Caregivers' Contributions to Heart Failure Self-care: An Updated Systematic Review.

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.

Application of a Human Factors and Systems Engineering Approach to Explore Care Transitions of Sepsis Survivors From Hospital to Home Health Care.

STUDY AIM: This study aims to describe the transition-in-care work process for sepsis survivors going from hospitals to home health care (HHC) and identify facilitators and barriers to enable practice change and safe care transitions using a human factors and systems engineering approach. BACKGROUND: Despite high readmission risk for sepsis survivors, the transition-in-care work process from hospitals to HHC has not been described. METHODS: We analyzed semi-structured needs assessment interviews with 24 stakeholders involved in transitioning sepsis survivors from two hospitals and one affiliated HHC agency participating in the parent implementation science study, I-TRANSFER. The qualitative data analysis was guided by the Systems Engineering Initiative for Patient Safety (SEIPS) framework to describe the work process and identify work system elements. RESULTS: We identified 31 tasks characterized as decision making, patient education, communication, information, documentation, and scheduling tasks. Technological and organizational facilitators lacked in HHC compared to the hospitals. Person and organization elements in HHC had the most barriers but few facilitators. Additionally, we identified specific task barriers that could hinder sepsis information transfer from hospitals to HHC. CONCLUSION: This study explored the complex transition-in-care work processes for sepsis survivors going from hospitals to HHC. We identified barriers, facilitators, and critical areas for improvement to enable implementation and ensure safe care transitions. A key finding was the sepsis information transfer deficit, highlighting a critical issue for future study. APPLICATION: We recommend using the SEIPS framework to explore complex healthcare work processes before the implementation of evidence-based interventions.

Social Determinants of Health are Associated with Coping of Informal Caregivers of Adults with Heart Failure.

We explored the influence of social determinants of health (SDH) risk on stress and coping style in heart failure (HF) caregivers. In this cross-sectional study, data from 250 caregivers were analyzed. Multivariable linear regression analyses were performed to determine the extent to which SDH risk (measured using a modified PRAPARE tool (National Association of Community Health Centers), range 0-22) predicted stress (Perceived Stress Scale, 0-56) and coping style (active (0-45), avoidance (0-30), and minimization (0-30)) while accounting for caregiver burden (HF Caregiver Questionnaire (HF-CQ) 0-100). Multivariable regression analysis with backwards elimination variable selection approach was used to identify which SDH risk factors best predicted coping styles. SDH risk was significantly associated with avoidance and minimization coping styles. Each unit increase in SDH risk was associated with an increase of 0.6 ± 0.2 units (p = .0008) in avoidance and 0.7 ± 0.2 units (p < .0001) in minimization coping style. Race and "supporting others" significantly predicted avoidance coping style; scores were 3.3 ± 0.8 units greater for caregivers who were not White (p < .0001) and 1.4 ± 0.5 units greater (p < .01) for each additional person whom they supported. Race significantly predicted minimization coping style; scores were 4.4 ± 0.7 units greater for caregivers who were not White (p < .0001). Caregivers with higher SDH risk may avoid and minimize to cope with caregiving challenges.

Psychometric Analysis of the Health Self-Care Neglect Scale.

OBJECTIVES: The Health Self-Care Neglect (HSCN) scale is a measure of self-care neglect developed for use in informal caregivers, where self-care is defined as behaviors undertaken to maintain health. There was no formal psychometric analysis of the scale, so we tested a 9-item, dichotomous-response version of the HSCN scale in a sample of 250 informal caregivers of adults with chronic heart failure. METHODS: As the indicators of self-care neglect were considered formative (influencing the latent variable directly) rather than reflective (influenced by the latent variable), we used a procedure for the specification of formative measurement models. First, maximally correlated composites of indicators were identified for the latent variable, and optimal scoring weights were developed. Then, the reflective factor was tested with confirmatory factor analysis, and longitudinal invariance of the factorial structure was tested by introducing model constraints. Reliability was assessed with composite reliability model-based estimates. Concurrent validity was assessed by correlating the HSCN scale total score with the maintenance scale score of the Self-Care Inventory. RESULTS: Strict invariance, the highest level possible, was achieved. Reliability was 0.81 at baseline. Concurrent validity was demonstrated (r = -0.475, P < .0001). CONCLUSION: The results of this analysis indicate that the HSCN scale is reliable, stable, and valid as a measure of health self-care neglect when tested in a sample of caregivers. The HSCN scale measures the successful performance of self-care, whereas existing measures of self-care reflect intention. Understanding both intention and behavior is useful, so we recommend using the HSCN scale in addition to existing measures of self-care.

