Usability and feasibility analysis of an mHealth-tool for supporting physical activity in people with heart failure.

BACKGROUND: Physical inactivity and a sedentary lifestyle are common among people with heart failure (HF), which may lead to worse prognosis. On an already existing mHealth platform, we developed a novel tool called the Activity coach, aimed at increasing physical activity. The aim of this study was to evaluate the usability of the Activity coach and assess feasibility of outcome measures for a future efficacy trial. METHODS: A mixed-methods design was used to collect data. People with a HF diagnosis were recruited to use the Activity coach for four weeks. The Activity coach educates the user about physical activity, provides means of registering daily physical activity and helps the user to set goals for the next week. The usability was assessed by analysing system user logs for adherence, reported technical issues and by interviews about user experiences. Outcome measures assessed for feasibility were objective physical activity as measured by an accelerometer, and subjective goal attainment. Progression criteria for the usability assessment and for the proposed outcomes, were described prospectively. RESULTS: Ten people with HF were recruited, aged 56 to 78 with median age 72. Data from nine of the ten study participants were included in the analyses. Usability: The Activity coach was used 61% of the time and during the first week two study participants called to seek technical support. The Activity coach was found to be intuitive and easy to use by all study participants. An increased motivation to be more physically active was reported by six of the nine study participants. However, in spite of feeling motivated, four reported that their habits or behaviours had not been affected by the Activity coach. FEASIBILITY: Data was successfully stored in the deployed hardware as intended and the accelerometers were used enough, for the data to be analysable. One finding was that the subjective outcome goal attainment, was challenging to collect. A proposed mitigator for this is to use pre-defined goals in future studies, as opposed to having the study participants be completely free to formulate the goals themselves. CONCLUSIONS: It was confirmed that the Activity coach was easy to use. Furthermore, it might stimulate increased physical activity in a population of people with HF, who are physically inactive. The outcomes investigated seem feasible to include in a future efficacy trial. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT05235763. Date of first registration: 11/02/2022.

Placing patient-reported outcomes at the centre of cardiovascular clinical practice: implications for quality of care and management.

Patient-reported outcomes (PROs) provide important insights into patients' own perspectives about their health and medical condition, and there is evidence that their use can lead to improvements in the quality of care and to better-informed clinical decisions. Their application in cardiovascular populations has grown over the past decades. This statement describes what PROs are, and it provides an inventory of disease-specific and domain-specific PROs that have been developed for cardiovascular populations. International standards and quality indices have been published, which can guide the selection of PROs for clinical practice and in clinical trials and research; patients as well as experts in psychometrics should be involved in choosing which are most appropriate. Collaborations are needed to define criteria for using PROs to guide regulatory decisions, and the utility of PROs for comparing and monitoring the quality of care and for allocating resources should be evaluated. New sources for recording PROs include wearable digital health devices, medical registries, and electronic health record. Advice is given for the optimal use of PROs in shared clinical decision-making in cardiovascular medicine, and concerning future directions for their wider application.

How do patients with rheumatoid arthritis perceive their self-care and self-care support? A mixed-method study.

AIM: To explore self-care and needs and preferences towards tailored self-care support of patients with rheumatoid arthritis at the outpatient clinic. DESIGN: A sequential explanatory mixed method design. METHODS: The Self-Care of Chronic Illness Inventory questionnaire, two focus groups and six semi-structured interviews were conducted between November 2021 and April 2023. Questionnaires of 107 patients were descriptively analysed. Subsequently, 11 patients and 2 healthcare professionals participated in the focus groups and 6 patients in the interviews, which were thematically analysed. RESULTS: Quantitative and qualitative data corresponded and showed that patients perform various self-care activities at an adequate level and have strategies to exert control and reduce symptoms. One key theme emerged: 'Not only being the person with rheumatoid arthritis' (RA) as patients primarily aim to get on with their lives. Nine subthemes covered self-care activities for maintaining health including staying physically active, finding the right medication and dose and adapting their diet. Patients differed in how they self-monitored their symptoms. Recognizing symptoms and finding strategies to manage symptoms included the process of body listening in which patient seek and try different strategies to find what works for them and incorporate routines. Patients experienced positive effects of a warm or cold environment. Patients felt the need for practical and emotional support from others and preferred having credible information. CONCLUSION: Patients perform adequate self-care including a diversity of self-care activities to get on with their lives and have strategies to reduce and control the symptoms and impact of RA. IMPLICATIONS: Tailoring self-care support to patients' individual needs and preferences is necessary to help patients cope with the erratic nature of the disease and maintain their quality of life. Healthcare providers need to provide practical and emotional support and use credible information to allow patients to make self-care decisions to manage their lives. REPORTING METHODS: Quantitative finding are reported according to the STROBE guidelines and qualitative finding are reported according to the COREQ guidelines. WHAT DOES THIS PAPER ADD: Patients perform various self-care activities at an adequate level and have strategies to exert control and reduce symptoms. Patients primarily aim to continue their lives and not being seen as the person with rheumatoid arthritis. Healthcare professionals need to provide practical and emotional support and use credible information to inform patients' self-care decision-making. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Struggling in the dehumanized world of COVID-An exploratory mixed-methods study of frontline healthcare workers' experiences.

