2014 Conference

Abstract: The Cleft Lip and Palate Association (CLAPA) is a national charity that supports families and individuals affected by a cleft. It has been working closely with the Cleft Collective over the past two years to promote the active involvement of its members in research. The Cleft Collective is the world’s largest cleft lip and palate research programme, with teams based in Bristol and Manchester. One group that has played an on-going role in this developing work is the charity’s Children and Young People’s Council (CYPC).

We are in the process of carrying out a consultation of young people’s views and attitudes in shaping research on cleft. This will involve a focused discussion with members of the CYPC about what has happened so far and ways to improve this process in the future. We will explore what research means to this group, barriers and enablers to involving young people as patient and public involvement (PPI) partners and what these individuals might want to realise personally and more globally from undertaking such a role. We will report on results of this consultation, which we hope will prove useful for fellow delegates at the conference striving to engage young people in a PPI capacity. We anticipate it will raise issues that others have faced or considered when working with this age group in study development, production and dissemination.

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Authors

Cunniffe ~ Claire

Director of Development, Cleft Lip and Palate Association. Claire Cunniffe has worked in the voluntary sector for 12 years and is particularly interested in people engagement and ensuring that people affected by cleft have the opportunity to take on volunteering roles to support and empower others.

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Preston ~ Rosanna

Chief Executive, Cleft Lip and Palate Association (CLAPA). Rosanna Preston has worked in the voluntary sector for over 25 years. Her particular interest is in making sure that the patient voice is represented in CLAPA, Cleft Research and the NHS specialist cleft teams.

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Stock ~ Nicola

Research Fellow, Cleft Lip and Palate Association. Nicola Stock has a primary interest in the psychosocial impact of cleft lip and/or palate. As well as helping to organise the psychological elements of the Cleft Collective Cohort Studies, she is also responsible for patient and public involvement within this work.

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Tierney ~ Stephanie

Stephanie Tierney has worked as a qualitative researcher for nine years at the University of Manchester. She is currently part of the Cleft Collective team based in Manchester and is responsible for promoting patient and public involvement in clinical trials being developed and conducted by this team.

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