Perspectives from patients with chronic lung disease on a telehealth-facilitated integrated palliative care model: a qualitative content analysis study.

BACKGROUND: Chronic lung disease affects nearly 37 million Americans and often results in significant quality of life impairment and healthcare burden. Despite guidelines calling for palliative care (PC) integration into pulmonary care as a vital part of chronic lung disease management, existing PC models have limited access and lack scalability. Use of telehealth to provide PC offers a potential solution to these barriers. This study explored perceptions of patients with chronic lung disease regarding a telehealth integrated palliative care (TIPC) model, with plans to use findings to inform development of an intervention protocol for future testing. METHODS: For this qualitative study, we conducted semi-structured interviews between June 2021- December 2021 with patients with advanced chronic lung disease. Interviews explored experiences with chronic lung disease, understanding of PC, and perceived acceptability of the proposed model along with anticipated facilitators and barriers of the TIPC model. We analyzed findings with a content analysis approach. RESULTS: We completed 20 interviews, with two that included both a patient and caregiver together due to patient preference. Perceptions were primarily related to three categories: burden of chronic lung disease, pre-conceived understanding of PC, and perspective on the proposed TIPC model. Analysis revealed a high level of disease burden related to chronic lung disease and its impact on day-to-day functioning. Although PC was not well understood, the TIPC model using a shared care planning approach via telehealth was seen by most as an acceptable addition to their chronic lung disease care. CONCLUSIONS: These findings emphasize the need for a patient-centered, shared care planning approach in chronic lung disease. The TIPC model may be one option that may be acceptable to individuals with chronic lung disease. Future work includes using findings to refine our TIPC model and conducting pilot testing to assess acceptability and utility of the model.

Palliating Serious Illness During Disasters and Public Health Emergencies.

ABSTRACT: The increase in disasters and public health emergencies in recent years is a serious public health concern. The needs of suffering victims can be multifaceted, particularly the needs of those who are from systematically marginalized populations. Palliative care nurses play a vital role in mitigating the suffering of those affected by these events. Despite the acute need, there is a lack of nurses who specialize in hospice and palliative care and generalist nurses are not sufficiently prepared to provide palliative care during disasters and public health emergencies. Nurses and nursing students should use national and global resources and training opportunities to hone their palliative care skills as well as learn self-care skills to increase their resiliency. Outcomes from research and collaborative efforts should be used to educate the future nursing workforce and advocate for equitable delivery of quality palliative care for all people who are affected by disasters and public health emergencies.

mHealth Interventions to Improve the Breast Cancer Continuum of Care from Prevention to Survivorship of Hispanic Women: A Scoping Review.

BACKGROUND: Breast cancer is the leading cause of cancer mortality in Hispanic women in the USA. Current interventions to improve breast cancer care include the use of mHealth, but its application in Hispanic women is limited. This scoping review aimed to describe the extent of research literature on the use of mHealth throughout the breast cancer care continuum (prevention, early detection, and treatment) in Hispanic women. METHODS: A scoping review guided by the Arksey and O'Malley methodological framework and the Joanna Briggs Institute scoping review reporting protocol. Literature search of peer-reviewed research articles from 2012 to 2022 in PubMed, Scopus, and CINAHL® was conducted in March and June 2022. RESULTS: Of the 10 articles selected, seven included Hispanic breast cancer survivors and three included Hispanic women at risk for developing breast cancer. Seven articles involved mobile applications and three articles used text messaging and/or cell phone voicemail. Overall, the use of mHealth for breast cancer care in Hispanics was favorable but generalizability was limited given the type of design and small samples. All interventions were tailored to Hispanic culture. CONCLUSION: Scarcity of research on mHealth in Hispanic breast cancer care highlights healthcare disparities in this population. Evidence from this review suggests the use of mHealth to be beneficial to improving breast cancer care in Hispanics, but more research is needed involving randomized clinical trials and larger samples.

The impact of dementia family caregiving on adolescent well-being: A scoping review.

