BACKGROUND: Thirst is prevalent among patients in intensive care units. A research-based "thirst bundle" was shown to significantly decrease thirst in these patients.
OBJECTIVE: To implement a research-based thirst intervention performed by intensive care unit nurses and patients' family members.
METHODS: Nurses and family members were taught the thirst intervention through video training and project team reinforcement. The intervention was performed by nurses for 123 patients and by family members for 13 patients. Thirst was measured with a numeric rating scale of 0 to 10, a word scale of 0 to 3, or "yes/no" answers, whichever was easiest for the patient. Inferential statistics were used to assess changes in thirst scores over time. Also assessed were nurse and family member burden levels, family level of satisfaction, and patient enjoyment.
RESULTS: Thirst scores on the numeric rating scale decreased significantly: from a mean (SD) of 7.9 (2.0) before to 3.9 (2.7) after the intervention for nurses (P < .001); and from 9.2 (1.5) to 5.3 (2.6) for family members (n = 13; P = .002). Word scale scores also decreased significantly, from a median (interquartile range) of 3 (3-3) before to 2 (1-2) after the intervention for nurses (P < .001). Most patients (96%) reported enjoying the procedure. Median burden levels were less than 2 on a numeric rating scale of 0 to 10.
CONCLUSIONS: The palliative "thirst bundle" significantly alleviated patients' thirst and resulted in little caregiver burden. Further efforts are warranted to incorporate this intervention into intensive care unit practice.
Background and purpose: A palliative approach involves adapting and integrating palliative care knowledge and expertise earlier on and across sectors of care for people who have life-limiting chronic conditions. This study explored the extent to which nurses’ and care aides’ self-perceived palliative care competence may explain variation in the application of a palliative approach across nursing care settings that do not specialize in palliative care. A secondary objective was to psychometrically evaluate an instrument for measuring self-perceived palliative care competence.
Methods and procedures: Data were collected via a cross-sectional survey (N = 1468) of registered nurses, licensed practical nurses, and care aides at 114 randomly selected hospital-based medical units, home care offices, and residential care facilities. The questionnaire included the Palliative Care Nursing Self-Competence Scale. Multilevel logistic regression and multigroup confirmatory factor analyses were conducted.
Results: In addition to self-perceived competence, factors associated with a palliative approach include identification of patients who have life-limiting conditions and who would benefit from a palliative approach, and work environment. The psychometric analyses of the Palliative Care Nursing Self-Competence Scale confirmed a 10-dimensional structure, strong internal consistency reliability, and measurement equivalence.
Discussion and conclusion: This study provides information for future development and research on interventions for integrating a palliative approach.
Les soins palliatifs pédiatriques visent à promouvoir la meilleure qualité de vie des enfants. Cependant, mesurer cette qualité de vie, qui est un construit hautement subjectif et multidimensionnel, est complexe car il faut tenir compte de l’hétérogénéité des maladies, des âges, des trajectoires de soins ainsi que des types d’interventions. Actuellement, la plupart des instruments de mesure ne tiennent pas suffisamment compte de la perspective des enfants au sujet de ce qui est important pour eux. De plus, la pertinence de certaines propriétés psychométriques des outils standardisés existants a été questionnée dans le contexte particulier des soins palliatifs pédiatriques.
With mounting empirical evidence that interpersonal closeness and conflict with the deceased prior to death are significant predictors of grief reactions following loss, accurate empirical examination of these two constructs is of high importance. Despite the utility of the Quality of Relationships Inventory (QRI) in numerous domains of research, the original instrument was not constructed with a predeath, mourner–decedent relationship in mind. Therefore, this study clarified the factor structure of a modified QRI focusing on major dimensions of the predeath relationship with the deceased—dynamics that could have strong implications for the survivor’s bereavement trajectory. An exploratory factor analysis of 386 bereaved adults revealed two salient factors, deemed closeness and conflict. These results suggest that the modified bereavement version of the QRI, designated the Quality of Relationships Inventory–Bereavement version, is well positioned to advance research in thanatology, with possible limitations noted in the range of relationships to which it is applicable.
