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.

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.].

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.

Family members' long-term grief management: A prospective study of factors during ongoing palliative care and bereavement.

OBJECTIVES: Up to 10% of bereaved individuals can develop prolonged grief disorder. Several risk factors for prolonged grief symptom severity in family members have been identified, but there is a lack of knowledge regarding the multivariable effects between family members coping with loss and patient-related factors for prolonged grief symptom severity during bereavement. The aim was to identify risk factors for prolonged grief symptom severity in family members 1 year after patient death in relation to (1) the family member and the patient during ongoing palliative care and (2) the family member during bereavement. METHODS: The participants consisted of family members (n = 99) of patients admitted to palliative home care in Sweden. The participants completed a survey during ongoing palliative care and at a follow-up 1 year after the patient's death. RESULTS: The model selection chose 4 demographic and 4 preloss variables: family member's nervousness and stress, the patient's sense of security during palliative care, family members' sense of security during palliative care, and a family member attachment security anxiety dimension. Two postloss variables were positively associated with prolonged grief symptom severity: family members' continuing bond - internalized and continuing bond - externalized. SIGNIFICANCE OF RESULTS: How family members coped depended on (i) variables linked to the family members themselves, (ii) the relationship to the patient, and (iii) some patient-specific variables. There was also a link between preloss variables and postloss prolonged grief symptom severity. Hence, it should be possible to identify family members with a heightened risk for longer-term prolonged grief symptoms.

A Clinical Tool (CUE-tool) for Health Care Professionals to Assess the Usability and Quality of the Content of Medical Information Websites: Electronic Delphi Study.

BACKGROUND: As patients are increasingly searching for information about their medical condition on the internet, there is a need for health professionals to be able to guide patients toward reliable and suitable information sources on the internet. OBJECTIVE: The aim of the study was to develop a clinical tool for health care professionals to assess the usability and quality of the content of websites containing medical information that could be recommended to patients. METHODS: A 3-round modified electronic Delphi (eDelphi) study was conducted with 20 health care professionals. RESULTS: In round one of the eDelphi study, of the 68 items initially created, 41 items (29 on usability and 12 on content) were rated as important or very important by more than half of the panel and thus selected for further evaluation in round two. In round two, of the 41 items chosen from round 1, 19 were selected (9 on usability and 10 on content) as important or very important by more than half of the panel for further evaluation. As a result of round three, 2 items were combined as a single item, leaving the instrument with 18 items in total (8 on usability and 10 on content). The tool is freely accessible online. CONCLUSIONS: The CUE-tool can be used to (1) evaluate the usability and reliability of the content of websites before recommending them to patients as a good information source; (2) identify websites that do not have reliable content or may be difficult for patients to use; (3) develop quality websites by using the criteria in the CUE-tool; and (4) identify different qualities between different websites.

Perceived Control Prevents Perception of Negative Changes in Life as a Result of Caring for a Patient With Heart Failure.

INTRODUCTION: Family caregivers of patients with heart failure (HF) commonly experience emotional distress and caregiving burden. Despite their caregiving distress, caregivers may experience positive or negative changes in their life compared with before caregiving. Greater perceived control is associated with better health outcomes, but little is known about whether perceived control is related to caregivers' perceptions of positive or negative changes in life, independent of their distress and burden in providing care for patients with HF. The specific aims were to compare emotional distress and caregiving burden between caregivers who perceived positive versus negative changes in life due to caregiving and to examine whether perceived control predicts the perception of positive or negative changes in life while controlling for emotional distress and caregiving burden. METHODS: Primary caregivers of patients with HF (N = 140, 75% women) completed questionnaires about perceived positive or negative changes in life as a result of caregiving, perceived control, depressive symptoms, anxiety, and caregiving burden. Independent t test, χ2, and logistic regressions were used to accomplish specific aims. RESULTS: Compared with caregivers who reported positive changes in life (42%), caregivers who perceived negative changes in life (58%) had higher levels of depressive symptoms, anxiety, and caregiving burden. Lower level of perceived control was an independent predictor of perceived negative changes in life, controlling for age, gender, depressive symptoms, anxiety, and caregiving burden (odds ratio, 0.89; 95% confidence interval, 0.79-0.99; P = .0038). CONCLUSION: Greater perceived control played a protective role for caregivers independent of caregiver burden. Interventions designed to enhance perceived control may improve caregivers' perceptions of changes in their life.

