Development of a Primary Palliative Nursing Care Competence Model and Assessment Tool: A Mixed-Methods Study.

AIM: The purpose of this study was to develop a new primary palliative nursing care (PPNC) competence model and assessment tool. BACKGROUND: Consensus guidelines, a national position statement, and new nursing program accreditation standards require nurses to be educated in providing PPNC. A means to assess PPNC competence for prelicensure nursing students and entry-level nurses is needed. METHOD: The mixed-methods study utilized a three-phase design encompassing in-depth document analysis and expert workgroups; focus groups with palliative care educators, practitioners, and administrators; and stakeholder focus groups. RESULTS: Findings across all phases resulted in development of a PPNC competence model and assessment tool, each composed of nine domains and associated competency statements. CONCLUSION: There is a global imperative for nurses to provide high-quality PPNC. Both the model and assessment tool are vital to develop a nursing workforce with the skills to care for persons with serious illness and their families.

Variables Impacting the Quality of Life of Dementia Caregivers: A Data Visualization Analysis.

PURPOSE: Visually explore the rates of and relationships between overall physical and mental health, sleep disturbances, and depression rates in a single sample of caregivers of persons with dementia, caregivers of persons with other chronic illness, and non-caregiving adults. DESIGN: Exploratory descriptive study utilizing data visualization methods. METHODS: Data were analyzed from the 2017 Behavioral Risk Factor Surveillance System dataset. Multiple graphs and charts were developed to visualize data between groups. Descriptive statistics analyzed the rates of variables of interest across the three groups. One-way analysis of variance assessed relationships between variables. RESULTS: Caregivers of persons with dementia and of other chronic illnesses reported poorer health outcomes as compared to non-caregiving adults. However, caregivers of persons with other chronic illnesses reported the worst outcomes of all groups. Depression and sleep disturbances were prevalent in all three groups. CONCLUSIONS: The quality of life of caregivers of persons with dementia and chronic illness is impacted by poorer health outcomes, specifically mental health and sleep. CLINICAL RELEVANCE: Findings support the need for caregiver-specific interventions that target overall physical and mental health, depression, and sleep disturbances. However, we also found support for mental health and sleep interventions for all individuals.

Utilizing a collaborative learning activity to sensitize interprofessional students to palliative care scopes of practice with adolescent and young adults.

Adolescent and young adults diagnosed with cancer represent a vulnerable population needing careful collaborative care from interprofessional teams. Healthcare providers must understand and appreciate the respective scopes of practice of palliative care team members to maximize the quality of care provided to these patients. A team of graduate students engaged in a collaborative learning activity to explore professional roles and responsibilities of palliative care team members when caring for adolescent and young adult oncology patients. Following a literature review and community expert interviews, students identified shared responsibilities of all team members and unique contributions of various professions. Engaging in this process highlighted and clarified the full scope of practice for each specialized team member. Educators should consider utilizing a similar collaborative learning activity to enhance students' understanding of the roles and responsibilities of each member of the interprofessional healthcare team.

Assessing student characteristics in palliative care education research: a literature review.

BACKGROUND: Assessing characteristics in educational research is important to describe a student sample. However, consistency in measuring student characteristics is lacking, particularly in palliative and end-of-life (PEOL) care education research. METHODS: A literature review was conducted to determine the primary characteristics to assess in PEOL education research, the corresponding level of measurement and associated statistical analyses to perform with the data. RESULTS: Key characteristics to measure include: age, previous PEOL healthcare experience, previous personal experience with death/loss, previous PEOL education, program of enrolment and religion. Gender, ethnicity/race and living situation/place of residence were not supported as key characteristics to assess. Best methods by which to measure characteristics remain unclear and the utilisation of characteristics in research is inconsistent. CONCLUSION: Identified characteristics should be measured in PEOL education research at the highest level of measurement. The influence of characteristics on outcomes should be considered in association with research questions.

Improving Attitudes and Perceived Competence in Caring for Dying Patients: An End-of-Life Simulation.

