Parents’ Perception of Barriers to the Comprehensive Management of Children With Cleft Lip and Palate in Bogota, Colombia

Autores organización

• 

  Maria Clara González Carrera

  Autor

• Jaime Alberto Ruiz Carrizosa

  Autor

• 

  Ingrid Isabel Mora Diaz

  Autor

• Luis Fernando Restrepo Perez

  Autor

• Zita Carolina Bendahan Alvarez

  Autor

• David Augusto Diaz Baez

  Autor

Autores

• Pereira de Souza D
• Bautista GR

Grupos de investigación

• Investigación en Salud Bucal Pública y Comunitaria INVBOCA

  Investigador

  Luis Fernando Restrepo Perez

• Unidad de Investigación Básica Oral UIBO

  

  Investigador

  Gloria Ines Lafaurie Villamil

• Unidad de Manejo Integral de Malformaciones Craneofaciales UMIMC

  

  Investigador

  Maria Clara González Carrera

Resumen

Object: To identify the perception of barriers to the comprehensive management of cleft lip and palate (CLP) by parents/caregivers of Colombian children with this condition. Setting and Sample Population: Fifty parents/caregivers of children with CLP under 12 years attending a center specialized in the management of craniofacial congenital conditions in Bogota, Colombia. Materials and Methods: This study consisted of 2 phases: a quantitative phase (descriptive cross-sectional) and a qualitative phase (focus group [FG]). Chi-square and Fisher exact tests were used to analyze the association variables. The barriers and alternative ways to overcome barriers were analyzed in the FG. Results: Comprehensive management was mostly defined as access to multiple treatments (54%), and this concept was expanded in the FG toward understanding CLP at all levels. Monoparental families spend their income on treatments (29%) than nuclear families (0%) (P =.001). All parents with high education levels were familiar with healthcare centers specialized in CLP as opposed to 66.7% of parents with basic primary education (P <.05). Regarding the timeliness of appointments, 12.2% of parents earning between 1 and 2 minimum wages reported some kind of difficulty, whereas those earning less than one minimum wage reported difficulties in 66.7% of cases (P =.046). Conclusions: All participants reported barriers, which increased or decreased depending on their socioeconomic status. The FG allowed the discussion of alternatives to overcome barriers, such as structural, solidarity, and self-management actions. © 2022, American Cleft Palate Craniofacial Association.

Keywords

• Child; Cleft Lip; Cleft Palate; Colombia; Cross-Sectional Studies; Humans; Parents; Perception; Article; child; cleft lip; cleft palate; Colombia; controlled study; descriptive research; educational status; family composition; female; Fisher exact test; health care delivery; health care personnel; health care quality; health care system; health center; health insurance; health practitioner; human; human tissue; informed consent; male; maxillofacial surgery; nuclear family; observational study; perception; primary education; quantitative analysis; self care; social status; solidarity; timeliness; work environment; child parent relation; cleft lip; cleft palate; Colombia; cross-sectional study