Caregiver Contribution to Self-care in Patients With Heart Failure: A Qualitative Descriptive Study.

BACKGROUND: Caregiver contribution to heart failure (HF) self-care maintenance and management is important in HF care. Literature remains unclear regarding which practices caregivers perform to contribute to self-care for patients with HF, especially in Southern Europe. OBJECTIVE: The objective of this study was to describe caregiver contributions to HF self-care maintenance (ie, treatment adherence and symptom monitoring) and management (ie, managing HF symptoms when they occur). METHODS: Forty HF caregivers were enrolled from 3 outpatient clinics in Italy for a qualitative descriptive study. Data were collected with a semistructured interview and analyzed using content analysis. RESULTS: Caregivers were 53.6 years old on average and mostly female (63.5%). Caregiver contributions to self-care maintenance included practices related to (1) monitoring medication adherence, (2) educating patients about HF symptom monitoring, (3) motivating patients to perform physical activity, and (4) reinforcing dietary restrictions. However, some of these practices were incorrect (eg, weighing the patient only once a week). Caregiver contributions to self-care management included practices related to (1) symptom recognition and (2) treatment implementation. Caregivers were able to recognize symptoms of HF exacerbation (eg, breathlessness) but lacked confidence regarding treatment implementation (eg, administering an extra diuretic). CONCLUSIONS: Although caregivers described contributing to patients' HF self-care maintenance and management, some of their practices were incorrect. Because the caregiver contributions to HF self-care can improve patient outcomes, clinicians should routinely assess caregiver HF self-care practices and provide education and reinforcement regarding evidence-based practices.

The Influence of Mutuality on Self-Care in Heart Failure Patients and Caregivers: A Dyadic Analysis.

Mutuality in patient-caregiver dyad may improve heart failure (HF) patient self-care and caregiver contribution to self-care, but literature is scarce. We evaluated the influence of mutuality and its dimensions on patient-caregiver dyad self-care. A sample of 366 HF patient-caregiver dyads was enrolled. The Actor-Partner Interdependence Model was used to identify the influence of individual patient and caregiver mutuality on their own self-care (actor effect) and on partner self-care (partner effect). The total mutuality score had an actor effect on patient self-care maintenance (i.e., behaviors aimed at maintaining HF stability) and on patient and caregiver self-care confidence. Total score of patient mutuality also had a partner effect on caregiver self-care management (i.e., responses to symptoms of HF exacerbation). Specific mutuality dimensions had different actor and partner effects on patient and caregiver self-care. Interventions to improve mutuality in HF patient-caregiver dyads may influence patient self-care and caregiver contribution to self-care.

Patterns of Self-care in Adults With Heart Failure and Their Associations With Sociodemographic and Clinical Characteristics, Quality of Life, and Hospitalizations: A Cluster Analysis.

BACKGROUND: Self-care is important in heart failure (HF) treatment, but patients may have difficulties and be inconsistent in its performance. Inconsistencies in self-care behaviors may mirror patterns of self-care in HF patients that are worth identifying to provide interventions tailored to patients. OBJECTIVES: The aims of this study are to identify clusters of HF patients in relation to self-care behaviors and to examine and compare the profile of each HF patient cluster considering the patient's sociodemographics, clinical variables, quality of life, and hospitalizations. METHODS: This was a secondary analysis of data from a cross-sectional study in which we enrolled 1192 HF patients across Italy. A cluster analysis was used to identify clusters of patients based on the European Heart Failure Self-care Behaviour Scale factor scores. Analysis of variance and χ test were used to examine the characteristics of each cluster. RESULTS: Patients were 72.4 years old on average, and 58% were men. Four clusters of patients were identified: (1) high consistent adherence with high consulting behaviors, characterized by younger patients, with higher formal education and higher income, less clinically compromised, with the best physical and mental quality of life (QOL) and lowest hospitalization rates; (2) low consistent adherence with low consulting behaviors, characterized mainly by male patients, with lower formal education and lowest income, more clinically compromised, and worse mental QOL; (3) inconsistent adherence with low consulting behaviors, characterized by patients who were less likely to have a caregiver, with the longest illness duration, the highest number of prescribed medications, and the best mental QOL; (4) and inconsistent adherence with high consulting behaviors, characterized by patients who were mostly female, with lower formal education, worst cognitive impairment, worst physical and mental QOL, and higher hospitalization rates. CONCLUSION: The 4 clusters identified in this study and their associated characteristics could be used to tailor interventions aimed at improving self-care behaviors in HF patients.