AIM: To explore healthcare workers' experiences of the changed caring reality during the COVID-19 pandemic in Sweden. DESIGN: An online fully mixed-methods design. METHODS: A web-based self-reported questionnaire with fixed and open-ended answers collected data from March to April 2021, analysed in three steps. First, free-text questions were analysed by qualitative content analysis. Then quantitative linear regression analyses using models covering stress and coping mechanisms were conducted. Finally, a meta-inference of qualitative and quantitative data emerged a new comprehensive understanding. The COREQ guidelines were used for reporting. RESULTS: Meta-inferenced results of quantitative and qualitative findings show the pandemic was a traumatic experience for healthcare workers. Main theme; When work became a frightening experience in a dehumanized reality, comprised four themes: Entering unprepared into a frightful, incomprehensible world; Sacrificing moral values and harbouring dilemmas in isolation; Lack of clear management; and Reorient in togetherness and find meaning in a changed reality. Qualitative results comprised four categories; Working in a dehumanized world; Living in betrayal of ones' own conscience; Lack of structure in a chaotic time and Regaining vitality together. Subdimensions comprehensibility and meaningfulness were associated significantly with post-traumatic stress disorder in multiple regression analysis. In multiple regression analysis, sense of coherence was the most prominent coping strategy. CONCLUSIONS: Forcing oneself to perform beyond one's limit, sacrificing moral values and lacking management was a traumatic experience to healthcare workers during the pandemic. Reorienting as a way of coping was possible in togetherness with colleagues. There is an urgency of interventions to meet the needs among healthcare workers who took on a frontline role during the COVID-19 pandemic and to prevent mental health illness in future crisis. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. SUMMARY: The pandemic outbreak exposed frontline healthcare workers to unparallelled stress shown as negative for their mental health in several meta-analyses and systematic reviews. In-depth understanding on experiences and how symptoms of post-traumatic stress disorder relate to coping mechanisms have been scarcely explored. This study contributes to understanding on healthcare workers' experiences and the relation between lower sense of coherence and increased risk of developing symptoms of post-traumatic stress disorder. IMPLICATIONS FOR PRACTICE/POLICY: This study might guide how to prepare for resilience in future emergencies.

Nurses' priority-setting for older nursing home residents during COVID-19.

BACKGROUND: Ethical principles behind prioritization in healthcare are continuously relevant. However, applying ethical principles during times of increased need, such as during the COVID-19 pandemic, is challenging. Also, little is known about nursing home nurses' prioritizations in their work to achieve well-being and health for nursing home residents. AIM: The aim of this study was to explore nursing home nurses' priority-setting for older nursing home residents in Sweden during the COVID-19 pandemic. RESEARCH DESIGN, PARTICIPANTS, AND RESEARCH CONTEXT: We conducted a qualitative interview study. Data were collected through in-depth interviews (retrospective self-reports) between February and May 2021 with 21 nursing home nurses. To help respondents to recall their memories, we used the critical incident technique (CIT). We analyzed data within the theoretical framework and the methodological orientation of content analysis. ETHICAL CONSIDERATIONS: Written and verbal consent was obtained before the interviews, and information was given to participants informing them that participation was entirely voluntary. The Swedish Ethical Review Agency gave an advisory opinion stating that there were no ethical objections to the research project (Dnr. 2020-05649). FINDINGS: We identified an overarching theme-nursing home nurses struggling on multiple fronts, "just do it"-and seven categories: striving for survival and caring about a dignified death; responding sensitively to relatives' expectations; ranking the urgency of needed care; responding to input from different actors; combating the spread of infection in unconventional ways; taking the lead and doing what is required; and following the ideals of person-centered nursing. CONCLUSIONS: Nurses' priority-setting for older nursing homes residents during the COVID-19 pandemic meant strain and struggle. In some cases, nurses had taken responsibility for priorities falling outside their statutory powers. Different demands and interests affected nurses' priorities. Nursing home nurses need organizational and managerial support to prioritize.