Associations Among Perceived Control, Depressive Symptoms, and Well-being in Patients With Heart Failure and Their Spouses: A Dyadic Approach.

BACKGROUND: High levels of perceived control and lower levels of depressive symptoms are associated with better well-being in both patients with heart failure and their spouses at an individual level. However, there is a knowledge gap about how these individual factors have reciprocal influences on partners' well-being within the patient-spouse dyads. OBJECTIVE: The aims of this study were to examine dyads of patients with heart failure and their spouses on whether the patients' perceived control over the management of heart failure and depressive symptoms predicts their own and their spouses' physical and emotional well-being and to examine whether patients' perceived control predicts their own and their spouses' depressive symptoms. METHODS: A total 155 patient-spouse dyads (patients: 75% male, mean age of 71 years, 53% classified as New York Heart Association III; spouses: 75% female, mean age of 69 years) were recruited from 2 hospital-based outpatient heart failure clinics. Participants completed the Control Attitude Scale, the Beck Depression Inventory, and the Short-Form 36. Dyadic data were analyzed using multilevel regression of the actor-partner interdependence model. RESULTS: Perceived control had an actor effect on emotional well-being only for patients, and there were partner effects of perceived control on emotional well-being for both patients and their spouses. Depressive symptoms exhibited an actor effect on physical and emotional well-being for patients and spouses, but there were no partner effects of depressive symptoms on emotional well-being. Perceived control had partner effects on depressive symptoms for patients and spouses, but an actor effect of depressive symptoms was only found for patients. CONCLUSION: In an interdependent relationship within the patient-spouse dyads, each dyad member's perceived control influenced their partner's emotional well-being as well as depressive symptoms. The findings suggest development of dyadic interventions that can increase perceived control over the heart condition.

Sense of support within the family: a cross-sectional study of family members in palliative home care.

BACKGROUND: Despite evidence that family members' support to each other can be of importance to its members, there are limited studies of factors related to family members' sense of such support during palliative care. AIM: Based on the family systems approach, we evaluated which factors were associated with family members' sense of support within their closest family in a palliative home care context and developed a model that predicts such sense of support. DESIGN: A cross-sectional design was used. We interviewed 209 adult family members (69% of eligible) of adult patients with expected short survival receiving palliative home care. METHODS: Generalised linear models were used to evaluate individual factors related to family members' sense of support within their closest family during palliative care. The Akaike Information Criterion (AIC) was applied in the model-building analyses. RESULTS: Nineteen variables were identified that were significantly associated with the family members' sense of support within the closest family. Model building selected six variables for predicting this sense of support (decreasing Wald values): family member perceiving support from other more distant family members; feeling secure with the provided palliative home care; possibility of respite if family member needed a break; family member living alone; being a child of the patient (inverse relationship); perceiving that the patient was supported by other family members. CONCLUSIONS: Our findings support clinical application of the Family Systems Theory in the context of palliative care. The factors identified may be of value in assisting practitioners in detecting and treating family members sensing a low level of support within the closest family.

Patients' and Nurses' Experiences and Perceptions of Remote Monitoring of Implantable Cardiac Defibrillators in Heart Failure: Cross-Sectional, Descriptive, Mixed Methods Study.

