Breivik Elisabet, Ervik Bente, Kitzmüller Gabriele
Department of Health and Care Sciences, Faculty of Health Sciences, UiT, The Arctic University of Norway, Tromsø, Norway.
Department of Oncology, University Hospital of North Norway, Tromsø, Norway.
BMC Health Serv Res. 2024 Dec 21;24(1):1635. doi: 10.1186/s12913-024-11875-3.
As the population ages, more people will be diagnosed with cancer, and they will live longer due to receiving better treatment and optimized palliative care. Family members will be expected to take on more responsibilities related to providing palliative care at home. Several countries have expressed their vision of making home death an option, but such a vision can be more challenging in rural areas. There is a lack of synthesized research providing an in-depth understanding of rural family caregiving for people with cancer at the end of life. Thus, the purpose of this study was to synthesize and reinterpret the findings from qualitative research on rural family caregivers of adult cancer patients at the end of life.
We conducted a meta-ethnography following Noblit and Hare's approach. A systematic literature search of four databases and extensive manual searches were completed in April 2022. The final sample included twelve studies from six different countries published in 2011-2022.
Based on the translation and synthesis of the included studies, four themes were developed (1) providing family care at the end of life in rural areas-a challenging endeavour; (2) the heavy responsibility of rural caregiving-a lonesome experience; (3) working on and behind the scenes; and (4) the strong and weak spots of community connectedness in rural areas. An overarching metaphor, namely, "ambivalent and heavy burdened wanderers on a road less travelled", provides a deeper understanding of the meaning of rural family caregiving at the end of life.
This study provides valuable insights into end-of-life cancer care for rural families on four continents. It is crucial to prepare family caregivers for the demanding role of palliative caregiving in rural areas. To address the long distances and poor access related to specialized health care services, outpatient palliative teams tailored to the families' individual needs should be provided. In addition, more telehealth services, palliative units, or beds in local nursing facilities may reduce the number of exhausting trips that need to be made by caregivers and patients. Healthcare workers in rural areas need further education in palliative care.
The study was registered in PROSPERO.
随着人口老龄化，越来越多的人将被诊断出患有癌症，并且由于接受了更好的治疗和优化的姑息治疗，他们的寿命会更长。家庭成员将被期望承担更多与在家中提供姑息治疗相关的责任。一些国家已经表达了让在家中离世成为一种选择的愿景，但在农村地区实现这一愿景可能更具挑战性。目前缺乏综合研究来深入了解农村地区临终癌症患者的家庭护理情况。因此，本研究的目的是综合并重新解读关于成年癌症患者临终时农村家庭照顾者的定性研究结果。
我们采用诺布利特和黑尔的方法进行了一项元民族志研究。2022年4月完成了对四个数据库的系统文献检索和广泛的手工检索。最终样本包括2011年至2022年期间在六个不同国家发表的12项研究。
基于纳入研究的翻译和综合，形成了四个主题：（1）农村地区临终时提供家庭护理——一项具有挑战性的努力；（2）农村护理的沉重责任——一种孤独的经历；（3）台前幕后的工作；（4）农村地区社区联系的优势与不足。一个总体隐喻，即“在人迹罕至的道路上矛盾且负担沉重的徘徊者”，能更深入地理解农村临终家庭护理的意义。
本研究为四大洲农村家庭的临终癌症护理提供了有价值的见解。让家庭照顾者为农村地区姑息治疗的艰巨角色做好准备至关重要。为解决与专科医疗服务相关的路途遥远和难以获得服务的问题，应提供根据家庭个体需求量身定制的门诊姑息治疗团队。此外，更多的远程医疗服务、姑息治疗单元或当地护理机构的床位可能会减少照顾者和患者需要进行的疲惫奔波次数。农村地区的医护人员需要接受更多的姑息治疗教育。
该研究已在国际系统评价注册库（PROSPERO）注册。