Type D Personality as a Risk Factor for Adverse Outcome in Patients With Cardiovascular Disease: An Individual Patient-Data Meta-analysis.

OBJECTIVE: Type D personality, a joint tendency toward negative affectivity and social inhibition, has been linked to adverse events in patients with heart disease, although with inconsistent findings. Here, we apply an individual patient-data meta-analysis to data from 19 prospective cohort studies ( N = 11,151) to investigate the prediction of adverse outcomes by type D personality in patients with acquired cardiovascular disease. METHOD: For each outcome (all-cause mortality, cardiac mortality, myocardial infarction, coronary artery bypass grafting, percutaneous coronary intervention, major adverse cardiac event, any adverse event), we estimated type D's prognostic influence and the moderation by age, sex, and disease type. RESULTS: In patients with cardiovascular disease, evidence for a type D effect in terms of the Bayes factor (BF) was strong for major adverse cardiac event (BF = 42.5; odds ratio [OR] = 1.14) and any adverse event (BF = 129.4; OR = 1.15). Evidence for the null hypothesis was found for all-cause mortality (BF = 45.9; OR = 1.03), cardiac mortality (BF = 23.7; OR = 0.99), and myocardial infarction (BF = 16.9; OR = 1.12), suggesting that type D had no effect on these outcomes. This evidence was similar in the subset of patients with coronary artery disease (CAD), but inconclusive for patients with heart failure (HF). Positive effects were found for negative affectivity on cardiac and all-cause mortality, with the latter being more pronounced in male than female patients. CONCLUSION: Across 19 prospective cohort studies, type D predicts adverse events in patients with CAD, whereas evidence in patients with HF was inconclusive. In both patients with CAD and HF, we found evidence for a null effect of type D on cardiac and all-cause mortality.

Development and psychometric properties of a short version of the Patient Continuity of Care Questionnaire.

INTRODUCTION: Hospitalization due to cardiac conditions is increasing worldwide, and follow-up after hospitalization usually occurs in a different healthcare setting than the one providing treatment during hospitalization. This leads to a risk of fragmented care and increases the need for coordination and continuity of care after hospitalization. Furthermore, international reports highlight the importance of improving continuity of care and state that it is an essential indicator of the quality of care. Patients' perceptions of continuity of care can be evaluated using the Patient Continuity of Care Questionnaire (PCCQ). However, the original version is extensive and may prove burdensome to complete; therefore, we aimed to develop and evaluate a short version of the PCCQ. METHODS: This was a psychometric validation study. Content validity was evaluated among user groups, including patients (n = 7), healthcare personnel (n = 15), and researchers (n = 7). Based on the results of the content validity and conceptual discussions among the authors, 12 items were included in the short version. Data from patients were collected using a consecutive sampling procedure involving patients 6 weeks after hospitalization due to cardiac conditions. Rasch analysis was used to evaluate the psychometric properties of the short version of the PCCQ. RESULTS: A total of 1000 patients were included [mean age 72 (SD = 10), 66% males]. The PCCQ-12 presented a satisfactory overall model fit and a person separation index of 0.79 (Cronbach's α: .91, ordinal α: .94). However, three items presented individual item misfits. No evidence of multidimensionality was found, meaning that a total score can be calculated. A total of four items presented evidence of response dependence but, according to the analysis, this did not seem to affect the measurement properties or reliability of the PCCQ-12. We found that the first two response options were disordered in all items. However, the reliability remained the same when these response options were amended. In future research, the benefits of the four response options could be evaluated. CONCLUSION: The PCCQ-12 has sound psychometric properties and is ready to be used in clinical and research settings to measure patients' perceptions of continuity of care after hospitalization. PATIENT OR PUBLIC CONTRIBUTION: Patients, healthcare personnel and researchers were involved in the study because they were invited to select items relevant to the short version of the questionnaire.

