Cleft Lip and/or Palate: Children's Experiences of Stigma in Colombia

Abstract

Objective: Given prior craniofacial research reporting higher risk for negative social interactions, this study aimed to explore experiences of stigma described by children with cleft lip and/or palate (CL/P). Design: Qualitative interviews were conducted with children in three sessions (totaling 90–180 min) using creative activities in their homes and/or and walking interviews in their neighborhood. Interview transcriptions were interpreted primarily with thematic analysis following theoretical frameworks of the stigmatization process and self-stigma concept. Setting: Participants were recruited through Operation Smile Colombia. Interviews took place at children's homes and neighborhoods within three Colombian regions (Boyacá, Bogotá and Cundinamarca). Participants: Children (N = 12) with CL/P aged between 6–12 years were interviewed. Results: Themes fit within the stigmatization process, starting with labeling and stereotyping, such as a range of mockery, and group separation by peers highlighting their not belonging and being socially ‘other’. Status loss themes included negative appraisals of cleft-related differences and being perceived as ‘ill’ and ‘imperfect’. Social exclusion themes reflected limited social interactions and loneliness. Self-stigma themes included shame about speaking with peers and anticipation of negative social interactions. Conclusions: The study results suggest that the process of stigmatization and self-stigma adversely affect social interactions for children with a cleft in multiple ways. Healthcare practitioners and policy makers can help address the potential consequences of stigma by implementing interventions at micro, meso and macro levels.