No description available.

A brief overview of adolescents and young adults with CLP and their multidisciplinary needs will be presented and a service delivery model for transition of care described (Vallino & Louw, 2017). The key components of the clinical toolbox to be discussed are: 1) communication strategies and styles with adolescents and young adults, 2) practical strategies for preparing and supporting the adolescent, young adult, and their families for the transition of care, 3) tips for developing self-management of health through health education and health promotion, 4) assessments and protocols as outcome indicators incorporating the domains of the ICF with an emphasis on self-report to gain a holistic perspective of function and QOL, and 5) outcome indicators of transition of care for individuals with CLP.

Background and purpose: For many young adults with cleft lip and palate (CLP), traditional team services come to an abrupt end at age 18, necessitating a transition from child-centered to adult-centered care. There is a shift in focus from the cleft itself and clinician reported outcomes to patient self-report about the perceived impact of the cleft. Transition also befalls the parents and team providers. We propose an evidence-based person-centered delivery model of care using the concepts of the International Classification of Functioning, Disability, and Health (ICF) (WHO, 2001, 2004). The ICF represents a shift from health condition and body impairment-centered descriptions of disability to a more comprehensive documentation, including a wider range of functionality indicators. This model of Transition of Care is proposed to facilitate a positive shift from pediatric to adult-centered care. It is timely for teams to embrace the concept of transition of care, and to provide services that recognize the importance of personal and environmental factors in facilitating holistic transition planning and service delivery (ICF, WHO, 2001), which are developmentally appropriate to young adults with CLP (Farre & McDonagh, 2017; Farre et al., 2016).The purpose of this proposed evidence based model is to provide a framework for redesigning the way services are delivered to a young adult with CLP. The concepts of this model are relevant to all specialists on the cleft palate team. The aim of this presentation is to create an awareness of young adults with CL/P who are generally a neglected population in terms of team care and to suggest a new and fresh approach to service delivery to these individuals with the emphasis on clinical resources.Content: A brief overview of adolescents and young adults with CLP and their multidisciplinary needs will be presented. A framework for a holistic service delivery model developed by Vallino and Louw (2017) will be presented. We will suggest strategies for teams to improve the care for young adults with CLP and share a clinical toolbox comprised of a compendium of resources.Conclusion: The proposed Service Delivery Model for young adults with CLP necessitates a change in perspective that embraces constructs such as person-centered care in order to ensure the best outcomes for these individuals. These concepts can be applied by all cleft palate team members. Adopting a life span perspective reinforces the understanding that living with and managing CLP is dynamic and that transition is a process rather than a point in a person's life.

Children with cleft lip/palate receive team care which typically ends at eighteen. Young adults then need to transition into an adult centered model of care. A paucity of literature exists regarding their perspective on transition of care experience. This research explores the experiences young adults with CLP regarding their transition of care process, within the person centered ICF framework.

No description available.

No description available.

Mémoire numérisé par la Division de la gestion de documents et des archives de l'Université de Montréal.

O objetivo do presente estudo foi avaliar subjetivamente a estética do perfil facial de 30 pacientes adultos leucodermos, com fissura transforame incisivo unilateral, não sindrômicos, de ambos os gêneros, com idades entre 17 anos e 3 meses e 30 anos e 9 meses, e média de 23 anos e 3 meses, reabilitados no Hospital de Reabilitação de Anomalias Craniofaciais (HRAC–USP). Foram obtidas 60 fotografias faciais da amostra selecionada, 30 do perfil direito e 30 do perfil esquerdo. Essas fotografias foram avaliadas subjetivamente por 25 examinadores divididos em 5 categorias de acordo com sua área de atuação profissional: 5 ortodontistas e 5 cirurgiões plásticos atuantes na reabilitação de fissuras no HRAC, 5 ortodontistas e 5 cirurgiões plásticos inexperientes na área de fissuras e 5 leigos com formação superior. Por meio de notas que variavam de 1 a 9, os perfis faciais foram classificados em 3 categorias, esteticamente desagradável (notas de 1 a 3), esteticamente aceitável (notas de 4 a 6) e esteticamente agradável (notas de 7 a 9). Os resultados mostraram que os perfis faciais dos pacientes foram classificados em esteticamente aceitáveis, com variações entre as categorias de examinadores. Os profissionais do HRAC, por conhecerem as limitações que o processo de reabilitação impõe aos indivíduos com fissuras, foram os mais condescendentes no julgamento estético. / The aim of this study was to evaluate esthetically the facial profile of 30 adult Caucasian unilateral cleft lip and palate (CLP)patients, without syndromes, of both genders, with ages ranging from 17 years 3 months to 30 years 9 months (mean age = 23 years 3 months), rehabilitated at the Hospital for Rehabilitation of Craniofacial Anomalies (HRAC–USP). Sixty profile photographs of the selected sample were taken, 30 of the right profile and 30 of the profile. These photographs were subjectively evaluated by 25 examiners divided into 5 categories according to their professional activity: 5 orthodontists and 5 plastic surgeons dealing with CLP, 5 orthodontists and 5 plastic surgeons without experience in the CLP field and 5 laymen by means of scores that ranged from 1 to 9, the facial profiles were classified into 3 categories: esthetically unpleasant (scores 1 to 3) esthetically acceptable (scores 4 to 6) and esthetically pleasant (scores 7 to 9). The findings showed that the patient’s facial profiles were classified as esthetically acceptable, with variations among the categories of examiners. The examiners of the HRAC gave the best scores in the esthetic judgement due to their Knowledge of limitations related to the rehabilitation process.