The responsibility to quench thirst by providing drinks when a relative is dying spouses' experience in specialist palliative home care.

BACKGROUND: Thirst and dry mouth are common symptoms in terminally ill patients. It is known that family members usually request drips for their dying relative. Few studies have focused on thirst in terminally ill patients and their spouses' experience of this, leading to a knowledge gap in this area. AIM: The aim of this study was to explore spouses' experiences of observing and managing thirst in a dying relative admitted to specialist palliative home care. METHODS: A qualitative interview study with an inductive approach was conducted. Eighteen spouses caring for their husband or wife admitted to specialist palliative home care in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. RESULTS: Three main themes emerged regarding spouses' experiences of patients' thirst: Knowledge and views of thirst; Control of fluid intake provides vital information; and Taking charge of their drinking is a life and death responsibility. CONCLUSIONS: Spouses experience a responsibility to serve the dying person with fluids so that they will not get thirsty. It is so obvious and commonplace to them. To be able to fulfil this responsibility, they need to keep track of the patient's fluid intake and know what quenches thirst. There is a need for research in this area to assist carers and patients in identifying which drinks best quench the patient's thirst. Interventions are also needed to help provide/make available knowledge on suitable thirst-quenching drinks.

Ethical challenges around thirst in end-of-life care -experiences of palliative care physicians.

BACKGROUND: Thirst and dry mouth are common symptoms in terminally ill patients. In their day-to-day practice, palliative care physicians regularly encounter ethical dilemmas, especially regarding artificial hydration. Few studies have focused on thirst and the ethical dilemmas palliative care physicians encounter in relation to this, leading to a knowledge gap in this area. AIM: The aim of this study was to explore palliative care physicians' experiences of ethical challenges in relation to thirst in terminally ill patients. METHODS: A qualitative interview study with an inductive approach was conducted. Sixteen physicians working in four different specialised palliative care units and one geriatric care unit in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. RESULTS: When presented with an ethical challenge relating to thirst, physicians attempted to balance benefits and harms while emphasizing respect for the patient's autonomy. The ethical challenges in this study were: Starting, continuing or discontinuing drips; lack of evidence and traditions create doubt; and lack of interest and time may result in patient suffering. CONCLUSIONS: All physicians in this study reported that "Starting, continuing or discontinuing drips" was the main ethical challenge they encountered, where some were so accustomed to the decision that they had a standard answer ready to offer patients and families. Physicians reported that drips were a symbol of thirst quenching, life and survival but were not necessary in end-of-life care. Others questioned the traditions regarding thirst and emphasised drips in particular.

Expectations of Tele-Yoga in Persons With Long-Term Illness: Qualitative Content Analysis.

BACKGROUND: Yoga is a mind-body exercise that has demonstrated its feasibility and safety even for individuals with severe long-term illness. Engaging in yoga has the potential to yield positive effects on both physical and mental well-being. Tele-yoga is a novel approach to rehabilitation in which participants practice group yoga with a live-streamed yoga instructor digitally via a tablet. This is especially beneficial for individuals who may find it difficult to leave their homes to participate in an exercise session. As part of our ongoing evaluation of the tele-yoga intervention in individuals with long-term illness, we have undertaken an exploration of participants' expectations regarding yoga in general and tele-yoga specifically. Understanding these expectations is crucial, as they can significantly impact their satisfaction with treatment and care and influence overall intervention outcomes. OBJECTIVE: This study aims to explore the expectations of tele-yoga among individuals with long-term illness before starting a tele-yoga intervention. METHODS: The study employed an inductive qualitative design and is part of a process evaluation within an ongoing randomized controlled trial. A total of 89 participants were interviewed before the start of the tele-yoga intervention. The interview guide encompassed questions about their general perceptions of yoga and the specific expectations they held for the upcoming tele-yoga sessions. The interviews were transcribed and analyzed using inductive qualitative content analysis. RESULTS: Participants expressed their expectations for tele-yoga, focusing on the anticipated improvements in physical function and overall health. These expectations included hopes for reduced respiratory issues; relief from discomfort, aches, and pains; as well as increased physical flexibility, coordination, and overall well-being. Besides, they expected to achieve improved psychological well-being and performance; to acquire strategies to manage stress, anger, and anxiety; and to have their motivational drive strengthened and influence other activities. Participants described tele-yoga as a new and exciting technical solution that would facilitate the delivery of yoga. A few participants remained a little hesitant toward the use of technology, with some expectations based on previous experiences. When asked about expectations, some had no idea about what to expect. Participants also had varying perspectives on yoga, with some finding it mysterious and difficult to understand. Participants expressed thoughts that they found the idea of tele-yoga taking place in groups exciting and enjoyable. They also had expectations that being part of a group would provide opportunities for mutual inspiration and encouragement among the group members. CONCLUSIONS: Expectations before an intervention can provide valuable insights into understanding the factors influencing adherence to tele-yoga and its outcomes. Our findings provide a wide range of expectations for tele-yoga, spanning both physical and mental aspects. Moreover, the technology's potential to facilitate yoga delivery and the supportive nature of digital group interactions were evident from the results. TRIAL REGISTRATION: ClinicalTrials.gov NCT03703609; https://clinicaltrials.gov/ct2/show/NCT03703609.

