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1.
J Cardiovasc Nurs ; 2024 Apr 16.
Artigo em Inglês | MEDLINE | ID: mdl-38622769

RESUMO

BACKGROUND: The Self-Care of Heart Failure Index (SCHFI) is a widely used instrument used to measure self-care in both research and clinical settings. The lack of a psychometric evaluation of the traditional Chinese version of the SCHFI (SCHFI-C) might limit its utilization in non-Mainland Chinese populations such as Hong Kong, Macau, and Taiwan. OBJECTIVE: This study aimed to evaluate the psychometric properties of the SCHFI-C v.7.2. METHODS: Participants included 365 adults with heart failure. Breslin's method of translation was used to translate the SCHFI v.7.2 into traditional Chinese. Exploratory factor analysis was conducted to examine the dimensionality structure of each scale. Then, composite reliability was calculated to assess the reliability of 3 scales. Construct validity was examined by hypothesis testing and known-group comparisons. RESULTS: The results of exploratory factor analysis suggest its multidimensionality of each scale. More specifically, the findings indicated a unique internal structure of the self-care maintenance ("lifestyle-related behaviors" and "consulting behaviors") and self-care management ("self-reliance behaviors" and "help-seeking behaviors") scales. The composite reliability of 3 scales were 0.81, 0.88, and 0.82, respectively, reaching adequate level. As for construct validity, the significant associations between the 3 SCHFI domains and self-care confidence as well as significant group difference among patients of different ages and educational backgrounds supported good construct validity. CONCLUSIONS: This study provides evidence of the reliability and validity of the SCHFI-C v.7.2. The traditional SCHFI-C v.7.2 can serve as a valid and reliable outcome measure to evaluate the effects of self-care-promoting interventions.

2.
Patient Educ Couns ; 123: 108227, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38430731

RESUMO

OBJECTIVE: Insights into how symptoms influence self-care can guide patient education and improve symptom control. This study examined symptom characteristics, causal attributions, and contextual factors influencing self-care of adults with arthritis, asthma, chronic obstructive pulmonary disease, diabetes, or heart failure. METHODS: Adults (n = 81) with a symptomatic chronic illness participated in a longitudinal observational study. Using Ecological Daily Assessment, participants described one symptom twice daily for two weeks, rating its frequency, severity, bothersomeness, duration, causes, and self-care. RESULTS: The most frequent symptoms were fatigue and shortness of breath. Pain, fatigue, and joint stiffness were the most severe and bothersome. Most participants engaged in active self-care, but those with fatigue and pain engaged in passive self-care (i.e., rest or do nothing), especially when symptoms were infrequent, mild, somewhat bothersome, and fleeting. In people using passive self-care, thoughts, feelings, and the desire to conceal symptoms from others interfered with self-care. CONCLUSION: Most adults with a chronic illness take an active role in managing their symptoms but some conceal or ignore symptoms until the frequency, severity, bothersomeness, or duration increases. PRACTICE IMPLICATIONS: When patients report symptoms, asking about self-care behaviors may reveal inaction or ineffective approaches. A discussion of active self-care options may improve symptom control.


Assuntos
Asma , Doença Pulmonar Obstrutiva Crônica , Adulto , Humanos , Autocuidado , Asma/terapia , Doença Pulmonar Obstrutiva Crônica/terapia , Dor/complicações , Fadiga
3.
J Cardiovasc Nurs ; 2024 Mar 21.
Artigo em Inglês | MEDLINE | ID: mdl-38509035