With rates of dementia on the rise and upward trends in multigenerational households, the number of families providing care to persons with dementia is likely to increase. Although caregiver stress in adults has been well-documented, less is known about the impact of dementia family caregiving on adolescents. We conducted a scoping review to assess research on the impact of dementia family caregiving on adolescents. Eight articles representing five studies were identified. Findings suggest that while adolescents developed strategies to cope with the challenges of dementia caregiving, the long-term impact of caregiving on overall well-being has not been well described. Further, research has shown inconsistent findings with studies reporting both improved and strained adolescent relationships. The paucity of research on the impact of dementia family caregiving on the well-being of adolescents is a serious omission given that adolescents are at high-risk for emerging health problems.

The 2023-2026 Hospice and Palliative Nurses Association Research Agenda.

The Hospice and Palliative Nursing Association established the triannual research agenda to ( a ) provide focus for researchers to conduct meaningful scientific and quality improvement initiatives and inform evidence-based practice, ( b ) guide organizational funding, and ( c ) illustrate to other stakeholders the importance of nursing research foci. HPNA Research Agendas are developed to give direction for future research to continue advancing expert care in serious illness and ensure equitable delivery of hospice and palliative care.

Development of an Innovative Interprofessional Palliative Care Student Learning Collaborative.

BACKGROUND: Training all clinicians in primary palliative care has been proposed as one solution to hospice and palliative care workforce challenges. With palliative care's focus on interprofessional practice and collaboration, interprofessional education is optimal to teach foundational palliative care principles. AIM: To develop, pilot, and evaluate an innovative interprofessional primary palliative care student learning collaborative. METHODS: An interprofessional faculty and clinician team developed a semester-long palliative care interprofessional learning collaborative program that was delivered in a hybrid format. The National Consensus Project's Clinical Practice Guidelines for Quality Palliative Care were used as the framework for the program content. Pre-post measures of palliative and end-of-life care-specific educational needs and post-program evaluation were used to evaluate the program. RESULTS: The program was piloted with 25 student participants from 10 health professional programs. Participants reported gains in knowledge post-program participation. Post-program evaluation comments were positive and the interprofessional design was regarded as a strength of the program. CONCLUSION: Incorporating interprofessional learning into a palliative care curriculum may be an effective way to strengthen palliative care teams, as greater exposure to the diverse approaches of each team member can increase the appreciation and understanding of everyone's critical role to play in providing excellent palliative care.

Navigating End-of-Life Needs for a Person With Intellectual Disabilities and Their Caregivers.

People with intellectual disabilities (IDs) are living longer, with many experiencing significant barriers to accessing palliative care and hospice services. Families, caregivers, and direct support professionals comprise essential portions of the community of support often surrounding a person with IDs. For a variety of reasons, including clinician bias and communication difficulties, many people with IDs are excluded from critical conversations regarding their health and life. This article uses a blended case study to explore the complexities and unique considerations in ensuring ethical and practical end-of-life care for people with IDs. Decision-making must center on the person with ID and include them in ways they can understand, thus facilitating their right to autonomy. A collaborative approach to care with shared expertise between caregivers and hospice and palliative care services is key to providing effective, patient-centered care at the end of life. There are tremendous areas of opportunity to improve end-of-life care for this population by partnering with people with IDs, their families, and caregivers.

Perceptions of Clinical Trial Participation in African American Cancer Survivors and Caregivers.

PURPOSE: To explore the perceptions of African American survivors and caregivers about participation in clinical trials. PARTICIPANTS & SETTING: 13 participants were enrolled and participated in one of the focus groups, and 11 participated in two focus groups. METHODOLOGIC APPROACH: A qualitative descriptive study using a community-based participatory research approach. Focus groups guided by Freire's dialogic model explored the perceptions of African American patients with cancer about participation in clinical trials. Focus groups were audio recorded and transcribed. FINDINGS: The analysis identified three main themes. IMPLICATIONS FOR NURSING: The under- representation of African American patients in clinical trials contributes to racial health disparity by negatively affecting health outcomes and quality of care delivered to this population. Oncology nurses are at the forefront of cancer care and in the best position to advocate for individuals with cancer, particularly those who face health inequalities. Findings from this study guided the recommendations.

A scoping review of nurse-led advance care planning.

