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.

About the project

Lack of adequate psychosocial training to provide suitable provision of care to families that are affected by disfigurement, unintentional marginalization and social exclusion are becoming increasing problems in some European countries. In many cases 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, a survey by UNICEF highlighted that 40% of parents were advised to abandon their child with cleft in an orphanage where they can expect life-long institutionalisation, because of the financial and emotional burden. In 89% of these, the advice was given by a qualified health professional. 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 health staff or members of relevant National Government Organisations having no training in how to deliver appropriate psychosocial support.

Summary

A consortium of experts from across seven European countries are collaborating to develop a training resource for health professionals together with RSBDF (Norway) and ECO (The Netherlands) that aims to optimise the provision of psychosocial support for individuals with visible difference. This will be accomplished by developing a training course in modular form that will be piloted on 80 – 120 health professionals in Bulgaria, Latvia, Serbia and Turkey in order to ensure the effectiveness and cultural adaptation. The final product will be available for free via the projects website. The project will also raise awareness and contribute to a social dialogue about discrimination and social exclusion for individuals/families with disfiguring conditions.

Description

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, as it was identified that the psychosocial aspects for individuals with disfigurement are less than optimal in many instances across Europe. This 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.

A consortium of psychosocial experts (UK), pedagogical experts in vocational training in accordance to the European Qualification Framework (Norway), together with hospitals that deliver care for disfigurements (Serbia, Turkey) and Non Governmental Organisations (NGO’s) (Bulgaria and The Netherlands) will work 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 organisations can have an equally important part to play in the training of qualified health professionals.

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.

A functional training program for health professionals and members of NGO’s will be developed. The material will adhere to the European Quality Framework level 3 and the learners will achieve the a range of cognitive and practical skills required to accomplish tasks and solve problems by selecting and applying basic methods, tools, materials and information. The project aims to increase staff understanding of how individuals with disfigurement and their families can experience discrimination and stigmatisation and to quickly have an impact that enhances the psychosocial service provision for the affected individuals/families with disfiguring conditions. 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.