Psychometric evaluation of the Caregiver Preparedness Scale in caregivers of adults with heart failure.

Well-prepared informal caregivers play an important role in heart failure (HF) care, so an instrument to evaluate their preparedness to care is important. To date, HF caregiver preparedness has been rarely investigated quantitatively. The Caregiver Preparedness Scale (CPS) has been used in other chronic condition populations, but its psychometric characteristics have never been tested in HF caregivers. The purpose of this study was to test the validity and reliability of the 8-item CPS in HF caregivers. In a convenience sample of 317 HF caregivers (72.4% female, mean age 54), we tested the CPS' factorial structure with confirmatory factor analysis (CFA) and its concurrent validity with the Caregiver Contribution to Self-Care of HF Index (CC-SCHFI), and the Hospital Anxiety and Depression Scale (HADS). We also tested CPS' reliability with composite reliability indicators, Cronbach's alpha, factor score determinacy coefficient, and intraclass correlation coefficient (ICC). The CFA for a one-factor model resulted in supportive fit indices (e.g., comparative fit index .97). Significant correlations (p < .05) of the CPS with both the CC-SCHFI and the HADS supported concurrent validity. The composite reliability index, Cronbach's alpha, factor score determinacy coefficient, and ICC were .89, .91, .96, .91, respectively, supporting reliability. Our study provides evidence that the CPS is a valid and reliable instrument to measure HF caregiver preparedness, enabling clinicians, and researchers to target specific interventions to HF caregivers.

Psychometric evaluation of the Heart Failure Somatic Perception Scale in a European heart failure population.

BACKGROUND: The Heart Failure Somatic Perception Scale (HFSPS) is a four-factor instrument used to assess how bothersome are 18 physical signs and symptoms of heart failure. To date, construct validity and reliability of the HFSPS have been evaluated in only one American study and never in a European population. AIM: To evaluate psychometric properties (validity and reliability) of the HFSPS in a European heart failure population. METHODS: This was an Italian multicentre study in which the HFSPS factorial structure was assessed using confirmatory factor analysis. Criterion related validity of the HFSPS was evaluated by correlating its factor scores with the Kansas City Cardiomyopathy Questionnaire (KCCQ) scores using Pearson's r. The HFSPS internal consistency reliability was evaluated using the factor score determinacy coefficient, Cronbach's α and model-based internal consistency index. RESULTS: Most of the participants (n=321) were male (56.6%), with a mean age of 71.48 years (SD, 12.75) and in New York Heart Association class II (61.8%). The confirmatory factor analysis, testing the original HFSPS four-factor structure (dyspnoea, chest discomfort, early and subtle, and oedema), resulted in the following supportive fit indices: χ2 (126, N=321)=337.612, p<0.001, comparative fit index =0.920, Tucker-Lewis index =0.903, root mean square error of approximation =0.072 and standardized root mean square residual =0.045. With regard to the criterion related validity, all the correlations with the KCCQ were statistically significant. The HFSPS reliability resulted in factor score determinacy coefficients ⩾ 0.87 and Cronbach's α ⩾ 0.75, with the exception of the two-item chest discomfort subscale; the model-based reliability coefficient was 0.914. CONCLUSION: The validity and reliability of the HFSPS were supportive in this European sample. The HFSPS can be used to assess how bothersome heart failure signs and symptoms are in order to improve their management.

Psychometric characteristics of the mutuality scale in heart failure patients and caregivers.