The Frommelt Attitude Toward Care of the Dying Scale (FATCOD) is designed to assess the attitudes of professionals and trainees toward caring for the dying patient and their family members. In this study the main aim is to adapt the FATCOD to a Spanish context (FATCOD-S). In addition, the relations between FATCOD-S, sociodemographic variables, emotional intelligence, and death attitudes have been analyzed. A sample of 669 Spanish nursing students from four Universities responded to a questionnaire. The exploratory factor analysis (EFA) concludes a structure composed of two significant factors. A confirmatory factor analysis (CFA) was carried out. The CFA supported a two-factor model. Students with past experience of death and those who had received training in palliative care scored significantly higher on both factors of the FATCOD-S (p < 0.01). The FATCOD-S is an effective and valid tool for measuring the attitudes of Spanish nursing students toward caring for patients at the end of life.
Context: Palliative care is underutilized, and research has neglected patient-level factors including attitudes that could contribute to avoidance or acceptance of palliative care referrals. This may be due in part to a lack of existing measures for this purpose.
Objectives: To develop and validate a 9-item scale measuring patient attitudes toward palliative care, comprised of 3 subscales spanning emotional, cognitive, and behavioral factors.
Methods: Data were collected online in three separate waves, targeting individuals with cancer (Sample 1: N=633; Sample 2: N=462) or non-cancer serious illnesses (Sample 3: N=225). Participants were recruited using ResearchMatch.org and postings on the websites, social media pages, and listservs of international health organizations.
Results: Internal consistency was acceptable for the total scale (a=.84) and subscales: emotional (a=.84), cognitive (as=.70), and behavioral (a=.90). The PCAS-9 was significantly associated with a separate measure of palliative care attitudes (ps<.001) and a measure of palliative care knowledge (ps<.004), supporting its construct validity in samples of cancer and non-cancer serious illnesses. The scale’s psychometric properties, including internal consistency and factor structure, generalized across patient subgroups based on diagnosis, other health characteristics, and demographics.
Conclusion: Findings support the overall reliability, validity, and generalizability of the PCAS-9 in serious illness samples and have implications for increasing palliative care utilization via clinical care and future research efforts.
This study aimed to examine the reliability and validity of a scale to assess the competence of Korean nurses who provide spiritual care for patients with terminal illnesses. The reliability and validity were examined using Cronbach a, item analysis, and exploratory factor analysis. The participants were 248 hospice nurses working at 40 hospices and palliative hospitals in South Korea. The results showed that the reliability was high, as indicated by a Cronbach a of .942. The exploratory factor analysis revealed 6 dimensions (assessment and implementation of spiritual care, professionalization and improvement of the quality of spiritual care, personal support and patient counseling, referral to professionals, attitude toward the patient’s spirituality, and communication) with 27 items. The 6 factors explained 68.20% of the variance in the Korean version of the Spiritual Care Competence Scale. From the results, the Korean version of the Spiritual Care Competence Scale may serve as an appropriate measure for provision of spiritual care for patients with terminal illness. In addition, it may be useful in assessing hospice and palliative nurses’ ability for spiritual care.
In China, the development of palliative care is challenging because of limited available resources and rapidly increasing demands. The nurses' competence is a significant element in providing high-quality palliative care. This cross-sectional study aimed to describe the palliative care competence among oncology nurses and to examine the relationships between it and palliative care knowledge, attitudes, and workplace learning conditions. A total of 220 nurses with more than 6 months of experience and who worked in inpatient wards were invited to participate in this study. Four questionnaires were administered to collect data-the Palliative Care Quiz for Nurses, the Attitudes Toward Palliative Care Scale, the Workplace Learning Conditions scale, and the Palliative Care Nursing Self-competence Scale. The data were analyzed using descriptive statistics and Pearson correlations. The moderate level of competence was reported by 212 participants (response rate, 96.36%). The scores were lower in the aspects of competence such as spiritual care and ethical and legal issues. Competence was positively related to workplace learning conditions and knowledge but not attitudes. The results highlighted the necessity of improving the palliative care competence among oncology nurses. The optimization of learning conditions in the hospital is recommended to be a vital force in strengthening competence.
