The process leading to affirmation of life with cleft lip and cleft palate: The importance of acquiring coherence

Abstract

The objectives of this study were to understand the experiences of people with cleft lip and cleft palate (CLCP) and to describe the processes and factors leading to the acquisition of high self-esteem. Semi-structured interviews were conducted of 19 subjects with CLCP recruited via hospitals and through snowball sampling, and the results were analyzed qualitatively, comparing high and low self-esteem groups. Participants with high self-esteem had gone through the phases of "noticing their difference from others", "knowing about and deepening their understanding of CLCP", "no denial of their life with CLCP" and "affirmation of life with CLCP". Seven factor categories including "received sufficient explanation of CLCP condition (from parents) in the early stage", "have not received negative messages about CLCP" and "feeling the presence of someone who accepts their feelings and supports them" were extracted as factors promoting these processes. Knowing about and understanding CLCP enables individuals to acquire a sense of coherence in their lives, which may be related to gaining a feeling of control over their cleft condition, acquiring a sense of autonomy, and finding a meaning for their lives. Thus, medical professionals should provide explanations that enable patients to understand CLCP, and also facilitate interaction between patients with the same condition.