Treatment Experiences of the Care pathway for People with Cleft Lip and/or Palate
: Orthodontic Treatment in Context

Student thesis: Doctoral ThesisDoctor of Philosophy


Cleft lip and/or palate (CLP) are common deformities that are known to occur in 1 in every 700 new-born babies. The causes can be genetic and/or environmental. Its management is a complex process which involves many disciplines to ensure the delivery of the best care available.
Objectives: To explore the perspectives of people with CLP about their definitive orthodontic/orthognathic treatment within the context of the cleft care pathway and living with the condition.
Methods: This qualitative study used semi-structured in-depth interviews to explore the experiences of people with CLP who have recently finished orthodontic/orthognathic treatment. The CLP participants were recruited from two centres in the UK. This study used a purposive sampling strategy. All interviews were recorded and transcribed verbatim. Data analysis was conducted using a thematic framework developed through the analysis process.
Results: This study gives an insight into the cleft care pathway from the perspectives of those being treated within it. The first part of the study explores experiences of living with CLP on a daily basis and the impact of the care pathway within this. The results suggest that the care pathway cannot be separated from daily life. The majority of respondents in this study were born into the care pathway due to prenatal diagnosis, and grew up within the pathway. Treatment and the provision of information need to be understood within this context. There is an interrelation between experiences at home, school and work and the impact of, and satisfaction with, treatment received at different stages in the pathway.
The second part of the study focused in more detail on aspects of treatment. The results suggest that treatment choices are shaped by experiences of stigma, low self-esteem and a resulting focus on aesthetics. The definitive orthodontic/orthognathic treatment is seen within this process as the end point of treatment at which time participants would become ‘normal’ and leave the care pathway.
Conclusion: The study provides a new insight into the cleft care pathway from the perspective of those within it and can help to inform future developments, particularly around the provision of information and the need to be aware of the wider context of patients.
Date of Award2016
Original languageEnglish
Awarding Institution
  • King's College London
SupervisorBlanaid Daly (Supervisor), Sasha Scambler (Supervisor) & Fraser McDonald (Supervisor)

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