RESUMO

BACKGROUND: Sleep disruption, a common symptom among patients requiring cardiovascular surgery, is a potential risk factor for the development of postoperative delirium. Postoperative delirium is a disorder of acute disturbances in cognition associated with prolonged hospitalization, cognitive decline, and mortality. OBJECTIVE: The aim of this study was to evaluate the feasibility and acceptability of using polysomnography (PSG) to capture sleep in patients with scheduled cardiothoracic surgery. METHODS: Wireless limited PSG assessed sleep at baseline (presurgery at home), postoperatively in the intensive care unit, and at home post hospital discharge. Primary outcomes were quality and completeness of PSG signals, and acceptability by participants and nursing staff. RESULTS: Among 15 patients, PSG data were of high quality, and mean percentage of unscorable data was 5.5% ± 11.1%, 3.7% ± 5.4%, and 3.7% ± 8.4% for baseline, intensive care unit, and posthospitalization measurements, respectively. Nurses and patients found the PSG monitor acceptable. CONCLUSIONS: Wireless, limited PSG to capture sleep across the surgical continuum was feasible, and data were of high quality. Authors of future studies will evaluate associations of sleep indices and development of postoperative delirium in this high-risk population.

4.
Innov Aging ; 8(1): igad132, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38235487

RESUMO

Background and Objectives: Sleep disturbances occur in >60% of persons living with cognitive impairment, affecting their quality of life (QOL). Regulating the sleep-wake cycle through engaging cognitive, physical, and sensory-based activities delivered at strategic times may reduce sleep disturbances and be a feasible nonpharmacological treatment for sleep problems. The objective of this trial was to test the efficacy of a timed-activity intervention in improving QOL and sleep disturbances in persons living with cognitive impairment. Research Design and Method: Randomized 2-group parallel design involving 209 dyads of community-residing persons living with cognitive impairment and care partners. Dyads were randomly assigned (1:1) to 1-hr home activity sessions administered weekly in the morning, afternoon, or evening over 4 weeks (the Healthy Patterns Sleep Program), or to an attention-control condition consisting of sleep hygiene training plus education on home safety and health promotion. QOL, objective and subjective sleep quality, and neuropsychiatric symptoms were assessed at baseline and 4 weeks later. Results: QOL was significantly improved in the intervention group compared to control (p = .0491). There were no significant effects on objective or subjective sleep or neuropsychiatric symptoms. In a subgroup analysis, subjective sleep as measured by the PROMIS (Patient Reported Outcomes Measurement Information System) Sleep-Related Impairment survey was significantly improved in the intervention group compared to the control group for individuals with symptoms of depression (p = .015) or poor observed sleep at baseline (p = .005). Discussion and Implications: The Healthy Patterns Intervention may benefit QOL for persons living with cognitive impairment and those with poor subjective sleep. A longer dose may be necessary to elicit improvement in actigraphically measured sleep-wake activity. Clinical Trial Registration Number: NCT0368218 5.

5.
Artigo em Inglês | MEDLINE | ID: mdl-38168812

RESUMO

AIMS: Patients with heart failure (HF) experience various signs and symptoms and have difficulties in perceiving them. Integrating insights from patients who have engaged in the process of symptom perception is crucial for enhancing our understanding of the theoretical concept of symptom perception. This study aimed to describe how patients with HF perceive symptoms through the processes of monitoring, awareness, and evaluation and what influences the process. METHODS AND RESULTS: Using a qualitative descriptive design, we conducted in-person semi-structured interviews with a purposeful sample of 40 adults experiencing an unplanned hospitalization for a HF symptom exacerbation. We elicited how patients monitor, become aware of, and evaluate symptoms prior to hospitalization. Data were analysed using directed qualitative content analysis. One overarching theme and three major themes emerged. Patients demonstrated Body listening, which involved active and individualized symptom monitoring tactics to observe bodily changes outside one's usual range. Trajectory of bodily change involved the patterns or characteristics of bodily changes that became apparent to patients. Three subthemes-sudden and alarming change, gradual change, and fluctuating change emerged. Patients evaluated symptoms through an Exclusionary process, sequentially attributing symptoms to a cause through a cognitive process of excluding possible causes until the most plausible cause remained. Facilitators and barriers to symptom monitoring, awareness, and evaluation were identified. CONCLUSION: This study elaborates the comprehensive symptom perception process used by adults with HF. Tailored nursing interventions should be developed based on the factors identified in each phase of the process to improve symptom perception in HF.

