The multiple mediating effects of health literacy and self-care confidence between depression and self-care behaviors in patients with heart failure

BackgroundPrevious researchers have found that depression can influence self-care behaviors of patients with heart failure (HF). However, the specific path of depression on self-care behaviors remains unclear.ObjectivesTo determine the multiple mediating effects of health literacy and self-care confidence between depression and self-care behaviors in patients with HF.MethodsA cross sectional study on HF patients (n = 310) was conducted at a tertiary hospital in China. The Chinese versions of the Hospital Anxiety and Depression Scale (HADS-D), Health Literacy Scale for Patients with Chronic Disease and Self-care of Heart Failure Index (C-SCHFI) were used to assess depression, health literacy, self-care confidence and self-care behaviors of the HF patients respectively.ResultsDepression had significant negative correlations with health literacy (r = -0.40, P < 0.01), self-care confidence (r = -0.41, P < 0.01), self-care maintenance (r = -0.18, P < 0.01) and management (r = -0.19, P < 0.01). After controlling for covariates, mediation modeling analysis showed that health literacy and self-care confidence were mediating variables between depression and self-care management and all the three paths were significant. A higher level of depression debilitated health literacy (β = -0.23, P < 0.001), and a higher degree of health literacy was associated with better self-care confidence (β = 0.31, P < 0.001) which contributed to better self-care management (β = 0.43, P < 0.001). Total mediation effect was -0.1940 with 95% CI from -0.2702 to -0.1266. However, self-care confidence did not mediate between depression and self-care maintenance.ConclusionHealth literacy and self-care confidence exert a multiple mediating effect on the relationship between depression and self-care management. The relationship between variables should be considered when developing the tailored interventions for patients with HF to enhance their self-care behaviors.     

Understanding communal coping among patients and informal caregivers with heart failure: A mixed methods secondary analysis of patient-caregiver dyads

BackgroundDyads that view illnesses as shared stressors (“shared appraisal”), and collaboratively respond to it, have better outcomes. This process, known as communal coping, has received little attention in heart failure (HF).ObjectivesTo examine communal coping among patient-caregiver dyads managing HF.MethodsWe conducted semi-structured interviews with 34 dyads. Shared appraisal was measured using we-ratio, as calculated with Linguistic Inquiry Word Count. We-ratio was divided into “high” and “low” for patients and caregivers, and concordance was examined. Thematic analyses were used to explore collaboration.ResultsCaregivers had higher we-ratios than patients (p=.005); 29.6% and 33.3% dyads were concordant on high and low “we-ratio,” respectively. In thematic analyses, we found that 1) dyads collaborated around diet, appointments, and medications, but less around physical activity; 2) dyads collaborated across all illnesses, not just HF; and 3) dyads concordant on high we-ratio reported stronger collaborations.ConclusionsCommunal coping varied by shared appraisal and collaboration. Understanding this variability may help develop tailored self-management interventions.     

Decisional regret in left ventricular assist device patient-caregiver dyads

BackgroundThe objective of this study was to investigate decisional regret among left ventricular assist device (LVAD) patients and their caregivers.MethodsThis study was a single center, cross-sectional survey of patients after LVAD implantation and their caregivers. Subjects were recruited at their outpatient heart failure appointments. Patients and caregivers at least three months from LVAD implantation completed a 5-item, validated decisional regret scale. Summative scores on a 0–100 point scale were determined for patient and caregivers (0 = no regret). Subgroup analysis included gender, LVAD indication (bridge to transplant (BTT) or destination therapy (DT)), time from LVAD implantation, and caregiver relationship. Dyad discordance was defined as a patient-caregiver difference of ≥2 points on any regret scale question.ResultsFifty patients were approached for participation. Thirty-three LVAD patient-caregiver dyads were enrolled in the study (19 male, 14 female patients; 8 male, 25 female caregivers). Patients had a mean age of approximately 50 years. Caregivers had a mean age of approximately 54 years. Patients had a median regret score of 10 (Interquartile range (IQR): 0–30), while caregivers had a median regret score of 20 (IQR: 0–25). Median regret scores of female patients were significantly higher than that of male patients (27.5 vs 0, p = 0.0038). BTT patients had numerically lower regret than DT patients, but this was not statistically significant. Patients who had been implanted for greater than three years had the highest regret scores. Discordance in at least one domain of the regret scale was present in 19 out of 33 (57.6%) dyads.ConclusionsWhile decisional regret was reasonably low in this population, comparatively, there was significantly increased decisional regret among female patients and patients further from LVAD implantation. Differences between patients and caregivers were also observed. These findings highlight the need for robust support and continual attention to expectations before and after LVAD implantation.     

