A qualitative study of living with the burden from heart failure treatment: Exploring the patient capacity for self-care.
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ABSTRACT:
SUBMITTER: Nordfonn OK
PROVIDER: S-EPMC7113501 | biostudies-literature | 2020 May
REPOSITORIES: biostudies-literature
Publications
A qualitative study of living with the burden from heart failure treatment: Exploring the patient capacity for self-care.
Nordfonn Oda Karin OK Morken Ingvild Margreta IM Lunde Husebø Anne Marie AM
Nursing open 20200208 3
<h4>Aim</h4>To explore how patients with heart failure perceive their capacity to manage treatment and self-care.<h4>Design</h4>A qualitative descriptive study.<h4>Methods</h4>Patients (<i>N</i> = 17) were recruited from a nurse-led heart failure outpatient clinic from May-August 2017. Data were collected through individual semi-structured interviews and analysed using systematic text condensation.<h4>Results</h4>Three main themes were identified as follows: "Personal characteristics," "Coping s ...[more]
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Project description:BackgroundMobile apps have the potential to support patients with heart failure and facilitate disease self-management, but this area of research is recent and rapidly evolving, with inconsistent results for efficacy. So far, most of the published studies evaluated the feasibility of a specific app or assessed the quality of apps available in app stores. Research is needed to explore patients' and clinicians' perspectives to guide app development, evaluation, and implementation into models of care.ObjectiveThis study aims to explore the patient and primary care clinician perspective on the facilitators and barriers to using mobile apps, as well as desired features, to support heart failure self-management.MethodsThis is a qualitative phenomenological study involving face-to-face semistructured interviews. Interviews were conducted in a general practice clinic in Sydney, Australia. Eligible participants were adult patients with heart failure and health care professionals who provided care to these patients at the clinic. Patients did not need to have previous experience using heart failure mobile apps to be eligible for this study. The interviews were audio-recorded, transcribed, and analyzed using inductive thematic data analysis in NVivo 12.ResultsA total of 12 participants were interviewed: 6 patients (mean age 69 [SD 7.9] years) and 6 clinicians. The interviews lasted from 25 to 45 minutes. The main facilitators to the use of apps to support heart failure self-management were communication ability, personalized feedback and education, and automated self-monitoring. Patients mentioned that chat-like features and ability to share audio-visual information can be helpful for getting support outside of clinical appointments. Clinicians considered helpful to send motivational messages to patients and ask them about signs and symptoms of heart failure decompensation. Overall, participants highlighted the importance of personalization, particularly in terms of feedback and educational content. Automated self-monitoring with wireless devices was seen to alleviate the burden of tracking measures such as weight and blood pressure. Other desired features included tools to monitor patient-reported outcomes and support patients' mental health and well-being. The main barriers identified were the patients' unwillingness to engage in a new strategy to manage their condition using an app, particularly in the case of low digital literacy. However, clinicians mentioned this barrier could potentially be overcome by introducing the app soon after an exacerbation, when patients might be more willing to improve their self-management and avoid rehospitalization.ConclusionsThe use of mobile apps to support heart failure self-management may be facilitated by features that increase the usefulness and utility of the app, such as communication ability in-between consultations and personalized feedback. Also important is facilitating ease of use by supporting automated self-monitoring through integration with wireless devices. Future research should consider these features in the co-design and testing of heart failure mobile apps with patients and clinicians.
| S-EPMC9069281 | biostudies-literature
Project description:Background: Adherence to a complex, yet effective medication regimen improves clinical outcomes in patients with chronic heart failure (CHF). However, patient adherence to an agreed upon plan for medication-taking is sub-optimal and continues to hover at 50% in developed countries. Studies to improve medication-taking have focused on interventions to improve adherence to guideline-directed medication therapy, yet few of these studies have integrated patients' perceptions of what constitutes effective strategies for improved medication-taking and self-care in everyday life. The purpose of this formative study was to explore patient perceived facilitators of selfcare and medication-taking in South Asian CHF patients. Methods: We conducted in-depth interviews of patients with long standing heart failure admitted to the cardiology and internal medicine wards of a South Indian tertiary care hospital. We purposively sampled using the following criteria: sex, socio-economic status, health literacy and patient reported medication adherence in the month prior to hospitalization. We employed inductive coding to identify facilitators. At the end of 15 interviews (eight patients and seven caregivers; seven patient-caregiver dyads), we arrived at theoretical saturation for facilitators. Results: Facilitators could be classified into intrinsic (patient traits - situational awareness, self-efficacy, gratitude, resilience, spiritual invocation and support seeking behavior) and extrinsic (shaped by the environment - financial security and caregiver support, company of children, ease of healthcare access, trust in provider/hospital, supportive environment and recognizing the importance of knowledge). Conclusions: We identified and classified a set of key patient and caregiver reported self-care facilitators among Indian CHF patients. The learnings from this study will be incorporated into an intervention package to improve patient engagement, overall self-care and patient-caregiver-provider dynamics.
