Empowering Young People with Cleft Through Participatory Research

This research is contributing to real-world change in clinical practice, self-advocacy, and education:

• Influencing Healthcare Delivery: The clinician-focused video will be integrated into training and service development discussions, helping professionals better understand the emotional and social dimensions of cleft care.
• Empowering Young People: The second video provides a relatable and affirming resource for young people with cleft, promoting body confidence and shared identity.
• Therapeutic Participation: Many participants described the research experience itself as therapeutic. Sharing their stories, connecting with others with cleft, and seeing their experiences valued publicly had a positive impact on their self-esteem and wellbeing.
• Building Research Capacity: Participants developed transferable digital and communication skills, contributing to their sense of agency and inclusion in academic research.
• Growing Reach and Global Interest: The project has sparked interest from national and international cleft networks and charities, with invitations for presentations and workshops. A recent collaboration in Sweden has opened discussions about replicating the study across other European countries, highlighting the potential for wider international impact.

This work demonstrates the power of creative, participatory methods to drive meaningful change and amplify voices that are too often overlooked in healthcare research and policy. 

Young people with cleft lip and/or palate often face unique challenges relating to appearance, confidence, and healthcare experiences. Yet their voices are rarely heard in the development of cleft services. Julie Davies, a Professional Doctorate researcher in Health Psychology, is addressing this gap through an innovative participatory action research project that places young people at the centre of the conversation as co-researchers.

Using photovoice, a creative method that combines photography and narrative, young people aged 16–25 were supported to express their lived experiences through images taken on their smartphones. In collaboration with a professional photographer, participants gained new skills in visual storytelling. The research process culminated in the co-creation of two powerful videos: one designed to inform clinicians about the cleft journey from a young person’s perspective, and the other to support and empower other young people with cleft to feel more confident about their appearance.

These videos are now publicly available on YouTube and will be used in clinical and educational settings to raise awareness and foster empathy.

View our research findings in more detail.