A pilot randomized clinical trial of a teamwork intervention for heart failure care dyads

BackgroundDyadic heart failure (HF) management can improve outcomes for patients and caregivers and can be enhanced through eHealth interventions.ObjectiveTo evaluate the feasibility, acceptability, and preliminary efficacy of an eHealth dyadic teamwork intervention, compared to an attention control condition.MethodsWe recruited 29 HF patient-caregiver dyads from inpatient units and randomized dyads to an intervention or a control group. We calculated enrollment and retention rates, described acceptability using interview and questionnaire data, and computed intervention effect sizes.Results37% of eligible dyads agreed to participate and 93% of randomized participants completed follow-up questionnaires. Participants found both study conditions to be acceptable. Between-group effect sizes suggested that the intervention led to improvements in relationship quality, self-efficacy, and quality of life for patients and caregivers.ConclusionsDyadic recruitment from acute care settings is challenging. Findings provide initial evidence that our intervention can contribute to better health outcomes for HF dyads.     

Attentes en éducation thérapeutique des patients atteints de purpura thrombopénique immunologique et des soignants

IntroductionImmune thrombocytopenia (ITP) durably affects quality of life in patients. Patient education aims at improving their self-care and psychosocial skills, allowing them be more autonomous, to prevent avoidable complications, and to maintain or improve quality of life. The aim of this study was to assess patients’ and caregivers’ expectations regarding patient education in ITP.MethodITP Patients and caregivers were asked about topics that should be addressed in a patient education program through a digital anonymous survey. Their responses were analyzed both qualitatively and quantitatively. A double-blind keyword attribution of the answers was carried out by two physicians and then faced until consensus was found.ResultsThirty-eight ITP patients were included: 68% were less than 50 years old and 84% had chronic ITP. On the other hand, twenty-five caregivers were included. Caregivers raised more topics related to the cognitive domain than patients. The psychoaffective and motivational topics tended to be more represented in patients’ responses. Only 53% of topics were mentioned by both patients and caregivers.ConclusionThese discrepancies emphasize the differences between patients and caregivers’ expectations regarding a patient education program in ITP, and thus the relevance of patient-caregiver co-construction of such programs.     

The role of health literacy,depression, disease knowledge,and self-efficacy in self-care among adults with heart failure: An updated model

BackgroundPatients with inadequate health literacy and heart failure face high healthcare costs, more hospitalizations, and greater mortality. To address these negative consequences, patients need to improve heart failure self-care. Multiple factors may influence self-care, but the exact model by which they do so is not fully understood.ObjectivesThe objective of this study was to examine a model exploring the contribution of health literacy, depression, disease knowledge, and self-efficacy to the performance of heart failure self-care.MethodsUsing a cross-sectional design, patients were recruited from a heart failure clinic and completed validated assessments of their cognition, health literacy, depression, knowledge, self-efficacy and self-care. Patients were separated into two groups according to their health literacy level: inadequate/marginal and adequate. Differences between groups were assessed with an independent t-test. Hypothesized paths and mediated relationships were estimated and tested using observed variable path analysis.ResultsParticipants (n = 100) were mainly male (67%), white (93%), and at least had a high school education (85%). Health literacy was associated with disease knowledge (path coefficient=0.346, p = 0.002), depression was negatively associated with self-efficacy (path coefficient=-0.211, p = 0.037), self-efficacy was positively associated with self-care (path coefficient=0.402, p<0.0005), and there was evidence that self-efficacy mediated the link between depression and self-care. There was no evidence of: mediation of the link between health literacy and self-care by knowledge or self-efficacy; positive associations between knowledge and self-efficacy or self-care; or mediation of the disease knowledge and self-care relationship by self-efficacy. Further, depression was associated with self-care indirectly rather than also directly as hypothesized.ConclusionsSelf-efficacy and depression are associated with heart failure self-care. Data generated from the model suggest that healthcare professionals should actively engage all patients to gain self-efficacy and address depression to positively affect heart failure self-care.     

