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Face Value: Optimising the psychosocial care for individuals with birth defects in Europe by implementing an innovative training method for staff in health care and NGO settings.
Date du début: 1 sept. 2014, Date de fin: 31 août 2016 PROJET  TERMINÉ 

The rational of the project was shaped at the European parliament meeting “The challenges of health inequalities in the treatment and prevention of birth defects in Europe” in Brussels (9/10/2012) since it was identified that the psychosocial aspects for individuals with disfigurement is less than optimal in many instances across Europe. The validity of idea was further strengthening by the approved COST Action IS1210 – Appearance Matters that acknowledges the psychosocial consequences of having a negative body image or disfigurement is a European priority. The lack of adequate psychosocial training in order to provide suitable provision of care to families that is affected by disfigurement and in many cases the unintentional marginalization and socially exclusion that can occur. In many cases the health care professionals lack the capacity to deliver appropriate psychosocial care in combination with not understanding the specific cultural stigma associated with disfigurement. In Bulgaria, by a request from UNICEF, a survey highlighted that 40% of the parents were advised to abandon their child with cleft in an orphanage where they can expect life-long institutionalization, because of the financial and emotional burden. Of 89% of these, the advice was given by a qualified health professional (ECO, 2011). In Bulgaria, Latvia, Turkey and Serbia, the psychosocial care provision is not adequately developed or in some cases non-existing. This is mostly due to that the health staff or members of relevant NGO’s has no training in regards in how to deliver appropriate psychosocial support. By having a consortium of psychosocial experts (UK), pedagogical experts in vocational training in accordance to the European Qualification Framework (NO) together with hospitals that deliver care for disfigurments (RS, TR) and NGO’s (BG, NL) that works directly with individuals with disfigurement and their families as well as providing training to health professionals. The aim is to generate the training course “Face Value” since it is established that health professionals can be taught to provide psychosocial support when given simple training and access to appropriate resources. Evidence indicates that voluntary organizations can have an equally important part to play in the training of qualified health professionals (Clarke, A. & Cooper, C., 2001). The Serbian and Bulgarian partners work extensively with the Roma population, which would further contribute to the specific societal and cultural understanding for this often socially disadvantaged group. The project addresses EU priorities that have been identified in several publications -European Disability Strategy 2010-2020: A Renewed Commitment to a Barrier-Free Europe, 2010; Early Childhood Education and Care: Providing all our children with the best start for the world of tomorrow, 2011; The European Platform against Poverty and Social Exclusion, 2010. This will be accomplished by to develop a training course in modular form that will be piloted on 80 – 120 health professionals in the following partners countries (BG, LV, RS, TR) in order to ensure the effectiveness and cultural adaptation. The final product will be available for free via the projects website. The impact is the following: - A functional training program for health professionals and members of NGO’s. The material will adhere to the European Quality Framework level 3 and the learners will achieve the following a) a range of cognitive and practical skills required to accomplish tasks and solve problems by selecting and applying basic methods, tools, materials and information b) take responsibility for completion of tasks in work or study c) adapt own behaviour to circumstances in solving problems - Increase the staffs' understanding how individuals with disfigurement and their families can experience discrimination and stigmatization, which can result in social exclusion, especially if they are already are a member of a social disadvantaged group such as the Roma population for example. - Quickly have an impact that enhance the psychosocial service provision for the affected individuals/families with disfiguring conditions - Since the training course is short, it become economical viable to implement it as well as facilitate it to more members of health staff or NGO’s. - Between 120 – 160 health professionals and relevant members of NGOs partake in a National Multiplier event in BG, LV, RS and TR. The project will also raise awareness and contribute to a social dialogue about discrimination and social exclusion for individuals/families with disfiguring conditions. This is especially important since a considerable proportion of the discrimination is conducted by health professional due to inadequate training. By highlighting this kind of training and making it easily transferable could result in that this type of discrimination will become less prominent.



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