Clinical InvestigationCaregivers' Perceived Roles in Caring for Patients With Heart Failure: What Do Clinicians Need to Know?
Section snippets
Methods
This work was conducted as part of a study to identify unmet care needs in patients with HF and their caregivers.8 Patients and caregivers were identified and recruited through their providers in outpatient cardiology and geriatrics clinics at the University of Colorado Hospital. Purposive sampling was used to maximize variability in age and health status of patients. Each subject provided informed consent, and the study was approved by the Colorado Multiple Institutional Review Board.
Eligible
Results
Patients had a median age of 64 years, one-half were white, and the majority had New York Heart Association functional class III or IV HF.8 Caregivers were generally spouses (47.4%) or daughters (31.6%) of the patients; 63% lived with the patient and two-thirds performed >6 hours of caregiving weekly (Table 1). Caregivers experienced significant role challenges in executing the roles that they perceived for themselves owing to communication challenges and incompatible role expectations that
Discussion
Caregivers identified 3 primary roles in relation to HF patients in this study: as a health manager and care plan enforcer, as an advocate for improved quality of life, and as an expert in the lived reality of the illness. However, caregivers often experienced dissonance between these perceived roles and the much more limited roles that they felt the health care system perceived of them. They also encountered communication challenges that they perceived as making fulfillment of each role more
Conclusion
The clinical course of HF continues to be marked by distressing symptoms, impaired quality of life, recurrent hospitalization, and early mortality. Self-management of HF is a critical component of preventing adverse outcomes; caregivers often play a major role in these activities. Understanding their self-perceived and desired roles better enables clinicians caring for HF patients to support and empower caregivers. This could potentially lead to better outcomes for caregivers and patients.
Acknowledgments
The authors are grateful for the assistance of Carolyn Nowels, MPH, and Jessica Retrum, PhD, LCSW, with the caregiver interviews that informed this analysis.
Disclosures
None.
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Cited by (31)
Problems experienced by informal caregivers of individuals with heart failure: An integrative review
2018, International Journal of Nursing StudiesCitation Excerpt :Three studies (Hamilton, 2016; Levin et al., 2014; Piamjariyaku et al., 2012) either studied only African Americans or African Americans were their primary population of participants. Of the studies reporting gender and ethnicity in individuals with heart failure, the majority of participants were male (Aldred et al., 2005; Burke et al., 2014; Malik et al., 2013) and White (Bakas et al., 2006; Liljeroos et al., 2014; Holden et al., 2015), with ages ranging from 20 to 93 years (Hwang et al., 2011; Yeh and Bull, 2012). Of the 37 studies, the majority reported either NYHA Class II or III heart failure (Ågren et al., 2010; Driel et al., 2014; Malik et al., 2013; Makdessi et al., 2011).
The Effectiveness of a Nurse-Led Cognitive–Behavioral Therapy on the Quality of Life, Self-Esteem and Mood Among Filipino Patients Living With Heart Failure: a Randomized Controlled Trial
2016, Applied Nursing ResearchCitation Excerpt :Immediate and long-term clinical effects of HF include left ventricular dysfunction that contributes to the significant reduction in cardiac output that appears to be responsible for debilitating symptoms such as dyspnea, restlessness, fatigue and weakness that these patients commonly experience (Witte & Clark, 2007). More importantly, HF significantly impacts an individual's physical and emotional functioning (Burke, Jones, Ho, & Bekelman, 2014), increases psychological distress and negatively affects mood (Moser, Dracup, Evangelista, et al., 2010), disrupts psychosocial adjustment (Carels et al., 2004), and ultimately leads to significant impairment in an individual's quality of life (Samartzis, Dimopoulos, Tziongourou, & Nanas, 2013). In addition to conventional pharmacologic and medical therapies that are considered mainstay treatments in the management of patients with HF, interventions aimed on addressing the psychosocial, cognitive/informational, behavioral and emotional needs among patients with HF have been advocated by experts in the field (Gary, Dunbar, Higgins, Musselman, & Smith, 2010; Yancy et al., 2013).
Can we engage caregiver spouses of patients with heart failure with a low-intensity, symptom-guided intervention?
2016, Heart and Lung: Journal of Acute and Critical CareCitation Excerpt :Importantly, symptom-based approaches may lend themselves more strongly to caregiver engagement. Many caregivers desire to be involved in managing symptoms,24,25 and their involvement may reduce symptoms and augment home management of HF.26–28 Incorporating caregiver support in other chronic disease states, including depression and diabetes, also results in significant improvements in symptom relief and home management.29,30
Heart failure family-based education: A systematic review
2016, Patient Education and CounselingCitation Excerpt :Most commonly, HF patients and their families require substantial education regarding engagement in self-care. As a consequence, theory-driven self-care education is aimed at promoting, on a daily basis, self-monitoring of symptoms and engagement in appropriate strategies to address symptom changes [8–10]. In the context of HF, self-care is defined as a process involving the choice of behaviours patients adopt to sustain their health and respond appropriately when changes in symptoms occur [11].
Hospitalizations and Emergency Room Admissions by Mexican American Older Adults with and without Dementia and Caregiver Mental Health
2023, Journal of Alzheimer's Disease
Funding: Dr Burke was supported by the VA HSR&D Colorado Research to Improve Care Coordination REAP. The original interviewers were supported by the Hartford/Jahnigen Center of Excellence at the University of Colorado and Dr Bekelman's VA Career Development Award (08-022). These funding sources had no role in the design, interpretation, or presentation of results. This report represents the views of the authors and not necessarily those of the US Department of Veterans Affairs.
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