6.
Clin Nurs Res ; : 10547738231223790, 2024 Jan 30.
Artigo em Inglês | MEDLINE | ID: mdl-38288601

RESUMO

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.

7.
J Cardiovasc Nurs ; 2024 Jan 16.
Artigo em Inglês | MEDLINE | ID: mdl-38227624

RESUMO

BACKGROUND: Black patients with heart failure (HF) report worse quality of life (QoL) than White patients. Few investigators have examined mediators of the association between race and QoL, but depressive symptoms and sleep quality are associated with QoL. OBJECTIVE: The aim of this study was to determine whether depressive symptoms and sleep quality are mediators of the relationship between race and QoL among patients with HF. METHODS: This was a cross-sectional study. We included 271 outpatients with HF. Self-reported race (White/Black), depressive symptoms (Patient Health Questionnaire), sleep quality (Pittsburgh Sleep Quality Index), and QoL (Kansas City Cardiomyopathy Questionnaire) were collected at baseline. A serial multiple mediator analysis was conducted using the PROCESS macro for SPSS. RESULTS: Ninety-six patients (35.4%) were Black. Black participants reported higher levels of depressive symptoms and poorer sleep quality than White participants. Race was not directly associated with QoL but indirectly associated with QoL through depressive symptoms and poorer sleep quality. Because of higher levels of depressive symptoms and poorer sleep quality, Black participants reported poorer QoL than White participants. CONCLUSIONS: Depressive symptoms and sleep quality together mediated the relationship between race and QoL. These findings suggest that screening for depressive symptoms and sleep quality could identify patients at risk for poor QoL, especially in Black patients.

8.
J Adv Nurs ; 80(4): 1380-1392, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37788062

RESUMO

AIM: Patients with heart failure experience multiple co-occurring symptoms that lower their quality of life and increase hospitalization and mortality rates. So far, no heart failure symptom cluster study recruited patients from community settings or focused on symptoms predicting most clinical outcomes. Considering physical and psychological symptoms together allows understanding how they burden patients in different combinations. Moreover, studies predicting symptom cluster membership using variables other than symptoms are lacking. We aimed to (a) cluster heart failure patients based on physical and psychological symptoms and (b) predict symptom cluster membership using sociodemographic/clinical variables. DESIGN: Secondary analysis of MOTIVATE-HF trial, which recruited 510 heart failure patients from a hospital, an outpatient and a community setting in Italy. METHODS: Cluster analysis was performed based on the two scores of the Hospital Anxiety-Depression scale and two scores of the Heart-Failure Somatic Perception Scale predicting most clinical outcomes. ANOVA and chi-square test were used to compare patients' characteristics among clusters. For the predictive analysis, we split the data into a training set and a test set and trained three classification models on the former to predict patients' symptom cluster membership based on 11 clinical/sociodemographic variables. Permutation analysis investigated which variables best predicted cluster membership. RESULTS: Four clusters were identified based on the intensity and combination of psychological and physical symptoms: mixed distress (high psychological, low physical symptoms), high distress, low distress and moderate distress. Clinical and sociodemographic differences were found among clusters. NYHA-class (New York Heart Association) and sleep quality were the most important variables in predicting symptom cluster membership. CONCLUSIONS: These results can support the development of tailored symptom management intervention and the investigation of symptom clusters' effect on patient outcomes. The promising results of the predictive analysis suggest that such benefits may be obtained even when direct access to symptoms-related data is absent. IMPLICATIONS: These results may be particularly useful to clinicians, patients and researchers because they highlight the importance of addressing clusters of symptoms, instead of individual symptoms, to facilitate symptom detection and management. Knowing which variables best predict symptom cluster membership can allow to obtain such benefits even when direct access to symptoms-data is absent. IMPACT: Four clusters of heart failure patients characterized by different intensity and combination of psychological and physical symptoms were identified. NYHA class and sleep quality appeared important variables in predicting symptom cluster membership. REPORTING METHOD: The authors have adhered to the EQUATOR guidelines STROBE to report observational cross-sectional studies. PATIENT OR PUBLIC CONTRIBUTION: Patients were included only for collecting their data.