Emotional well-being of heart failure patients and their caregivers

BACKGROUND: Heart failure (HF) dramatically affects the lives of both patients and their caregivers, yet limited research exists examining the relationship between emotional well-being of HF patients and their caregivers. Therefore, we conducted a study to (1) describe and compare the emotional well-being of HF patients and their caregivers, (2) determine if gender differences exist in emotional well-being of patients and caregivers, and (3) identify factors associated with emotional well-being of HF patients. METHODS: The emotional well-being of 103 patient-caregiver dyads was assessed using the mental health subscale of the SF-12. RESULTS: Patients were 57.6 +/- 12.1 years, predominantly Caucasian (76.7%) and male (67.0%). Caregivers were 59.5 +/- 17.6 years, predominantly females (70.9%) and spouses of patients with HF (82.6%). Patients had significantly lower (poorer) emotional well-being scores than caregivers. Both gender and age were associated with patients' emotional well-being; male and younger participants had higher (better) scores than female and older patients (P <.05). In a multivariate model, patient's age, gender, and caregivers' emotional well-being accounted for 54% of the variance in patients' emotional well-being. CONCLUSION: We found that the emotional well-being of caregivers is associated with the emotional well-being of HF patients. Our findings suggest the need to focus on supporting caregivers and providing them with the strategies they need to support their loved ones with HF.     

Context Matters in Heart Failure Self-Care: A Qualitative Systematic Review

BackgroundThe aim of this work was to identify the main contextual factors and processes that influence patients' self-care of heart failure (HF).Methods and ResultsA systematic review was conducted with the use of qualitative meta-synthesis. Ten databases were searched up to March 19, 2012. Of the 1,421 papers identified by the systematic search, 45 studies were included in this meta-synthesis. To be included, studies had to contain a qualitative research component, data pertaining to self-care of HF from adults (≥18 y) and be published as full papers or theses since 1995. These studies involved: 1,398 patients (mean age 65.9 y), 180 caregivers, and 63 health professionals. Six main types of contextual factors were found to influence HF self-care in the studies: caregivers; social networks and social support; place; finances and financial capacity; work and occupation; and HF support groups and programs.ConclusionHF self-care is influenced by contextual elements that fall outside of traditional elements of a HF self-care program. Inclusion of these elements may help to address the current concerns about poor adherence to self-management programs.     

Dyads affected by chronic heart failure: a randomized study evaluating effects of education and psychosocial support to patients with heart failure and their partners

BackgroundChronic heart failure (CHF) causes great suffering for both patients and their partners. The aim of this study was to evaluate the effects of an integrated dyad care program with education and psychosocial support to patients with CHF and their partners during a postdischarge period after acute deterioration of CHF.MethodsOne hundred fifty-five patient-caregiver dyads were randomized to usual care (n = 71) or a psychoeducation intervention (n = 84) delivered in 3 modules through nurse-led face-to-face counseling, computer-based education, and other written teaching materials to assist dyads to develop problem-solving skills. Follow-up assessments were completed after 3 and 12 months to assess perceived control, perceived health, depressive symptoms, self-care, and caregiver burden.ResultsBaseline sociodemographic and clinical characteristics of dyads in the experimental and control groups were similar at baseline. Significant differences were observed in patients’ perceived control over the cardiac condition after 3 (P < .05) but not after 12 months, and no effect was seen for the caregivers.No group differences were observed over time in dyads’ health-related quality of life and depressive symptoms, patients’ self-care behaviors, and partners’ experiences of caregiver burden.ConclusionsIntegrated dyad care focusing on skill-building and problem-solving education and psychosocial support was effective in initially enhancing patients’ levels of perceived control. More frequent professional contact and ongoing skills training may be necessary to have a higher impact on dyad outcomes and warrants further research.     

