The American journal of hospice & palliative care最新文献

Objectives: Perceptions towards advanced care planning (ACP) amongst individuals with Ischemic Heart Disease before or after a life-threatening Acute Myocardial Infarction event is underexamined and could impact the appropriate timing for ACP advocacy. This cross-sectional study assessed awareness and intentions regarding ACP in individuals with Ischemic Heart Disease, both before and after an Acute Myocardial Infarction, and explored the motivating effect of a near-fatal Acute Myocardial Infarction event on its engagement.

Methods: This study was conducted from 24 August 2021 through 13 March 2023, whereby patients were administered a one-time questionnaire with no follow-up required. Patients with either chronic Ischemic Heart Disease (group A) or a recent Acute Myocardial Infarction event (group B) were recruited from the outpatient National University Heart Centre, Singapore.

Results: 101 patients (n = 51 for Group A, n = 50 for Group B) were recruited. Mean age (SD) was 59 (10.5) years and 84 were male (83.2%). Between both groups, patients in group B reported significantly higher scores on 'Lack of information' and 'Self-efficacy' domains, and had no ACP awareness nor plans of doing an ACP compared to group A. ACP awareness was the sole significant predictor of intentions of doing an ACP in the final regression model (P < .05).

Conclusions: Interestingly, this study suggests that surviving a potentially life-threatening heart condition did not result in higher intention of doing an ACP. Thus, advocacy of ACP in the community should simply start by raising awareness levels widely and may not need to be focused on individuals' state of health.

Background: Analysis of documented Serious Illness Conversations (SICs) in the inpatient setting can help clinicians align management to address patient and caregiver needs.

Methods: We conducted a mixed methods analysis of the first instance of standardized documentation of a SIC within a structured module among hospitalized general medicine patients from 2018 to 2019. Percentage of documentations that included a description of patient or family understanding of the patient's medical condition and use of radio buttons to answer the "prognostic information shared," "hopes," and "worries" modules are reported. Using grounded theory approach, physicians analyzed free text entries to: "What is important to the patient/family?" and "Recommendations or next steps planned."

Results: Out of 5142 patients, 59 patients had a documented SIC. Patient or family understanding of the medical condition(s) was reported in 56 (95%). For "prognostic information shared," the most frequently selected radio buttons were: 49 (83%) incurable disease and 28 (48%) prognosis of weeks to months while those for "hopes" were: 52 (88%) be comfortable and 27 (46%) be at home and for "worries" were: 49 (83%) other physical suffering and 36 (61%) pain. Themes generated from entries to "What's important to patient/family?" included being with loved ones; comfort; mentally and physically present; and reliable care while those for "Recommendations" were coordinating support services; symptom management; and support and communication.

Conclusions: SIC content indicated concern about pain and reliable care suggesting the complex, intensive nature of caring for seriously ill patients and the need to consider SICs earlier in the life course of patients.

Palliative care is directed to relieve the symptoms of serious and life-threatening illnesses. Unfortunately, it's usually provided lately in the disease course in developing countries due to a lack of awareness about its concept, which deprives many patients of its benefits. This study aims to investigate the knowledge and attitude of the Jordanian general public toward palliative care. A cross-sectional study was conducted using an electronic questionnaire via social media platforms. Knowledge about palliative care was measured using the "Palliative Care Knowledge Scale" (PaCKS), whereas the attitude was measured using an edited version of the "Frommelt Attitudes Toward Care of the Dying -B(FATCOD-B)" tool. The inclusion criteria were adults older than 18 years old who live in Jordan. Any subject who was younger than 18 years old, refused to give informed consent, and working or studying in a healthcare-related profession was excluded. 329 respondents filled out the survey (females = 214 (65%), mean age = 32.7 ± (13.63) years). Only 67 respondents (20.4%) heard about palliative care previously. The average knowledge score (out of 13) was 6.8 (±4.2). The average attitude score (out of 5) was 3.0 (±.4). Higher knowledge self-evaluation, older age, and higher income were factors associated with a higher level of knowledge and favorable attitude toward palliative care. Our study showed a moderate knowledge and neutral attitude toward palliative care. Further awareness campaigns should be conducted to raise the awareness of the Jordanian society regarding the objectives of palliative care.

Background: Sufficient knowledge of end-of-life care, positive attitudes, and emotions regarding death and dying are essential criteria for showcasing favorable palliative care educational results to undergraduate nursing students. However, nursing students have negative attitudes toward end-of-life care and know little about it.