| S-EPMC7101008 | biostudies-literature
Project description:IntroductionAs individual interventions, home-based care and remote monitoring have been shown to help prevent hospitalizations for those with heart failure (HF) although both interventions have been limited by scalability and technical constraints, respectively. Few qualitative studies have explored patient perspectives, including acceptability, barriers, and facilitators of HF care inclusive of both interventions. The objective of this study is to explore patient perceptions on HF management at home, the use of home-based remote monitoring, and the value of home-based care.MethodsQualitative interviews (N = 27) were conducted via phone (12/2020-3/2021) with adults with HF. A framework analysis was used to identify main themes along with verbatim transcription for coding and analyses. There were 5 key interview domains: general HF knowledge, perceptions of the value of home-based care, unmet needs related to the social determinants of health (SDOH), experience with healthcare technology and remote monitoring, and challenges in HF home management.ResultsFive major themes emerged. Patients reported: (1) home-based care plan instructions are understood; (2) following medication, diet, and fluid management instructions are challenging due to difficult adherence to and implementation at home; (3) financial limitations serve as barriers to acquiring healthy food; (4) home-based support is a valuable component of managing medications, diet, and fluid; (5) despite limited use of technology, strong willingness to use remote monitoring is present amongst most.ConclusionsParticipants reported understanding of care plan instructions and challenges adhering to care plans at home. Barriers included needing more home-based support for medications, diet, and fluid management and requiring additional assistance with financial barriers related to unmet social needs. A combined intervention inclusive of remote monitoring and home-based support has potential to improve home-based strategies and clinical outcomes for HF patients.
| S-EPMC9619261 | biostudies-literature
Project description:BackgroundAlthough implantable cardioverter-defibrillators (ICDs) reduce sudden death, these patients die of heart failure (HF) or other diseases. To prevent shocks at the end of life, clinicians should discuss deactivating the defibrillation function.ObjectivesThe purpose of this study was to determine if a clinician-centered teaching intervention and automatic reminders increased ICD deactivation discussions and increased device deactivation.MethodsIn this 6-center, single-blinded, cluster-randomized, controlled trial, primary outcomes were proportion of patients: 1) having ICD deactivation discussions; and 2) having the shocking function deactivated. Secondary outcomes included goals of care conversations and advance directive completion.ResultsA total of 525 subjects were included with advanced HF who had an ICD: 301 intervention and 224 control. At baseline, 52% (n = 272) were not candidates for advanced therapies (i.e., cardiac transplant or mechanical circulatory support). There were no differences in discussions (41 [14%] vs. 26 [12%]) or deactivation (33 [11%] vs. 26 [12%]). In pre-specified subgroup analyses of patients who were not candidates for advanced therapies, the intervention increased deactivation discussions (32 [25%] vs. 16 [11%]; odds ratio: 2.90; p = 0.003). Overall, 99 patients died; there were no differences in conversations or deactivations among decedents.Secondary outcomesAmong all participants, there was an increase in goals of care conversations (47% intervention vs. 38% control; odds ratio: 1.53; p = 0.04). There were no differences in completion of advance directives.ConclusionsThe intervention increased conversations about ICD deactivation and goals of care. HF clinicians were able to apply new communication techniques based on patients' severity of illness. (An Intervention to Improve Implantable Cardioverter-Defibrillator Deactivation Conversations [WISDOM]; NCT01459744).