Assuntos
Insuficiência Cardíaca , Qualidade de Vida , Humanos , Estudos Transversais , Síndrome , Insuficiência Cardíaca/psicologia , Análise por Conglomerados
9.
Int J Nurs Stud ; 150: 104665, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38103267

RESUMO

OBJECTIVE: The aim of this study was to identify for the first time patterns of self-care decision-making (i.e. the extent to which participants viewed contextual factors influencing decisions about symptoms) and associated factors among community-dwelling adults with chronic illness. METHODS: This was a secondary analysis of data collected during the development and psychometric evaluation of the 27-item Self-Care Decisions Inventory that is based on Naturalistic Decision-Making (n = 430, average age = 54.9 ±â€¯16.2 years, 70.2 % female, 87.0 % Caucasian, average number of chronic conditions = 3.6 ±â€¯2.8). Latent class mixture modeling was used to identify patterns among contextual factors that influence self-care decision-making under the domains of external, urgency, uncertainty, cognitive/affective, waiting/cue competition, and concealment. Multivariate multinomial regression was used to identify additional socio-demographic, clinical, and self-care behavior factors that were different across the patterns of self-care decision-making. RESULTS: Three patterns of self-care decision-making were identified in a cohort of 430 adults. A 'maintainers' pattern (48.1 %) consisted of adults with limited contextual influences on self-care decision-making except for urgency. A 'highly uncertain' pattern (23.0 %) consisted of adults whose self-care decision-making was largely driven by uncertainty about the cause or meaning of the symptom. A 'distressed concealers' pattern (28.8 %) consisted of adults whose self-care decision-making was highly influenced by external factors, cognitive/affective factors and concealment. Age, education, financial security and specific symptoms were significantly different across the three patterns in multivariate models. CONCLUSION: Adults living with chronic illness vary in the extent to which contextual factors influence decisions they make about symptoms, and would therefore benefit from different interventions.


Assuntos
Emoções , Autocuidado , Adulto , Humanos , Feminino , Pessoa de Meia-Idade , Idoso , Masculino , Incerteza , Doença Crônica , Estudos Transversais , Tomada de Decisões
10.
J Cardiovasc Nurs ; 38(6): 555-567, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37816083

RESUMO

BACKGROUND: The burden of heart failure (HF) is unequally distributed among population groups. Few study authors have described social determinants of health (SDoH) enabling/impeding self-care. AIM: The aim of this study was to explore the relationship between SDoH and self-care in patients with HF. METHODS: Using a convergent mixed-methods design, we assessed SDoH and self-care in 104 patients with HF using the Protocol for Responding to and Assessing Patients' Assets, Risks, and Experiences (PRAPARE) and the Self-Care of HF Index v7.2 with self-care maintenance, symptom perception, and self-care management scales. Multiple regression was used to assess the relationship between SDoH and self-care. One-on-one in-depth interviews were conducted in patients with poor (standardized score ≤ 60, n = 17) or excellent (standardized score ≥ 80, n = 20) self-care maintenance. Quantitative and qualitative results were integrated. RESULTS: Participants were predominantly male (57.7%), with a mean age of 62.4 ± 11.6 years, with health insurance (91.4%) and some college education (62%). Half were White (50%), many were married (43%), and most reported adequate income (53%). The money and resources core domain of PRAPARE significantly predicted self-care maintenance ( P = .019), and symptom perception ( P = .049) trended significantly after adjusting for other PRAPARE core domains (personal characteristics, family and home, and social and emotional health) and comorbidity. Participants discussed social connectedness, health insurance coverage, individual upbringing, and personal experiences as facilitators of self-care behavior. CONCLUSION: Several SDoH influence HF self-care. Patient-specific interventions that address the broader effects of these factors may promote self-care in patients with HF.