OBJECTIVE: To test our hypothesis that an innovative method of early palliative care called "Baby, Attachment, Comfort Interventions" reduces psychological distress in parents of neonates with congenital heart disease.
STUDY DESIGN: Prospective cohort study of parents of neonates with congenital heart disease. Distress was evaluated at admission and discharge using Neonatal Unit Parental Stressor Scale and Depression Anxiety Stress Index-21. Control parents received standard of care. Intervention parents received interdisciplinary interventions aimed at improving neonatal comfort and parenting experience.
RESULTS: Seventy-seven parents participated. Stress decreased in the intervention group (26 parents) but not in the control group (51 parents). There was no decrease in anxiety or depression in either group.
CONCLUSION: Early palliative care reduces stress in parents of neonates with congenital heart disease. Further work is needed to address depression/anxiety in this group of high-risk parents.
OBJECTIVES: For patients' entire families, it can be challenging to live with cancer during the palliative stage. However, a sense of coherence buffers stress and could help health professionals identify families that require support. Therefore, the short version of the Family Sense of Coherence Scale (FSOC-S) was translated, culturally adapted, and validated in a Swedish sample.
METHODS: Translation and cross-cultural adaptation of the FSOC-S into Swedish was conducted in accordance with the World Health Organization's Process for Translation and Adaptation of Research Instruments guidelines. Participants were recruited from two oncology clinics and two palliative centers in Sweden.
RESULTS: Content validity was supported by experts (n = 7), persons with cancer (n = 179), and family members (n = 165). Homogeneity among items was satisfactory for persons with cancer and family members (item-total correlations were 0.45 0.70 and 0.55 0.72, respectively) as well as internal consistency (ordinal alpha = 0.91 and 0.91, respectively). Factor analyses supported unidimensionality. FSOC-S correlated (rs > 0.3) with hope, anxiety, and symptoms of depression, which supported convergent validity. The test-retest reliability for items ranged between fair and good (kw = 0.37 0.61).
SIGNIFICANCE OF RESULTS: The FSOC-S has satisfactory measurement properties to assess family sense of coherence in persons with cancer and their family members. FSOC-S could be used to identify family members who experience low levels of perceived family sense of coherence which provides health care professionals with insight into families' needs and ability to live with cancer in the palliative stage.
OBJECTIVES: The experience of caregiving may affect carers' well-being into bereavement. We explored associations between mental well-being and previous experience of bereavement of, and caring for, someone close at the end-of-life.
METHODS: An end-of-life set of questions was included in population-based household survey administered to adults (age 16 years and above). We used univariable regression to explore the cross-sectional relationship between our primary outcome (Warwick-Edinburgh Mental Well-being Scale (WEMWBS)) and possible explanatory variables: sociodemographic; death and bereavement including ability to continue with their life; disease and carer characteristics; service use and caregiving experience.
RESULTS: The analysis dataset included 7606 of whom 5849 (77%) were not bereaved, 1174 (15%) were bereaved but provided no care and 583 (8%) were bereaved carers. WEMWBS was lower in the oldest age class (85 years and above) in both bereaved groups compared with not bereaved (p<0.001). The worst WEMWBS scores were seen in the 'bereaved but no care' group who had bad/very bad health self-assessed general health (39.8 (10.1)) vs 41.6 (9.5)) in those not bereaved and 46.4 (10.7) in bereaved carers. Among the bereaved groups, those who would not be willing to care again had lower WEMWBS scores than those who would (48.3 (8.3) vs 51.4 (8.4), p=0.024).
