Optimizing support before and after Cardiac Resynchronization Therapy implantation in co-creation with patients with heart failure, informal caregivers and healthcare professionals.

AIM: To optimize support by healthcare professionals to enhance physical activity, HF-related symptom monitoring and management in patients with heart failure before and after cardiac resynchronization therapy (CRT) implantation in co-creation with patients, informal caregivers, and healthcare professionals. METHODS AND RESULTS: A qualitative and co-design approach was used to develop support strategies collaboratively with end-users. Seventeen semi-structured interviews were conducted to explore patients' expectations and factors influencing physical activity and symptom management. The qualitatively obtained insights informed the development of support strategies using an ideas group with patients, informal caregivers, and healthcare professionals.Four themes emerged from the interviews: 1. Expecting and hoping to regain energy and fitness; 2. Difficulties and opportunities to become more active; 3. Impact of CRT on sense of safety; and 4. Dealing with continuing bothersome symptoms. Several strategies were brainstormed, prioritized and prototyped, including optimization of CRT information, a peer contact list, expansion of the post-CRT implantation consultation to ask questions and share concerns, and a group meeting with peer patients, partners, and healthcare professionals. CONCLUSION: Patients expected and hoped to have positive effects from CRT, but not all patients experienced improvement after CRT. To improve patients' physical activity, feelings of insecurity, symptom monitoring, and thoughtful response to symptoms, support must include providing information and support to increase their knowledge and discuss experiences and physical and mental concerns.

Symptom characteristics, perceived causal attributions, and contextual factors influencing self-care behaviors: An ecological daily assessment study of adults with chronic illness.

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.

Patterns of self-care decision-making and associated factors: A cross-sectional observational study.

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.

Association Between Self-care and Resilience: A Cross-sectional Study in Heart Failure Patients.

BACKGROUND: Self-care (SC) is a cornerstone in heart failure management and is related to patient outcomes. The continuous and complex demands of SC can be experienced as stressful and may require patients to apply resilient behaviors as they manage their conditions. Resilience may be a helpful factor in performing SC. OBJECTIVE: The aim of this study was to determine the association between resilience and SC in patients with heart failure. METHODS: A cross-sectional study was performed between January 2020 and January 2021. Participants were asked to complete a questionnaire addressing baseline characteristics, the 2-item Patient Health Questionnaire, the Resilience Evaluation Scale, and the Self-Care of Chronic Illness Inventory, which measures 3 concepts of SC: SC maintenance, SC monitoring, and SC management. Multiple regression analysis was performed to determine whether resilience was associated with SC. RESULTS: Eighty-six patients were included, and 74 patients completed the questionnaire. In the univariate analysis, an association was found between resilience and SC maintenance, resulting in an increase in SC for patients with higher resilience (ß = 0.24; 95% confidence interval, 0.03-0.96). In the multivariate analysis adjusted and corrected for confounders, no significant associations between resilience and all SC scales were found. CONCLUSION: This study could not demonstrate significant associations between resilience and all SC scales. This study contributes to the body of knowledge on factors that can mediate or moderate SC. Further longitudinal research should be performed to study cause-effect relationships.

Self-care management of bothersome symptoms as recommended by clinicians for patients with a chronic condition: A Delphi study.

BACKGROUND: Chronically medically ill patients often need clinical assistance with symptom management, as well as self-care interventions that can help to reduce the impact of bothersome symptoms. Experienced clinicians can help to guide the development of more effective self-care interventions. OBJECTIVE: To create a consensus-based list of common bothersome symptoms of chronic conditions and of self-care management behaviors recommended to patients by clinicians to reduce the impact of these symptoms. METHODS: A two-round Delphi study was performed among an international panel of 47 clinicians using online surveys to identify common and bothersome symptoms and related self-care management behaviors recommended to patients with heart failure, chronic obstructive pulmonary disease, asthma, type 2 diabetes, or arthritis. RESULTS: A total of 30 common bothersome symptoms and 158 self-care management behaviors across the five conditions were listed. Each chronic condition has its own bothersome symptoms and self-care management behaviors. Consensus was reached on the vast majority of recommended behaviors. CONCLUSIONS: The list of common bothersome symptoms and self-care management behaviors reflect consensus across four countries on many points but also disagreement on others, and a few recommendations are inconsistent with current guidelines. Efforts to encourage clinicians to recommend effective self-care management behaviors may reduce symptom impact in chronically ill patient populations.