Assuntos
Insuficiência Cardíaca , Autocuidado , Humanos , Adulto , Masculino , Pessoa de Meia-Idade , Idoso , Feminino , Autocuidado/psicologia , Determinantes Sociais da Saúde , Renda , Comorbidade , Insuficiência Cardíaca/terapia , Insuficiência Cardíaca/psicologia
11.
J Cardiovasc Nurs ; 2023 Sep 27.
Artigo em Inglês | MEDLINE | ID: mdl-37755707

RESUMO

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.

12.
Endocr Pract ; 29(10): 762-769, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37611750

RESUMO

OBJECTIVE: To evaluate the discriminant and convergent validities of the Hypoglycemia Awareness Questionnaire Impaired Awareness (HypoA-Q IA) subscale and establish a diagnostic threshold for the classification of impaired awareness of hypoglycemia (IAH) in adults with type 1 diabetes (T1D). METHODS: Twenty-one adults with T1D (male, 48%; median age, 36 years; and T1D duration, 21 years) completed the HypoA-Q IA subscale, Clarke, and hypoglycemia severity (HYPO) scores, continuous glucose monitoring, and hyperinsulinemic hypoglycemic clamp testing. Those with IAH defined by a Clarke score of ≥4 (n = 10) and who experienced severely problematic hypoglycemia and/or marked glycemic lability started automated insulin delivery as part of an 18-month intervention study with the 6-monthly paired assessment of the HypoA-Q IA subscale, Clarke score, HYPO score and continuous glucose monitoring, and hypoglycemic clamp testing at baseline and 6 and 18 months. RESULTS: The HypoA-Q IA subscale discriminated between those with and without IAH defined by the Clarke score (W = 110.5; P <.001). During intervention, the HypoA-Q IA subscale demonstrated convergent validity via significant relationships with the Clarke (r = 0.72; P <.001) and HYPO (r = 0.60; P <.001) scores; hypoglycemia exposure below 70 (r = 0.53; P <.01), 60 (r = 0.50; P <.01), and 54 (r = 0.48; P <.01) mg/dL; and autonomic symptom (r = -0.53; P <.05), epinephrine (r = -0.68; P <.001), and pancreatic polypeptide (r = -0.52; P <.05) responses to insulin-induced hypoglycemia. The receiver operating characteristic curve analysis revealed that the HypoA-Q IA subscale was an excellent predictor of an abnormal symptom response to insulin-induced hypoglycemia (area under the curve, 0.86) with a score of 12, which was the optimal threshold for IAH classification (sensitivity, 83%; specificity, 80%). CONCLUSION: These findings support the validity of the HypoA-Q IA subscale and propose a HypoA-Q IA diagnostic threshold to identify IAH in both clinical and research settings.


Assuntos
Diabetes Mellitus Tipo 1 , Hipoglicemia , Adulto , Humanos , Masculino , Diabetes Mellitus Tipo 1/complicações , Diabetes Mellitus Tipo 1/tratamento farmacológico , Glicemia , Automonitorização da Glicemia , Hipoglicemia/diagnóstico , Hipoglicemia/induzido quimicamente , Hipoglicemiantes/efeitos adversos , Inquéritos e Questionários , Insulina/efeitos adversos
13.
Circulation ; 148(13): 1061-1069, 2023 09 26.
Artigo em Inglês | MEDLINE | ID: mdl-37646159

