Institute of Clinical Epidemiology and Biometry, University of Würzburg, Josef-Schneider-Str. 2/ D7, 97080, Würzburg, Germany.
Department of Applied Health Sciences, University of Applied Sciences, Bochum, Germany.
BMC Geriatr. 2022 Mar 19;22(1):228. doi: 10.1186/s12877-022-02919-6.
Long-term support of stroke patients living at home is often delivered by family caregivers (FC). We identified characteristics of stroke patients being associated with receiving care by a FC 3-months (3 M) after stroke, assessed positive and negative experiences and individual burden of FC caring for stroke patients and determined factors associated with caregiving experiences and burden of FC 3 M after stroke.
Data were collected within TRANSIT-Stroke, a regional telemedical stroke-network comprising 12 hospitals in Germany. Patients with stroke/TIA providing informed consent were followed up 3 M after the index event. The postal patient-questionnaire was accompanied by an anonymous questionnaire for FC comprising information on positive and negative experiences of FC as well as on burden of caregiving operationalized by the Caregiver Reaction Assessment and a self-rated burden-scale, respectively. Multivariable logistic and linear regression analyses were performed.
Between 01/2016 and 06/2019, 3532 patients provided baseline and 3 M-follow-up- data and 1044 FC responded to questionnaires regarding positive and negative caregiving experiences and caregiving burden. 74.4% of FC were older than 55 years, 70.1% were women and 67.5% were spouses. Older age, diabetes and lower Barthel-Index in patients were significantly associated with a higher probability of receiving care by a FC at 3 M. Positive experiences of FC comprised the importance (81.5%) and the privilege (70.0%) of caring for their relative; negative experiences of FC included financial difficulties associated with caregiving (20.4%). Median overall self-rated burden was 30 (IQR: 0-50; range 0-100). Older age of stroke patients was associated with a lower caregiver burden, whereas younger age of FC led to higher burden. More than half of the stroke patients in whom a FC questionnaire was completed did self-report that they are not being cared by a FC. This stroke patient group tended to be younger, more often male with less severe stroke and less comorbidities who lived more often with a partner.
The majority of caregivers wanted to care for their relatives but experienced burden at the same time. Elderly patients, patients with a lower Barthel Index at discharge and diabetes are at higher risk of needing care by a family caregiver.
The study was registered at "German Clinical Trial Register": DRKS00011696. https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00011696.
长期在家中照顾中风患者的通常是家庭护理员（FC）。我们确定了中风患者在中风后 3 个月（3M）时接受护理的特征，评估了 FC 照顾中风患者的积极和消极体验以及个人负担，并确定了与 3M 后 FC 照顾体验和负担相关的因素。
数据来自德国一个区域远程医疗中风网络 TRANSIT-Stroke，该网络包括 12 家医院。中风/TIA 患者提供知情同意后，在指数事件后 3M 进行随访。邮寄给患者的问卷附有一份匿名的 FC 问卷，该问卷包含了 FC 积极和消极的照顾体验以及照顾负担的信息，分别通过照顾者反应评估和自我评估负担量表进行量化。进行了多变量逻辑回归和线性回归分析。
2016 年 1 月至 2019 年 6 月期间，3532 名患者提供了基线和 3M 随访数据，1044 名 FC 回答了关于积极和消极的照顾体验和照顾负担的问卷。74.4%的 FC 年龄大于 55 岁，70.1%为女性，67.5%为配偶。患者年龄较大、患有糖尿病和较低的 Barthel 指数与 3M 时更有可能接受 FC 照顾显著相关。FC 的积极体验包括照顾亲人的重要性（81.5%）和特权（70.0%）；照顾带来的经济困难是 FC 的消极体验之一（20.4%）。中风患者的中位整体自我评估负担为 30（IQR：0-50；范围 0-100）。中风患者年龄较大与照顾者负担较低相关，而 FC 年龄较小则与更高的负担相关。完成 FC 问卷的中风患者中，超过一半的人自我报告说他们没有被 FC 照顾。这群中风患者往往更年轻，更多为男性，中风程度较轻，合并症较少，且更多与伴侣同住。
大多数照顾者都想照顾他们的亲人，但同时也感到负担沉重。年龄较大的患者、出院时 Barthel 指数较低和患有糖尿病的患者更有可能需要家庭护理员的照顾。
该研究在“德国临床试验注册处”注册：DRKS00011696。https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00011696。