Better Preparation and Training Determine Home Care Workers' Self-Efficacy in Contributing to Heart Failure Self-Care.

OBJECTIVE: Identify determinants of home care workers' (HCW) self-efficacy in contributing to heart failure (HF) self-care. METHODS: Secondary analysis of a survey (n = 328) examining characteristics of HCWs caring for adults with HF in New York. Self-efficacy assessed using Caregiver Self-Efficacy in Contributing to Self-Care Scale. Standardized scores range 0-100; ≥ 70 points indicate adequate self-efficacy. Characteristics determined by self-efficacy (low vs. adequate). Prevalence ratios with 95% confidence intervals (PR [95% CI]) were estimated using multivariable Poisson regression with robust standard errors. RESULTS: Home care workers with adequate self-efficacy had at least some prior HF training (55% vs. 17%, p < .001) and greater job satisfaction (90% vs. 77%, p = .003). Significant determinants for adequate self-efficacy were employment length (1.02 [1.00-1.03], p = .027), preparation for caregiving (3.10 [2.42-3.96], p < .001), and HF training (1.48 [1.20-1.84], p < .001). CONCLUSION: Home care agencies and policy-makers can target caregiving preparation and HF training to improve HCWs' confidence in caring for adult HF patients.

Does Connectedness Matter? The Association Between Mutuality and Job Satisfaction Among Home Health Aides Caring for Adults With Heart Failure.

Home health aides (HHAs) provide care to many adults with heart failure (HF) in the home. As the demand for HHAs increases, there is a need to promote HHAs' job satisfaction and retention. In this cross-sectional community-partnered study, we examined whether mutuality (e.g., quality of the HHA-patient relationship), is associated with job satisfaction among HHAs caring for adults with HF. Mutuality was assessed with the Mutuality Scale, which measures overall mutuality and its four domains (reciprocity, love and affection, shared pleasurable activities, and shared values). Our final sample of 200 HHAs was primarily female. The mean overall mutuality score was 2.92 out of 4 (SD 0.79). In our final model, overall mutuality and each of the four domains were associated with increased job satisfaction; however, only the shared pleasurable activities domain was significant (aPR: 1.15 [1.03-1.32]). Overall, mutuality may play a role in promoting job satisfaction among HHAs.

Dyad Gender and Relationship Quality Influence Heart Failure Self-Care.

Caregivers promote heart failure self-care, yet little is known about how relationship quality and dyad gender influences self-care. The purpose of this study was to evauluate the contribution of dyad gender and relationship quality on heart failure self-care. The study was a secondary analysis from a heart failure self-care intervention. Dyad gender was categorized by patient-caregiver gender as Male-Male (M + M), Female-Female (F + F), Female-Male (Fp + Mc), and Male-Female (Mp + Fc). The Self-Care of Heart Failure Index v.6.2 measured self-care. The Mutuality Scale assessed relationship quality. Univariate linear regression identified determinants of patient self-care maintenance and self-efficacy. The sample (n = 503) was 48% Mp + Fc, 27% F + F, 15% Fp + Mc, and 10% M + M. Better caregiver mutuality in M + M dyads was associated with lower self-care maintenance (b = -7.45, 95% CI [-13.80, -1.11]) and self-efficacy (b = -18.07, 95% CI [-29.11, -7.04]). Better patient mutuality was associated with higher self-efficacy for M + M dyads (b = 12.63, 95% CI [2.18, 23.09]). Mutuality and dyad gender appear important for self-care. Consider the role of gender in the dyad in behavioral interventions.

Improving transitions and outcomes of sepsis survivors (I-TRANSFER): a type 1 hybrid protocol.

