Patients with cleft: Experiences, understanding and information provision during treatment

Objective: To explore the knowledge of late adolescent and adults affected with cleft lip and/or palate (CL/P) about their condition and their experiences with information about treatment options and outcomes within the cleft care pathway. Setting and Sample Population: Twenty-eight people with CL/P had recently finished or were about to finish their definitive orthodontic/orthognathic (OGN) treatment. Participants were purposively recruited from two cleft centres in the UK. Materials and Methods: Qualitative, semi-structured interviews were conducted and all interviews were recorded and transcribed verbatim. Thematic analysis was undertaken using the framework method. Result: There are a broad range of interpretations and explanations for both the causes and implications of CL/P amongst those living with the condition. This resulted in confusion and left participants vulnerable to misinformation and unable to combat stigma. In addition, there was some confusion about the implication of different treatment options. Participants felt that they did not receive enough information about the nature of the treatment that they would be undergoing and the length and implications of recovery post-treatment. This was a source of concern for the participants. Conclusion: The findings of this study suggest that there is a mismatch between the information provided to the families of people with CL/P and the levels of knowledge they have, about both their condition and the treatment options available to them. It is essential that clear, accessible information is provided at the right times in the care pathway to ensure that patients are able to make informed decisions about treatment.