Search

AimsCaregivers of persons living with ventricular assist devices (VADs) are integrally involved in both medical and non-medical care. We sought to understand tasks caregivers perform after surgical recovery, ways the home is adapted for those tasks, and presence of home safety hazards.Methods and resultsWe conducted semi-structured interviews with persons living with a VAD and their caregivers. Pictures were taken of areas in the home where: (i) caregiving activities occurred, (ii) VAD or medical supplies were kept, and (iii) home adaptations were made for VAD care. Pictures were described in written detail and analysed. A qualitative descriptive approach was used for analysis. The sample consisted of 10 dyads, with mostly spousal relationships (60%) between male patients (60%) and female caregivers (80%). Three themes were identified: (i) Evolution of Caregiving and Support: Patients gain independence, but caregivers are still needed, (ii) Adapting the Home Environment: Changes are focused on functional needs, and (iii) Hidden Dangers: Illumination of safety concerns by photographs. Assistance with bathing, driveline care, and medication management were common caregiving tasks. Most home adaptations occurred in the bathroom and bedroom including sleeping recliners, shower chairs, removable shower heads, and hanging hooks to hold VAD equipment. Safety hazards included minimal space for safe ambulation, infection risk, and home-made adaptations to the environment.ConclusionsThese findings describe key home caregiving tasks, home adaptations, and safety concerns that require further education and support. Utilizing pictures may be a feasible method for assessing VAD teaching, caregiving needs, and identifying potential risks.

BACKGROUND: Vital components of communicating goals of care and preferences include eliciting the patient and caregivers definition of quality of life, understanding meaningful activities and relationships, and exploring wishes for care at the end of life. Although current literature suggests framing conversations regarding end of life through the lens of meaning and quality of life, there is limited literature exploring dyadic congruence surrounding these important constructs among patients with ventricular assist devices (VADs) and their caregivers. OBJECTIVES: The purpose of this study was to explore congruence of VAD patient and caregiver perspectives regarding end of life, definitions of quality of life, and meaning in life while managing the uncertainty of living with a VAD. METHODS: We used thematic analysis to analyze semistructured qualitative interviews of 10 patient-caregiver dyads 3 to 12 months after VAD implantation. RESULTS: Three major themes were identified: (1) differing trajectories of uncertainty and worry, (2) a spectrum of end-of-life perspectives, and (3) enjoying everyday moments and independence. Overall, patients and caregivers had differing perspectives regarding uncertainty and end of life. Within-dyad congruence was most evident as dyads discussed definitions of meaning or quality of life. CONCLUSIONS: Dyadic perspectives on end of life, meaning in life, and quality of life can inform how palliative care and VAD teams approach conversations about planning for the end of life. Findings from this study can inform future shared decision-making interventions for patients living with VADs and their caregivers.

Background: Palliative care demands in the United States are growing amid a comparatively small workforce of palliative care clinicians and researchers. Therefore, determining research and clinical practice priorities is essential for streamlining initiatives to advance palliative care science and practice. Objectives: To identify and rank palliative care research and clinical practice priority areas through expert consensus. Design: Using a modified Delphi method, U.S. palliative care experts identified and ranked priority areas in palliative care research and clinical practice. Priorities were thematically grouped and analyzed for topic content and frequency; univariate analysis used the median of each priority item ranking, with a cutoff median of ≤8 indicating >76% agreement for an item's ranking. Results: In total, 27 interdisciplinary pediatric and adult palliative care experts representing 19 different academic institutions and medical centers participated in the preliminary survey and the first Delphi round, and 22 participated in the second Delphi round. The preliminary survey generated 78 initial topics, which were developed into 22 priority areas during the consensus meeting. The top five priorities were (1) access to palliative care, (2) equity in palliative care, (3) adequate financing of palliative care, (4) provision of palliative care in primary care settings, and (5) palliative care workforce challenges. Conclusions: These expert-identified priority areas provide guidance for researchers and practitioners to develop innovative models, policies, and interventions, thereby enriching the quality of life for those requiring palliative care services. [ABSTRACT FROM AUTHOR]

