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Support to cancer patients: the new frontier of patient emporwement

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Abstract

Empowerment is a paradigm, i.e. a philosophy or overall approach to cancer care. As established by the European Commission Work Programme 2008, the individual must find him- or herself at the centre of the administrative process and not as a simple object of administration. This concept is also covered by Article 6 of the Treaty on European Union, which sanctions the fundamental importance of the respect of individual human rights and the personal freedom of all EU citizens in their dealings with public institutions. No matter what educational technique is used, empowerment becomes an expression of the health care professional’s underlying philosophy of care. However, health care professionals need a way to operationalize the empowerment paradigm with individual patients. A person-centered approach from counseling psychology to the needs and realities of cancer may be adopted. Some studies showed that most physicians consider important the active role of patients and their involvement in decision-making. However, there are several limitations to a concrete application of the shared decision model (i.e., the relevance of the family system). The matter needs a systematic investigation to better assess both patients needs and physicians attitudes. Specific training in communication and emotion management is needed to allow the model to be applied. Our perspective on empowerment starts from the consideration that patients are empowered when they have all knowledge, skills, attitudes and self-awareness needed to influence their own behavior. Considering this definition in the health care domain implies a number of consequences. First of all, we should be able to measures all these variables, so to evaluate whether a patient is really empowered and eventually the degree of this empowerment, highlighting weaknesses and strengths of the process and the possible drawbacks on health. In this sense, we propose to go beyond the classical psychological approach based on standardized questionnaires (QoL, mood, wellbeing), that should be considered descriptive, to develop a predictive/adaptive approach. Secondly, it is necessary to provide health personnel and patients specific tools aimed at improving empowerment, engagement and the individual wellbeing. To achieve these goals, it will be necessary to analyze the prospect of integrating information and communication technology and psycho-cognitive strategies. This integration is needed to actually improve patients’ engagements. In fact, despite the significant improvements in the quality of health care over the last 20 years, there are still differences in the implementation of protocols designed to guarantee the centrality of the individual undergoing a course of treatment. In order to implement a virtuous empowerment process, cognitive and psychological investigations might be performed at different levels to facilitate patient involvement in key decisions. An empowerment tool will give a patient a straightforward way to specify his/her own decisions. Furthermore, an empowerment tool should allow patients self-managing their data as well as developing self-awareness, in order to support the adoption of a positive and constructive coping strategy. We believe that patient empowerment also need to allow patients to find an adequate personal and emotional support during the treatment course, otherwise patients will most of all be a passive actor of the health care. Consequently, an empowerment tool should provide structured information, for instance by providing graphical exemplifications, decision graphs (e.g. trees) and decision support systems, facilitating an authentic comprehension of decisions to be taken. Also it should sustain relational and emotional wellbeing in order to sustain an adequate self-efficacy. Consequently, developing empowerment tools and supporting cancer patients follows a common pathway.

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