Correction: Expectations of Tele-Yoga in Persons With Long-Term Illness: Qualitative Content Analysis.

[This corrects the article DOI: 10.2196/36808.].

Factors That Influence the Use of eHealth in Home Care: Scoping Review and Cross-sectional Survey.

BACKGROUND: In home care, eHealth implementation requires health care professionals and home care clients to change their behavior because they have to incorporate the use of eHealth into their daily routines. Knowledge of factors that influence the use of eHealth in home care is needed to optimize implementation strategies. However, a comprehensive overview of such factors is lacking. OBJECTIVE: The aims of this study were to (1) provide insight into the types of eHealth that are used and preferred in home care and (2) identify factors that influence the use of eHealth in home care according to health care professionals and home care clients. METHODS: A scoping review and online, cross-sectional survey were conducted sequentially. The survey was conducted among Dutch health care professionals with a nursing background who were working for a home care organization at the time. The capability, opportunity, motivation, behavior (COM-B) model, which posits that for any behavior (B) to occur, a person must have the capability (C), opportunity (O), and motivation (M) to perform the behavior, was used to identify influencing factors. The use of a theoretical model may contribute to a better understanding of how to achieve and sustain behavior change in clinical practice. RESULTS: We included 30 studies in the scoping review. The most frequently studied type of eHealth was a telecommunication/telemonitoring system. The survey was completed by 102 participants. The most frequently used types of eHealth were electronic health records, social alarms, and online client portals. A health app was the most frequently preferred type of eHealth. We identified 22 factors that influence the use of eHealth in home care according to health care professionals and home care clients. Influencing factors were organized into the components of the COM-B model, namely capability (n=6), opportunity (n=10), and motivation (n=6). We found that there is no single influencing factor that is key to the complexity of eHealth implementation. CONCLUSIONS: Different types of eHealth are used, and many types of eHealth are preferred by health care professionals. The identified factors that influence the use of eHealth in home care relate to all components of the COM-B model. These factors need to be addressed and embedded in implementation strategies of eHealth to optimize the use of eHealth in home care.

Self-care in migrants with type 2 diabetes, during the COVID-19 pandemic.