CONCLUSION: Mental well-being in bereavement was worse in people with self-reported poor/very poor general health and those with a worse caregiving experience. Although causality cannot be assumed, interventions to help people with worse mental and physical health to care, so that their experience is as positive as possible, should be explored prospectively.
CONTEXT: Patients with cancer experience many symptoms that disrupt quality of life, and symptom communication and management can be challenging. The Edmonton Symptom Assessment System (ESAS) was developed to standardize assessment and documentation of symptoms, yet research is needed to understand patients' and caregivers' experiences using the tool and its ability to impact patient-provider aligned care.
OBJECTIVES: To understand how the ESAS shapes communication between patients and providers by exploring patients' and caregivers' experiences using the ESAS and assessing the level of agreement in symptom assessment between patients and palliative care physicians.
METHODS: This study utilized a mixed-methods design. 31 semi-structured interviews were conducted and audio-recorded with patients (n = 18) and caregivers (n = 13). Data were analyzed following a social constructionist grounded theory approach. Patient and provider ESAS scores were obtained by medical chart review. Intraclass Correlation Coefficients (ICCs) were used to assess the level of agreement between patient-completed ESAS scores and provider-completed ESAS scores.
RESULTS: Participants reported that the ESAS was a beneficial tool in establishing priorities for symptom control and guiding the appointment with the palliative care physician, despite challenges in completing the ESAS. Filling out the ESAS can also help patients more clearly identify their priorities before meeting with their physician. There was a good to excellent level of agreement between patients and physicians in all symptoms analyzed.
CONCLUSION: The ESAS is beneficial in enhancing symptom communication when used as a guide to identify and understand patients' main concerns.
AIM: This study aimed to develop a "family caregiver needs-assessment scale for end-of-life care for senility at home" (FADE) and examine its reliability and validity.
METHOD: A draft item pool was developed based on a literature review, and simplified to 30 items in four domains. Next, the item pool was reviewed by four visiting nurses and four researchers and refined to 15 items. A cross-sectional study was then conducted using a self-reported questionnaire. Questionnaires were sent to 2703 visiting nurses. The survey questions included participants' basic demographic information, the importance of each item according to a modified scale, basic demographics for cases of death by senility at home, satisfaction with each item of the modified scale in an example case, and assessment of the case using the Japanese version of the Support Team Assessment Schedule (STAS-J). Internal consistency was assessed using Cronbach's alpha. Construct validity was confirmed using confirmatory factor analysis, and correlation between the new scale and the STAS-J was used to assess criterion-related validity.
RESULTS: In total, 461 visiting nurses provided valid responses. The exploratory and confirmatory factor analyses identified 12 items from two factors: "Needs for adaptation to senility bereavement" and "Needs for essential skills in supporting a dignified death by senility." The final model showed appropriate index values: standardized root mean residual = 0.057, Tucker-Lewis index = 0.920, Akaike information criterion = 191.6, and Bayesian information criterion = 298.2. Cronbach's alpha for the entire scale was 0.908, and was above 0.840 for each factor. The correlation coefficient between STAS-J and the entire scale was 0.259-0.427 (p<0.001).
CONCLUSIONS: The FADE scale showed acceptable internal consistency and concurrent validity. The scale can help clarify issues and desires that present themselves at home related to adaptation to senility bereavement and essential skills in supporting a dignified death by senility. Addressing these issues and desires is expected to reduce caregivers' anxiety and burden, and means the older adults under their care may be respected and enabled to live with dignity and peace.
Widowhood researchers have been increasingly interested in the construct of resilience and identifying factors which contribute to adaptive responses to conjugal loss. Available measures of general resilience were validated on nonwidowed samples and broadly lack face validity for use with widowed people. This article reports the development and validation of a resilience scale specific to widowhood, the Widowhood Resilience Scale. Initially, qualitative responses from 744 widowed people were analyzed and cross-referenced with existing literature on resilience to develop 49 items. The 49 items were tested on a sample of 1,188 widowed people, resulting in a 6-factor, 25-item scale.