BACKGROUND: Advance care planning (ACP) supports persons at any age or health status to determine their values, goals, and preferences regarding future medical care. The American Nurses Association endorses nurses to facilitate ACP to promote patient- and family-centered care. PURPOSE: This project reviewed and synthesized literature on nurse-led ACP training models. METHODS: A scoping review used the Arksey and O'Malley Framework to identify: (a) ACP training model type, (b) nurse-led ACP recipients, (c) ACP in special populations, (d) ACP outcomes. FINDINGS: Of 33 articles reviewed, 19 included 11 established models; however, the primary finding was lack of a clearly identified evidence-based nurse-led ACP training model. DISCUSSION: Nurses are integral team members, well positioned to be a bridge of communication between patients and care providers. This is a call to action for nurse leaders, researchers, educators to collaborate to identify and implement an evidence-based, effective nurse-led ACP training model.

The impact of COVID-19 on the hospice and palliative care workforce.

OBJECTIVE: To understand the impact of the COVID-19 pandemic on the hospice and palliative workforce and service delivery. DESIGN AND SAMPLE: This was a cross-sectional survey of 36 hospice and palliative care workforce members representing all United States geographic regions. RESULTS: Most respondents (70%) reported an increase in specific palliative care services as a result of the pandemic. Two thirds (78%) of respondents reported their agency has cared for confirmed COVID-19 patients. Only half reported the agency had access to laboratory facilities for surveillance and detection of outbreaks in both patients and staff (58%) and that the agency could test patients and providers for COVID-19 (55%). Qualitative comments described the impact of the pandemic and resulting social distancing measures on the emotional well-being of patients, families, and staff. CONCLUSIONS: Our findings suggest that the COVID-19 pandemic has strained the palliative and hospice care workforce as it provides increased services at an unprecedented rate to patients and families. The implications of these findings are important for public health nurses who are skilled in disaster management and quickly responding to emergencies. The expertise of public health nurses can be leveraged to support palliative care agencies as they strive to manage the pandemic in the communities they serve.

Hyperactive Terminal Delirium in Hospice Patients: A Retrospective Cohort Study.

Terminal delirium is a common occurrence in patients at the end of life, and its presence is widely accepted as a poor prognostic indicator. The hyperactive subtype is characterized by psychomotor agitation that is distressing to patients, caregivers, and providers. The purpose of this study was to determine whether physical, psychosocial, or spiritual data collected at hospice admission are associated with development of hyperactive terminal delirium. In this retrospective cohort study, 154 patients were assigned to one of two cohorts depending on whether or not they had signs of hyperactive terminal delirium. Hospice admission data from the Hospice Item Set, psychosocial assessment, and spiritual assessment were analyzed using descriptive statistics, inferential statistics, and logistic regression. Although there were no statistically significant relationships among the physical, psychosocial, and spiritual variables and hyperactive terminal delirium, there were some findings that are clinically significant for nurses caring for patients at the end of life. Specifically, this study highlights the importance of ongoing physical, psychosocial, and spiritual assessment throughout the end-of-life trajectory, as well as prompt management of symptoms.

Treatment-related Decisional Conflict, Quality of Life, and Comorbidity in Older Adults with Cancer.

OBJECTIVE: The present study aims to examine the relationships between and among cancer treatment-related decisional conflict, quality of life, and comorbidity in older adults with cancer. METHODS: A convenience sample of 200 older adults was recruited from outpatient medical oncology and radiation oncology practices in the northeastern United States. A cross-sectional, descriptive, correlational study design was used employing a survey method. Survey instruments included the Decisional Conflict scale (DCS) (with five subscales, including informed, values clarity, support, uncertainty, and effective decision); Self-administered comorbidity questionnaire (SCQ); European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (including five function scales, three symptom scales, a global health/quality of life scale, and six single items); and an investigator-developed demographic form. RESULTS: The mean total DCS score was 22.1 (±12.5). The uncertainty subscale had the highest mean of the subscales (29.2 ± 18.2). The mean score for global health status/quality of life was 44.2 (±20.7). The mean score of the SCQ was low (9.6 ± 4.1). Significant positive relationships were identified between decisional conflict and quality of life (P = 0.009) and quality of life and comorbidity (P = 0.001). Multiple linear regression analysis found statistically significant relationships for total decisional conflict score and the five decisional conflict scale subscales. CONCLUSIONS: Results may suggest a relationship between decisional conflict and quality of life, as well as the quality of life and comorbidity. In addition, there are several physical, emotional, and spiritual factors that may positively or negatively impact decisional conflict.