ABSTRACT
OBJECTIVE: To understand the experience of young people with orofacial clefts regarding life as an adolescent. METHODS: Descriptive, qualitative study, developed in a Brazilian public and tertiary hospital, a reference center in the care of patients with craniofacial anomalies and related syndromes, between February and April 2019. The sample was defined by theoretical saturation. The following inclusion criteria were established: age between ten and 19 years old and having previously operated on orofacial cleft (lip and/or palate). Individuals with fissure associated with syndromes or other malformations were excluded. Data collection was performed through semi-structured interviews, which were audio recorded and transcribed in full. The trigger element was: how has it been for you to experience your adolescence? For the construction of the results, content analysis was used in the thematic modality. RESULTS: Seventeen adolescents participated. From the speeches, three categories were revealed: interacting socially, feeling supported, and experiencing and facing prejudice. CONCLUSIONS: The biopsychosocial and conflicting complexity that adolescents with orofacial clefts experience was noticed, as well as the importance of receiving support and establishing modalities of situational coping.
Subject(s)
Cleft Lip , Cleft Palate , Qualitative Research , Humans , Cleft Palate/psychology , Cleft Lip/psychology , Adolescent , Female , Male , Child , Young Adult , Adaptation, Psychological , Brazil , Interviews as TopicABSTRACT
ABSTRACT Objective: To understand the experience of young people with orofacial clefts regarding life as an adolescent. Methods: Descriptive, qualitative study, developed in a Brazilian public and tertiary hospital, a reference center in the care of patients with craniofacial anomalies and related syndromes, between February and April 2019. The sample was defined by theoretical saturation. The following inclusion criteria were established: age between ten and 19 years old and having previously operated on orofacial cleft (lip and/or palate). Individuals with fissure associated with syndromes or other malformations were excluded. Data collection was performed through semi-structured interviews, which were audio recorded and transcribed in full. The trigger element was: how has it been for you to experience your adolescence? For the construction of the results, content analysis was used in the thematic modality. Results: Seventeen adolescents participated. From the speeches, three categories were revealed: interacting socially, feeling supported, and experiencing and facing prejudice. Conclusions: The biopsychosocial and conflicting complexity that adolescents with orofacial clefts experience was noticed, as well as the importance of receiving support and establishing modalities of situational coping.
RESUMO Objetivo: Compreender a experiência de jovens com fissura orofacial quanto à vivência da adolescência. Métodos: Estudo descritivo, qualitativo, desenvolvido em um hospital público e terciário brasileiro, referência no atendimento de pacientes com anomalias craniofaciais e síndromes relacionadas, entre fevereiro e abril de 2019. A amostra foi definida por saturação teórica. Estabeleceram-se como critérios de inclusão: idade compreendida entre dez e 19 anos completos e apresentação de fissura orofacial (lábio e/ou palato) previamente operada. Excluíram-se aqueles que apresentavam a fissura associada a síndromes ou outras malformações. A coleta de dados foi realizada por meio de entrevista semiestruturada, que foi gravada em áudio e transcrita na íntegra. O elemento disparador foi: como tem sido para você vivenciar sua adolescência? Para a construção dos resultados, utilizou-se a análise de conteúdo na modalidade temática. Resultados: Participaram 17 adolescentes. Com base nos discursos, desvelaram-se três categorias: interagindo socialmente; sentindo-se apoiado; e vivenciando e enfrentando o preconceito. Conclusões: Percebeu-se a complexidade biopsicossocial e conflituosa que adolescentes com fissura de orofacial vivenciam, assim como a importância de eles receberem apoio e de se estabelecerem modalidades de enfrentamento situacional.
ABSTRACT
RESUMO: Objetivo: Mapear os fatores associados à adesão ao aleitamento materno em lactentes com fissura orofacial. Método: Revisão de escopo conforme recomendações do Instituto Joanna Briggs, com busca realizada em março de 2023, nas bases de dados PubMed, CINAHL, Web of Science, SCOPUS, EMBASE, LILACS, ProQuest e BDTD. Resultados: Foram selecionados 31 documentos. Fatores associados a adesão ao aleitamento materno incluíram: complexidade anatômica da fissura, orientação/treinamento pré e pós-natal, desejo de amamentar, experiência prévia, conhecimento dos benefícios da amamentação, uso de obturadores palatinos, uso de sonda alimentadora, apoio social, familiar e profissional, ordenha e oferta por utensílios e realização precoce da queiloplastia. Conclusão: Embora a complexidade da fissura consista em um fator não modificável precocemente, as demais variáveis que influenciam à adesão ao aleitamento materno são passíveis de intervenções. Assim, o apoio de todos os envolvidos no processo de amamentação é fundamental para sua otimização.
ABSTRACT Objective: To map the factors associated with breastfeeding adherence in infants with orofacial clefts. Method: Scoping review according to the recommendations of the Joanna Briggs Institute, with a search carried out in March 2023 in the PubMed, CINAHL, Web of Science, SCOPUS, EMBASE, LILACS, ProQuest and BDTD databases. Results: A total of 31 documents were selected. Factors associated with adherence to breastfeeding included: anatomical complexity of the cleft, preand post-natal guidance/training, desire to breastfeed, previous experience, knowledge of the benefits of breastfeeding, use of palatal obturators, use of feeding tube, social, family, and professional support, milking and offering by utensils and early performance of cheiloplasty. Conclusion: Although the complexity of the cleft is a factor that cannot be changed early on, the other variables that influence adherence to breastfeeding can be intervened upon. Thus, the support of all those involved in the breastfeeding process is fundamental for its optimization.
RESUMEN: Objetivo: Mapear los factores asociados a la adherencia a la lactancia materna en lactantes con fisuras orofaciales. Método: Revisión de alcance según recomendaciones del Instituto Joanna Briggs, la búsqueda se realizó en marzo de 2023, en las bases de datos PubMed, CINAHL, Web of Science, SCOPUS, EMBASE, LILACS, ProQuest y BDTD. Resultados: Se seleccionaron 31 documentos. Los factores asociados a la adherencia a la lactancia materna incluyeron: complejidad anatómica de la fisura, orientación/capacitación prenatal y posnatal, deseo de amamantar, experiencia previa, conocimiento sobre los beneficios de la lactancia materna, uso de obturadores palatinos, uso de sonda de alimentación, apoyo social, familiar y profesional, extracción de leche y administración mediante utensilios y queiloplastía temprana. Conclusión: Si bien la complejidad de la fisura es un factor que no puede modificarse tempranamente, las demás variables que influyen en la adherencia a la lactancia materna son pasibles de intervención. Por lo tanto, el apoyo de todos los implicados en el proceso de lactancia materna es fundamental para su optimización.