Self-Care Confidence Mediates the Relationship Between Perceived Social Support and Self-Care Maintenance in Adults With Heart Failure

BackgroundSocial support may be associated with heart failure (HF) self-care; however, the mechanisms are not well understood. We examined the association between perceived support and self-care behaviors and whether self-care confidence mediates these relationships.MethodsCross-sectional survey of HF patients seen in outpatient clinic settings. Our outcome (HF self-care maintenance and self-care management) and mediator (HF self-care confidence) variables were assessed with the Self-Care of Heart Failure Index. Perceived emotional/informational support was assessed with the Medical Outcomes Study social support survey. We performed regression analyses to examine associations between perceived support and HF self-care behaviors. Mediation analysis was performed according to the Baron and Kenny method.ResultsWe surveyed 150 HF patients (mean age 61 y; 51% female; 43% black). More emotional/informational support was associated with better self-care maintenance (β = 0.13; P = .04). More emotional/information support was associated with better self-care management in unadjusted (β = 0.23; P = .04), but not adjusted (β = 0.20, P = .10), analysis. Self-care confidence mediates the association between perceived support and self-care maintenance (percent change in β coefficient was 32%) and management (percent change in β coefficient was 20%).ConclusionPerceived emotional/informational support is associated with better self-care maintenance and possibly better self-care management. Greater self-care confidence is one mediating mechanism.     

Heart failure symptom monitoring and response training

ObjectiveThe purpose of this study was to test the efficacy of a heart failure (HF) training program on patients' ability to recognize and respond to changes in HF symptoms. The primary aim was to compare event-free survival at 90 days.MethodsA total of 99 HF patients randomized to the HF symptom training intervention or usual care completed instruments about self-care (Self-Care of HF Index) and at baseline and 3 months. Demographic, clinical, and comorbidity data were collected by interview and chart review. Time to first event (death or a HF-related hospitalization) was tracked by electronic records and patient interview.ResultsThe sample was predominately male (67.7%), elderly (67.7 yrs ± 12.1) and Caucasian (88.9%). The intervention group reported more events but the difference was not significantly different (χ² = 1.18, p = 0.26). There was no difference in survival time between groups (χ² = 1.53, p = 0.216). In paired t-tests, the intervention group had significantly improved self-care maintenance, management and confidence scores (all p < 0.01). The usual care group had significantly improved self-care maintenance and management (both p < 0.01). Improvements in self-care maintenance and confidence were higher in the intervention group compared with usual care (18.0 vs. 12.9 points).ConclusionsHF symptom awareness training appeared to have an early but not sustained benefit resulting in no difference in 90-day event-free survival. However, larger improvement in self-care maintenance and confidence scores in the intervention group compared to usual care is promising. Embedding meaningful symptom monitoring strategies in self-care maintenance interventions requires further investigation.     

Caregivers' Perceived Roles in Caring for Patients With Heart Failure: What Do Clinicians Need to Know?

BackgroundPoor self-management of heart failure (HF) is an essential contributor to poor outcomes. Caregivers are involved in the care of HF patients, but caregiver interventions intended to improve the outcomes of patients have been largely unsuccessful. Improved knowledge of caregivers' desired roles in care may improve future interventions.Methods and ResultsThis qualitative study of 20 caregivers of HF patients recruited from an academic medical center used a general inductive approach, with insights from role theory, to analyze the data. Caregivers perceived themselves as health care managers and care plan enforcers, advocates for quality of life, and experts in the lived experience of HF at home. However, they encountered role strain (expectations of role exceed ability to perform role) and role conflict (incompatible or contradictory roles) when it seemed that these roles were incompatible with those that they felt the health care system saw them in. This resulted in expressions of anger and distrust towards the health care system.ConclusionsClinicians caring for patients with HF can seek to better empower and enable this care. Involving caregivers in disease management research and assessing their roles before intervention may hold promise for enabling and empowering caregivers to improve outcomes of HF patients.     

