Approximately 900,000 children, adults and their families are affected with cleft lip and palate across Europe. The family environment is key in promoting positive adjustment in a child with a cleft. Parents are considered key agents for change in their child’s development and well-being including communication and speech disorders. Parents want the best for their children and to optimise their child’s chances of successfully dealing with life’s challenges, yet often lack the specialist information and advice to help them in this goal. The provision of care for children with cleft and their families varies markedly across Europe. The ‘gold standard’ of multidisciplinary care is available only to a small minority. Parental need for information and advice about how to identify early warning signs of challenges and address the difficulties, is acute.
The project consortium includes a combination of players in research, health care delivery and training expertise (VET) together with an international NGO meaning that the partnership possesses a variety of high-level and complementary skills. The partnership is built with organisations having extensive national and European level knowledge, networks and experience . The coordinator (NL) is a specialist Europe wide NGO promoting best practice cleft care from the user perspective that has run training programmes in 8 countries for healthcare professionals and user groups. The Norwegian partner (NO) is a specialist in VET and EQVET and also has experts focusing on psychology and resilience. Additionally, there is a highly experienced partner in research and knowledge in speech and communication disorders and therapies (IRL) together with specialist multidisciplinary cleft healthcare providers (BG, EE, IT, MT, RO, RS).