Nickel Stefan, Haack Marius, von dem Knesebeck Olaf, Dierks Marie-Luise, Seidel Gabriele, Werner Silke, Kofahl Christopher
Institut für Medizinische Soziologie, Universitätsklinikum Hamburg-Eppendorf, Martinistraße 52, 20246, Hamburg, Deutschland.
Institut für Epidemiologie, Sozialmedizin und Gesundheitssystemforschung, Medizinische Hochschule Hannover, Hannover, Deutschland.
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2019 Jan;62(1):10-16. doi: 10.1007/s00103-018-2850-8.
Self-help groups (SHGs) are an inherent part of patient involvement and play an important role in the healthcare system. Until now, however, there has been a lack of systematic investigations and quantitative data about the individual impact of self-help for patients and relatives.
This study presents the results of a comparison between members of SHGs and non-members. Thereby, the effects of self-help shall be described in terms of empowerment and self-management. The study is part of the project "Health-related Collective Self-Help in Germany" (Gesundheitsbezogene Selbsthilfe in Deutschland-SHILD) funded by the Federal Ministry of Health.
The study was conducted with patients from five therapeutic areas (diabetes mellitus type 2, prostate cancer, multiple sclerosis, tinnitus, relatives of dementia patients). Participants administered a multidimensional questionnaire (paper-and-pencil or online). Of the 2870 participants in this analysis, 49% were active members of SHGs.
Statistical analysis showed some significant, but small differences between the two groups in five out of seven scales of the Health Education Impact Questionnaire (heiQ) in favour of the SHG members. Furthermore, SHG members performed better in specific knowledge tests. Members see the importance of their group especially in social inclusion, psychosocial relief, coping with the disease and new insights in dealing with the disease.
With respect to the study design we cannot rule out that differences might be based on personal characteristics influencing the decision to participate in a SHG or not. But as the results are controlled for confounders, the hypothesis that SHG participation has a positive impact on the outcomes rather than vice versa seems supported.
自助团体是患者参与的固有组成部分,在医疗保健系统中发挥着重要作用。然而,到目前为止,缺乏关于自助对患者及其亲属个人影响的系统调查和定量数据。
本研究展示了自助团体成员与非成员之间比较的结果。从而,将从赋权和自我管理方面描述自助的效果。该研究是由联邦卫生部资助的“德国与健康相关的集体自助”(Gesundheitsbezogene Selbsthilfe in Deutschland-SHILD)项目的一部分。
该研究针对来自五个治疗领域(2型糖尿病、前列腺癌、多发性硬化症、耳鸣、痴呆症患者的亲属)的患者进行。参与者填写一份多维问卷(纸质或在线)。在本次分析的2870名参与者中,49%是自助团体的活跃成员。
统计分析表明,在健康教育影响问卷(heiQ)的七个量表中的五个量表上,两组之间存在一些显著但微小的差异,有利于自助团体成员。此外,自助团体成员在特定知识测试中表现更好。成员们认为他们的团体的重要性尤其体现在社会融入、心理社会缓解、应对疾病以及处理疾病方面的新见解上。
就研究设计而言,我们不能排除差异可能基于影响参与自助团体与否的个人特征。但由于结果对混杂因素进行了控制,自助团体参与对结果有积极影响而非相反这一假设似乎得到了支持。