Approach to the Perception of the Quality of Life of Children and Adolescents with Non-Syndromic Cleft Lip and Palate: a Phenomenological Study

Abstract

Background: Non-syndromic cleft lip and palate (NSCLP) is a congenital malformation that generates physical, functional and psychosocial complications. The latter are generally identified in quantitative studies. The affectation of the quality of life and the oral health approach of the experiences of people with NSCLP and their families have not been qualitatively documented. Purpose: To identify the perception of quality of life of children and adolescents with NSCLP undergoing comprehensive treatment at the Cleft Lip and Palate clinic of the Javeriana University from Bogotá, Colombia. Methods: It was a qualitative phenomenological study in which eight patients, five parents/guardians, and four professionals from the interdisciplinary care group participated. Semi-structured individual interviews were conducted with each participant and two focus groups, one with guardians/parents and another one with professionals, led by an expert. After transcription, findings were coded and classified according to the categories proposed using the Atlas TI software. Subsequently, a narrative reduction and the corresponding analysis were performed. Results: Participants shared their perspectives on the impact of living with NSCLP and how it impacted their quality of life. Social and psychological dimensions were the most affected. The narrations revealed feelings of sorrow, anguish, and shyness, as well as longings and desires for greater sociability. Conclusion: The reconstruction of the narratives showed how the experience of living with NSCLP generates challenges, situations, and thoughts that affect quality of life, especially from the social and psychological perspectives.