School of Nursing, University of Michigan, Ann Arbor, MI 48109, USA.
J Cardiovasc Nurs. 2013 Sep-Oct;28(5):417-28. doi: 10.1097/JCN.0b013e3182563877.
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.
心力衰竭（HF）患者的家庭照料者报告负担重，生活质量差，但人们对其认知随时间的变化知之甚少。
本研究旨在：（1）评估照料者负担（感知的照顾时间和照顾任务的难度）、感知控制、抑郁症状、焦虑、感知生活变化以及身体和情绪健康相关生活质量的变化；（2）确定低 HF 症状（纽约心脏协会[NYHA]I 级和 II 级）患者的照料者和高 HF 症状（NYHA III 级和 IV 级）患者的照料者之间的认知差异；（3）估计执行照顾任务所花费的时间。
共纳入 63 例 HF 患者和 63 名家庭照料者，其中 53 名照料者完成了纵向研究。基线时以及 4 个月和 8 个月后，由高级执业护士通过病历和访谈收集数据。
完成研究的照料者在感知照顾时间和照顾任务难度方面，从基线到 4 个月和 8 个月均有显著改善，抑郁症状从基线到 8 个月也有所下降。从基线到 4 个月和 8 个月，由于照顾而导致的感知生活变化变得更加积极。感知控制、焦虑和健康相关生活质量没有变化。与低症状患者的照料者相比，高症状患者的照料者认为他们在任务上花费的时间更多，任务更困难，焦虑程度更高，身体健康相关生活质量更差。估计的照顾时间为高。
在本样本中，对照顾体验的认知在 8 个月内有所改善。在 8 个月内，健康相关生活质量较差。症状更严重的 HF 患者的照料者可能特别需要干预措施来减少照顾任务的时间和难度，并改善身体健康相关的生活质量。