OBJECTIVE: This is an observational study on well-being and end-of-life preferences in patients with amyotrophic lateral sclerosis (ALS) in the locked-in state (LIS) in a Polish sample within the EU Joint Programme-Neurodegenerative Disease Research study NEEDSinALS (NEEDSinALS.com).
METHODS: In this cross-sectional study, patients with ALS in LIS (n = 19) were interviewed on well-being (quality of life, depression) as a measure of psychosocial adaptation, coping mechanisms, and preferences towards life-sustaining treatments (ventilation, percutaneous endoscopic gastroscopy) and hastened death. Also, clinical data were recorded (ALS Functional Rating Scale-revised version). Standardized questionnaires (Anamnestic Comparative Self-Assessment [ACSA], Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), ALS Depression Inventory-12 items [ADI-12], schedule of attitudes toward hastened death [SAHD], Motor Neuron Disease Coping Scale) were used, which were digitally transcribed; answers were provided via eye-tracking control. In addition, caregivers were asked to judge patients' well-being.
RESULTS: The majority of patients had an ACSA score >0 and a SEIQoL score >50% (indicating positive quality of life) and ADI-12 <29 (indicating no clinically relevant depression). Physical function did not reflect subjective well-being; even more, those with no residual physical function had a positive well-being. All patients would again choose the life-sustaining techniques they currently used and their wish for hastened death was low (SAHD <10). Caregivers significantly underestimated patient's well-being.
INTERPRETATION: Some patients with ALS in LIS maintain a high sense of well-being despite severe physical restrictions. They are content with their life-sustaining treatments and have a strong will to live, which both may be underestimated by their families and public opinion.
BACKGROUND: The use of observational measures to assess palliative care patients' level of consciousness may improve patient care and comfort. However, there is limited knowledge regarding the validity and reliability of these measures in palliative care settings.
AIM: To identify and evaluate the psychometric performance of observational level of consciousness measures used in palliative care.
DESIGN: Systematic review; PROSPERO registration: CRD42017073080.
DATA SOURCES: We searched six databases until November 2018, using search terms combining subject headings and free-text terms. Psychometric performance for each identified tool was appraised independently by two reviewers following established criteria for developing and evaluating health outcome measures.
RESULTS: We found 35 different levels of consciousness tools used in 65 studies. Only seven studies reported information about psychometric performance of just eight tools. All other studies used either ad hoc measures for which no formal validation had been undertaken (n = 21) or established tools mainly developed and validated in non-palliative care settings (n = 37). The Consciousness Scale for Palliative Care and a modified version of the Richmond Agitation–Sedation Scale received the highest ratings in our appraisal, but, since psychometric evidence was limited, no tool could be assessed for all psychometric properties.
CONCLUSION: An increasing number of studies in palliative care are using observational measures of level of consciousness. However, only a few of these tools have been tested for their psychometric performance in that context. Future research in this area should validate and/or refine the existing measures, rather than developing new tools.
CONTEXT: Understanding the magnitude and risk-factors for symptom burden of cancer patients at the end-of-life is critical to guiding effective patient- and system-level interventions.
OBJECTIVES: We aimed to estimate the prevalence of severe patient-reported symptoms among cancer outpatients during the six months before death and to identify patient groups at a higher risk for reporting severe symptoms.
METHODS: This was a retrospective cohort study of cancer decedents at regional cancer centers from 2010-2016. Patient-reported Edmonton Symptom Assessment System (ESAS) scores from the last six months-of-life were linked to administrative databases. The proportion of patients reporting severe symptom scores (>7) for anxiety, depression, drowsiness, lack of appetite, nausea, pain, shortness of breath, tiredness, and overall wellbeing during the six months before death was described. Multivariable modified Poisson regression analyses were used to identify risk-factors for reporting severe symptom scores.