PURPOSE To perform a mixed methods review to evaluate the effectiveness and implementation of models for integrating palliative care into ambulatory care for US adults with noncancer serious chronic illness. METHODS We searched 3 electronic databases from January 2000 to May 2020 and included qualitative, mixed methods studies and randomized and nonrandomized controlled trials. For each study, 2 reviewers abstracted data and independently assessed for quality. We conducted meta-analyses as appropriate and graded strength of evidence (SOE) for quantitative outcomes. RESULTS Quantitative analysis included 14 studies of 2,934 patients. Compared to usual care, models evaluated were not more effective for improving patient health-related quality of life (HRQOL) (standardized mean difference [SMD] of 4 of 8 studies, 0.19; 95% CI, -0.03 to 0.41) (SOE: moderate) or for patient depressive symptom scores (SMD of 3 of 9 studies, -0.09; 95% CI, -0.35 to 0.15) (SOE: moderate). Models might have little to no effect on patient satisfaction (SOE: low) but were more effective for increasing advance directive (AD) documentation (relative risk, 1.52; 95% CI, 1.35 to 1.94) (SOE: moderate). Qualitative analysis included 5 studies of 145 patients. Patient preferences for appropriate timing of palliative care varied; costs, additional visits, and travel were considered barriers to implementation. CONCLUSION Models might have little to no effect on decreasing overall symptom burden and were not more effective than usual care for improving HRQOL or depressive symptom scores but were more effective for increasing AD documentation. Additional research should focus on identifying and addressing characteristics and implementation factors critical to integrating models to improve ambulatory, patient-centered outcomes. Key words: palliative care; ambulatory care; mixed methods review; meta-analysis, INTRODUCTION In the United States, most care for adults with noncancer serious chronic illness occurs in ambulatory settings, particularly in clinicians' offices. Populations with serious chronic illness and conditions include, [...]

Caregivers of persons with heart failure (HF) navigate complex care plans, yet support strategies often focus solely on meeting the needs of patients. We conducted a randomized waitlist control trial (N = 38) to test the feasibility and gauge initial effect size of the Caregiver Support intervention on quality of life, caregiver burden, and self-efficacy among HF caregivers. The intervention includes up to five remote, nurse-facilitated sessions. Components address: holistic caregiver assessment, life purpose, action planning, resources, and future planning. Caregivers were 93.3% female, 60% White, and 63.3% spouses. Average age was 59.4. Participants who completed the intervention reported high satisfaction and acceptability of activities. Between-group effect sizes at 16 and 32 weeks suggest improvement in quality of life (mental health) (.88; 1.08), caregiver burden (.31;.37), and self-efficacy (.63;.74). Caregivers found Caregiver Support acceptable and feasible. Findings contribute evidence that this intervention can enhance caregiver outcomes. Clinicaltrials.gov Identifier NCT04090749. [ABSTRACT FROM AUTHOR]

Physical frailty is emerging as a potential "trigger" for palliative care (PC) consultation, but the PC needs of physically frail persons with heart failure (HF) in the outpatient setting have not been well described. This study describes the PC needs of community dwelling, physically frail persons with HF. We included persons with HF ≥50 years old who experienced ≥ 1 hospitalization in the prior year and excluded those with moderate/severe cognitive impairment, hospice patients, or non-English speaking persons. Measures included the FRAIL scale (0–5: 0 = robust, 1–2 = prefrail, 3–5 = frail) and the Integrated Palliative Outcome Scale (IPOS) (17 items, score 0–68; higher score = higher PC needs). Multiple linear regression tested the association between frailty group and palliative care needs. Participants (N = 286) had a mean age of 68 (range 50–92) were majority male (63%) and White (68%) and averaged two hospitalizations annually. Most were physically frail (44%) or prefrail (41%). Mean PC needs (IPOS) score was 19.7 (range 0–58). On average, participants reported 5.86 (SD 4.28) PC needs affecting them moderately, severely, or overwhelmingly in the last week. Patient-perceived family/friend anxiety (58%) weakness/lack of energy (58%), and shortness of breath (47%) were the most prevalent needs. Frail participants had higher mean PC needs score (26) than prefrail (16, P < 0.001) or robust participants (11, P < 0.001). Frail participants experienced an average of 8.32 (SD 3.72) moderate/severe/overwhelming needs compared to prefrail (4.56, SD 3.77) and robust (2.39, SD 2.91) participants (P < 0.001). Frail participants reported higher prevalence of weakness/lack of energy (83%), shortness of breath (66%), and family/friend anxiety (69%) than prefrail (48%, 39%, 54%) or robust (13%, 14%, 35%) participants (P < 0.001). Physically frail people with HF have higher unmet PC needs than those who are nonfrail. Implementing PC needs and frailty assessments may help identify vulnerable patients with unmet needs requiring further assessment and follow-up. [ABSTRACT FROM AUTHOR]

