Development and initial testing of the self‐care of chronic illness inventory

Aim The aim was to develop and psychometrically test the self‐care of chronic illness Inventory, a generic measure of self‐care. Background Existing measures of self‐care are disease‐specific or behaviour‐specific; no generic measure of self‐care exists. Design Cross‐sectional survey. Methods We developed a 20‐item self‐report instrument based on the Middle Range Theory of Self‐Care of Chronic Illness, with three separate scales measuring Self‐Care Maintenance, Self‐Care Monitoring, and Self‐Care Management. Each of the three scales is scored separately and standardized 0–100 with higher scores indicating better self‐care. After demonstrating content validity, psychometric testing was conducted in a convenience sample of 407 adults (enrolled from inpatient and outpatient settings at five sites in the United States and ResearchMatch.org). Dimensionality testing with confirmatory factor analysis preceded reliability testing. Results The Self‐Care Maintenance scale (eight items, two dimensions: illness‐related and health‐promoting behaviour) fit well when tested with a two‐factor confirmatory model. The Self‐Care Monitoring scale (five items, single factor) fitted well. The Self‐Care Management scale (seven items, two factors: autonomous and consulting behaviour), when tested with a two‐factor confirmatory model, fitted adequately. A simultaneous confirmatory factor analysis on the combined set of items supported the more general model. Conclusion The self‐care of chronic illness inventory is adequate in reliability and validity. We suggest further testing in diverse populations of patients with chronic illnesses

Factors associated with delay in seeking care for acute decompensated heart failure

Background: Despite reports that persons with heart failure (HF) symptoms delay up to 7 days before seeking treatment, few studies have prospectively explored specific factors influencing treatment-seeking delay in this population. Objective: The purpose of this study was to explore how factors related to the symptom experience, such as perception (number and intensity), evaluation (attribution and understanding), and response (behaviors of patients and others) influence delay in seeking treatment for symptoms of acute decompensated HF. Methods: Patients hospitalized for acute HF were enrolled into an exploratory, descriptive study. Only those who had HF for 3 months or longer and a previous HF admission were eligible. Data on factors related to the symptom experience, response to symptoms, and delay time were collected by interview during hospitalization. Delay time measured in hours was analyzed using generalized linear modeling. Results: The sample of 131 adults was predominately older (77 ± 11.3 years) men (55.7%). The median delay time was 60 hours (2.5 days), with a range of 1 to 336 hours (14 days). Only 34 (25.9%) sought care in less than 12 hours. Three variables were statistically significant determinants of long delay time—waiting to see if the symptoms would abate, receiving a passive response to symptoms from others, and living in a rural environment. These variables explained 13.9% of the variance in delay time. Clinical characteristics were not significant predictors of delay. Conclusions: The response of patients (wait-and-see) and others (eg, don’t worry) contributed to delay, as did living in a rural environment. Evaluative characteristics of attribution and understanding were not significant determinants of delay, suggesting that patient education alone will not effectively decrease delay. Instead, interventions directed toward decision making in response to symptoms and inclusion of family members in such discussions may be more effective

Nurses\u27 attitudes and emotions toward caring for adults with intellectual disabilities: Results of a cross-sectional, correlational-predictive research study

BACKGROUND: Negative healthcare provider attitudes may contribute to healthcare disparities in adults with intellectual disabilities. This study identified predictors of nurses\u27 attitudes and emotions toward caring for adults with intellectual disabilities in the United States. METHOD: A convenience sample of 248 nurses was used to collect nurses\u27 attitudes and emotions toward caring for adults with intellectual disabilities (Adapted Caring for Adults with Disabilities Questionnaire) and quality of life beliefs (Prognostic Beliefs Scale). RESULTS: Overall, nurses held less positive attitudes toward caring for an adult with intellectual disability versus a physical disability. Intellectual disability nurses held more positive attitudes and emotions and less negative emotions than non-intellectual disability nurses. Quality of life beliefs predicted nurse attitude, positive emotions and negative emotions. The number of adults with intellectual disabilities cared for during the nurse\u27s career predicted negative emotions. CONCLUSIONS: Future interventions should focus on improving nurses\u27 understanding of the quality of life of adults with intellectual disabilities

Symptom clusters of heart failure

Patients with heart failure (HF) report multiple symptoms. Change in symptoms is an indicator of HF decompensation. Patients have difficulty differentiating HF symptoms from comorbid illness or aging. The study purpose was to identify the number, type, and combination of symptoms in hospitalized HF patients and test relationships with comorbid illness and age. A secondary analysis from a HF registry (N=687) was conducted. The sample was 51.7% female, mean age 71±12.5 years. The theory of unpleasant symptoms informed the study regarding the multidimensional nature of symptoms. Factor analysis of 9 items from the Minnesota Living with HF Questionnaire resulted in three factors, acute and chronic volume overload and emotional distress. Clusters occurred more frequently in older patients, but caused less impact