INTRODUCTION: Type 2 diabetes is increasing globally and particularly affects vulnerable groups in society, such as migrants. Research shows that type 2 diabetes is a risk factor for severe illness when infected with COVID-19. Diabetes-related complications can be prevented with good glycaemic control. In addition, good glycaemic control has been shown to be an important cornerstone for preventing severe illness in individuals infected with COVID-19. In order to maintain good glycaemic control, self-care is needed. The purpose of this article is to describe self-care maintenance and possible changes in self-care maintenance and to explore factors related to unchanged self-care maintenance in migrant patients with type 2 diabetes during the COVID-19 pandemic. The second aim is to describe well-being, social support, and the need for support from healthcare services during the COVID-19 pandemic in migrant patients with type 2 diabetes. DESIGN/METHOD: A triangulation design with cross-sectional data collection was used. Both quantitative and qualitative data were collected and interpreted together in a triangulation design. Patients were selected by a diabetes nurse from a computer system at a health center in south-eastern Sweden and invited to participate in the study. A questionnaire was translated into the languages most commonly used at the clinic and sent out to 332 migrant patients who had been diagnosed with type 2 diabetes and treated in primary care. This questionnaire assessed self-care maintenance for diabetes (questions inspired by the Self-Care of Diabetes Inventory), with questions added to every item to assess changes during the pandemic. When changes occurred, we asked the participants to elaborate. Open-ended questions asked the participants how they would like to receive information when there are changes in their healthcare. Descriptive statistical analyses were used for the quantitative data and qualitative data was analyzed using a directed approach to content analysis. RESULTS: In total, 79 participants answered the questionnaire (mean age 69 ± 11, 51% male, 47% born in the Middle East). Of these, 76% stated a change in self-care. More than half (58%) stated changes in maintaining an active lifestyle, 40% had changed their physical exercise, and 38% had changed their behavior to avoid getting sick. Participants said that this change was due to staying at home or canceling social activities because they feared meeting people during the pandemic. Others were more physically active than before on a regular basis during the pandemic due to taking walks to get fit, as a precaution related to COVID-19, and having greater awareness about how to avoid getting sick. Approximately one-quarter of the participants experienced a change in contact with healthcare due to poorer access to care, with fewer doctors' appointments and care being postponed during the pandemic. More than half (58%) would like to receive information about healthcare changes by a letter in the regular mail. Social support had changed for 35% of the participants, with less support from family and friends due to the risk of being infected with COVID-19. CONCLUSION: The COVID-19 pandemic led to societal restrictions that changed the way of life for many individuals. Migrant patients with type 2 diabetes, who are already a vulnerable group regarding self-care, had difficulties in maintaining good living habits during the pandemic. During crises such as COVID-19, support with self-care, such as closer contact with healthcare providers, is vital. CLINICAL RELEVANCE: Knowledge about how the COVID-19 pandemic has affected migrants with type 2 diabetes can be used to support healthcare providers in identifying individuals who are at high risk of suffering from the consequences of their diabetes associated with the pandemic.

The perceived effects of COVID-19 while living with a chronic illness.

INTRODUCTION: A diagnosis of chronic illness posed a serious threat to people during the recent COVID-19 pandemic. People with chronic illnesses were faced with increased mortality and reduced access to healthcare. Self-care is the process of maintaining health and managing a chronic illness. Nurses working in specialist services provide healthcare education to people with chronic illnesses. Access to these nurses was decreased during periods of the COVID-19 virus escalation due to the reconfiguration of services and redeployment of nurses. The purpose of the research was to learn from the experiences of people with a chronic illnesses in self-care behaviors and accessing altered healthcare services to inform future practices. DESIGN: A population survey design. METHODS: A mixed methods survey was designed, combining validated questionnaires and scales with open-ended questions. A convenience sample was utilized via using social media platforms. Data analysis included descriptive and inferential statistics. Content analysis was used to analyze open-ended responses. RESULTS: There were 147 responses, with approximately half reporting no changes in face-to-face healthcare contact, 41% reporting decreased contacts and 12% increased contacts. Non-face-to-face contacts were reduced by almost 9%, did not change by almost 60%, while 33% indicated an increase. Participants reported mixed perceptions in contact with healthcare providers during restrictions. In the Patient Assessment of Chronic Illness Care and the Self-Care of Chronic Illness scales, participants scored statistically lower scores than in previous studies. Participants indicated that public health restrictions negatively impacted their confidence, created challenges with re-engaging and that access to care was more difficult. CONCLUSION: This research highlights the importance of providing continued support to people with chronic illness irrespective of other challenges to healthcare services. A structured approach to virtual self-care education is required. CLINICAL RELEVANCE: This research concluded that the experience of access to one healthcare professional as opposed to diverse multidisciplinary input was similar for a number of chronic illnesses groups of people during the COVID-19 pandemic. There was an altered dynamic of virtual contacts with healthcare providers and a lack of confidence interpreting what monitoring was required by people with a chronic illnesses due to a lack of preparedness for virtual healthcare delivery.

Sense of Security Mediates the Relationship Between Self-care Behavior and Health Status of Patients With Heart Failure: A Cross-sectional Study.

