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Empowering Parents of Children with Clefts: Speech, Communication and Resilience Support

Funder: European CommissionProject code: 2019-1-NL01-KA202-060281
Funded under: ERASMUS+ | Cooperation for innovation and the exchange of good practices | Strategic Partnerships for vocational education and training Funder Contribution: 266,880 EUR

Empowering Parents of Children with Clefts: Speech, Communication and Resilience Support

Description

A cleft of the lip and/or palate is the most common birth defect. Approximately 900,000 children, adults and their families are affected by this condition across Europe. This project offers an exciting opportunity to develop innovative information and resources for use by health professionals to enable parents to identify signs of impairment and to offer practical ways of supporting their child born with a cleft and experiencing speech and language difficulties and/or psychological challenges associated with their condition. Speech, appearance and psychological adjustment are inextricably linked. Subjective satisfaction with speech and reading skills have also been shown to be associated with self and parent reported psychological adjustment in children with a cleft palate. 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. There have been calls from parents and healthcare professionals to develop authoritative information to support parents in promoting positive adjustment in their children. Looking and/or sounding different does not have to be a barrier to a happy and successful life. Parents are uniquely influential in shaping their child’s experience of being born and treated for a cleft, in the values, attitudes and behaviours their child develops, and in how to interpret social and cultural information. But parents need help to achieve this, particularly if the health care resources available to them are limited. “For patients, ‘innovation’ means not only new treatments, but also new and better ways to organise and deliver care. Empowered patients are partners in improving care quality, from self-management support through shared care planning to service evaluation and (re-)design'' European Patient Forum ‘Putting what matters to patients at the heart of EU Health Policy’ 2019.This project will develop materials to be delivered by health professionals to parents offering practical ways of helping children to improve their speech and language and to build their psychological resilience. Giving parents training and insight leads to positive benefits to their child’s language and speech. Similarly, with appropriate information and skills, for example, parents can be effective in promoting psychological resilience and positive adjustment in children in early and middle childhood. For example, skills in identifying early signs of sub-optimal social or psychological adjustment, educational or social difficulties can alert parents to the need to seek out credible sources of further support, thus improving the chances of optimising later outcomes for their child. The project consortium covers a wide geographical and social dimension: partners come from Bulgaria, Estonia, Italy, Ireland, Malta, Netherlands, Norway, Romania and Serbia . The 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 (BU, EE, IT, MT, RO, RS ) The majority of partners have successfully cooperated in various European strategic partnerships before, delivering projects with outstanding quality and outputs which is reflected in the final assessment rating. Two new partners will have the opportunity to gain new knowledge and skills by working in an experienced partnership.

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