1. Describe the content delivered in the nurse and social worker palliative telecare team intervention. 2. Summarize the most common recommendations provided by the collaborative care team in the ADAPT intervention. A nurse and social worker palliative telecare team provided structured symptom management, psychosocial care, and individualized medical changes to improve quality of life, depression, and anxiety for patients with COPD, HF, and ILD. In a multi-site RCT, a nurse and social worker palliative telecare team (ADAPT) improved quality of life, disease-specific health status, depression, and anxiety among patients with COPD, HF, and ILD. Understanding intervention content and processes will help with implementation in different contexts. To summarize the content and processes of the core components of the ADAPT intervention as it was delivered. Intervention processes were prospectively tracked. We used descriptive statistics to examine the 3 intervention components: 1) symptom care by a registered nurse (RN), 2) psychosocial care by a social worker (SW), and 3) weekly interdisciplinary collaborative care team (CCT) meetings, including the RN, SW, an internist, a palliative care specialist, and as needed cardiologist and pulmonologist, to make recommendations (many of which were subject to approval by participant's primary care clinician) to improve patient quality of life. Participants (n=153) averaged 8.6 (SD 2.9) visits with the RN, with mean visit length of 42.1 minutes (SD 23.7). Participants averaged 7.3 (SD 2.26) visits with the SW, with mean visit length of 46.4 (SD 22.1) minutes. Over half of the visits (56.2%) were joint visits with both the SW and the RN. 76.5% (n=117) completed all required social work and nurse visits. The CCT discussed each participant an average of 3.7 (SD 1.8) times and made 7 (SD 3.8) recommendations per participant. Of 148 participants who received a recommendation from the CCT, 79.7% (n=118) of participants received a consult recommendation (e.g., mental health, sleep clinic, cardiac/pulmonary clinic), 63.5% (n=94) received a recommendation related to achieving the participant's selected goal (e.g. increase physical activity, start using CPAP consistently) 58.1% (n=86) a medication addition, 33.1% (n=49) had a test ordered, 31.8% (n=47) a medication changed, 21.6% (n=32) lab ordered, 21% (n=31) received a handout (e.g. CPAP education, community resources, advanced care planning), and 15.5% (n=23) had a medication discontinued. Most participants completed all RN and SW visits, over half of which were RN and SW joint visits. CCT recommendations were diverse and individualized to address a variety of participant symptoms and needs. A nurse and social work palliative telecare team used collaborative care to tailor recommendations to the unique needs and symptoms of each patient, thereby improving quality of life. Models of palliative/hospice care delivery/Palliative care in chronic, non-malignant illness [ABSTRACT FROM AUTHOR]

