van Uden-Kraan C F, Drossaert C H C, Taal E, Seydel E R, van de Laar M A F J
Institute for Behavioural Research, University of Twente, The Netherlands.
Patient Educ Couns. 2009 Jan;74(1):61-9. doi: 10.1016/j.pec.2008.07.044. Epub 2008 Sep 7.
Although much has been expected of the empowering effect of taking part in online patient support groups, there is no direct evidence thus far for the effects of participation on patient empowerment. Hence our exploring to what extent patients feel empowered by their participation in online support groups, and which processes that occur in these groups are related to the empowering outcomes.
An online questionnaire was completed by 528 individuals who were active in online groups for patients with breast cancer, fibromyalgia and arthritis.
The respondents felt empowered in several ways by their participation. The empowering outcomes that were experienced to the strongest degree were 'being better informed' and 'enhanced social well-being'. No significant differences in empowering outcomes between diagnostic groups were found. The empowering outcomes could only be predicted in a modest way by the processes that took place in the online support groups.
This study indicates that participation in online support groups can make a valuable contribution to the empowerment of patients.
Health care providers should acquaint their patients with the existence of online support groups and with the benefits that participation in these groups can offer.
尽管人们对参与在线患者支持小组的赋能效果寄予厚望,但目前尚无直接证据表明参与对患者赋能的影响。因此,我们探讨患者在多大程度上因参与在线支持小组而感到被赋能,以及这些小组中发生的哪些过程与赋能结果相关。
528名活跃于乳腺癌、纤维肌痛和关节炎患者在线小组的个体完成了一份在线问卷。
受访者通过参与在几个方面感到被赋能。感受最强烈的赋能结果是“信息更灵通”和“社会幸福感增强”。在诊断组之间未发现赋能结果的显著差异。在线支持小组中发生的过程只能适度预测赋能结果。
本研究表明,参与在线支持小组可为患者赋能做出宝贵贡献。
医疗保健提供者应让患者了解在线支持小组的存在以及参与这些小组所能带来的益处。