RESUMO

The evolution of the electronic health record, combined with advances in data curation and analytic technologies, increasingly enables data sharing and harmonization. Advances in the analysis of health-related and health-proxy information have already accelerated research discoveries and improved patient care. This American Heart Association policy statement discusses how broad data sharing can be an enabling driver of progress by providing data to develop, test, and benchmark innovative methods, scalable insights, and potential new paradigms for data storage and workflow. Along with these advances come concerns about the sensitive nature of some health data, equity considerations about the involvement of historically excluded communities, and the complex intersection of laws attempting to govern behavior. Data-sharing principles are therefore necessary across a wide swath of entities, including parties who collect health information, funders, researchers, patients, legislatures, commercial companies, and regulatory departments and agencies. This policy statement outlines some of the key equity and legal background relevant to health data sharing and responsible management. It then articulates principles that will guide the American Heart Association's engagement in public policy related to data collection, sharing, and use to continue to inform its work across the research enterprise, as well as specific examples of how these principles might be applied in the policy landscape. The goal of these principles is to improve policy to support the use or reuse of health information in ways that are respectful of patients and research participants, equitable in impact in terms of both risks and potential benefits, and beneficial across broad and demographically diverse communities in the United States.


Assuntos
American Heart Association , Disseminação de Informação , Humanos , Estados Unidos , Coleta de Dados
14.
J Cardiovasc Nurs ; 2023 Aug 08.
Artigo em Inglês | MEDLINE | ID: mdl-37550831

RESUMO

BACKGROUND: Patients with heart failure experience high symptom burden, which can be mitigated with adequate self-care. Caregiver contribution to self-care has been theorized to improve patient symptom burden. The mediating role of patient self-care in this relationship has not been tested yet. OBJECTIVES: The aim of this study was to test whether (a) caregiver contribution to self-care influences patient self-care, (b) patient self-care influences symptom burden, and (c) patient self-care mediates the relationship between caregiver contribution to self-care and symptom burden. METHODS: In this study, the authors conducted a secondary analysis of the baseline and 3-month data from the MOTIVATE-HF trial, which enrolled 510 dyads (patient with heart failure and caregiver) in Italy. Multigroup confirmatory factor analysis was used to test measurement invariance. Autoregressive longitudinal path analysis with contemporaneous mediation was used to test our hypotheses. RESULTS: On average, caregivers were 54 years old and mainly female, whereas patients were 72.4 years old and mainly male. Better caregiver contribution to self-care maintenance was associated with better patient self-care maintenance (ß = 0.280, P < .001), which, in turn, was associated with lower symptom burden (ß = -0.280, P < .001). Patient self-care maintenance mediated the effect of caregiver contribution to self-care maintenance on symptom burden (ß = -0.079; 95% bias-corrected bootstrapped confidence interval, -0.130 to -0.043). Better caregiver contribution to self-care management was associated with better patient self-care management (ß = 0.238, P = .006). The model significantly accounted for 37% of the total variance in symptom burden scores (P < .001). CONCLUSIONS: This study expands the situation-specific theory of caregiver contribution to heart failure self-care and provides new evidence on the role of caregiver contribution to self-care and patient self-care on symptom burden in heart failure.

15.
Alzheimers Dement (N Y) ; 9(2): e12381, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37143583

RESUMO

Introduction: A tremendous burden is placed on frontotemporal degeneration (FTD) caregivers who sacrifice their own self-care to manage the functional impairments of their loved one, contributing to high levels of stress and depression. Health coaching provides support for coping with stress while fostering self-care behaviors. We report on preliminary evidence for efficacy of a virtual health coach intervention aimed at increasing self-care. Methods: Thirty-one caregivers of persons with behavioral variant FTD (bvFTD) were assigned randomly to an intervention group, which included 10 coaching sessions over 6 months plus targeted health information or the control group receiving standard care augmented with the health information. Caregiver self-care (primary outcome), stress, depression, coping, and patient behavioral symptoms were collected at enrollment and 3 and 6 months. Change over time was evaluated between the intervention and control groups using linear mixed-effects models. Results: There was a significant group-by-time interaction for self-care monitoring (t58 = 2.37, p = 0.02 and self-care confidence (t58 = 2.32, p = 0.02) on the Self-Care Inventory, demonstrating that caregivers who received the intervention improved their self-care over time. Behavioral symptoms were reduced in bvFTD patients whose caregivers received the intervention (t54 = -2.15, p = 0.03). Discussion: This randomized controlled trial (RCT) shows promise for health coaching as a way to increase support that is urgently needed to reduce poor outcomes in FTD caregivers.

