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.

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, [...]

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]

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]

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]