Palliative Care Needs of Physically Frail Community-Dwelling Older Adults With Heart Failure

Context: 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. Objectives: This study describes the PC needs of community dwelling, physically frail persons with HF. Methods: 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. Results: 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). Conclusion: 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

Strengths-building through life purpose, self-care goal setting and social support: Study protocol for Caregiver Support

Background: For caregivers of people with heart failure, addressing a range of care recipient needs at home can potentially be burdensome, but caregivers may also gain meaning from caregiving. The Caregiver Support Program, a multicomponent strengths-based intervention, is designed to improve outcomes of heart failure caregivers. Objectives: 1) Test the feasibility and gauge an initial effect size of the Caregiver Support Program to improve caregiver quality of life (primary outcome), and fatigue and burden (secondary outcomes) from baseline to 16 weeks, 2) test whether fatigue and caregiver burden are associated with objective measures of resilience (sweat inflammatory cytokines (Il-6 and IL-10) and self-reported resilience, 3) evaluate changes in heart rate variability, IL-6 and IL-10, pre- and post-intervention. Methods: This is a single-blind, two group, waitlist control trial. Eligible caregivers are 1) ≥ 18 years, 2) English speaking, 3) live with the person with heart failure or visit them at least 3 days per week to provide care, 4) provide support for at least 1 instrumental activity of daily living (IADL), 5) live within a 1 h driving radius of the Johns Hopkins Hospital, and 6) the care-recipient has been hospitalized within the last 6 months. Trial participants are randomized into the immediate intervention (n = 24) or waitlist control group (n = 24). Data collection is at baseline, 16 weeks, and 32 weeks. Conclusion: The Caregiver Support program has the potential to increase quality of life and decrease fatigue and caregiver burden for caregivers of people with heart failure and multiple co-morbidities

Supplemental Material - Feasibility of a Multi-Component Strengths-Building Intervention for Caregivers of Persons With Heart Failure

Supplemental Material for Feasibility of a Multi-Component Strengths-Building Intervention for Caregivers of Persons With Heart Failure by Martha Abshire Saylor, Noelle Pavlovic, Lyndsay DeGroot, Anna Peeler, Katie E. Nelson, Nancy Perrin, Nisha A. Gilotra, Jennifer L. Wolff, Patricia M. Davidson, and Sarah L. Szanton in Journal of Applied Gerontology</p

Feasibility of a Multi-Component Strengths-Building Intervention for Caregivers of Persons With Heart Failure

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

“We're all we got is each other”: Mixed-methods analysis of patient-caregiver dyads’ management of heart failure

Background: Individuals living with heart failure often require informal caregiving assistance for optimal self-care maintenance. The influence of caregiver burden and resilience on dyadic congruence is not well understood. Objective: To compare how dyadic congruence is influenced by level of burden and resilience expressed by caregivers of patients with heart failure. Methods: Mixed-methods analysis of individuals with heart failure and their caregivers, focusing on measures of caregiver burden (Zarit Burden Interview) and resilience (Brief Resilience Scale). Data were integrated using the Heart Failure Care Dyadic Typology. Results: Twelve dyads (n=24 participants) were classified as Type II (n=7) and Type III (n=5) dyads. Among Type II dyads, average caregiver burden was 19.43 (± 13.89) and resilience was 3.16 (± 1.04). For Type III dyads, average caregiver burden was 3.80 (± 4.27) and resilience 4.07 (± 1.36), respectively. Two key themes were derived: 1) caregivers’ tendency to take the lead, and 2) the usefulness of cognitive reframing. Data integration elucidated that theme 1 was more common among Type II dyads and those with higher burden, and theme 2 was more prevalent among Type III dyads and those with higher resilience. Conclusion: Findings highlight important variances in how dyads collectively manage heart failure. Future inquiry should involve tailored intervention development to bolster informal caregivers’ quality of life and ability to better support patients throughout their heart failure trajectory

The Context of Caregiving in Heart Failure: A Dyadic, Mixed Methods Analysis

Background Caregiving for persons with heart failure (HF) varies based on the individual, family, and home contexts of the dyad, yet the dyadic context of HF caregiving is poorly understood. Objective The aim of this study was to explore dyadic perspectives on the context of caregiving for persons with HF. Methods Family caregivers and persons with HF completed surveys and semistructured interviews. Investigators also photographed caregiving areas to complement home environment data. Descriptive qualitative analysis resulted in 7 contextual domains, and each domain was rated as strength, need, or neutral. We grouped dyads by number of challenging domains of context, categorizing dyads as high (=3 domains), moderate (1-2 domains), or minimal (0 domains) needs. Quantitative instruments included the 36-item Short Form Health Survey, ENRICHD Social Support, HF Symptom Severity, and Zarit Burden Interview. We applied the average score of each quantitative measure to the groups derived from the qualitative analysis to integrate data in a joint display. Results The most common strength was the dyadic relationship, and the most challenging domain was caregiving intensity. Every dyad had at least 2 domains of strengths. Of 12 dyads, high-needs dyads (n = 3) had the worst average score for 7 of 10 instruments including caregiver and patient factors. The moderate-needs dyads (n = 6) experienced the lowest caregiver social support and mental health, and the highest burden. Conclusion Strengths and needs were evident in all patient-caregiver dyads with important distinctions in levels of need based on assessment of multiple contextual domains. Comprehensive dyadic and home assessments may improve understanding of unmet needs and improve intervention tailoring