| S-EPMC7000126 | biostudies-literature
Project description:ObjectivesThis study aims to enhance researchers' and nurses' understanding of how to best support migrant patients with heart failure in self-care management. Previous research on self-care in heart failure patients has highlighted its importance, particularly among migrant populations. Nurses play an important role in informing and engaging patients with chronic conditions like heart failure to support their active participation in self-care. However, nurses' experiences of providing self-care counseling to migrant populations with heart failure have not been studied.MethodsA qualitative study was conducted. Nurses working with migrant patients with HF (n = 13) from different types of facility in Western Sweden were interviewed between October and December 2020. Data were collected using semi-structured interviews and analyzed using inductive thematic analysis.ResultsThe main theme that emerged from the interviews was the difficulty for nurses "to find balance" in self-care counseling. The nurses during self-care counseling had: "to accept challenges," "to use creative strategies," faced "problems related to health literacy," and "to work according to their (the nurses') obligations." It was evident that nurses faced several challenges in counseling migrants in self-care, including language and cultural barriers, time resource constraints, low levels of health literacy, and experienced disharmony between the law and their professional norms. They perceived building caring relationships with their patients to be crucial to fostering health-promoting self-care processes.ConclusionsTo increase self-care adherence, nurses must become more sensitive to cultural differences and adapt self-care counseling to patients' health literacy. The findings of this research support and challenge nurses in providing the best counsel to migrant patients with heart failure living in Sweden's multi-ethnic society. Policymakers in the health care organization should act to facilitate mutual cultural understanding between all involved partners for patient-safe self-care counseling.
| S-EPMC8283704 | biostudies-literature
Project description:Self-care plays a crucial role in the management of heart failure (HF) and is especially important for older patients who are frail. However, there is limited knowledge about how frail, older patients with HF perceive and experience self-care. Therefore, the aim of this study was to describe the experiences of self-care among frail, older patients with HF. A qualitative descriptive design with semi-structured interviews with frail, older patients diagnosed with HF (n = 19; median age 82 years). Thematic analysis, guided by Braun and Clarke, was used to analyse the data. Two main themes emerged from the analysis: 1) "To maintain my health," encompassing various aspects such as hygiene practices, engaging in physical activity, medication adherence, following a healthy diet, and ensuring adequate rest; and 2) "To maintain my well-being and happiness," highlighting the importance of hobbies, maintaining independence, participating in social activities, and creating a supportive environment. This study provides valuable insights into the perspectives of frail, older patients with HF regarding self-care. It was observed that older patients often associate self-care with general well-being, hygiene, and happiness. Clear communication between healthcare providers and patients is essential to align different perspectives on self-care and ensure that self-care plans are tailored to individual needs. Moreover, addressing the emotional well-being and happiness of patients should be prioritized, as these factors play a significant role in promoting self-care adherence.
| S-EPMC10704742 | biostudies-literature
Project description:BackgroundHeart failure (HF) affects many older individuals in North America, with recurrent hospitalizations despite postdischarge strategies to prevent readmission. Proper HF self-care can potentially lead to better clinical outcomes, yet many older patients find self-care challenging. Mobile health (mHealth) apps can provide support to patients with respect to HF self-care. However, many mHealth apps are not designed to consider potential patient barriers, such as literacy, numeracy, and cognitive impairment, leading to challenges for older patients. We previously demonstrated that a paper-based standardized diuretic decision support tool (SDDST) with daily weights and adjustment of diuretic dose led to improved self-care.ObjectiveThe aim of this study is to better understand the self-care challenges that older patients with HF and their informal care providers (CPs) face on a daily basis, leading to the conversion of the SDDST into a user-centered mHealth app.MethodsWe recruited 14 patients (male: 8/14, 57%) with a confirmed diagnosis of HF, aged ≥60 years, and 7 CPs from the HF clinic and the cardiology ward at the Hamilton General Hospital. Patients were categorized into 3 groups based on the self-care heart failure index: patients with adequate self-care, patients with inadequate self-care without a CP, or patients with inadequate self-care with a CP. We conducted semistructured interviews with patients and their CPs using persona-scenarios. Interviews were transcribed verbatim and analyzed for emerging themes using an inductive approach.ResultsSix themes were identified: usability of technology, communication, app customization, complexity of self-care, usefulness of HF-related information, and long-term use and cost. Many of the challenges patients and CPs reported involved their unfamiliarity with technology and the lack of incentive for its use. However, participants were supportive and more likely to actively use the HF app when informed of the intervention's inclusion of volunteer and nurse assistance.ConclusionsPatients with varying self-care adequacy levels were willing to use an mHealth app if it was simple in its functionality and user interface. To promote the adoption and usability of these tools, patients confirmed the need for researchers to engage with end users before developing an app. Findings from this study can be used to help inform the design of an mHealth app to ensure that it is adapted for the needs of older individuals with HF.