Aim: This study aimed to examine the effect of a repeated standardized patient-based training program (intervention) on nursing students' knowledge, attitudes, and emotions about end-of-life patients.

Method: This study adopted a pretest-posttest quasi-experimental research design. The sample consisted of 50 fourth-year nursing students divided into intervention (n = 25) and control (n = 25) groups. All participants attended the intervention. The intervention group attended the intervention twice, while the control group attended it only once. Data were collected using a personal information form, the Frommelt Attitudes Toward Care of the Dying Scale, the Positive and Negative Affect Schedule, and the End-of-Life Care Nursing Questionnaire. The data were analyzed using descriptive statistics, Pearson's Chi-square test, dependent groups t test, Pearson-Spearman, Mann-Whitney test, Wilcoxon test, and Friedman test.

Results: The intervention helped participants learn more about end-of-life care (χ2 = 27.167, P = .000; F = 42.725, P = .000) and develop more positive attitudes toward end-of-life patients (F = 13.279, P = .000; F = 6.934, P = .000). The intervention also helped participants develop communication skills.

Conclusion: Universities should integrate repeated standardized patient-based into nursing curricula.

Background: Music therapy (MT) offers benefits of improved symptom relief and quality of life at the end of life, but its impact on hospice patients and caregivers needs more research. Objective: To assess the impact of MT intervention on symptom burden and well-being of hospice patients and caregivers. Methods: A total of 18 hospice patients, selected based on scores ≥4 on the revised Edmonton Symptom Assessment System (ESAS-r) items on pain, depression, anxiety, or well-being, participated in MT sessions provided by a board-certified music therapist. Over a period of 2-3 weeks, 3-4 MT sessions were conducted for each. Patient Quality of life (QOL) was assessed using the Linear Analogue Self-Assessment (LASA). Depression and anxiety were measured with the Patient Health Questionnaire-4 (PHQ-4). For the 7 caregivers enrolled, stress levels were measured using the Pearlin role overload measure and LASA. Results: Patients reported a reduction in symptom severity and emotional distress and an increase in QOL. All patients endorsed satisfaction with music therapy, describing it as particularly beneficial for stress relief, relaxation, spiritual support, emotional support, and well-being. Scores on overall QOL and stress were worse for caregivers. Conclusion: This study provides evidence that MT reduces symptom burden and enhances the quality of life for hospice patients. Hospice patients and their caregivers endorsed satisfaction with MT. Given the benefits observed, integrating MT into hospice care regimens could potentially improve patient and caregiver outcomes. Larger studies should be conducted to better assess the impact of MT in this population.

Introduction: Over the past 20 years, palliative care in the United States has grown significantly. Yet, access to and/or engagement with palliative care for minoritized persons with serious illness remains limited. In addition, the focus of palliative and end-of-life care research has not historically focused on equity-informed intervention development that collaborates directly with minoritized populations. Equity-informed interventions within palliative and end-of-life care research have the potential to champion collaborations with persons with serious illness and their families to mitigate health inequities. The purpose of this scoping review was to examine and describe the literature on the approaches used in the design and development of palliative and end-of-life care interventions with minoritized populations with serious illness.

Methods: The Joanna Briggs Institute methodology for scoping reviews was followed for tracking and reporting purposes. Included articles were described quantitatively and analyzed qualitatively with content analysis.

Results: Thirty-seven articles met the inclusion criteria: eight used quantitative methods, eight used qualitative methods, ten reported a community-based participatory research method, nine used mixed-methods, and two had research designs that could not be determined. The qualitative analysis revealed three themes: (1) stakeholder involvement and feedback, (2) intervention focus, and (3) target intervention population (population vs healthcare clinician).

Conclusions: Using an equity-informed research approach is vital to improve palliative and end-of-life care interventions for minoritized communities with serious illness. There is also a need for more robust publishing guidelines related to community-based participatory research methods to ensure publication consistency among research teams that employ this complex research method.

Context: Health inequities in Hispanic populations require community-engaged solutions. Engaging Hispanic communities in research related to advance care planning (ACP) is critical to inform the development and evaluation of culturally appropriate interventions.

Objectives: To understand how to best adapt and implement Spanish-language ACP interventions in Hispanic communities across the US.