BACKGROUND: This protocol is based on home health care (HHC) best practice evidence showing the value of coupling timely post-acute care visits by registered nurses and early outpatient provider follow-up for sepsis survivors. We found that 30-day rehospitalization rates were 7 percentage points lower (a 41% relative reduction) when sepsis survivors received a HHC nursing visit within 2 days of hospital discharge, at least 1 more nursing visit the first week, and an outpatient provider follow-up visit within 7 days compared to those without timely follow-up. However, nationwide, only 28% of sepsis survivors who transitioned to HHC received this timely visit protocol. The opportunity exists for many more sepsis survivors to benefit from timely home care and outpatient services. This protocol aims to achieve this goal.  METHODS: Guided by the Consolidated Framework for Implementation Research, this Type 1 hybrid pragmatic study will test the effectiveness of the Improving Transitions and Outcomes of Sepsis Survivors (I-TRANSFER) intervention compared to usual care on 30-day rehospitalization and emergency department use among sepsis survivors receiving HHC. The study design includes a baseline period with no intervention, a six-month start-up period followed by a one-year intervention period in partnership with five dyads of acute and HHC sites. In addition to the usual care/control periods from the dyad sites, additional survivors from national data will serve as control observations for comparison, weighted to produce covariate balance. The hypotheses will be tested using generalized mixed models with covariates guided by the Andersen Behavioral Model of Health Services. We will produce insights and generalizable knowledge regarding the context, processes, strategies, and determinants of I-TRANSFER implementation. DISCUSSION: As the largest HHC study of its kind and the first to transform this novel evidence through implementation science, this study has the potential to produce new knowledge about the impact of timely attention in HHC to alleviate symptoms and support sepsis survivor's recovery at home. If effective, the impact of this intervention could be widespread, improving the quality of life and health outcomes for a growing, vulnerable population of sepsis survivors. A national advisory group will assist with widespread results dissemination.

Characteristics of Patients Who Do Not Respond to Motivational Interviewing for Heart Failure Self-care.

BACKGROUND: Motivational interviewing (MI) improves heart failure (HF) self-care for most yet fails to work for some patients. Identifying patients less likely to benefit from MI would save time in identifying a more suitable treatment for these patients. OBJECTIVE: The aim of this study was to identify the characteristics of adults with HF less likely to clinically improve self-care after MI. METHODS: This was a secondary intervention group analysis (n = 230) of MOTIVATional intErviewing to improve self-care in Heart Failure patients (MOTIVATE-HF), a trial evaluating MI in improving HF self-care maintenance and management. Self-care was measured with the Self-care of Heart Failure Index v. 6.2 at baseline and 3 months from enrollment. Participants were dichotomized into MI nonresponder (standardized score change <8 points) or MI responder (score change ≥8 points). Logistic regression, adjusted for group differences, identified determinants of nonresponse (odds ratio [95% confidence interval]). RESULTS: Significant risk factors for self-care maintenance nonresponse 3 months after the intervention were nonischemic HF (2.58 [1.33-5.00], P = .005) and taking fewer medications (0.83 [0.74-0.93], P = .001). These variables explained 29.6% of the variance in HF self-care maintenance. Risk factors for self-care management nonresponse were living alone (4.33 [1.25-14.95], P = .021) and higher baseline self-care management (1.06 [1.02-1.09], P < .001), explaining 35% of the variance in HF self-care management. CONCLUSIONS: Motivational interviewing may be less beneficial in patients with nonischemic HF and taking fewer medications. Patients with HF living alone with relatively better self-care management may be at risk for MI treatment failure. Identifying characteristics of nonresponders to MI in HF contributes to clinical decision making and personalized interventions.

Caregiver autonomy support: A systematic review of interventions for adults with chronic illness and their caregivers with narrative synthesis.

Chronic illnesses cause significant mortality in adults. Caregivers (spouses, adult children, friends) support adults with chronic illness in multiple ways, for instance through support of their autonomous decisions about how and why to engage in self-care. AIM: To examine interventions designed to improve the health and well-being of adults with chronic illness by enhancing the autonomy supportive behaviours of caregivers. DESIGN: Systematic review of randomized controlled trials with narrative synthesis. DATA SOURCES: All available dates of publication through August 2020 conducted in PubMed, Medline, Ageline, PsychInfo, and CINAHL. METHODS: Randomized controlled interventions of adults with chronic illness and their caregivers with content to enhance caregiver autonomy support were included. Interventions involving healthcare personnel, adults without self-care capacity, or not published in English were excluded. Quality was appraised using Joanna Briggs Institute recommendations. Common themes in autonomy support and associated outcomes (e.g., self-care, social support) were synthesized. RESULTS: Search identified 1,426 studies with 16 included in review (N = 2,486 dyads). Methodological quality was moderate. Successful interventions were skills-based, targeted various communication styles, contained in-person elements, and involved nurses. Half of the interventions assessed autonomy support outcomes; 63% (5 of 8) of these improved autonomy support. Results were generally positive for social support, mixed for self-care, and null for caregiver burden. Heterogeneity and complexity of studies limited attribution of effects. CONCLUSION: Behavioural interventions designed to enhance dyadic caregiver interpersonal communication to be autonomy supportive may positively influence caregiver skills and chronic illness outcomes. Future studies of autonomy support are needed to identify core intervention components. IMPACT: This is the first systematic review examining interventions promoting caregiver to care-receiver autonomy support. Modifying interpersonal communication to be autonomy supportive has potential to improve chronic illness outcomes. Findings can inform how clinicians and investigators enlist caregiver autonomy support to encourage behaviour change.