AIM: The aim of this study was to assess learning outcomes from a simulation on providing care to a critically ill patient from whom care is ultimately withdrawn. BACKGROUND: Nursing students have anxiety and low perceived competence for caring for dying patients. Effective strategies for teaching communication, assessment, and basic nursing skills are needed. METHOD: A pretest-posttest design compared perceived competence and attitudes in caring for dying patients with three separate cohorts of undergraduate nursing students performing the simulation. RESULTS: The cohorts had significantly improved scores on the perceived competence (p < .001) and attitude (p < .01) measures following the simulation. Reliability for a new instrument to assess perceived competence in caring for dying patients was also established. CONCLUSION: This study's simulation offers a robust teaching strategy for improving nursing students' attitudes and perceived competence in caring for dying patients.

The Pathway to Developing a Competency-based Tool for Entry-level Nursing Simulation: A Delphi Study.

BACKGROUND: Simulation-based learning experiences allow undergraduate nursing students to develop competence and confidence through deliberate practice with immediate feedback on the learner's performance through debriefing. With the transition to competency-based nursing education, nursing faculty need more guidance in implementing competency-based evaluations in the simulation setting. PURPOSE: This Delphi study aims to inform the future development of a competency-based tool - SimComp - based on the American Association of Colleges of Nursing (AACN) Essentials. METHODS: A Delphi framework was used to recruit expert nursing faculty to complete the surveys via an online platform. Data analysis occurred through open-ended questions and quantitative methods to ensure that the responses from expert panelists were used to form the results. RESULTS: After four rounds of this Delphi study, a consensus was achieved on 111 appropriate items for assessing competence in the simulation-based learning environment. CONCLUSION: While further research is warranted, this study provides insight for nursing institutions considering implementing or increasing the use of simulation within their program for competency-based evaluations.

Quality of Care at the End of Life: Applying the Intersection of Race and Gender.

BACKGROUND AND OBJECTIVES: Research on racial and gender disparities in end-of-life care quality has burgeoned over the past few decades, but few studies have incorporated the theory of intersectionality, which posits that membership in 2 or more vulnerable groups may result in increased hardships across the life span. As such, this study aimed to examine the intersectional effect of race and gender on the quality of care received at the end of life among older adults. RESEARCH DESIGN AND METHODS: Data were derived from the combined Round 3 to Round 10 of the National Health and Aging Trends Study. For multivariate analyses, 2 logistic regression models were run; Model 1 included the main effects of race and gender and Model 2 included an interaction term for race and gender. RESULTS: Results revealed that White men were the most likely to have excellent or good care at the end of life, followed by White women, Black men, and Black women, who were the least likely to have excellent or good care at the end of life. DISCUSSION AND IMPLICATIONS: These results point to a significant disadvantage for Black women, who had worse end-of-life care quality than their gender and racial peers. Practice interventions may include cultural humility training and a cultural match between patients and providers. From a policy standpoint, a universal health insurance plan would reduce the gap in end-of-life service access and quality for Black women, who are less likely to have supplemental health care coverage.

Instruments for Evaluating Student Learning Outcomes in Palliative Care: A Literature Review.

Primary palliative care is a core component of nursing practice for which all students must receive formal education. Through competency-based education, nursing students develop the knowledge, attitudes, and skills to deliver quality primary palliative care before they transition to practice. Nurse educators in academic and practice settings should use reliable and valid means to evaluate student learning across cognitive, affective, and psychomotor domains. Expert faculty conducted a literature review to identify published instruments that evaluate primary palliative care student learning outcomes. Selected articles were required to include instrument reliability, validity, or both. The literature search yielded 20 articles that report on the development and testing of 21 instruments. Findings are organized into 3 learning domains that encompass 5 outcomes. Four instruments assess knowledge within the cognitive domain. In the affective domain, 3 instruments assess attitudes about caring for seriously ill or dying patients, 7 assess attitudes about death, and 5 assess self-efficacy. Competence and competency are evaluated in the psychomotor domain with 4 tools. Instrument implementation considerations within each domain are discussed. Faculty are encouraged to use robust evaluation measures such as those identified in the literature review to measure primary palliative care learning outcomes within a competency-based education framework.

A randomised controlled trial of the Learning Skills Together (LST) intervention to improve dementia family caregivers' self-efficacy with complex care.

