Adolescents with orofacial clefts: understanding their experiences.

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.

Prenatal diagnosis of orofacial clefts: unveiling the parents' experience.

OBJECTIVE: To understand the experience of parents regarding prenatal diagnosis of orofacial cleft in their children. METHODS: Descriptive study with a qualitative approach, carried out in a Brazilian public tertiary hospital between January and March 2019. Parents who were accompanying their children during hospitalization for primary surgeries and who had received the diagnosis of malformation during pregnancy were included in this study. Data was collected through semi-structured interviews, which were audio-recorded and transcribed in full. To prepare the results, Content Analysis was used in the Thematic modality. RESULTS: The sample had 17 participants: 16 mothers and one father. From the speeches, three categories were unveiled: dealing with the unknown, assimilating the diagnosis, and positive and negative implications of prenatal diagnosis. CONCLUSIONS: We learned how complex and conflicting it was for parents to receive the diagnosis of malformation in their children, and that family and professional support was essential to the process of assimilation and coping. The findings point to the need for planning and implementing interventions, protocols and/or public policies aimed at assisting these parents in this period.

Prenatal diagnosis of orofacial clefts: unveiling the parents' experience / Diagnóstico pré-natal das fissuras orofaciais: desvelando a experiência dos pais

ABSTRACT Objective: To understand the experience of parents regarding prenatal diagnosis of orofacial cleft in their children. Methods: Descriptive study with a qualitative approach, carried out in a Brazilian public tertiary hospital between January and March 2019. Parents who were accompanying their children during hospitalization for primary surgeries and who had received the diagnosis of malformation during pregnancy were included in this study. Data was collected through semi-structured interviews, which were audio-recorded and transcribed in full. To prepare the results, Content Analysis was used in the Thematic modality. Results: The sample had 17 participants: 16 mothers and one father. From the speeches, three categories were unveiled: dealing with the unknown, assimilating the diagnosis, and positive and negative implications of prenatal diagnosis. Conclusions: We learned how complex and conflicting it was for parents to receive the diagnosis of malformation in their children, and that family and professional support was essential to the process of assimilation and coping. The findings point to the need for planning and implementing interventions, protocols and/or public policies aimed at assisting these parents in this period.

RESUMO Objetivo: Compreender a experiência de pais quanto ao diagnóstico pré-natal da fissura orofacial em seu filho. Métodos: Estudo descritivo, de abordagem qualitativa, realizado em hospital público e terciário brasileiro, entre janeiro e março de 2019. Foram incluídos pais que acompanhavam os filhos durante a internação para realização de cirurgias primárias, e que haviam recebido o diagnóstico da malformação durante o período gestacional. A coleta de dados foi realizada por meio de entrevista semiestruturada, que foi gravada e transcrita na íntegra. Para confecção dos resultados utilizou-se a Análise de Conteúdo na modalidade temática. Resultados: A amostra constou de 17 participantes, dos quais 16 mães e um pai. Com base nos discursos, desvelaram-se três categorias: lidando com o desconhecido; assimilando o diagnóstico; e implicações positivas e negativas do diagnóstico no pré-natal. Conclusões: Apreendeu-se quão complexo e conflitante foi para os pais receber o diagnóstico da malformação em seu filho, e o apoio familiar e profissional estabeleceu-se como indispensável ao processo de assimilação e enfrentamento. Os achados apontaram a necessidade de planejar e implementar intervenções, protocolos e/ou políticas públicas, para assistir esses pais nesse período.