1. Identify the importance of integrating caregivers into digital palliative care of older adults with heart failure. 2. Describe patient and caregiver outcomes following use of a digital palliative care self-management program. Digital health provides a modern opportunity to increase access and awareness of palliative care for older adults and their multiple informal caregivers. Digital health systems (e.g., patient portals, mobile apps, etc.) are often designed for individual users rather than integrating caregivers to maximize benefit. As older adults with heart failure (HF) rely on the support of others to help manage their health, there is a critical need to foster approaches for effective integration of caregivers in digital palliative care. To test feasibility of the Social Convoy Palliative Care intervention (Convoy-Pal); a 3-month digital self-management program including assessment tools and resources related to clinical palliative care domains for both patients and their caregivers with shared, integrated features. Randomized waitlist control pilot trial with patients 65 years and older who had been hospitalized twice or more for HF in the previous 2 years and their caregivers. We used descriptive statistics to describe recruitment, retention, missing data, and patient and caregiver self-report of social functioning, positive aspects of caregiving, and intervention acceptability. Our team mailed 503 patients recruitment invitations; 90 were ineligible,179 declined participation, and 31 patients and 15 of their caregivers (N=46) enrolled in the trial. Patients were 76.3 years of age, and caregivers 71.6, primarily White, but not all had access to a mobile device or computer. The study maintained a 67.4% retention rate, with 4.6% missing subscales on surveys, in part due to our established processes for providing technical support. Intervention patients reported improvements in social functioning (SF-36: 64.6±25.8 vs. 73.2±31.3) and caregivers reported increased perceptions of positive aspects of caregiving (29.5±5.28 vs. 35.0±5.35). Intervention acceptability was well-rated via the User Rated Mobile Application Scale, particularly related to the information provided (4.0±.43 out of 5). Convoy-Pal is feasible to deliver to both older patients and their caregivers. Because palliative care is a patient and caregiver approach to serious illness care, more research is needed to determine how to best design digital palliative care tools for multiple, varied age, and diverse simultaneous users. The Convoy-Pal digital health palliative care intervention provides an innovative way to increase access and awareness of palliative care assessments and resources for older adults and their multiple informal caregivers. [ABSTRACT FROM AUTHOR]

Context: Shared decision-making tools can facilitate advance care planning and goals of care conversations in non-cancer serious illness. More information on integrating these tools in ambulatory care could better support clinicians and patients/caregivers in these conversations. Objectives: We evaluated effectiveness and implementation of integrating palliative care shared decision-making tools into ambulatory care for U.S. adults with serious, life-threatening illness and their caregivers. Data sources: We searched PubMed, CINAHL, and the Cochrane Central Register of Controlled Trials (2000 - May 2020) for quantitative controlled, qualitative, and mixed-methods studies. Review methods: Two reviewers screened articles, abstracted data, and independently assessed risk of bias or study quality. For quantitative trials, we graded strength of evidence for key outcomes: patient/caregiver satisfaction, depression or anxiety, concordance between patient preferences for care and care received, and healthcare utilization, including advance directive documentation. Results: We included 6 quantitative effectiveness randomized, controlled trials and 5 qualitative implementation studies across primary care and specialty populations. Shared decision-making tools all addressed goals-of-care communication or advance care planning. Palliative care shared decision-making tools may be effective for improving patient satisfaction with communication and advance directive documentation. We were unable to draw conclusions about concordance between preferences and care received. Patients and caregivers preferred advance care planning discussions grounded in patient and caregiver experiences with individualized timing. Conclusions: For non-cancer serious illness, advance care planning shared decision-making tools may improve several outcomes. Future trials should evaluate concordance with care received and other health care utilization. Key Message: This mixed-methods review concludes that when integrating palliative care into ambulatory care for serious illness and conditions other than cancer, advance care planning shared decision-making tools may improve patient satisfaction and advance directive documentation. [ABSTRACT FROM AUTHOR]

Aims Caregivers of persons living with ventricular assist devices (VADs) are integrally involved in both medical and non-medical care. We sought to understand tasks caregivers perform after surgical recovery, ways the home is adapted for those tasks, and presence of home safety hazards. Methods and results We conducted semi-structured interviews with persons living with a VAD and their caregivers. Pictures were taken of areas in the home where: (i) caregiving activities occurred, (ii) VAD or medical supplies were kept, and (iii) home adaptations were made for VAD care. Pictures were described in written detail and analysed. A qualitative descriptive approach was used for analysis. The sample consisted of 10 dyads, with mostly spousal relationships (60%) between male patients (60%) and female caregivers (80%). Three themes were identified: (i) Evolution of Caregiving and Support: Patients gain independence, but caregivers are still needed, (ii) Adapting the Home Environment: Changes are focused on functional needs, and (iii) Hidden Dangers: Illumination of safety concerns by photographs. Assistance with bathing, driveline care, and medication management were common caregiving tasks. Most home adaptations occurred in the bathroom and bedroom including sleeping recliners, shower chairs, removable shower heads, and hanging hooks to hold VAD equipment. Safety hazards included minimal space for safe ambulation, infection risk, and home-made adaptations to the environment. Conclusions These findings describe key home caregiving tasks, home adaptations, and safety concerns that require further education and support. Utilizing pictures may be a feasible method for assessing VAD teaching, caregiving needs, and identifying potential risks. [ABSTRACT FROM AUTHOR]

