Exploring the experiences of women who were born with cleft lip and palate: an IPA study

Introduction: Cleft lip and palate (CL/P) is characterised as a birth defect or congenital anomaly which occurs in one in every 500-700 births globally. This research study explores the subjective, phenomenological experiences of eight women with CL/P using Interpretative Phenomenological Analysis (IPA) to determine how women experience and manage living with CL/P and to consider implications for counselling psychology. Quantitative and qualitative studies indicate the overall low psychological impact of being born with CL/P, but also show disparities and contradictions. This author was born with CL/P. Method: Ethical approval was obtained. Semi-structured interviews and open-ended questions were used. Eight women born with CL/P were recruited using purposive sampling. Participant accounts of their lived experiences were recorded and transcribed verbatim. Interviews took 73 to 120 minutes, (mean 90 minutes). Analysis Four themes were identified: ‘The threatened self’ explores the complexity inherent in the development of identity; ‘being different to others’ explores interpersonal experiences of participants; ‘facing challenges’ explores challenges and ‘wishing things had been better’ explores experiences which participants share as a means of acting as advocates for others. Discussion: My research supports existing CL/P literature. ‘Wishing things had been better’ has not been explored previously. I found that meaning-making is important for individuals with CL/P. I consider that it would be beneficial for CL/P to be conceptualised as a long-term condition requiring psychological support, and if adult CL/P should have improved access to support, including psychological, for key life events. I designed a check-list of issues to consider when working with a client with CL/P. This research has demonstrated that women’s experiences of living with CL/P are multi-faceted and demonstrates a duality of experience in which being born with and living with CL/P throughout life may be thought of as both ‘not a problem’ and ‘a problem’ at different stages of life