16.
J Cardiovasc Nurs ; 2023 May 18.
Artigo em Inglês | MEDLINE | ID: mdl-37204336

RESUMO

BACKGROUND: Better caregiver contribution to self-care in heart failure is associated with better patient outcomes. However, caregiver contribution to self-care is also associated with high anxiety and depression, poor quality of life, and poor sleep in caregivers. It is still unclear whether interventions that encourage caregivers to contribute more to patient self-care might increase caregivers' anxiety and depression and decrease their quality of life and sleep. OBJECTIVE: The aim of this study was to assess the impact of a motivational interview intervention aimed at improving caregiver contribution to self-care in heart failure on caregivers' anxiety, depression, quality of life, and sleep. METHODS: This is a secondary outcome analysis of the MOTIVATE-HF trial. Patients with heart failure and their caregivers were randomized into arm 1 (motivational interview to patients), arm 2 (motivational interview to patients and caregivers), and arm 3 (standard care). Data were collected between June 2014 and October 2018. The article has been prepared following the Consolidated Standards of Reporting Trials checklist. RESULTS: A sample of 510 patient-caregiver dyads was enrolled. Over the year of the study, the levels of anxiety, depression, quality of life, and sleep in caregivers did not significantly change among the 3 arms. CONCLUSIONS: Motivational interview aimed at improving caregiver contribution to self-care does not seem to increase caregiver anxiety and depression, nor decrease their quality of life and sleep. Thus, such an intervention might be safely delivered to caregivers of patients with heart failure, although further studies are needed to confirm our findings.

17.
J Cardiovasc Nurs ; 38(3): E98-E109, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37027137

RESUMO

BACKGROUND: Sleep disturbance is one of the most common symptoms among patients with heart failure (HF), and it may affect the ability of patients to perform self-care. There is a lack of evidence on the association between sleep quality and its components and self-care in adults with HF. OBJECTIVE: The aim of this study was to evaluate the association between sleep quality and its components and self-care in adults with HF. METHODS: This study is a secondary analysis of baseline data from the MOTIVATE-HF study, a randomized controlled trial on patients with HF and their caregivers. Only patients' data were analyzed in this study (n = 498). Sleep quality and self-care were evaluated with the Pittsburgh Sleep Quality Index and the Self-Care of Heart Failure Index v6.2, respectively. RESULTS: A habitual sleep efficiency of 75% to 84% was associated with lower self-care maintenance compared with a habitual sleep efficiency of 85% or greater ( P = .031), as was taking sleep medications once or twice a week compared with less than once a week ( P = .001). A frequency of daytime dysfunction less than once a week was associated with lower self-care management compared with a frequency of daytime dysfunction of 3 or more times a week ( P = .025). Taking sleep medications less than once a week was associated with lower self-care confidence compared with taking sleep medications 3 or more times a week ( P = .018). CONCLUSION: Poor sleep quality is frequently reported by patients with HF. Sleep efficiency, sleep medications, and daytime dysfunction may influence self-care more than the other sleep quality components.