Methods: We apply the Framework for Reporting Adaptations and Modifications to Evidence-based Interventions (FRAME) to detail experiences during implementation of the national Project Talk Trial (PTT) that delivers two ACP interventions using a community-based delivery model. Semi-structured interviews with Hispanic community event hosts and research assistants (RAs) were conducted to explore challenges and solutions to implementation. Thematic analysis was applied to transcripts.

Results: Three themes from the community hosts (n = 9) were: (1) certified translation professional services were inadequate to successfully adapt interventions for diverse Hispanic communities; (2) a lack of Spanish-speaking RAs undermined the intention to address health inequities in the research; and (3) cultural norms, such as RSVP systems, differ in Hispanic populations. Themes from the RA interviews (n = 7) include: (1) discomfort with being unable to communicate appropriately with the research participants; and (2) improved connection and event flow when bilingual RAs attended events.

Conclusion: Our work highlights the value of a strong community-based delivery model, attention to local dialects and cultural nuances, the need for Spanish-speaking workforce and for balancing fidelity across national sites with adaptability when conducting rigorous research.

Trial registered: The trial titled "Engaging underserved communities in end-of-life conversations: a cluster, randomized controlled trial" is registered at clinicaltrials.gov [NCT04612738].

Background: Advanced cancer severely impacts the lives of patients as well as their caregivers and loved ones. The burden of the caregiver role often results in significant distress, especially near the end of life. Identifying ways to support patients and caregivers is an important focus of palliative care.

Objectives: To report two cases depicting the negative impact of caregiver distress on patient care and end-of-life decision-making, requiring the collaboration of an interdisciplinary team. The cases outline interdisciplinary approaches to patient and caregiver support during this transition.

Conclusions: Medical facilities providing cancer care should have structures and processes capable of assessing and managing caregiver distress. Interdisciplinary teams are needed to identify a process of supporting caregivers to minimize negative impacts of emotional dysregulation on patients, their caregivers, and staff.

Background: Prior research has shown that advance care planning (ACP) knowledge and discussion varies among racial and ethnic groups. However, little is known if similar disparities exist within the sexual minority (SM) population. Objectives: To investigate racial disparities in ACP knowledge, discussion, and decision making within the SM population. Methods: Data from an online survey (N = 281) asked Black and White SM adults ages 50+ about their knowledge and actions about future healthcare wishes and their healthcare experiences. A series of multivariable logistic regressions were conducted to examine the association between ACP knowledge, discussion, and medical decision-making and race, while adjusting for other demographic and health-related variables. Results: On average, respondents were 57 years old (SD = 6.04) and just over half identified as being White (52%) and as men (55%). Most participants had heard of ACP (74%) and had an ACP discussion with someone (65%). Sixty-six percent of participants were very comfortable with medical decision-making. White SM adults had higher odds of having ACP knowledge (aOR = 3.56; 95% CI = 1.78, 7.07) and discussions (aOR = 2.43; 95% CI = 1.28, 4.61). While no racial differences were found in comfort with medical decision-making, other sociodemographics were significantly associated with comfort with medical decision-making. Conclusion: Outcomes from this work indicate persistent racial disparities in ACP within the SM population in addition to highlighting other factors that influence ACP. These findings emphasize the need for resources to address this systemic issues and to ensure that SM adults have access to and engage in ACP.

Background: Patients with primary brain tumors navigate a distinct illness trajectory, characterized by an uncertain prognosis, a rapid decline in physical functioning, and a significant deterioration in the quality of life. These unique challenges underscore the importance of our research in understanding and addressing the needs of these patients. Methods: The EORTC QLQ C30 & EORTC BN 20 questionnaires assessed the quality of life and symptom burden in patients with primary brain tumors. The scores were analyzed using SPSS statistical software. Results: 100 patients - 61 males and 39 females-were included with radiological or histopathological diagnoses of primary brain tumours. Seizures (38%) was the most common presenting symptom, followed by headache (18%), loss of consciousness (13%), focal neurological deficit (9%), and blurring of vision (8%). The mean quality of life at baseline was 78.29, with a standard deviation of 9.67 on a scale of 0 to 100, and the brain tumor-specific symptom burden score was 46.9, with a standard deviation of 17.95 on a scale of 0 to 100. There was a significant difference in the global health status score between the first and third visits at 3 months (P value = .03). Conclusion: Despite the aggressive and often incurable nature of primary brain tumors, there is hope in the form of palliative care. By addressing unmet symptoms, uncertainties about the future, and social functioning, palliative care can significantly improve the quality of life of these patients.