Department of Public and Occupational Health & Expertise Center Palliative Care VUmc, EMGO Institute for Health and Care Research, VU University medical center (VUmc), P,O, Box 7057, 1007, MB Amsterdam, The Netherlands.
BMC Palliat Care. 2014 Mar 31;13(1):16. doi: 10.1186/1472-684X-13-16.
Since many patients spend most of the time at home at the end of life, this may affect the burden for family carers and constitute a risk factor for the patients' hospitalisation. This study aimed to explore family carers' burden in the final three months of the patient's life, from the perspective of both carers and general practitioners (GPs), and to assess whether family burden, as defined by the GP, is associated with hospitalisation.
A cross-sectional nationwide survey among GPs and family carers was performed. Participants were 194 GPs and 74 family carers of patients who died non-suddenly. Additionally, in-depth interviews were conducted with 18 family carers. For the quantitative analyses descriptive statistics, weighted Kappa and multivariate logistic regression analysis was performed. For the qualitative part thematic analysis was conducted.
The proportion of family carers experiencing a fairly heavy or severe burden increased significantly from 32% (second and third months before death) to 66% (one week before death). Most carers (95%) felt an emotional burden and 29% felt a physical burden in the final week. Three-quarters of carers did not perceive their burden as a problem because caring often felt rewarding. No significant association was found between the characteristics of family caregivers or professional care and the degree of family caregiver burden. Also, there was no significant evidence that patients of family carers for whom the GP assessed a fairly heavy to severe burden, were more likely to be hospitalised.
The different overall assessment of family carers' burden between GPs and family carers and the increasing emotional and physical burden of family carers towards the end constitute relevant information for GPs that will help them understand and anticipate carers' personal needs.
由于许多患者在生命的最后阶段大部分时间都在家中度过，这可能会加重家庭照顾者的负担，并成为患者住院的一个风险因素。本研究旨在从照顾者和全科医生（GP）的角度探讨患者生命的最后三个月中照顾者的负担，并评估 GP 定义的家庭负担是否与住院有关。
对 GP 和家庭照顾者进行了一项全国性的横断面调查。参与者包括 194 名 GP 和 74 名非突然死亡患者的家庭照顾者。此外，还对 18 名家庭照顾者进行了深入访谈。对于定量分析，进行了描述性统计、加权 Kappa 和多变量逻辑回归分析。对于定性部分，进行了主题分析。
家庭照顾者负担较重或严重的比例从死亡前两个月的 32%（第二和第三个月）显著增加到死亡前一周的 66%。大多数照顾者（95%）在最后一周感到情绪负担，29%感到身体负担。四分之三的照顾者并不认为他们的负担是一个问题，因为照顾往往是有回报的。家庭照顾者的特征或专业护理与家庭照顾者负担程度之间没有显著关联。此外，没有证据表明 GP 评估为负担较重到严重的家庭照顾者的患者更有可能住院。
GP 和家庭照顾者对家庭照顾者负担的不同总体评估，以及家庭照顾者在临终前情绪和身体负担的增加，为 GP 提供了相关信息，帮助他们了解和预测照顾者的个人需求。