Patterns of heart failure dyadic illness management : The important role of gender

Background The ways in which patients with heart failure (HF) and their care partners work together to manage HF are often overlooked. Objective The aim of this study was to identify and compare different patterns of HF dyadic illness management. Methods This was a secondary analysis of data on HF dyads. Heart failure management was measured using patient and care partner versions of the Self-Care of HF Index and European HF Self-care Behavior Scale. Latent class modeling was used to identify patterns of HF dyadic management. Results The mean age of the 62 patients and their care partners was 59.7 ± 11.8 and 58.1 ± 11.9 years, respectively. A majority of patients (71.0%) had class III/IV HF, and a majority of the couples (95.2%) were married. Two distinct dyadic patterns were observed, 1 collaborative management type (n = 42, 67.7%) and 1 autonomous management type (n = 20, 32.3%). Dyads in the autonomous pattern were mostly female patients with male care partners; patients in this pattern also were more anxious and depressed, and reported worse relationship quality compared with collaborative dyads. Conclusion There is an engendered spectrum of collaboration in how HF patient–care partner dyads work together to manage HF that needs to be considered in clinical care and research

Patterns of Heart Failure Dyadic Illness Management

Background The ways in which patients with heart failure (HF) and their care partners work together to manage HF are often overlooked. Objective The aim of this study was to identify and compare different patterns of HF dyadic illness management. Methods This was a secondary analysis of data on HF dyads. Heart failure management was measured using patient and care partner versions of the Self-Care of HF Index and European HF Self-care Behavior Scale. Latent class modeling was used to identify patterns of HF dyadic management. Results The mean age of the 62 patients and their care partners was 59.7 ± 11.8 and 58.1 ± 11.9 years, respectively. A majority of patients (71.0%) had class III/IV HF, and a majority of the couples (95.2%) were married. Two distinct dyadic patterns were observed, 1 collaborative management type (n = 42, 67.7%) and 1 autonomous management type (n = 20, 32.3%). Dyads in the autonomous pattern were mostly female patients with male care partners; patients in this pattern also were more anxious and depressed, and reported worse relationship quality compared with collaborative dyads. Conclusion There is an engendered spectrum of collaboration in how HF patient–care partner dyads work together to manage HF that needs to be considered in clinical care and research

Sociodemographic indictors of social position and self-care maintenance in adults with heart failure

Social determinants of health (SDH) are known to influence health. Adequate self-care maintenance improves heart failure (HF) outcomes. However, the relationship between self-care maintenance and SDH remains unclear. Explore the relationship between sociodemographic indicators of social position and self-care maintenance in adults with HF. This was a secondary analysis of data from a cross-sectional descriptive study of 543 adults with HF. Participants completed the Self-Care of HF Index and a sociodemographic survey. We used multiple regression with backward elimination to determine which SDH variables were determinants of self-care maintenance. Marital status (p = .02) and race (p = .02) were significant determinants of self-care maintenance. Education (p = .06) was highest in Whites (35.6%). These variables explained only 3.8% of the variance in self-care maintenance. Race, education, and marital status were associated with HF self-care maintenance. SDH is complex and cannot be explained with simple sociodemographic characteristics

Psychometric testing of the Revised Self-Care of Heart Failure Index

Background: Self-care is essential in people with chronic heart failure (HF). The process of self-care was refined in the revised situation specific theory of HF self-care, so we updated the instrument measuring self-care to match the updated theory. The aim of this study was to test the psychometric properties of the revised 29-item Self-Care of Heart Failure Index (SCHFI). Methods: A cross-sectional design was used in the primary psychometric analysis using data collected at 5 sites in the United States. A longitudinal design was used at the site collecting test-retest data. We tested SCHFI validity with confirmatory factor analysis and predictive validity in relation to health-related quality of life. We tested SCHFI reliability with Cronbach [alpha], global reliability index, and test-retest reliability. Results: Participants included 631 adults with HF (mean age, 65 +/- 14.3 years; 63% male). A series of confirmatory factor analyses supported the factorial structure of the SCHFI with 3 scales: Self-Care Maintenance (with consulting behavior and dietary behavior dimensions), Symptom Perception (with monitoring behavior and symptom recognition dimensions), and Self-Care Management (with recommended behavior and problem-solving behavior dimensions). Reliability estimates were 0.70 or greater for all scales. Predictive validity was supportive with significant correlations between SCHFI scores and health-related quality-of-life scores. Conclusions: Our analysis supports validity and reliability of the SCHFI v7.2. It is freely available to users on the website: www.self-care-measures.co