BACKGROUND: The new generation of implantable cardioverter-defibrillators (ICDs) supports wireless technology, which enables remote patient monitoring (RPM) of the device. In Sweden, it is mainly registered nurses with advanced education and training in ICD devices who handle the arrhythmias and technical issues of the remote transmissions. Previous studies have largely focused on the perceptions of physicians, and it has not been explored how the patients' and nurses' experiences of RPM correspond to each other. OBJECTIVE: Our objective is to describe, explore, and compare the experiences and perceptions, concerning RPM of ICD, of patients with heart failure (HF) and nurses performing ICD follow-up. METHODS: This study has a cross-sectional, descriptive, mixed methods design. All patients with HF and an ICD with RPM from one region in Sweden, who had transitioned from office-based visits to implementing RPM, and ICD nurses from all ICD clinics in Sweden were invited to complete a purpose-designed, 8-item questionnaire to assess experiences of RPM. The questionnaire started with a neutral question: "What are your experiences of RPM in general?" This was followed by one positive subscale with three questions (score range 3-12), with higher scores reflecting more positive experiences, and one negative subscale with three questions (score range 3-12), with lower scores reflecting more negative experiences. One open-ended question was analyzed with qualitative content analysis. RESULTS: The sample consisted of 175 patients (response rate 98.9%) and 30 ICD nurses (response rate 60%). The majority of patients (154/175, 88.0%) and nurses (23/30, 77%) experienced RPM as very good; however, the nurses noted more downsides than did the patients. The mean scores of the negative experiences subscale were 11.5 (SD 1.1) for the patients and 10.7 (SD 0.9) for the nurses (P=.08). The mean scores of the positive experiences subscale were 11.1 (SD 1.6) for the patients and 8.5 (SD 1.9) for the nurses (P=.04). A total of 11 out of 175 patients (6.3%) were worried or anxious about what the RPM entailed, while 15 out of 30 nurses (50%) felt distressed by the responsibility that accompanied their work with RPM (P=.04). Patients found that RPM increased their own (173/175, 98.9%) and their relatives' (169/175, 96.6%) security, and all nurses (30/30, 100%) answered that they found RPM to be necessary from a safety perspective. Most patients found it to be an advantage with fewer office-based visits. Nurses found it difficult to handle different systems with different platforms, especially for smaller clinics with few patients. Another difficulty was to set the correct number of alarms for the individual patient. This caused a high number of transmissions and a risk to miss important information. CONCLUSIONS: Both patients and nurses found that RPM increased assurance, reliance, and safety. Few patients were anxious about what the RPM entailed, while about half of the nurses felt distressed by the responsibility that accompanied their work with RPM. To increase nurses' sense of security, it seems important to adjust organizational routines and reimbursement systems and to balance the workload.

Can a single question about family members' sense of security during palliative care predict their well-being during bereavement? A longitudinal study during ongoing care and one year after the patient's death.

BACKGROUND: It has been recognised that more evidence about important aspects of family members' sense of security during palliative care is needed. The objectives of the study was: i) to discover what variables are associated with family members feeling secure during palliative care; ii) to develop a model of family members' sense of security during palliative care, and iii) to evaluate if family members' sense of security during ongoing palliative care predicts well-being during bereavement. METHODS: Between September 2009 and October 2010, 227 family members (of patients admitted to six Swedish palliative home care units) participated in the study (participation rate 75%) during ongoing care and 158 participated also 1 year after the patient's death (70%). They answered a single question regarding the family members' sense of security during the palliative care period. The question was constructed and validated by the researchers. Data were also collected using other questions and validated instruments and analysed stepwise with Generalized Linear Models (ordinal multinomial distribution and logit link). RESULTS: Sixteen variables were positively related to family members' sense of security during ongoing palliative care. The five variables with the highest importance were selected into the model (listed in decreasing importance): Family members' mastery; nervousness and stress; self-efficacy; patient having gynaecological cancer; family members' perceived quality of life. Moreover, the family members' sense of security during ongoing palliative care predicted ten variables indicating their well-being 1 year after the patient's death, e.g. psychological well-being, complicated grief symptoms, health related quality of life. CONCLUSIONS: The findings reveal possibilities to identify family members at risk of negative adjustment to bereavement in clinical practice and may help to develop interventions to support family members during ongoing palliative care.

Perceptions of Information and Communication Technology as Support for Family Members of Persons With Heart Failure: Qualitative Study.