BACKGROUND: Higher patient-caregiver mutuality is associated with improved patient and caregiver outcomes, but no studies have tested the psychometric characteristics of the mutuality scale (MS) in heart failure (HF) patient and caregiver population. OBJECTIVES: To test the validity and reliability of the MS. METHODS: A cross-sectional design. The MS validity and reliability were tested with confirmatory factor analysis (CFA) and hypothesis testing, and with Cronbach's alpha and model-based internal consistency index, respectively. RESULTS: CFA supported the validity of the MS in the HF patient and caregiver versions. Hypothesis testing showed significant correlations between both versions of the MS and anxiety, depression, quality of life, and self-care. Also, MS caregiver version scores correlated significantly with caregiver preparedness. Cronbach's alphas and the model-based internal consistency index ranged between 0.72 and 0.94 in both versions. CONCLUSIONS: The Mutuality Scale showed supportive validity and reliability for HF patients and caregivers.

Patterns of self-care and clinical events in a cohort of adults with heart failure: 1 year follow-up.

BACKGROUND: Heart failure (HF) self-care is important in reducing clinical events (all-cause mortality, emergency room visits and hospitalizations). HF self-care behaviors are multidimensional and include maintenance (i.e. daily adherence behaviors), management (i.e. symptom response behaviors) and consulting behaviors (i.e. contacting a provider when appropriate). Across these dimensions, patterns of successful patient engagement in self-care have been observed (e.g. successful in one dimension but not in others), but no previous studies have linked patterns of HF self-care to clinical events. OBJECTIVES: To identify patterns of self-care behaviors in HF patients and their association with clinical events. METHODS: This was a prospective, non-experimental, cohort study. Community-dwelling HF patients (n = 459) were enrolled across Italy, and clinical events were collected one year after enrollment. We measured dimensions of self-care behavior with the Self-Care of HF Index (maintenance, management, and confidence) and the European HF Self-care Behavior Scale (consulting behaviors). We used latent class mixture modeling to identify patterns of HF self-care across dimensions, and Cox proportional hazards modeling to quantify event-free survival over 12 months of follow-up. RESULTS: Patients (mean age 71.8 ± 12.1 years) were mostly males (54.9%). Three patterns of self-care behavior were identified; we labeled each by their most prominent dimensional characteristic: poor symptom response, good symptom response, and maintenance-focused behaviors. Patients with good symptom response behaviors had fewer clinical events compared with those who had poor symptom response behaviors (adjusted hazard ratio = 0.66 [0.46-0.96], p = 0.03). Patients with poor symptom response behaviors had the most frequent clinical events. Patients with poor symptom response and those with maintenance-focused behaviors had a similar frequency of clinical events. CONCLUSIONS: Self-care is significantly associated with clinical events. Routine assessment, mitigation of barriers, and interventions targeting self-care are needed to reduce clinical events in HF patients.

The lived experience of caregivers of persons with heart failure: A phenomenological study.

BACKGROUND: Heart failure (HF) patients need to follow a strict pharmacological and nonpharmacological regimen in order to counteract the burden of the disease, and informal caregivers are an important resource for HF patients in managing and coping with their disease. Few studies have examined the lived experience of these caregivers with a rigorous phenomenological approach, and none have been conducted in Italy. AIM: To describe the lived experience of the caregivers of HF patients. METHODS: A hermeneutic phenomenological method was used. Caregivers were enrolled in a HF clinic in central Italy. Interviews were analysed using a phenomenological approach. Credibility, dependability, confirmability and transferability were adopted in order to strengthen trustworthiness. FINDINGS: Thirty HF caregivers (mean age: 53 years) were enrolled. Of these, 63% of the caregivers were female and 80% were patients' spouses or children. Six themes emerged: (1) fear and worry related to the illness; (2) life changes and restrictions; (3) burden due to caregiving; (4) uncertainty about illness management; (5) helping patients to cope with the illness; and (6) love and affection towards the patient. CONCLUSION: The findings of our study may help providers to guide interventions for HF caregivers. Providers should be supportive of caregivers and provide them with education in order to reduce their fears and worries about the illness and to handle the course of HF and its symptoms. An empathetic and practical approach with caregivers that considers the patient-caregiver relationship may help caregivers to cope with the changes and restrictions that caregiving brings to their lives and to reduce their burden.