| S-EPMC7657601 | biostudies-literature
Project description:BackgroundPeople living with heart failure (HF) are particularly vulnerable after hospital discharge. An alliance between patient authors, clinicians, industry, and co-developers of HF programs can represent an effective way to address the unique concerns and obstacles people living with HF face during this period. The aim of this narrative review article is to discuss challenges and opportunities of this approach, with the goal of improving participation and clinical outcomes of people living with HF.MethodsThis article was co-authored by people living with HF, heart transplant recipients, patient advocacy representatives, cardiologists with expertise in HF care, and industry representatives specializing in patient engagement and cardiovascular medicine, and reviews opportunities and challenges for people living with HF in the post-hospital discharge period to be more integrally involved in their care. A literature search was conducted, and the authors collaborated through two virtual roundtables and via email to develop the content for this review article.ResultsNumerous transitional-care programs exist to ease the transition from the hospital to the home and to provide needed education and support for people living with HF, to avoid rehospitalizations and other adverse outcomes. However, many programs have limitations and do not integrally involve patients in the design and co-development of the intervention. There are thus opportunities for improvement. This can enable patients to better care for themselves with less of the worry and fear that typically accompany the transition from the hospital. We discuss the importance of including people living with HF in the development of such programs and offer suggestions for strategies that can help achieve these goals. An underlying theme of the literature reviewed is that education and engagement of people living with HF after hospitalization are critical. However, while clinical trial evidence on existing approaches to transitions in HF care indicates numerous benefits, such approaches also have limitations.ConclusionNumerous challenges continue to affect people living with HF in the post-hospital discharge period. Strategies that involve patients are needed, and should be encouraged, to optimally address these challenges.
| S-EPMC10097448 | biostudies-literature
Project description:This study evaluated a 12-week, home-based combined aerobic exercise (walking) and computerized cognitive training (EX/CCT) program on heart failure (HF) self-care behaviors (Self-care of HF Index [SCHFI]), disease specific quality of life (Kansas City Cardiomyopathy Questionnaire [KCCQ]), and functional capacity (6-minute walk distance) compared to exercise only (EX) or a usual care attention control (AC) stretching and flexibility program. Participants (N = 69) were older, predominately female (54%) and African American (55%). There was significant improvement in self-care management, F(2, 13) = 5.7, p < .016; KCCQ physical limitation subscale, F(2, 52) = 3.4, p < .039; and functional capacity (336 ± 18 vs 388 ± 20 m, p < .05) among the EX/CCT participants. The underlying mechanisms that EX and CCT targets and the optimal dose that leads to improved outcomes are needed to design effective interventions for this rapidly growing population.
| S-EPMC8041896 | biostudies-literature
Project description:Background: Deficits in quality of care for patients with heart failure (HF) contribute to high mortality in this population. This qualitative study aimed to understand the barriers and facilitators to high-quality HF care in Kerala, India. Methods: Semi-structured, in-depth interviews were conducted with a purposive sample of health care providers (n=13), patients and caregivers (n=14). Additionally, focus group discussions (n=3) were conducted with patients and their caregivers. All interviews and focus group discussions were transcribed verbatim. Textual data were analysed using thematic analysis. Results: Patients' motivation to change their lifestyle behaviours after HF diagnosis and active follow-up calls from health care providers to check on patients' health status were important enablers of high-quality care. Health care providers' advice on substance use often motivated patients to stop smoking and consuming alcohol. Although patients expected support from their family members, the level of caregiver support for patients varied, with some patients receiving strong support from caregivers and others receiving minimal support. Emotional stress and lack of structured care plans for patients hindered patients' self-management of their condition. Further, high patient loads often limited the time health care providers had to provide advice on self-management options. Nevertheless, the availability of experienced nursing staff to support patients improved care within health care facilities. Finally, initiation of guideline-directed medical therapy was perceived as complex by health care providers due to multiple coexisting chronic conditions in HF patients. Conclusions: Structured plans for self-management of HF and more time for patients and health care providers to interact during clinical visits may enable better clinical handover with patients and family members, and thereby improve adherence to self-care options. Quality improvement interventions should also address the stress and emotional concerns of HF patients.
| S-EPMC8078213 | biostudies-literature