School of Nursing, University of Alabama at Birmingham, 1720 2nd Avenue South, 2M019H, Birmingham, AL, 35294-1210, USA.
Department of Psychology, University of Colorado, Denver, Campus Box 173, PO Box 173364, Denver, CO, 80217, USA.
Heart Fail Rev. 2017 Sep;22(5):543-557. doi: 10.1007/s10741-017-9597-4.
Many of the 23 million individuals with heart failure (HF) worldwide receive daily, unpaid support from a family member or friend. Although HF and palliative care practice guidelines stipulate that support be provided to family caregivers, the evidence base to guide care for this population has not been comprehensively assessed. In order to appraise the state-of-the-science of HF family caregiving and recommend areas for future research, the aims of this review were to summarize (1) how caregivers influence patients, (2) the consequences of HF for caregivers, and (3) interventions directed at HF caregivers. We reviewed all literature to December 2015 in PubMed and CINAHL using the search terms "heart failure" AND "caregiver." Inclusion criteria dictated that studies report original research of HF family caregiving. Articles focused on children or instrument development or aggregated HF with other illnesses were excluded. We identified 120 studies, representing 5700 caregivers. Research on this population indicates that (1) caregiving situations vary widely with equally wide-ranging tasks for patients to help facilitate their health behaviors, psychological health and relationships, and quality of life (QoL); (2) caregivers have numerous unmet needs that fluctuate with patients' unpredictable medical status, are felt to be ignored by the formal healthcare system, and can lead to distress, burden, and reduced QoL; and (3) relatively few interventions have been developed and tested that effectively support HF family caregivers. We provide recommendations to progress the science forward in each of these areas that moves beyond descriptive work to intervention development and clinical trials testing.
全世界有 2300 万心力衰竭（HF）患者，其中许多人每天都得到家庭成员或朋友的无偿支持。尽管 HF 和姑息治疗实践指南规定应为家庭照顾者提供支持，但尚未全面评估指导该人群护理的证据基础。为了评估 HF 家庭护理的现状，并为未来的研究推荐领域，本综述的目的是总结（1）照顾者如何影响患者，（2）HF 对照顾者的后果，以及（3）针对 HF 照顾者的干预措施。我们在 PubMed 和 CINAHL 中使用“心力衰竭”和“照顾者”等搜索词检索了截至 2015 年 12 月的所有文献。纳入标准规定，研究报告 HF 家庭护理的原始研究。排除了仅关注儿童或仪器开发或与其他疾病合并 HF 的文章。我们确定了 120 项研究，代表 5700 名照顾者。该人群的研究表明，（1）照顾情况差异很大，患者需要帮助他们促进健康行为、心理健康和人际关系以及生活质量（QoL）的任务也各不相同；（2）照顾者有许多未满足的需求，这些需求随着患者不可预测的医疗状况而波动，他们感到被正规医疗体系忽视，可能导致痛苦、负担和降低的 QoL；（3）开发和测试的干预措施相对较少，这些干预措施有效地支持 HF 家庭照顾者。我们在这些领域中的每一个领域都提出了建议，以推动科学的发展，超越描述性工作，进入干预措施的开发和临床试验测试。