BACKGROUND: Nearly two-thirds of family caregivers of persons living with Alzheimer's disease or related dementias (AD/ADRD) provide complex care, including medical care. Family caregivers typically receive little to no training on how to provide this care. Furthermore, family caregivers simultaneously grapple with the presence of behavioral and psychological symptoms of dementia (BPSD), diminished communication abilities, and comorbidities such as diabetes. We developed Learning Skills Together (LST), a 6-week digitally delivered psychoeducational program, to facilitate family caregiver abilities to administer complex care tasks. The goal of the present study is to test the efficacy of LST and to reduce adverse outcomes associated with caregiving, such as depressive symptomology and negative appraisal of BPSD. METHODS: To test the efficacy of LST, we will conduct a two-arm single-site randomized controlled trial (RCT) with N = 200 family caregivers of persons living with AD/ADRD. Eligible family caregivers will be randomly assigned to participate in either the LST intervention or a structurally equivalent control condition focused on healthy living. All family caregivers will complete four surveys, including a baseline survey administered prior to randomization, a post-intervention survey, and a 3- and 6-month follow-up survey to assess change in study outcomes. Between-group comparisons of each outcome will be evaluated using generalized estimating equation models. Mediation analyses will assess family caregiver self-efficacy as the intervention's mechanism of change in depressive symptomology and BPSD. We will also examine caregiver race, ethnicity, and gender as effect modifiers of the intervention. DISCUSSION: LST findings will inform the field of AD/ADRD and caregiving regarding optimally supporting family caregivers in managing complex care tasks. If efficacious, the LST intervention will support family caregivers in preserving their own mental health while providing complex care. TRIAL REGISTRATION: Clinical Trials.gov NCT05846984 . This study was registered on May 6, 2023.

A randomised controlled trial of the Learning Skills Together (LST) intervention to improve dementia family caregivers' self-efficacy with complex care.

Background: Nearly two-thirds of family caregivers of persons living with Alzheimer's disease or related dementias (AD/ADRD) provide complex care, including medical care. Family caregivers typically receive little to no training on how to provide this care. Furthermore, family caregivers simultaneously grapple with the presence of behavioral and psychological symptoms of dementia (BPSD), diminished communication abilities, and comorbidities such as diabetes. We developed Learning Skills Together (LST), a six-week digitally delivered psychoeducational program, to facilitate family caregiver abilities to administer complex care tasks. The goal of the present study is to test the efficacy of LST and to reduce adverse outcomes associated with caregiving, such as depressive symptomology and negative appraisal of BPSD. Methods: To test the efficacy of LST, we will conduct a two-arm single-site randomised controlled trial (RCT) with N = 200 family caregivers of persons living with AD/ADRD. Eligible family caregivers will be randomly assigned to participate in either the LST intervention or a structurally equivalent control condition focused on healthy living. All family caregivers will complete four surveys, including a baseline survey administered prior to randomisation, a post-intervention survey, and a three- and six-month follow-up survey to assess change in study outcomes. Between-group comparisons of each outcome will be evaluated using generalized estimating equation models. Mediation analyses will assess family caregiver self-efficacy as the intervention's mechanism of change in depressive symptomology and BPSD. We will also examine caregiver race, ethnicity, and gender as effect modifiers of the intervention. Discussion: LST findings will inform the field of AD/ADRD and caregiving regarding optimally supporting family caregivers in managing complex care tasks. If efficacious, the LST intervention will support family caregivers in preserving their own mental health while providing complex care.

Unmet palliative care service needs: a patient-centred metric.

OBJECTIVES: Financial pressures and competing demands for limited resources highlight the importance of defining the unmet need for specialty inpatient palliative care (PC), demonstrating the value of the service line and making decisions about staffing. One measure of access to specialty PC is penetration, the percentage of hospitalised adults receiving PC consultations. Although useful, additional means of quantifying programme performance are required for evaluating access by patients who would benefit. The study sought to define a simplified method of calculating unmet need for inpatient PC. METHODS: This retrospective observational study analysed electronic health records from six hospitals in one health system in Los Angeles County.Unmet need for PC was defined by the number of hospitalised patients with four or more chronic serious comorbidities without a PC consultation divided by a denominator of all patients with one or more chronic serious conditions (CSCs) without a PC during the hospitalisation. RESULTS: This calculation identified a subset of patients with four or more CSCs that accounts for 10.3% of the population of adults with one or more CSCs who did not receive PC services during a hospitalisation (unmet need). Monthly internal reporting of this metric led to significant PC programme expansion with an increase in average penetration for the six hospitals from 5.9% in 2017 to 11.2% in 2021. CONCLUSIONS: Health system leadership can benefit from quantifying the need for specialty PC among seriously ill inpatients. This anticipated measure of unmet need is a quality indicator that complements existing metrics.

