Multi-level correlates of received social support among heart transplant recipients in the international BRIGHT Study: a secondary analysis

Social support is critical in follow-up of patients after heart transplant (HTx) and positively influences well-being and clinical outcomes such as medication adherence. The purpose of this study was to (i) explore received social support variation (emotional and practical) in HTx recipients at country and centre level and (ii) to assess multi-level correlates.; Secondary data analysis of the multi-level cross-sectional BRIGHT study was conducted in 36 HTx centres in 11 countries. Received social support related to medication adherence was measured with emotional and practical sub-scales. The Conceptual Model of Social Networks and Health guided selection of patient, micro (interpersonal and psychosocial), meso (HTx centre) and macro-level (country health system) factors. Descriptive statistics, intraclass correlations, and sequential multiple ordinal mixed logistic regression analysis were used. A total of 1379 adult HTx recipients were included. Patient level correlates (female sex, living alone, and fewer depressive symptoms) and micro-level correlates (higher level of chronic disease management and trust in the healthcare team) were associated with better emotional social support. Similarly, patient level (living alone, younger age, and male sex), micro-level and meso-level (patient and clinician-rated higher level of chronic disease management) were associated with better practical social support. Social support varied at country and centre levels for emotional and practical dimensions.; Social support in HTx recipients varies by country, centre, and was associated with multi-level correlates. Qualitative and longitudinal studies are needed to understand influencing factors of social support for intervention development, improvement of social support, and clinical outcomes

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 \u3c 0.001) or robust participants (11, P \u3c 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 \u3c 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 \u3c 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

“We\u27re 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

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

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

Methods and operational aspects of human-centred design into research processes for individuals with multiple chronic conditions: A survey study

Aim: To examine ways in which human-centred design was integrated into a nursing school\u27s research processes involving individuals with multiple chronic conditions. Design: Cross-sectional survey study. Methods: Three surveys were sent out, with surveys 1 and 2 involving faculty who had worked closely with design strategists and survey 3 as a school-wide survey eliciting experience with human-centred design, respectively. Results: Survey respondents (n = 7 for surveys 1 and 2 and n = 36 for survey 3) had no or minimal experience with human-centred design. Faculty respondents indicated it helped engaging various stakeholders, particularly in intervention development. Key lessons learned included: (1) the importance of designer involvement from study conception, (2) distinguishing a design strategist\u27s skillset from strictly visual design, (3) challenges during the ethical review processes, and (4) sustainability of resources. The dynamic approach of human-centred design has benefited our efforts to advance the science of caring for individuals with multiple chronic conditions

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

Caregivers' Contributions to Heart Failure Self-care

Background: A previous systematic review reporting the contributions of informal, unpaid caregivers to patient heart failure (HF) self-care requires updating to better inform research, practice, and policy. Objective: The aim of this study was to provide an updated review answering the questions: (1) What specific activities do informal caregivers of adults with HF take part in related to HF self-care? (2) Have the activities that informal caregivers of adults with HF take part in related to HF self-care changed over time? (3) What are the gaps in the science? Methods: This review followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. PubMed, CINAHL, EMBASE, and Cochrane CENTRAL databases were searched. Eligible studies involved an informal, unpaid caregiver of an adult with HF as a study variable or participant. Caregiving activities were benchmarked using the theory of self-care in chronic illness. Results: Two thousand one hundred fifty-four research reports were identified, of which 64 met criteria. Caregivers' contributions occurred in self-care maintenance (91%), monitoring (54%), and management (46%). Activities performed directly on or to the patient were reported more frequently than activities performed for the patient. Change over time involved the 3 domains differentially. Gaps include ambiguous self-care activity descriptions, inadequate caregiving time quantification, and underrepresented self-care monitoring, supportive, and communication activities. Conclusions: Newly identified caregiver-reported activities support updating the theory of self-care in chronic illness to include activities currently considered ancillary to HF self-care. Identified gaps highlight the need to define specific caregiving activities, determine task difficulty and burden, and identify caregiver self-care strategy and education needs. Exposing the hidden work of caregiving is essential to inform policy and practice