BACKGROUND: Heart failure (HF) affects not only the person diagnosed with the syndrome but also family members, who often have the role of informal carers. The needs of these carers are not always met, and information and communications technology (ICT) could have the potential to support them in their everyday life. However, knowledge is lacking about how family members perceive ICT and see opportunities for this technology to support them. OBJECTIVE: The aim of this study was to explore the perceptions of ICT solutions as supportive aids among family members of persons with HF. METHODS: A qualitative design was applied. A total of 8 focus groups, comprising 23 family members of persons affected by HF, were conducted between March 2015 and January 2017. Participants were recruited from 1 hospital in Sweden. A purposeful sampling strategy was used to find family members of persons with symptomatic HF from diverse backgrounds. Data were analyzed using qualitative content analysis. RESULTS: The analysis revealed 4 categories and 9 subcategories. The first category, about how ICT could provide relevant support, included descriptions of how ICT could be used for communication with health care personnel, for information and communication retrieval, plus opportunities to interact with persons in similar life situations and to share support with peers and extended family. The second category, about how ICT could provide access, entailed how ICT could offer solutions not bound by time or place and how it could be both timely and adaptable to different life situations. ICT could also provide an arena for family members to which they might not otherwise have had access. The third category concerned how ICT could be too impersonal and how it could entail limited personal interaction and individualization, which could lead to concerns about usability. It was emphasized that ICT could not replace physical meetings. The fourth category considered how ICT could be out of scope, reflecting the fact that some family members were generally uninterested in ICT and had difficulties envisioning how it could be used for support. It was also discussed as more of a solution for the future. CONCLUSIONS: Family members described multiple uses for ICT and agreed that ICT could provide access to relevant sources of information from which family members could potentially exchange support. ICT was also considered to have its limitations and was out of scope for some but with expected use in the future. Even though some family members seemed hesitant about ICT solutions in general, this might not mean they are unreceptive to suggestions about their usage in, for example, health care. Thus, a variety of factors should be considered to facilitate future implementations of ICT tools in clinical practice.

Long-term effects of a dyadic psycho-educational intervention on caregiver burden and morbidity in partners of patients with heart failure: a randomized controlled trial.

BACKGROUND: Partners of patients with heart failure provide both practical and emotional support. Many partners assume caregiving responsibilities without being aware of the burden related with this role. OBJECTIVE: Our work has established that a psycho-educational intervention has benefits at 3, but not at 12 months for patients with heart failure. Further we had not described the long-term effects in caregivers. This study aimed to determine the 24-months effects of a dyadic psycho-educational intervention on caregiver burden and morbidity in partners of patients with heart failure and study factors associated with a change in caregiver burden. DESIGN: A randomized controlled study design, with a follow-up assessment after 24 months. SETTING AND PARTICIPANTS: Partners to patients with heart failure were recruited from two hospitals in the southeast of Sweden. INTERVENTION: A three session nurse-led psycho-educational program was tested and included psychosocial support to maintain the partners' physical and mental functions, and perceived control. Several instrument were used to measure caregiver burden, perceived control, physical and mental health, depression and morbidity. RESULTS: One hundred fifty-five partners were included. There were no significant differences in any index of caregiver burden or morbidity among the partners in the intervention and control groups after 24 months. Overall, the mean total caregiver burden was found to be significantly increased compared to baseline (36 ± 12 vs 38 ± 14, p < 0.05). A younger partner, less comorbidity, higher levels of perceived control, better physical health and less symptoms of depression in patients, and better mental health in the partners were factors associated with absence of increased caregiver burden over time. DISCUSSION AND CONCLUSION: Our intervention did not significantly decrease caregiver burden or morbidity. Over time, several aspects of burden increased in both groups. To improve outcomes, individualized and targeted interventions might be beneficial. REGISTERED ON CLINICALTRIALS. GOV IDENTIFIER: NCT02398799.

Perceived caring needs in patient-partner dyads affected by heart failure: a qualitative study.

AIMS AND OBJECTIVES: To explore the perceived caring needs in patient-partner dyads affected by heart failure to develop an understanding of potential areas of support. BACKGROUND: Being affected by heart failure has a great impact on both the patient and the partner but until now contemporary care has remained patient focused. DESIGN: A qualitative study design was used. METHODS: Eight focus group interviews were performed, which included nineteen patients diagnosed with heart failure and their cohabiting partner. Patients were aged between 55-89 years and partners' ages ranged from 48-87 years. Data were analysed using qualitative content analyses. RESULTS: The dyads perceived that caring needs could be summarised in two themes 'Dyads perceive a need for continuous guidance through the different phases of the illness trajectory' and 'Dyads perceive a need to share burden and support with each other and others'. The dyads described a need to learn more about heart failure to be able to manage everyday life. Regular outpatient clinic visits and access to telephone support were vital, and having someone who cared about the well-being of the partners was perceived as comforting. Both the patient and the partner need to be present at the clinic visits. Receiving the same information and being able to ask questions reduce insecurity. Meeting others in the same situation and sharing the burden in group sessions were proposed as an opportunity to support each other and others. CONCLUSIONS: There is a need to improve education and support for patient-partner dyads affected by heart failure. RELEVANCE TO CLINICAL PRACTICE: The result shows the importance to provide continuous healthcare contacts throughout the illness trajectory. Furthermore, partners should be included at follow-up, and support groups should be organised so that dyads can meet and support each other.