Inadequate Health Literacy Among Paid Caregivers of Seniors

Background  

Many seniors rely on paid non-familial caregivers to maintain their independence at home. Caregivers often assist with medication reminding and activities of daily living. No prior studies have examined the health literacy levels among paid non-familial caregivers.     

Teach back and pictorial image educational strategies on knowledge about diabetes and medication/dietary adherence among low health literate patients with type 2 diabetes

AimsTo explore the impact of pictorial image and teach back educational strategies on knowledge, adherence to medication and diet among patients with type 2 diabetes and low health literacy in Saqqez, Iran.MethodsIn this randomized controlled trial, 127 patients with type 2 diabetes who had low health literacy were randomly allocated into three arms of the study (pictorial image, teach back, and control groups). The two intervention groups received education within three weekly sessions, each lasting 20 min. The level of functional health literacy in adults (TOFHLA), diabetes knowledge, and adherence to medication and diet were measured and compared in the three groups before and six weeks after the interventions. We used intention to treat analysis. Data were analyzed using ANOVA and Paired t test.ResultsMean scores of knowledge, adherence to medication and diet revealed significant differences between two intervention groups and control group (P < 0/001) six weeks after intervention.ConclusionsBoth educational strategies increased knowledge, as well as adherence to medications and diet among patients with type 2 diabetes and low health literacy. Both educational strategies seem to be effective for patients with low health literacy and are recommended to be used according to patients’ conditions.     

Association of the induction of a self-care management system with 1-year outcomes in patients hospitalized for heart failure

BackgroundTo perform self-care in patients with heart failure (HF), we developed and implemented a new HF point self-care system, which was characterized by 1) the way weight and HF symptoms were scored (“Heart Failure Points”) and 2) the timing of consultations defined for both patients and health care providers. We examined the association between the induction of the new system and 1-year outcomes in patients hospitalized for HF.MethodsWe retrospectively enrolled 569 consecutive patients into our study who were admitted for HF treatment at our hospital: 275 patients between November 2011 and October 2013 (before the induction of the self-management system) and 294 patients between November 2015 and October 2017 (after the induction). We sought to compare the clinical outcomes between patients using the self-management system and those not using the system after propensity-score (PS) matching. The primary outcome measure was a composite of all-cause death or HF rehospitalization.ResultsThe cumulative 1-year incidence of the primary outcome measure in the use group (n = 153) was significantly lower than that in the non-use group (n = 153) (24.5% vs. 34.9%, respectively; p = 0.031; hazard ratio: 0.62; 95% confidence interval: 0.40?0.96), mainly due to a reduction in HF hospitalization.ConclusionsThe induction of the new self-care system was associated with better 1-year outcomes in patients hospitalized for HF. This system may help patients with HF to achieve more efficient self-care.     

Self-care Management Intervention in Heart Failure (SMART-HF): A Multicenter Randomized Controlled Trial

BackgroundSelf-care behavior is important in avoiding hospitalization for patients with heart failure (HF) and refers to those activities performed with the intention of improving or restoring health and well-being, as well as treating or preventing disease. The purpose was to study the effects of a home-based mobile device on self-care behavior and hospitalizations in a representative HF-population.Methods and ResultsSMART-HF is a randomized controlled multicenter clinical trial, where patients were randomized 1:1 to receive standard care (control group [CG]) or intervention with a home-based tool designed to enhance self-care behavior (intervention group [IG]) and followed for 240 days. The tool educates the patient about HF, monitors objective and subjective symptoms and adjusts loop diuretics. The primary outcome is self-care as measured by the European Heart Failure Self-care behavior scale and the secondary outcome is HF related in-hospital days.A total of 124 patients were recruited and 118 were included in the analyses (CG: n = 60, IG: n = 58). The mean age was 79 years, 39% were female, and 45% had an ejection fraction of less than 40%. Self-care was significantly improved in the IG compared to the CG (median (interquartile range) (21.5 [13.25; 28] vs 26 [18; 29.75], p = 0.014). Patients in the IG spent significantly less time in the hospital admitted for HF (2.2 days less, relative risk 0.48, 95% confidence interval 0.32–0.74, P = .001).ConclusionsThe device significantly improved self-care behavior and reduced in-hospital days in a relevant HF population.