Affirmative Palliative Care for Transgender and Gender Nonconforming Individuals.

ABSTRACT: Nurses have a professional and ethical responsibility to provide inclusive, affirmative palliative care to transgender and gender nonconforming (TGNC) individuals experiencing life-limiting illness or injury. In accordance with standards for professional nursing and health organizations, nurses must continue to take tangible steps to achieve a level of care that is affirming, holistic, nonprejudicial, and collaborative. Providing quality care for TGNC individuals requires informed, competent integration of palliative nursing care, gender-affirmative care, and trans-person-centered health care within nursing practice. An interdisciplinary national team of experts collaborated to identify ways nurses could better uphold their professional responsibilities to TGNC individuals with serious illness. The purposes of this article are to: 1) describe elements of TGNC-inclusive palliative nursing care; and 2) present eight concrete recommendations to achieve affirmative clinical practice for TGNC patients living with life-limiting illness and their family of origin and/or family of choice. These recommendations address professional development, communication, medication reconciliation, mental health, dignity and meaning, social support and caregivers, spiritual beliefs and religion, and bereavement care.

Vicarious learning and communication self-efficacy: A pediatric end-of-life simulation for pre-licensure nursing students.

BACKGROUND: End-of-life clinical experiences, particularly in pediatrics, are quite limited for pre-licensure nursing students. Though effective, end-of-life simulations can be costly, require facilitators trained in palliative and end-of-life care, and are restricted by limited space and time availability. Such barriers prompt the question as to whether there is an effective alternative to simulation by which students can gain improved self-efficacy in therapeutic communication during pediatric end-of-life situations. PURPOSE: Bandura's Social Cognitive Theory and work exploring self-efficacy posits that vicarious learning provides learners opportunities to gain experience and knowledge through observation of peers in simulated settings. This study evaluated the effectiveness of vicarious versus active learning on pre-licensure nursing students' perceived self-efficacy in providing therapeutic communication during a pediatric end-of-life situation. METHOD: Data were collected over three time points - pre-simulation, post-simulation, and post-debriefing - using a modified Self-Efficacy in Communication Scale. RESULTS: Learners in both groups had significant improvement in self-efficacy across all time points. Only two items had significant differences between vicarious and active learner groups, but the effect was minor. CONCLUSION: Vicarious learning presents as a viable pedagogical approach for providing pre-licensure nursing students important learning opportunities related to pediatric end-of-life simulations during both the scenario and debriefing.

Updated palliative care competencies for entry-to-practice and advanced-level nursing students: New resources for nursing faculty.

American Association of Colleges of Nursing's Essentials: Core Concepts for Professional Nursing Education (2021) established four spheres of care across the lifespan with diverse populations, one of which is hospice/palliative/supportive care. A team of palliative nursing leaders and nurse educators sought to evaluate alignment of the new Essentials with existing palliative care competency statements. The rigorous process resulted in the revision of these palliative care competency statements to align with the new Essentials more accurately. The second edition of the Competencies And Recommendations for Educating nursing Students (CARES) reflect updated palliative care expectations for entry-to-practice nursing students. Similarly, second edition Graduate Competencies And Recommendations for Educating nursing Students (G-CARES) statements describe advanced-level student competency. The team also aligned CARES/G-CARES (2nd ed.) with the Domains, Competencies, Sub-Competencies, and Concepts of the new Essentials. The updated palliative care competency statements can guide faculty in integrating palliative care education into their programs and assessing alignment of programmatic outcomes with AACN's Essentials hospice/palliative/supportive care sphere of care.

Nursing Student Perceptions of End-of-Life Communication Competence: A Qualitative Descriptive Study.

Effective communication skills are required when nurses care for patients and their families navigating life-limiting illness and the end of life. Educators have made great strides in integrating end-of-life content into prelicensure curricula. It is critical to evaluate nursing students' perceptions of their communication skills to empirically guide the development and implementation of future education interventions. The purpose of this qualitative descriptive study was to explore nursing students' perceptions of their verbal and nonverbal communication competence when providing end-of-life care. Students participated in an established high-fidelity simulation focused on difficult end-of-life conversations. Students explored their perceptions during postsimulation debriefing sessions. Colaizzi's method guided thematic analysis of the audio-recorded debriefings. One major theme emerged from the data: delivering bad news is difficult. Four subthemes further described this theme and its components: (1) reflecting on communication at end of life, (2) feeling uncomfortable, (3) calling for more exposure to end-of-life communication, and (4) fostering a supportive environment for patients and families. Results indicate that nursing students had anxiety and discomfort when engaging in end-of-life conversations. These findings support increased investments in additional training interventions to facilitate the development of student competence in end-of-life communication prior to entering the professional workforce.

