Aujoulat Isabelle, Marcolongo Renzo, Bonadiman Leopoldo, Deccache Alain
Université Catholique de Louvain, Health and Patient Education Unit RESO, School of Public Health, Avenue Mounier, Bruxelles, Belgium.
Soc Sci Med. 2008 Mar;66(5):1228-39. doi: 10.1016/j.socscimed.2007.11.034. Epub 2007 Dec 21.
Studies that focus on patient empowerment tend to address more specifically two issues of patients' experience of illness: managing regimens and relating to health-care providers. Other aspects of illness experience, such as coming to terms with disrupted identities, tend to be overlooked. The outcome of empowerment is therefore usually referred to as achieving self-efficacy, mastery and control. We conducted an inductive exploratory study, based on individual in-depth interviews with 40 chronically ill patients in Belgium and Italy, in order to understand the process of empowerment as it may occur in patients whose experience of illness has at some point induced a feeling of powerlessness, which we conceptualised as a threat to their senses of security and identity. Our findings show that empowerment and control are not one and the same thing. We describe patient empowerment as a process of personal transformation which occurs through a double process of (i) "holding on" to previous self-representations and roles and learning to control the disease and treatment, so as to differentiate one's self from illness on the one hand, and on the other hand (ii) "letting go", by accepting to relinquish control, so as to integrate illness and illness-driven boundaries as being part of a reconciled self. Whereas the process of separating identities ("holding on") was indeed found to be linked to efforts aimed at taking control and maintaining or regaining a sense of mastery, the process of reconciling identities ("letting go") was found to be linked to a need for coherence, which included a search for meaning and the acceptance that not everything is controllable. We argue that the process of relinquishing control is as central to empowerment as is the process of gaining control. As a "successful" process of empowerment occurs when patients come to terms with their threatened security and identity, not only with their treatment, it may be facilitated by health-care providers through the use of narratives.
管理治疗方案以及与医疗服务提供者的关系。疾病体验的其他方面，比如接受身份的改变，往往被忽视。因此，赋权的结果通常被认为是实现自我效能感、掌控感和控制感。我们进行了一项归纳性探索性研究，基于对比利时和意大利40名慢性病患者的个人深度访谈，以了解赋权过程，这一过程可能发生在那些疾病体验在某个时刻引发了无力感的患者身上，我们将这种无力感概念化为对其安全感和身份认同的威胁。我们的研究结果表明，赋权和控制并非同一回事。我们将患者赋权描述为一个个人转变的过程，它通过以下双重过程发生：一方面，（i）“坚持”以前的自我认知和角色，并学会控制疾病和治疗，从而使自己与疾病区分开来；另一方面，（ii）通过接受放弃控制来“放手”，以便将疾病和疾病导致的界限整合为和解自我的一部分。虽然身份分离的过程（“坚持”）确实与旨在获得控制并维持或重新获得掌控感的努力相关，但身份和解的过程（“放手”）与对连贯性的需求相关，这包括对意义的探寻以及接受并非一切都可控的事实。我们认为，放弃控制的过程与获得控制的过程对于赋权同样重要。当患者不仅接受治疗，还接受其受到威胁的安全感和身份认同时，赋权作为一个“成功”的过程才会发生，医疗服务提供者可以通过使用叙事来促进这一过程。