The long-term effect of an m-health tool on self-care in patients with heart failure: a pre-post interventional study with a mixed-method analysis.

AIMS: The aims of this study were (i) to evaluate the effects of using an m-health tool on self-care behaviour at 3 and 12 months and (ii) to explore the experiences and perceptions of heart failure (HF) patients about the m-health tool. METHODS AND RESULTS: In this pre-post interventional study with a mixed-method analysis, 71 patients diagnosed with HF [49% female, mean age 76.7 years, New York Heart Association (NYHA) II 31%, NYHA III 69%] were enrolled and had the m-health tool installed in their home for 1 year. The tool consisted of a pre-programmed tablet including a weighing scale and interactive education about HF self-care. At baseline, and at 3 and 12 months, self-care was assessed using the European Heart Failure Self-care Behaviour (EHFScB-9) Scale, an eight-item self-administered questionnaire assessing the experiences of the m-health tool. The mean EHFScB-9 at baseline was 63.8 ± 2.8 and it improved to 67.6 ± 7.6 after 3 months (P < 0.05). After 1 year, the score had decreased to 63.2 ± 7.1 (P = 0.68). Most patients rated the tool as 'good', both at 3 months (92%) and after 12 months (93%). Some found the system to be unnecessary to some degree, and this number increased between 3 and 12 months (P < 0.001). Most patients felt that m-health increased their feelings of security, and 85% responded that the system increased their family members' sense of security. CONCLUSION: The m-health tool significantly improved patients' self-care behaviour after 3 months, but this effect did not persist after 1 year. For achieving long-term effects and outcomes, additional and regularly updated self-care support may be needed. REGISTRATION: ClinicalTrials.gov: NCT04955600.

Implementation of Telemonitoring in Health Care: Facilitators and Barriers for Using eHealth for Older Adults with Chronic Conditions.

Purpose: The retrospective study used a hybrid design aimed to a) describe the implementation process of telemonitoring from stakeholders' perspectives and b) identify facilitators and barriers perceived by the care team. Patients and Methods: Qualitative interview data were analyzed using manifest inductive qualitative content analysis to describe what was perceived as barriers and what facilitated the implementation. Participating healthcare professionals recruited from a multi-professional care team in Sweden. Overall, 14 healthcare professionals comprising 8 assistant nurses, 3 nurses, 1 physiotherapist, 1 occupational therapist, and one general practitioner participated in five interviews. Results: Four categories were derived from the interview analysis: previous experience with digital technology, the need for preparation before implementation, perceptions of using telemonitoring in daily practice from the patient's perspective, and perceptions of the relevance and reasons for applying telemonitoring from the care team's perspective. The identification of stakeholders and the need to plan carefully when proposing the introduction of telemonitoring systems into work practices are both crucial. Conclusion: The attitudes of healthcare professionals can be a significant factor in the acceptance and efficiency of the use of telemonitoring in practice. Therefore, implementing new technology in healthcare should involve healthcare professionals at an early stage to gain common understanding.

Experiences of Heart Failure and the Treatment Journey: A Mixed-Methods Study Among Patients with Heart Failure in Sweden.

Purpose: Qualitative studies that highlight the patient perspective of heart failure (HF) and its impact on the lives of patients are limited. Our study objective was to describe the patient's perspective on HF, including the diagnosis, treatment journey and healthcare interactions, and how HF impacts patients' lives and specifically their health-related quality of life (HRQoL) and work capacity. Patients and Methods: This cross-sectional, non-interventional, mixed-methods patient experience study comprised: (i) a quantitative online survey with study-specific questions and assessments of HRQoL and work impairment among 101 patients with HF in Sweden and (ii) 35 qualitative interviews to gain in-depth understanding of the patients' experiences. Results: Patients were found to experience a highly symptomatic and detrimental impact of HF on their HRQoL and work capacity. Fatigue was the most frequently reported symptom, and it was detrimental to all areas of patients' lives limiting them mentally, socially, and physically. Two-thirds of patients were not aware of the type of HF they had, one-third did not check their body weight regularly, and around half did not increase their physical exercise as recommended by both guidelines and healthcare practitioners. Patients preferred specialist to primary care, desired greater access to healthcare, and continuity in whom they interact with in primary care. Conclusion: Patients with HF experience a highly symptomatic burden that affects them physically, mentally, and socially. Our study highlights a major gap in patients' knowledge about HF and HF-related healthcare. These results demonstrate a challenge for the Swedish healthcare system particularly as regards providing patients with continuity, accessibility, and proximity to primary care.