RESULTS: 22,650 of 39,084 cancer decedents had =1 symptom record in the last six months of life, resulting in 92,757 ESAS assessments. Severe scores were highest for tiredness (56%), lack of appetite (46%), and impaired wellbeing (45%). The proportion of patients reporting severe symptom scores was stable before progressively increasing at 3 months prior to death. Elderly, women, patients with high comorbidity, immigrants, living in urban areas or with high material deprivation were at increased risk of reporting severe scores.
CONCLUSIONS: Despite an integrated symptom screening program, rates of severe patient-reported symptom scores prior to death were high for cancer outpatients. Patient subgroups at increased risk of severe symptom burden may benefit from targeted interventions. Ongoing review of routinely collected symptom data may be used to assess the supportive care needs and guide targeted interventions at the health-system level.
BACKGROUND: Considering the extensive debate that is currently taking place in Spain regarding euthanasia, it is important to examine the attitude of professionals who perform most of their duties at the bedside of these patients and their families.
OBJECTIVES: The aim of the present study was to present an adaptation and validation of the Euthanasia Attitude Scale and to evaluate its psychometric properties among a sample of nursing students in Spain.
RESEARCH DESIGN: A cross-sectional study design was conducted.
PARTICIPANTS AND RESEARCH CONTEXT: Non-probabilistic sampling was used to recruit 396 Spanish nursing students.
METHODS: A self-report questionnaire, including socio-demographic data and the Euthanasia Attitude Scale, were used for data collection. The psychometric properties of the Euthanasia Attitude Scale were assessed, including reliability and validity. Fit indices of the overall model were computed.
ETHICAL CONSIDERATIONS: This study was approved by the Hospital Ethical Committee. Students were informed of the aims and procedures and provided written informed consent prior to data collection.
RESULTS: The factorial solution comprised four domains and the scale demonstrated adequate internal consistency (Cronbach's alpha = .878). For the exploratory factor analysis, the Kaiser-Meyer-Olkin index of sampling adequacy was .905 and the Bartlett's Test of Sphericity was 2972.79 (p < .001). The initial factorial solution revealed four factors with eigenvalues of 6.78 for the first factor, 1.90 for the second one, 1.29 for the third, and 1.10 for the fourth factor. Moreover, there was a significant relationship between religiosity and the domains of the Euthanasia Attitude Scale.
DISCUSSION: This study obtained a Cronbach's alpha coefficient of .88 which is in consonance with the findings reported by other studies whereby none of the items were removed and the initial structure based on four domains was conserved, with a factorial solution that explains 52.79% of the total variance. The displacement of some items of the domain may be explained by certain religious and/or cultural components as, in accordance with other studies, people with firm religious beliefs are more inclined to refuse euthanasia.
CONCLUSION: According to the findings of this study, the Euthanasia Attitude Scale is a reliable and valid instrument to measure the attitudes toward euthanasia in a sample of Spanish nursing students. This Spanish adaptation will be valuable in future studies examining the attitude and implication of nurses, understanding that nurses are key figures in the euthanasia debate.
This study developed an end-of-life (EOL) care nursing knowledge scale for Japanese geriatric nurses (ELNKS-JG) to measure nurse knowledge of EOL care for older adults. It also was used to evaluate the quality of The End-of-Life Nursing Education Consortium–Japan Geriatric. Participants were 1168 nurses employed in 32 institutions across Japan. The items of our measure were developed to cover 8 important topics: principles of EOL care for older adults; pain management; symptom management; ethics of care; cultural and spiritual considerations; communication; loss, grief, and bereavement; and caring for final days. The measure included 51 items with an overall Cronbach a coefficient of 0.87 and an intraclass correlation coefficient of 0.81. Our measure, the ELNKS-JG, was confirmed to have good internal consistency, test-retest reliability, content validity, and known-groups validity. This scale’s items included knowledge about noncancerous diseases, physical changes due to aging, family care, and multidisciplinary collaboration. The ELNKS-JG comprehensively measures a nurse’s knowledge of EOL care for older adults in any EOL setting. Furthermore, this scale can evaluate educational programs aimed at improving care quality and encouraging related activities in facilities that provide EOL care.