The family caregivers of patients with heart failure (HF) report burden and poor quality of life, but little is known about changes in their perceptions over time.
The aims of this study were (1) to evaluate changes in caregiver burden (perceived time spent and difficulty with caregiving tasks), perceived control, depressive symptoms, anxiety, perceived life changes, and physical and emotional health-related quality of life; (2) to determine differences in perceptions between caregivers of patients with low HF symptoms (New York Heart Association class I and II) and caregivers of patients with high HF symptoms (New York Heart Association class III and IV); and (3) to the estimate time spent performing caregiving tasks.
Sixty-three HF patients and 63 family caregivers were enrolled; 53 caregivers completed the longitudinal study. Data were collected from medical records and interviews conducted by advanced practice nurses at baseline and 4 and 8 months later.
Caregivers who completed the study had significant improvements in perceived time spent on and difficulty of caregiving tasks from baseline to 4 and 8 months, and depressive symptoms decreased from baseline to 8 months. Perceived life changes resulting from caregiving became more positive from baseline to 4 and 8 months. Perceived control, anxiety, and health-related quality of life did not change. Compared with caregivers of patients with low symptoms, caregivers of patients with high symptoms perceived that they spent more time on tasks and that tasks were more difficult, had higher anxiety, and had poorer physical health-related quality of life. Estimated time in hours spent providing care was high.
In this sample, perceptions of the caregiving experience improved over 8 months. Health-related quality of life was moderately poor over the 8 months. Caregivers of patients with more severe HF symptoms may be particularly in need of interventions to reduce time and difficulty of caregiving tasks and improve physical health-related quality of life.
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Susan J. Pressler, PhD, RN Professor, School of Nursing, University of Michigan, Ann Arbor.
Irmina Gradus-Pizlo, MD Associate Professor, School of Medicine, Indiana University, Krannert Institute of Cardiology, and Director, Indiana University Health Advanced Heart Care Program, Indianapolis.
Suzanne D. Chubinski, PhD, RN Associate Professor, College of Nursing, St Francis University, Ft Wayne, Indiana.
George Smith, MSW Social Worker, Indiana University Health Advanced Heart Care Program, Indianapolis.
Susanne Wheeler, MSN, RN Clinical Nurse Specialist, Good Samaritan Hospital, Vincennes, Indiana.
Rebecca Sloan, PhD, RN Associate Professor, School of Nursing, Indiana University, Indianapolis.
Miyeon Jung, MSN, RN PhD Student, School of Nursing, University of Michigan, Ann Arbor.
This study was supported by Research Investment Funds, Indiana University School of Nursing, and the Barron Quality of Life Research Award, Center for Enhancing Quality of Life in Chronic Illness, at Indiana University School of Nursing and in part by National Institute of Nursing Research (R01 NR08147 and R01 NR009280).
This work was carried out at Indiana University, Indianapolis.
The authors have no conflicts of interest to disclose.
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Correspondence Susan J. Pressler, PhD, RN, School of Nursing, University of Michigan, 400 N Ingalls, Ann Arbor, MI 48109 (firstname.lastname@example.org).