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“我的日常生活已恢复正常”-姑息治疗日托诊所的患者和家属的体验:一项定性评估研究。

"My everyday life has returned to normal"- Experiences of patients and relatives with a palliative day care clinic: a qualitative evaluation study.

机构信息

Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany.

Clinical Center Aschaffenburg-Alzenau, Alzenau, Germany.

出版信息

BMC Palliat Care. 2023 Mar 17;22(1):26. doi: 10.1186/s12904-023-01140-5.

Abstract

PURPOSE

Palliative day care clinics (PDCCs) complement inpatient and home palliative care and provide access to a range of multi-professional services. However, they are not part of standard care in Germany. Yet, international studies show that PDCCs have a positive impact on e.g. quality of life. To evaluate one of the first PDCCs in Germany (Aschaffenburg-Alzenau (PDCC-AA)) by describing the experiences, satisfaction, challenges, wishes of patients and relatives and possible alternatives to treatment in the PDCC.

METHODS

Qualitative study using semi-structured telephone interviews. Data was analyzed using qualitative structuring content analysis according to Kuckartz with deductive a priori categories and inductive subcategories.

RESULTS

A total of 31 patients and 38 relatives completed telephone interviews. The majority of patients were diagnosed with a cancer or tumor disease. The following four main themes emerged: (1) alternatives to treatment at the PDCC, (2) symptom relief, (3) sense of security, (4) "everyday life framing" (normality of everyday life). Participants valued the medical treatment (especially for pain), psychosocial support given and having direct access to a range of services (e.g., wound care and pleural drainage), while relatives valued being provided respite services. A sense of security, availability of therapies, and devoted time that healthcare providers spent to explain e.g., treatment options were mentioned most positively, as well as confidence in dealing with the illness. As to whether there was an alternative to treatment in the PDCC, some saw further inpatient stays, the emergency room or care by general practitioners as options (although not preferred). Patients expressed concern that they were not treated and informed according to their needs in other care settings.

CONCLUSIONS

PDCCs may close a gap between inpatient and home palliative care. Participants mentioned that hospital stays can be delayed or even prevented.

摘要

目的

姑息治疗日间诊所(PDCC)是住院和家庭姑息治疗的补充,提供了一系列多专业服务的机会。然而,在德国,PDCC 并非标准治疗的一部分。然而,国际研究表明 PDCC 对生活质量等方面有积极影响。通过描述德国第一家 PDCC(阿沙芬堡-阿尔岑瑙(PDCC-AA))的经验、满意度、挑战、患者和家属的愿望,以及 PDCC 中治疗的可能替代方案,来评估该 PDCC。

方法

采用半结构式电话访谈的定性研究。使用 Kuckartz 的定性结构内容分析法,根据先验的演绎类别和归纳的子类别对数据进行分析。

结果

共有 31 名患者和 38 名家属完成了电话访谈。大多数患者被诊断为癌症或肿瘤疾病。主要有以下四个主题:(1)PDCC 的治疗替代方案;(2)症状缓解;(3)安全感;(4)“日常生活框架”(日常生活的常态)。参与者重视 PDCC 提供的医疗治疗(尤其是止痛治疗)、心理社会支持,以及直接获得一系列服务的机会(例如伤口护理和胸腔引流),而家属重视得到的喘息服务。安全感、治疗的可及性以及医疗保健提供者花时间解释治疗选择等方面被评价最高,同时对处理疾病的信心也很高。至于 PDCC 是否有治疗替代方案,一些人认为进一步住院、急诊或全科医生护理是选择方案(尽管不是首选)。患者表示担心在其他护理环境中,他们没有得到根据自己需求进行的治疗和告知。

结论

PDCC 可能弥补住院和家庭姑息治疗之间的差距。参与者提到可以延迟或甚至预防住院治疗。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2664/10022081/f7d5c281eafe/12904_2023_1140_Fig1_HTML.jpg

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