Assuntos
Insuficiência Cardíaca , Autocuidado , Humanos , Adulto , Autorrelato , Qualidade do Sono , Estudos Transversais , Sono , Insuficiência Cardíaca/complicações , Insuficiência Cardíaca/terapia
18.
Artigo em Inglês | MEDLINE | ID: mdl-36981849

RESUMO

Chronic illnesses and social isolation are major public phenomena that drive health and social policy worldwide. This article describes a middle-range theory of social isolation as experienced by chronically ill individuals. Key concepts include social disconnectedness, loneliness, and chronic illness. Antecedents of social isolation include predisposing factors (e.g., ageism and immigration) and precipitating factors (e.g., stigma and grief). Outcomes of social isolation include psychosocial responses (e.g., depression and quality of life), health-related behaviors (i.e., self-care), and clinical responses (e.g., cognitive function and health service use). Possible patterns of social isolation in chronic illness are described.


Assuntos
Qualidade de Vida , Isolamento Social , Humanos , Isolamento Social/psicologia , Solidão/psicologia , Doença Crônica
19.
Neurosci Biobehav Rev ; 148: 105142, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36965864

RESUMO

BACKGROUND: Interoception, the ability of the organism to sense, interpret, and regulate signals originating from within the body, plays an important role in how individuals perceive and respond to symptoms. However, there is scarce evidence on the role of interoception in the symptom experience of people with chronic conditions. AIM: To synthesize the role of interoception in the symptom experience of adults with a chronic condition. METHODS: Systematic review. We searched PubMed, Psychinfo, Embase, CINAHL, and Science Citation Index-Expanded. We included primary research (all study designs) addressing our study aim, published between 2013 and 2021, and measuring at least one dimension of interoception. Any chronic condition and any symptom were included. No language limits were applied. Only the adult population was included. RESULTS: We included 18 quantitative studies investigating the relationship between three interoceptive dimensions (i.e., accuracy, sensibility, awareness) and condition-specific symptoms in 8 chronic conditions. People with chronic conditions had lower interoceptive accuracy than healthy controls. Higher interoceptive sensibility was associated with lower symptom severity/frequency. Higher interoceptive accuracy was associated with lower symptom severity/frequency in half of the studies, while the other half reported the opposite. Only one study explored interoceptive awareness. CONCLUSION: Interoceptive accuracy is lower in patients with chronic conditions. Higher interoceptive sensibility is associated with lower symptom severity/frequency, but this relationship is unclear when it comes to interoceptive accuracy and awareness.


Assuntos
Conscientização , Interocepção , Adulto , Humanos , Conscientização/fisiologia , Interocepção/fisiologia , Idioma , Doença Crônica , Frequência Cardíaca/fisiologia
20.
J Am Board Fam Med ; 36(2): 369-375, 2023 04 03.
Artigo em Inglês | MEDLINE | ID: mdl-36948539

RESUMO

BACKGROUND: Despite providing frequent care to heart failure (HF) patients, home health care workers (HHWs) are generally considered neither part of the health care team nor the family, and their clinical observations are often overlooked. To better understand this workforce's involvement in care, we quantified HHWs' scope of interactions with clinicians, health systems, and family caregivers. METHODS: Community-partnered cross-sectional survey of English- and Spanish-speaking HHWs who cared for a HF patient in the last year. The survey included 6 open-ended questions about aspects of care coordination, alongside demographic and employment characteristics. Descriptive statistics were performed. RESULTS: Three hundred ninety-one HHWs employed by 56 unique home care agencies completed the survey. HHWs took HF patients to a median of 3 doctor appointments in the last year with 21.9% of them taking patients to ≥ 7 doctor appointments. Nearly a quarter of HHWs reported that these appointments were in ≥ 3 different health systems. A third of HHWs organized care for their HF patient with ≥ 2 family caregivers. CONCLUSIONS: HHWs' scope of health-related interactions is large, indicating that there may be novel opportunities to leverage HHWs' experiences to improve health care delivery and patient care in HF.


Assuntos
Insuficiência Cardíaca , Agências de Assistência Domiciliar , Humanos , Estudos Transversais , Cuidadores , Insuficiência Cardíaca/terapia , Família
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