Caregiver determinants of patient clinical event risk in heart failure.

BACKGROUND: Preventing hospitalization and improving event-free survival are primary goals of heart failure (HF) treatment according to current European Society of Cardiology guidelines; however, substantial uncertainty remains in our ability to predict risk and improve outcomes. Although caregivers often assist patients to manage their HF, little is known about their influence on clinical outcomes. AIMS: To quantify the influence of patient and caregiver characteristics on patient clinical event risk in HF. METHODS: This was a secondary analysis of data using a sample of Italian adults with HF and their informal caregivers ( n = 183 patient-caregiver dyads). HF patients were followed over 12 months for the following clinical events: hospitalization for HF, emergency room visit for HF or all-cause mortality. Influence of baseline caregiver- and patient-level factors (patient and caregiver age; dyad relationship type; patient New York Heart Association (NYHA) Class, cognition, and comorbidities; and caregiver strain, mental health status, and contributions to HF self-care) on patient risk of death or hospitalization/emergency room use was quantified using Cox proportional hazards regression. RESULTS: Over the course of follow up, 32.8% of patients died, 19.7% were hospitalized for HF and 10.4% visited the emergency room. Higher caregiver strain, better caregiver mental health status and greater caregiver contributions to HF self-care maintenance were associated with significantly better event-free survival. Worse patient functional class and greater caregiver contributions to patient self-care management were associated with significantly worse patient event-free survival. CONCLUSION: Considering caregiving factors together with patient factors significantly increases our understanding of patient clinical event risk in HF.

MOTIVATional intErviewing to improve self-care in Heart Failure patients (MOTIVATE-HF): Study protocol of a three-arm multicenter randomized controlled trial.

AIMS: Heart Failure (HF) self-care improves patient outcomes but trials designed to improve HF self-care have shown inconsistent results. Interventions may be more effective in improving self-care if they mobilize support from providers, promote self-efficacy, increase understanding of HF, increase the family involvement, and are individualized. All of these elements are emphasized in motivational interviewing (MI); few trials have been conducted using MI in HF patients and rarely have caregivers been involved in MI interventions. The aim of this study will be to evaluate if MI improves self-care maintenance in HF patients, and to determine if MI improves the following secondary outcomes: a) in HF patients: self-care management, self-care confidence, symptom perception, quality of life, anxiety/depression, cognition, sleep quality, mutuality with caregiver, hospitalizations, use of emergency services, and mortality; b) in caregivers: caregiver contribution to self-care, quality of life, anxiety/depression, sleep, mutuality with patient, preparedness, and social support. METHODS: A three-arm randomized controlled trial will be conducted in a sample of 240 HF patients and caregivers. Patients and caregivers will be randomized to the following arms: 1) MI intervention to patients only; 2) MI intervention to patients and caregivers; 3) standard of care to patients and caregivers. The primary outcome will be measured in patients 3months after enrollment. Primary and secondary outcomes also will be evaluated 6, 9 and 12months after enrollment. CONCLUSION: This study will contribute to understand if MI provided to patients and caregivers can improve self-care. Because HF is rising in prevalence, findings can be useful to reduce the burden of the disease.

Psychometric characteristics of the caregiver burden inventory in caregivers of adults with heart failure.