Feasibility, acceptability, and outcome responsiveness of the SYMPERHEART intervention to support symptom perception in persons with heart failure and their informal caregivers: a feasibility quasi-experimental study.

BACKGROUND: Symptom perception is an important process of heart failure (HF) self-care that persons with HF need in order to master self-care management. It also leads to better patient outcomes. Symptom perception consists of body observation and analysis, which are both challenging. We aimed to test the feasibility, acceptability, and outcome responsiveness of a novel intervention (SYMPERHEART) delivered to persons with HF with their informal caregiver. METHODS: We designed SYMPERHEART as a complex evidence-informed education and support intervention targeting body observation and analysis. We conducted a feasibility quasi-experimental study with a single group pre-post-test design. We included three subsamples: persons with HF receiving home-based care, their informal caregivers exposed to SYMPERHEART, and home-care nurses who delivered SYMPERHEART during 1 month. We assessed feasibility by recruitment time, time to deliver SYMPERHEART, eligibility rate, and intervention fidelity. We assessed acceptability by consent rate, retention rate, persons with HF engagement in body observation, and treatment acceptability. Outcome responsiveness was informed by patient-reported (PRO) and clinical outcomes: HF self-care and the informal caregivers' contribution to HF self-care, perception of HF symptom burden, health status, caregivers' burden, and HF events. We performed descriptive analyses for quantitative data and calculated Cohen's d for PROs. A power analysis estimated the sample size for a future full-scale effectiveness study. RESULTS: We included 18 persons with HF, 7 informal caregivers, and 9 nurses. Recruitment time was 112.6 h. The median time to deliver SYMPERHEART for each participant was 177.5 min. Eligibility rate was 55% in persons with HF. Intervention fidelity revealed that 16 persons with HF were exposed to body observation and analysis. Consent and retention rates in persons with HF were 37.5% and 100%, respectively. Participants engaged actively in symptom and weight monitoring. Treatment acceptability scores were high. Symptom perception and informal caregivers' contribution to symptom perception were found to be responsive to SYMPERHEART. We estimate that a sample size of 50 persons with HF would be needed for a full-scale effectiveness study. CONCLUSIONS: SYMPERHEART was found to be feasible and acceptable. This feasibility study provides information for a subsequent effectiveness study. TRIAL REGISTRATION: ISRCTN. ISRCTN18151041 , retrospectively registered on 4 February 2021, ICTRP Search Portal.

Quality of life and family function are poorest when both patients with heart failure and their caregivers are depressed.

AIMS: Patients with heart failure (HF) and their family caregivers commonly experience depressive symptoms associated with low quality of life (QOL) at the individual level. However, there is a lack of knowledge about how QOL and family function are associated with depressive symptoms at the dyad level. The aim of this article is to compare QOL and family function among dyads stratified by depressive symptoms. METHODS AND RESULTS: Outpatients with HF and their primary caregivers completed the Beck Depression Inventory-II for depressive symptoms, the Short Form 36 for physical and mental QOL, and the McMaster Family Assessment Device for a family function. Analysis of variance was used to compare QOL and family function among the four dyad groups. A total of 91 dyads were categorized into four groups: neither member having depressive symptoms (43.9%), only the caregiver having depressive symptoms (13.2%), only the patient having depressive symptoms (23.1%), and both members having depressive symptoms (20.9%). Dyads without depressive symptoms had the highest levels of physical and mental QOL among the groups. The dyads with both members having depressive symptoms had the lowest levels of physical and mental QOL (P < 0.001) and the lowest levels of general family functioning, problem-solving ability, and communication ability (P < 0.001). Intermediate levels of QOL were seen in dyads with only one member having depressive symptoms, and a similar pattern of intermediate scores was found in all three subscales of family function. CONCLUSION: Dyads with both members having depressive symptoms may be at greatest risk of having poor QOL and low family functioning.