BACKGROUND: Promoting patients' sense of security is among the goals of nursing care within heart failure management. OBJECTIVE: The aim of this study was to examine the role of sense of security in the relationship between self-care behavior and health status of patients with heart failure. METHODS: Patients recruited from a heart failure clinic in Iceland answered a questionnaire about their self-care (European Heart Failure Self-care Behavior Scale; possible scores, 0-100), their sense of security (Sense of Security in Care-Patients' Evaluation; possible scores, 1-100), and their health status (Kansas City Cardiomyopathy Questionnaire, including symptoms, physical limitations, quality of life, social limitations, and self-efficacy domains; possible scores, 0-100). Clinical data were extracted from electronic patient records. Regression analysis was used to examine the mediation effect of sense of security on the relationship between self-care and health status. RESULTS: The patients (N = 220; mean [SD] age, 73.6 [13.8] years; 70% male, 49% in New York Heart Association functional class III) reported a high sense of security (mean [SD], 83.2 [15.2]) and inadequate self-care (mean [SD], 57.2 [22.0]); their health status, as assessed by all domains of the Kansas City Cardiomyopathy Questionnaire, was fair to good except for self-efficacy, which was good to excellent. Self-care was associated with health status ( P < .01) and sense of security ( P < .001). Regression analysis confirmed the mediating effect of sense of security on the relationship between self-care and health status. CONCLUSIONS: Sense of security in patients with heart failure is an important part of daily life and contributes to better health status. Heart failure management should not only support self-care but also aim to strengthen sense of security through positive care interaction (provider-patient communication) and the promotion of patients' self-efficacy, and by facilitating access to care.

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.

Associations between continuity of care, perceived control and self-care and their impact on health-related quality of life and hospital readmission-A structural equation model.

AIM: The aim of this study is to examine whether a conceptual model including the associations between continuity of care, perceived control and self-care could explain variations in health-related quality of life and hospital readmissions in people with chronic cardiac conditions after hospital discharge. DESIGN: Correlational design based on cross-sectional data from a multicentre survey study. METHODS: People hospitalized due to angina, atrial fibrillation, heart failure or myocardial infarction were included at four hospitals using consecutive sampling procedures during 2017-2019. Eligible people received questionnaires by regular mail 4-6 weeks after discharge. A tentative conceptual model describing the relationship between continuity of care, self-care, perceived control, health-related quality of life and readmission was developed and evaluated using structural equation modelling. RESULTS: In total, 542 people (mean age 75 years, 37% females) were included in the analyses. According to the structural equation model, continuity of care predicted self-care, which in turn predicted health-related quality of life and hospital readmission. The association between continuity of care and self-care was partly mediated by perceived control. The model had an excellent model fit: RMSEA = 0.06, 90% CI, 0.05-0.06; CFI = 0.90; TLI = 0.90. CONCLUSION: Interventions aiming to improve health-related quality of life and reduce hospital readmission rates should focus on enhancing continuity of care, perceived control and self-care. IMPACT: This study reduces the knowledge gap on how central factors after hospitalization, such as continuity of care, self-care and perceived control, are associated with improved health-related quality of life and hospital readmission in people with cardiac conditions. The results suggest that these factors together predicted the quality of life and readmissions in this sample. This knowledge is relevant to researchers when designing interventions or predicting health-related quality of life and hospital readmission. For clinicians, it emphasizes that enhancing continuity of care, perceived control and self-care positively impacts clinical outcomes. PATIENT OR PUBLIC CONTRIBUTION: People and healthcare personnel evaluated content validity and were included in selecting items for the short version.

Assistant nurses' experiences of thirst and ethical dilemmas in dying patients in specialized palliative care-A qualitative study.