Characteristics of self-care interventions for patients with a chronic condition: A scoping review.

BACKGROUND: Self-care is a fundamental element of treatment for patients with a chronic condition and a major focus of many interventions. A large body of research exists describing different types of self-care interventions, but these studies have never been compared across conditions. Examination of heterogeneous interventions could provide insights into effective approaches that should be used in diverse patient populations. OBJECTIVES: To provide a comprehensive and standardized cross-condition overview of interventions to enhance self-care in patients with a chronic condition. Specific aims were to: 1) identify what self-care concepts and behaviors are evaluated in self-care interventions; 2) classify and quantify heterogeneity in mode and type of delivery; 3) quantify the behavior change techniques used to enhance self-care behavior; and 4) assess the dose of self-care interventions delivered. DESIGN: Scoping review DATA SOURCES: Four electronic databases - PubMed, EMBASE, PsychINFO and CINAHL - were searched from January 2008 through January 2019. ELIGIBILITY CRITERIA FOR STUDY SELECTION: Randomized controlled trials (RCTs) with concealed allocation to the intervention were included if they compared a behavioral or educational self- care intervention to usual care or another self-care intervention and were conducted in adults. Nine common chronic conditions were included: hypertension, coronary artery disease, arthritis, chronic kidney disease, heart failure, stroke, asthma, chronic obstructive lung disease, and type 2 diabetes mellitus. Diagnoses that are psychiatric (e.g. schizophrenia), acute rather than chronic, or benefitting little from self-care (e.g. dementia) were excluded. Studies had to be reported in English with full-text available. RESULTS: 9309 citations were considered and 233 studies were included in the final review. Most studies addressed type 2 diabetes mellitus (n = 85; 36%), hypertension (n = 32; 14%) or heart failure (n = 27; 12%). The majority (97%) focused on healthy behaviors like physical activity (70%), dietary intake (59%), and medication management (52%). Major deficits found in self-care interventions included a lack of attention to the psychological consequences of chronic illness, technology and behavior change techniques were rarely used, few studies focused on helping patients manage signs and symptoms, and the interventions were rarely innovative. Research reporting was generally poor. CONCLUSIONS: Major gaps in targeted areas of self-care were identified. Opportunities exist to improve the quality and reporting of future self-care intervention research. Registration: The study was registered in the PROSPERO database (#123,719).

Lessons learned from the implementation of a video health coaching technology intervention to improve self-care of family caregivers of adults with heart failure.

Individuals with heart failure (HF) typically live in the community and are cared for at home by family caregivers. These caregivers often lack supportive services and the time to access those services when available. Technology can play a role in conveniently bringing needed support to these caregivers. The purpose of this article is to describe the implementation of a virtual health coaching intervention with caregivers of HF patients ("Virtual Caregiver Coach for You"-ViCCY). A randomized controlled trial is currently in progress to test the efficacy of the intervention to improve self-care. In this trial, 250 caregivers will be randomly assigned to receive health information via a tablet computer (hereafter, tablet) plus 10 live health coaching sessions delivered virtually (intervention group; n = 125) or health information via a tablet only (control group; n = 125). Each tablet has specific health information websites preloaded. To inform others embarking on similar technology projects, here we highlight the technology challenges encountered with the first 15 caregivers who received the ViCCY intervention and the solutions used to overcome those challenges. Several adaptations to the implementation of ViCCY were needed to address hardware, software, and network connectivity challenges. Even with a well-designed research implementation plan, it is important to re-examine strategies at every step to solve implementation barriers and maximize fidelity to the intervention. Researcher and interventionist flexibility in adapting to new strategies is essential when implementing a technology-based virtual health coaching intervention.