Hayes Bauer Eithne, Ørsted Schultz Anders Nikolai, Brink Anette, Oechsle Jørgensen Lena, Bollig Georg
Medical Research Unit, Institute for Regional Health Research, Hospital of Southern Jutland, University of Southern Denmark, 5000 Odense, Denmark.
Department of Internal Medicine Sønderborg/Tønder, Hospital of Southern Jutland, 6200 Aabenraa, Denmark.
Healthcare (Basel). 2021 Jun 18;9(6):758. doi: 10.3390/healthcare9060758.
Demographical challenges require adaptation and tailoring of services to suit palliative patients' and relatives' needs. Therefore, an interpretive descriptive study was performed to explore patients' and relatives' preferences for the establishment of a day ward and out-of-hours telemedicine. Semi-structured interviews were performed, and data were analysed using thematic analysis. Participants included patients ( = 12) and relatives ( = 5). Three themes emerged: (1) 'Transport burden' relates to transition from home-to-hospital-to-home and acknowledges the strain placed on patients and relatives. (2) 'Role of relatives' contemplates how the role of families in patient care influences patient preferences. (3) 'Telemedicine-preferences and concerns' covers preferences and concerns related to telemedicine in palliative care. The burden of transport and living alone play substantial roles in preferences for place of treatment. Relatives of palliative patients who avail of a day ward and telemedicine may experience an increase in the burden of care. Recognition of concerns pertinent to palliative patients and relatives is an important step in planning new services in palliative care. Concerns may be mitigated by rethinking referral guidelines, incorporating voluntary services, early integration of telemedicine into palliative care and examining patients and relatives' expectations to care, but requires further research.
人口结构方面的挑战要求对服务进行调整和定制，以满足姑息治疗患者及其亲属的需求。因此，开展了一项诠释性描述性研究，以探讨患者及其亲属对设立日间病房和非工作时间远程医疗的偏好。进行了半结构化访谈，并使用主题分析法对数据进行了分析。参与者包括患者（n = 12）和亲属（n = 5）。出现了三个主题：（1）“交通负担”涉及从家到医院再回家的转变，并认识到这给患者和亲属带来的压力。（2）“亲属的角色”思考家庭在患者护理中的角色如何影响患者的偏好。（3）“远程医疗偏好与担忧”涵盖了与姑息治疗中远程医疗相关的偏好和担忧。交通负担和独居在治疗地点的偏好中起着重要作用。利用日间病房和远程医疗的姑息治疗患者的亲属可能会感到护理负担增加。认识到与姑息治疗患者及其亲属相关的担忧是规划姑息治疗新服务的重要一步。通过重新思考转诊指南、纳入志愿服务、将远程医疗尽早纳入姑息治疗以及审视患者及其亲属对护理的期望，可能会减轻这些担忧，但这需要进一步研究。
