Petruzzo Antonio, Paturzo Marco, Naletto Monica, Cohen Marlene Z, Alvaro Rosaria, Vellone Ercole
1 Department of Biomedicine and Prevention, University of Rome Tor Vergata, Rome, Italy.
2 Department of Surgery, Hospital of Perugia, Perugia, Italy.
Eur J Cardiovasc Nurs. 2017 Oct;16(7):638-645. doi: 10.1177/1474515117707666. Epub 2017 Apr 27.
Heart failure (HF) patients need to follow a strict pharmacological and nonpharmacological regimen in order to counteract the burden of the disease, and informal caregivers are an important resource for HF patients in managing and coping with their disease. Few studies have examined the lived experience of these caregivers with a rigorous phenomenological approach, and none have been conducted in Italy.
To describe the lived experience of the caregivers of HF patients.
A hermeneutic phenomenological method was used. Caregivers were enrolled in a HF clinic in central Italy. Interviews were analysed using a phenomenological approach. Credibility, dependability, confirmability and transferability were adopted in order to strengthen trustworthiness.
Thirty HF caregivers (mean age: 53 years) were enrolled. Of these, 63% of the caregivers were female and 80% were patients' spouses or children. Six themes emerged: (1) fear and worry related to the illness; (2) life changes and restrictions; (3) burden due to caregiving; (4) uncertainty about illness management; (5) helping patients to cope with the illness; and (6) love and affection towards the patient.
The findings of our study may help providers to guide interventions for HF caregivers. Providers should be supportive of caregivers and provide them with education in order to reduce their fears and worries about the illness and to handle the course of HF and its symptoms. An empathetic and practical approach with caregivers that considers the patient-caregiver relationship may help caregivers to cope with the changes and restrictions that caregiving brings to their lives and to reduce their burden.
心力衰竭（HF）患者需要遵循严格的药物和非药物治疗方案以应对疾病负担，非正式照护者是HF患者管理和应对疾病的重要资源。很少有研究采用严谨的现象学方法来探究这些照护者的生活经历，且在意大利尚未开展此类研究。
描述HF患者照护者的生活经历。
采用诠释现象学方法。照护者在意大利中部的一家HF诊所登记入组。访谈采用现象学方法进行分析。为增强可信度，采用了可信度、可靠性、可证实性和可转移性原则。
招募了30名HF照护者（平均年龄：53岁）。其中，63%的照护者为女性，80%是患者的配偶或子女。出现了六个主题：（１）与疾病相关的恐惧和担忧；（２）生活变化与限制；（３）照护负担；（４）疾病管理的不确定性；（５）帮助患者应对疾病；（６）对患者的爱与深情。
我们的研究结果可能有助于医疗服务提供者指导针对HF照护者的干预措施。医疗服务提供者应支持照护者，并为他们提供教育，以减少他们对疾病的恐惧和担忧，应对HF病程及其症状。对照护者采取一种考虑到患者与照护者关系的共情且实用的方法，可能有助于照护者应对照护给他们生活带来的变化和限制，并减轻他们的负担。
