemming from baccalaureate-prepared nurses.
COVID-19 , Education, Nursing, Baccalaureate , Nursing Staff , Humans , Pandemics , SARS-CoV-2
BACKGROUND: There is little concrete guidance on how to train current and future healthcare providers (HCPs) in the core competency of compassion. This study was undertaken using Straussian grounded theory to address the question: "What are healthcare providers' perspectives on training current and future HCPs in compassion?" METHODS: Fifty-seven HCPs working in palliative care participated in this study, beginning with focus groups with frontline HCPs (n = 35), followed by one-on-one interviews with HCPs who were considered by their peers to be skilled in providing compassion (n = 15, three of whom also participated in the initial focus groups), and end of study focus groups with study participants (n = 5) and knowledge users (n = 10). RESULTS: Study participants largely agreed that compassionate behaviours can be taught, and these behaviours are distinct from the emotional response of compassion. They noted that while learners can develop greater compassion through training, their ability to do so varies depending on the innate qualities they possess prior to training. Participants identified three facets of an effective compassion training program: self-awareness, experiential learning and effective and affective communication skills. Participants also noted that healthcare faculties, facilities and organizations play an important role in creating compassionate practice settings and sustaining HCPs in their delivery of compassion. CONCLUSIONS: Providing compassion has become a core expectation of healthcare and a hallmark of quality palliative care. This study provides guidance on the importance, core components and teaching methods of compassion training from the perspectives of those who aim to provide it-Healthcare Providers-serving as a foundation for future evidence based educational interventions.
Empathy , Health Personnel , Focus Groups , Grounded Theory , Humans , Palliative Care
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.
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.
Patient Reported Outcome Measures , Quality of Life , Surveys and Questionnaires/standards , Terminally Ill/psychology , Adult , Aged , Aged, 80 and over , Comprehension , Delphi Technique , Female , Humans , Interviews as Topic , Male , Middle Aged , Psychometrics , Qualitative Research , Reproducibility of Results
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.
The discourse of dying alone is negatively weighted and models of a good death identify not dying alone as a key outcome. Understanding why dying alone is viewed negatively and its effects on care is a priority. In separate focus groups with long-term care residents, family caregivers, and staff, we identified evidence for four different perspectives on the importance of presence at the time of death. However, while each individual had their own unique perspective on dying alone, the predominant view expressed across respondent groups was that having human connection near the end of one's life was important.
Attitude to Death , Palliative Care/psychology , Adult , Aged , Aged, 80 and over , Caregivers/psychology , Female , Focus Groups , Humans , Long-Term Care , Male , Middle Aged , Young Adult
ABSTRACTBackground: There is little empirical research into lay definitions of frailty. OBJECTIVES: (1) To explore the definitions of frailty among older men, and (2) to explore if these definitions match commonly used clinical definitions of frailty. METHODS: Analysis of open-ended questions to survey data from a prospective cohort study of older airmen. The definitions of frailty were elicited, and grouped according to themes. RESULTS: 147 men responded (mean age: 93). There was considerable heterogeneity in older men's' definitions of frailty, and no theme of frailty was predominant. The most common theme was impairment in activities of daily living. Older men's' definition of frailty was not consistent with any commonly used medical theory of frailty. CONCLUSIONS: Most older men think frailty is important, but their definitions are not consistent. Frailty may be a heterogeneous experience, which different people experience differently.
Activities of Daily Living , Aging/psychology , Frailty/physiopathology , Aged , Aging/physiology , Cognitive Dysfunction/etiology , Follow-Up Studies , Frailty/complications , Frailty/psychology , Humans , Male , Manitoba , Prospective Studies , Quality of Life , Surveys and Questionnaires