PhD-prepared nurses are integral to the delivery of cost-effective, safe, and high-quality care to the increasingly diverse population in the U.S. Nurses with a PhD are needed to develop knowledge that informs and directs nursing care, promote positive health outcomes, and train the next generation of nurses and nurse scientists. Unfortunately, less than 1% of nurses have their PhD in nursing and there is an ongoing shortage of nurses in the U.S. that has not been effectively addressed. The PhD in nursing pipeline needs to be bolstered to address the escalating nursing shortage. This is especially important considering the importance of having an adequate number of well-prepared nurses to address the increasing complexities of health conditions and patient populations in the U.S. This paper presents strategies to promote and sustain interest in PhD in nursing among baccalaureate nursing students and discusses the importance of meaningful engagement in research and engaged faculty mentorship. It is important to incorporate research into undergraduate experiences, promote engaged mentorship during undergraduate level and beyond, and provide a conducive environment for undergraduate students to address their fears, misconceptions, and myths about PhD in nursing. • Undergraduate curriculum must promote students' involvement in real-life research. • Participation in undergraduate research promotes interest in PhD in nursing. • Engaged faculty mentors inspire nursing students to pursue their PhD in nursing. • Ongoing faculty mentors' and programmatic support are essential. [ABSTRACT FROM AUTHOR]

Background: Early integration of palliative care (PC) for patients with heart failure (HF) improves patient outcomes and decreases health care utilization. PC provided outside of an acute hospitalization is not well understood. Objective: To synthesize the literature of outpatient PC in HF to identify the current landscape, the impact on patient health outcomes, key stakeholders' perspectives, and future implications for research and practice. Design: A systematic search of PubMed, Embase, CINAHL, Cochrane, and Web of Science was conducted from inception to February 2019 for studies of outpatient PC in adults with HF. Each study was analyzed to describe study characteristics, location of PC, types of providers involved, participant characteristics, and main findings, and to characterize domains of PC addressed. Results: Most studies (N = 19) employed a quantitative design and were conducted in the United States. The most common locations of PC were the home or PC clinic and providers were mainly PC specialists. Outpatient PC improved quality of life, alleviated symptoms, and decreased rehospitalizations for patients with HF. No study addressed all eight domains of PC. The structural, physical, and psychological domains were commonly addressed, whereas, least commonly addressed domains were the cultural and ethical/legal domain. Women and ethnic minorities were underrepresented in the majority of samples. Conclusions: This integrative review highlights the need to promote primary PC and future PC research focusing on a holistic, integrated, team-based approach addressing all domains of PC in representative samples. [ABSTRACT FROM AUTHOR]