AIMS: To describe assistant nurses' experiences of thirst and ethical challenges in relation to thirst in terminally ill patients in specialized palliative care (PC) units. DESIGN: A qualitative, reflexive thematic design with an inductive analysis was used. METHODS: Data were collected during November 2021-January 2023. Twelve qualitative interviews with assistant nurses working in five different specialized PC units in different hospitals in Sweden were conducted. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. The study was guided by the Standards for Reporting Qualitative Research (SRQR). RESULTS: Two main themes were found in this study. (1) 'A world of practice for thirst relief' where assistant nurses present a task-oriented world where the knowledge of thirst is an experience-based unspoken knowledge where mainly routines rule. (2) Ethical challenges presents different ethical problems that they meet in their practice, such as when patients express thirst towards the end of their life but are too severely ill to drink or when they watch lack of knowledge in the area among other health professionals. CONCLUSION: Thirst in dying patients is a neglected area that assistant nurses work with, without communicating it. Their knowledge of thirst and thirst relief are not expressed, seldom discussed, there are no policy documents nor is thirst documented in the patient's record. There is a need for nurses to take the lead in changing nursing practice regarding thirst. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. IMPACT: In palliative care, previous studies have shown that dying patients might be thirsty. Assistant nurses recognize thirst in dying patients, but thirst is not discussed in the team. Nurses must consider the patient's fundamental care needs and address thirst, for example in the nursing process to ensure patients quality of life in the last days of life. REPORTING METHOD: The study was guided by the SRQR. WHAT DOES THIS ARTICLE CONTRIBUTE TO THE WIDER GLOBAL CLINICAL COMMUNITY?: Thirst is a distressing symptom for all humans. However, when a patient is dying, he or she loses several functions and can no longer drink independently. The knowledge from this article contributes to our understanding of current practice and shows an area that requires immediate attention for the improvement of fundamental palliative care delivery.

The co-design of an online support programme with and for informal carers of people with heart failure: A methodological paper.

AIM: To describe the co-designing process of an online support programme with and for informal carers of people with heart failure. DESIGN: A co-design process built on core concepts and ideas embedded in co-design methodology. DATA SOURCES: Our co-design process included three phases involving 32 informal caregivers and 25 content creators; (1) Identification of topics and content through literature searches, focus group interviews and user group sessions; (2) Development of the online support programme and; (3) Refinement and finalization which included testing a paper prototype followed by testing the online version and testing and approval of the final version of the support programme. OUTCOMES: The co-design process resulted in a support programme consisting of 15 different modules relevant to informal carers, delivered on a National Health Portal. CONCLUSION: Co-design is an explorative process where researchers need to balance a range of potentially conflicting factors and to ensure that the end users are genuinely included in the process. RELEVANCE TO CLINICAL PRACTICE: Emphasizing equal involvement of end users (e.g. carers or patients) in the design and development of healthcare interventions aligns with contemporary ideas of person-centred care and provides a valuable learning opportunity for those involved. Furthermore, a co-designed online support programme has the capacity to be both accessible and meet end users' information and support needs, thereby optimizing their self-care abilities. Additionally, an online support programme provides the opportunity to address current challenges regarding scarce resources and the lack of healthcare personnel. REPORTING METHODS: Consolidated criteria for reporting qualitative research (COREQ). PATIENT OR PUBLIC CONTRIBUTION: Both informal carers and content creators were involved in developing the support programme.

Fluid REStriction in Heart Failure vs Liberal Fluid UPtake: Rationale and Design of the Randomized FRESH-UP Study.

AIMS: It is common practice for clinicians to advise fluid restriction in patients with heart failure (HF), but data from clinical trials are lacking. Moreover, fluid restriction is associated with thirst distress and may adversely impact quality of life (QoL). To address this gap in evidence, the Fluid REStriction in Heart failure vs liberal fluid UPtake (FRESH-UP) study was initiated. METHODS: The FRESH-UP study is a randomized, controlled, open-label, multicenter trial to investigate the effects of a 3-month period of liberal fluid intake vs fluid restriction (1500 mL/day) on QoL in outpatients with chronic HF (New York Heart Association Classes II--III). The primary aim is to assess the effect on QoL after 3 months using the Overall Summary Score of the Kansas City Cardiomyopathy Questionnaire (KCCQ). Thirst distress, as assessed by the Thirst Distress Scale for patients with HF, KCCQ Clinical Summary Score, each of the KCCQ domains and clinically meaningful changes in these scores, the EQ-5D-5L, patient-reported fluid intake and safety (ie, death, HF hospitalizations) are secondary outcomes. The FRESH-UP study is registered at ClinicalTrials.gov (NCT04551729). CONCLUSION: The results of the FRESH-UP study will add substantially to the level of evidence concerning fluid management in chronic HF and may impact the QoL of these patients.