Stronger together: Collective endeavours of a cleft and research organisation to promote the role of young people affected by a cleft in research

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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