Developing an early care training programme for health care professionals working with children born with orofacial clefts and/or craniofacial conditions

In Europe, one in 700 pregnancies is affected by orofacial cleft.  This can result in medical, social and/or psychological disabilities throughout the lifespan for the affected individuals and their families. Estimates indicate there are over 900,000 individuals with a cleft in Europe. 

Individuals born with orofacial cleft occur in every European nation, across every ethnicity and socioeconomic status. It is acknowledged at European level that health professionals do not have enough resources or training to meet the demand. Therefore it is paramount to implement a transnational training project. The partners will work together to develop a culturally adapted European training project that can be utilised even in the partner countries that have limited resources. The ultimate aim Is that affected individuals in different European countries will receive equal access and quality of care, which should be a fundamental European right.

Access to good treatment varies widely throughout Europe, meaning that many children born with clefts are never given the opportunity to achieve their full potential due to their unintentional marginalization in healthcare settings.  An example of this marginalization is that babies with clefts are still institutionalized in some countries in Europe, due to the inadequate knowledge and training of healthcare professionals in this area.

A good quality targetted training can make a difference to this and help ensure equality of access to care throughout our European countries. So the objective is to develop a training package for healthcare professionals that equips them with the knowledge and skills to make an accurate diagnosis, provide specialist early feeding advice and assessment, provide appropriate information and support to the family and establish a structured care pathway in the early months for the children with orofacial cleft. This training will directly adhere to strengthening key competences in VET by developing a high-quality training program that can be delivered In 1-2 Days. At the same time, the training will adhere to the recommendations from the EQF, ECVET and EQAVET. 

The importance of early and effective nursing care has been emphasised by the 2015 report of the European Committee for Standardization (CEN) - TR 16824 - Early Care Services for Babies Born with Cleft Lip and/or Palate which details the first agreed set of European guidelines in early cleft care and was developed with the involvement of 12 European countries. That the resources are less than optimal in many instances across Europe was acknowledged at the European Parliament meeting "The challenges of health inequalities in the treatment and prevention of birth defects in Europe" in Brussels on 9 October 2012 and at the European Committee for Standardization in Brussels on 21 March 2016 'Impact of new guidelines on the early care of babies born with cleft lip and or palate' which raised awareness about the inequalities in health care, and the access to appropriate care across Europe. Furthermore, the European Science Foundation (EuroCleftNet programs) organized the first ever meeting of European nurses working in the field of clefts in Bucharest and it was again identified that there is an urgent demand to train nurses in early cleft care.