BACKGROUND: A better understanding of caregiver burden and its determinants is essential to support caregivers. Many instruments have been developed to measure caregiver burden in various illness contexts, but few have been psychometrically tested for caregivers of heart failure patients. AIMS: The aim of this study was to test the validity (factorial and concurrent validity) and reliability (internal consistency) of the caregiver burden inventory (CBI) in a cohort of caregivers of heart failure patients. METHODS: This was a secondary analysis from a cross-sectional study on heart failure patients and their caregivers enrolled from various Italian outpatient centres. The factorial validity of the CBI was tested with confirmatory factor analysis, and concurrent validity was tested correlating CBI scores with the short form-12 health survey scores. The internal consistency reliability was assessed with Cronbach's alpha. RESULTS: In total, 505 caregivers of heart failure patients (52.2% women, mean age 56.59±14.9 years) were enrolled. Confirmatory factor analyses confirmed the original five-factor model: time-dependence, developmental, physical, social and emotional burden. This model fits the data better than the single-factor model, and the dimensions showed high internal consistency reliability (Cronbach's alpha 0.91 for time-dependence burden, 0.92 for developmental burden, 0.88 for physical burden, 0.89 for social burden and 0.93 for emotional burden; 0.96 for the total score of burden). CONCLUSION: The CBI proved to be a good multidimensional instrument for evaluating the burden in caregivers of heart failure patients and can be used in clinical practice and research. This tool can be considered to tailor interventions aimed at improving caregiver outcomes.

[Not Available]. / I disegni di ricerca con metodo misto: un approccio metodologico innovativo per la ricerca infermieristica.

. Mixed methods designs: an innovative methodological approach for nursing research. The mixed method research designs (MM) combine qualitative and quantitative approaches in the research process, in a single study or series of studies. Their use can provide a wider understanding of multifaceted phenomena. This article presents a general overview of the structure and design of MM to spread this approach in the Italian nursing research community. The MM designs most commonly used in the nursing field are the convergent parallel design, the sequential explanatory design, the exploratory sequential design and the embedded design. For each method a research example is presented. The use of MM can be an added value to improve clinical practices as, through the integration of qualitative and quantitative methods, researchers can better assess complex phenomena typical of nursing.

Clinical and socio-demographic determinants of self-care behaviours in patients with heart failure and diabetes mellitus: A multicentre cross-sectional study.

BACKGROUND: Self-care is vital for patients with heart failure to maintain health and quality of life, and it is even more vital for those who are also affected by diabetes mellitus, since they are at higher risk of worse outcomes. The literature is unclear on the influence of diabetes on heart failure self-care as well as on the influence of socio-demographic and clinical factors on self-care. OBJECTIVES: (1) To compare self-care maintenance, self-care management and self-care confidence of patients with heart failure and diabetes versus those heart failure patients without diabetes; (2) to estimate if the presence of diabetes influences self-care maintenance, self-care management and self-care confidence of heart failure patients; (3) to identify socio-demographic and clinical determinants of self-care maintenance, self-care management and self-care confidence in patients with heart failure and diabetes. DESIGN: Secondary analysis of data from a multicentre cross-sectional study. SETTING: Outpatient clinics from 29 Italian provinces. PARTICIPANTS: 1192 adults with confirmed diagnosis of heart failure. METHODS: Socio-demographic and clinical data were abstracted from patients' medical records. Self-care maintenance, self-care management and self-care confidence were measured with the Self-Care of Heart Failure Index Version 6.2; each scale has a standardized score from 0 to 100, where a score <70 indicates inadequate self-care. Multiple linear regression analyses were performed. RESULTS: Of 1192 heart failure patients, 379 (31.8%) had diabetes. In these 379, heart failure self-care behaviours were suboptimal (means range from 53.2 to 55.6). No statistically significant differences were found in any of the three self-care measures in heart failure patients with and without diabetes. The presence of diabetes did not influence self-care maintenance (p=0.12), self-care management (p=0.21) or self-care confidence (p=0.51). Age (p=0.04), number of medications (p=0.01), presence of a caregiver (p=0.04), family income (p=0.009) and self-care confidence (p<0.001) were determinants of self-care maintenance. Gender (p=0.01), number of medications (p=0.004) and self-care confidence (p<0.001) were significant determinants of self-care management. Number of medications (p=0.002) and cognitive function (p<0.001) were determinants of self-care confidence. CONCLUSIONS: Self-care was poor in heart failure patients with diabetes mellitus. This population needs more intensive interventions to improve self-care. Determinants of self-care in heart failure patients with diabetes mellitus should be systematically assessed by clinicians to identify patients at risk of inadequate self-care.