Outcomes: 1. Describe prevalent palliative care needs of physically frail persons with heart failure (HF) 2. Compare palliative care needs of robust, pre-frail, and frail community-dwelling persons with HF Physical frailty is emerging as a potential "trigger" for palliative care (PC) consultation, but the PC needs of physically frail persons with heart failure (HF) in the outpatient setting have not been well described. This study describes the PC needs of community-dwelling, physically frail persons with HF. We included persons with HF >50 years old who experienced >1 hospitalization in the prior year and excluded those with moderate/severe cognitive impairment, were enrolled in hospice or were non-English speaking. Measures included the FRAIL scale (0–5: 0 = robust, 1–2 = pre-frail, 3–5 = frail) and the Integrated Palliative Outcome Scale (17 items, score 0–68; higher score = higher PC needs). Multiple linear regression tested the association between PC needs and frailty group. Participants (N=292) had a mean age of 68 (range 50–92) were majority male (63%) and White (68%), and averaged two hospitalizations annually. Most were physically frail (44%) or pre-frail (41%). Mean palliative care needs score was 19.7 (range 0–58). Participants reported 5.86 (SD 4.28) PC needs affecting them moderately, severely, or overwhelmingly in the last week. Patient-perceived family/friend anxiety (57.7%) and weakness/lack of energy (57.7%) were the most prevalent needs. Frail participants had higher mean PC needs scores (26) than pre-frail (16, p< 0.001) or robust participants (11, p< 0.001). Frail participants experienced an average of 8.32 (SD 3.72) moderate/severe/overwhelming needs compared to prefrail (4.56, SD 3.77) and robust (2.39, SD 2.91) participants (p< 0.001). Frail participants reported higher prevalence of weakness/lack of energy (83.1%) and family/friend anxiety (69.2%) than pre-frail (48%, 54%) or robust (13%, 35%) participants (p< 0.001). Physically frail people with HF have higher unmet PC needs than those who are pre-frail and robust. Implementing PC needs and frailty assessments may help identify vulnerable patients with unmet needs requiring further assessment and follow-up. [ABSTRACT FROM AUTHOR]

An editorial is presented on public health nurses across the country demonstrating the "frontline" of nursing practice. Topics include illuminating gaps in public health resources, public health clinical nursing educators using the pandemic-induced limitations for engaging and preparing students for public health nursing practice; and nursing students providing in-person support in public school-based health clinics focusing on primary care and routine health screenings.

1. Discuss the state of the science on advance care planning and palliative care consultation in kidney transplant candidates and recipients 2. Describe the prevalence and racial and ethnic disparities of advance care planning and palliative care consultation in kidney transplant candidates and recipients 3. Propose solutions and interventions for the racial disparities and low prevalence of advance care planning and palliative care consultation among kidney transplant candidates and recipients Among patients listed for kidney transplant (KT), 27% die or are removed from the waitlist. Many KT recipients will need another transplant in their lifetime; therefore, both candidates and recipients experience high mortality and symptom burden. These patients could benefit from palliative care (PC) and advance care planning (ACP), but it is unclear how many and which patients receive ACP and PC. To estimate prevalence of ACP and PC by age and race among adult KT candidates and recipients. Among 2,579 KT candidates and 1,234 KT recipients (12/2008-2/2020), we assessed the presence of ACP and PC through chart review. ACP and PC correlates were identified via multivariable logistic regression. KT candidates' and recipients' mean ages were 55 and 53 years, respectively; 46.6% and 40.5% were Black. 21.4% of candidates had ACP; prevalence was higher in older (18-64 years = 19.9%, 65+ = 25.7%) and White candidates (White = 24.4%, Black = 19.1%, Hispanic = 15.0%, other race = 21.0%). 34.9% of recipients had ACP; similarly, older (18-64 years = 31.7%, 65+ = 47.1%) and White (White = 39.5%, Black = 31.2%, Hispanic = 26.3%, other = 26.6%) patients had higher prevalence. After adjustment, older age (OR = 1.85, 95% CI 1.35-2.53) and Black race (OR = 0.68, 95% CI 0.51-0.91) were associated with ACP only among KT recipients. PC prevalence was 4.3% in candidates and 5.1% in recipients and higher in older candidates (18-64 years = 3.8%, 65+ = 5.6%, p = 0.046) and recipients (18-64 years = 3.8%, 65+ = 10.0%, p < 0.001). After adjustment, only Black race (OR = 0.65, 95% CI 0.42-0.99) was associated with PC in candidates, while only older age (OR = 2.47, 95% CI 1.38-4.41) was associated with PC in recipients. KT candidates and recipients experience a lower prevalence of ACP and PC compared to patients with chronic illness in the United States. Importantly, significant racial and ethnic disparities exist in ACP. PC remains underutilized among KT candidates and recipients, more so for Black and Hispanic patients, and may improve symptom burden and ACP. [ABSTRACT FROM AUTHOR]