满足波斯尼亚和黑塞哥维那绝症患者的需求：患者的看法和期望。
Addressing the needs of terminally-ill patients in Bosnia-Herzegovina: patients' perceptions and expectations.
机构信息
Division of Tropical and Humanitarian Medicine, Geneva University Hospitals, Rue Gabrielle-Perret-Gentil 6, 1205, Geneva, Switzerland.
Primary Health Care Center, Dom zdravja Doboj, Nemanjina 18, 74000, Doboj, Bosnia and Herzegovina.
出版信息
BMC Palliat Care. 2018 Nov 19;17(1):123. doi: 10.1186/s12904-018-0377-2.
BACKGROUND
Many terminally ill patients in Bosnia-Herzegovina (BiH) fail to receive needed medical attention and social support. In 2016 a primary healthcare centreer (PHCC) in Doboj (BiH) requested the methodological and technical support of a local partner (Fondacija fami) and the Geneva University Hospitals to address the needs of terminally ill patients living at home. In order to design acceptable, affordable and sustainable solutions, we involved patients and their families in exploring needs, barriers and available resources.
METHODS
We conducted interviews with 62 purposely selected patients using a semi-structured interview guide designed to elicit patients' experiences, needs and expectations. Both qualitative and quantitative analyses were conducted, using an inductive thematic approach.
RESULTS
While patients were aware that their illnesses were incurable, they were poorly informed about medical and social support resources available to them. Family members appeared to be patients' main source of support, and often suffered from exhaustion and financial strain. Patients expressed feelings of helplessness and lack of control over their health. They wanted more support from health professionals for pain and other symptom management, as well as for anxiety and depression. Patients who were bedridden or with reduced mobility expressed strong feelings of loneliness, social exclusion, and stigma from community members and - occasionally - from health workers.
CONCLUSIONS
Our findings suggest a wide gap between patients' end-of-life care needs and existing services. In order to address the medical, psychological and social needs of terminally ill patients, a multi-pronged approach is called for, including not only better symptom management through training of health professionals and improved access to medication and equipment, but also a coordinated inter-professional, inter-institutional and multi-stakeholder effort aimed at offering comprehensive medical, psycho-social, educational and spiritual support.
背景
波斯尼亚和黑塞哥维那（波黑）的许多绝症患者无法获得所需的医疗关注和社会支持。2016 年，多博伊的一家初级保健中心（PHCC）请求当地合作伙伴（Fondacija fami）和日内瓦大学附属医院提供方法学和技术支持，以满足在家中生活的绝症患者的需求。为了设计可接受、负担得起和可持续的解决方案，我们让患者及其家属参与探索需求、障碍和可用资源。
方法
我们使用半结构化访谈指南对 62 名有目的地选择的患者进行了访谈，该指南旨在引出患者的经验、需求和期望。使用归纳主题方法进行了定性和定量分析。
结果
尽管患者知道自己的疾病无法治愈，但他们对可获得的医疗和社会支持资源知之甚少。家庭成员似乎是患者的主要支持来源，他们经常感到疲惫不堪和经济拮据。患者感到无助，对自己的健康失去控制。他们希望得到更多来自卫生专业人员的支持，以管理疼痛和其他症状，以及焦虑和抑郁。卧床不起或行动不便的患者表达了强烈的孤独感、社会排斥感和来自社区成员的耻辱感，有时还来自卫生工作者。
结论
我们的研究结果表明，患者临终关怀需求与现有服务之间存在很大差距。为了满足绝症患者的医疗、心理和社会需求，需要采取多管齐下的方法，不仅要通过培训卫生专业人员来更好地管理症状，改善药物和设备的获取，还要协调跨专业、跨机构和多利益攸关方的努力，提供全面的医疗、心理社会、教育和精神支持。
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