Integrating the ELNEC undergraduate curriculum into Nursing Education: Lessons learned.

Nurses are called to lead and transform palliative care, compelling nurse educators to provide the requisite education to do so. All nursing students need to learn primary palliative care to be prepared to care for the growing number of patients with serious illness and their families. The American Association of Colleges of Nursing (AACN) Competencies And Recommendations for Educating nursing Students (CARES) document outlines 17 palliative care competencies to be attained by graduation from their pre-licensure programs. Integrating standardized primary palliative care education into curriculum remains a challenge for nurse educators. The End of Life Nursing Education Consortium (ELNEC) Undergraduate online modules represent one educational strategy that supports faculty and students in meeting AACN competencies as well as other national guidelines for palliative care education. Despite its ease of use, only about 25% of all undergraduate programs are incorporating these into their programs. Faculty continue to report barriers to implementing palliative care education, including saturated curricula, limited content expertise, and cost. This paper describes lessons learned from palliative care champion nursing schools to help overcome these barriers.

Caring for an Unconscious Transgender Patient at the End of Life: Ethical Considerations and Implications.

Individuals who identify as transgender (trans) or other gender-diverse identities are highly marginalized populations within the United States health care system. Transgender individuals experience a broad range of health disparities leading to devastating health outcomes. Experiences with discrimination and biased care often result in a lack of trust in providers and reduced care seeking, yet providers frequently rely on communication with trans patients to build competence. Consequently, when a trans patient has restricted communication, whether due to biological or psychological reasons, their care can be further disrupted. The nursing code of ethics compels the provision of competent care to all patients, regardless of demographics or gender identity, including individuals with serious illness and injury. This article describes an approach to the provision of affirmative, trans-inclusive care in a palliative nursing context that integrates cultural humility and self-reflection into an established patient care framework. The approach is then applied to identify ethical dilemmas present in the case of a trans patient who arrived at a hospital in an unconscious state following serious injury. Nurses' use of the ethical approach when caring for seriously ill trans patients would represent important progress toward fostering a health care system that provides affirmative, trans-inclusive care.

Development of a New Measure to Assess Primary Palliative Care Perceived Competence.

BACKGROUND: Many nursing schools have begun to address the gap in palliative care education. Recently released entry-to-practice competencies in palliative care can guide educators as they incorporate such material into their curriculum. In an effort to evaluate learning, educators need a reliable instrument that aligns with the updated competencies. PURPOSE: This article describes the development of a new instrument to evaluate perceived competence to provide primary palliative care. METHODS: The psychometric properties and performance of the new instrument in evaluating perceived competence were tested via an interprofessional palliative care simulation with medical, nursing, and social work students. Perceived competence was measured before and after the simulation. RESULTS: The new instrument demonstrates strong reliability and validity, represents a unidimensional construct, and captures changes in perceived competence across time and disciplines. CONCLUSIONS: The new instrument is acceptable for assessing perceived competence to provide palliative care, particularly for nursing students.

Development of a new undergraduate palliative care knowledge measure.

Compassionate, competent, and holistic care is at the core of palliative care nursing. Knowledge of primary palliative care concepts is a fundamental expectation of graduating nursing students. The release of updated national educational competencies in palliative care coupled with a new palliative care curriculum for prelicensure nursing students created a need to measure acquisition of new knowledge. The purpose of this paper is to describe development and psychometric evaluation of a new palliative care measure. Development of the new measure was guided by an expert team of palliative care educators, incorporating existing knowledge measures as well as content from the newly developed curriculum. A 4-step process resulted in development of a 27-item measure reflecting the 17 new core competencies for undergraduate palliative care education. Initial pilot testing in a sample of 262 nursing students demonstrated good internal consistency (Cronbach's α = 0.70), with a 2-factor model that aligns with multiple national expectations for primary palliative care. This study is the first to align knowledge items with national palliative care competencies and care domains. Further psychometric testing will be conducted as well as large multisite research collaborations to test curriculum implementation and use this knowledge measure in prelicensure nursing education.