Objetivo: Investigar junto aos adolescentes e jovens adultos com fissura labiopalatina (FLP) transforame que foram submetidos a cirurgias e internações no HRAC/USP e participaram de atividades expressivas e recreativas durante os períodos de hospitalização, a contribuição dessas atividades na sua vida familiar, social, afetiva, escolar e ocupacional. Material e Método: A amostra foi composta por 53 pessoas em tratamento, com FLP transforame incisiva unilateral ou bilateral, sem outros comprometimentos, com idades entre 14 e 23 anos, residentes na Região Sudeste do Brasil e submetidos a três ou mais cirurgias no Hospital, sendo a última no período de 2005 a 2009. Foi aplicado um roteiro de entrevista especialmente elaborado pela pesquisadora, contemplando dados de identificação levantados nos prontuários clínicos, perguntas abertas e outras oferecendo alternativas, abordando as atividades expressivas e recreativas oferecidas aos pacientes durante suas hospitalizações. As entrevistas foram transcritas e as respostas tabuladas e submetidas à análise de conteúdo, sendo os dados analisados quantitativa e qualitativamente. Resultados: Os entrevistados eram em sua maioria homens (69,81%), apresentavam fissura transforame incisiva unilateral (66,04%), tinham idades de 20 a 23 anos (45,28%), procediam do estado de São Paulo (73,58%), pertenciam ao estrato socioeconômico baixo superior (73,58%), moravam com a família (86,79%), tinham Ensino Médio incompleto ou completo (67, 93%), 62,26% continuavam estudando e 64,15% exerciam alguma atividade profissional. A maioria (73,58%) referiu praticar esportes e apenas um entrevistado informou não ter religião e não realizar atividades de lazer. Quase todos os entrevistados (98,11%) iniciaram o tratamento no HRAC/USP antes dos 12 meses de idade e foram submetidos a 10 cirurgias em média e, 79,25% ficaram internados cinco vezes ou mais. Jogos e dinâmicas de grupo foram as atividades mais lembradas por 69,81% e 49,06% dos entrevistados e, também, as mais marcantes, para 22,64% e 20,75%. Quanto à convivência, os entrevistados em geral consideraram ótima ou boa: familiar (69,81%, 18,87%); com colegas da escola (61,76%, 29,41%) e com os professores (44,12%, 44,12%). Os que trabalhavam também consideraram a convivência ótima ou boa: com colegas de trabalho (52,94%, 41,18%) e com os superiores (44,12%, 47,06%). Também avaliaram como ótima ou boa: a convivência com colegas e conhecidos (56,60%, 35,85%), a vida profissional (41,18%, 50,00%), a vida social (45,28%, 43,40%), a convivência com o sexo oposto (45,28%, 35,85%) e, finalmente, o estágio de reabilitação (71,70%, 24,53%). A maioria dos entrevistados (94,33%) considerou que as atividades contribuíram em suas vidas, 60,38% relacionando ao crescimento pessoal e 32,08% ao relacionamento interpessoal. De acordo com as respostas as contribuições ocorreram principalmente no âmbito social (66,04%), auxiliando no enfrentamento do preconceito, melhora da autoimagem e da autoestima. Conclusão: Os resultados permitiram verificar que as atividades expressivas e recreativas desenvolvidas durante as internações no HRAC/USP contribuíram para a vida dos entrevistados, favorecendo o crescimento pessoal e os relacionamentos interpessoais. / Objective: To investigate the contribution of expression and recreation activities during hospitalization periods for the family, social, affective, school and occupational life among adolescents and young adults with complete cleft lip and palate (CLP) submitted to surgeries and hospitalizations at HRAC/USP. Material and Method: The sample was composed of 53 untreated individuals with complete unilateral or bilateral cleft lip and palate, without other disorders, aged 14 to 23 years, living in the Southeast region of Brazil and submitted to three or more surgeries at the Hospital, being the latter in the period from 2005 to 2009. An interview was especially designed and applied by the examiner, addressing demographic data obtained from the records, open and multiple choice questions, addressing the expression and recreation activities offered to the patients during hospitalization. The interviews were transcribed and the responses were plotted and analyzed as to their content, with quantitative and qualitative analysis of data. Results: Most interviewees were males (69.81%), with complete unilateral cleft lip and palate (66.04%), aged 20 to 23 years (45.28%), from the State of São Paulo (73.58%), of upper low socioeconomic level (73.58%), lived with their families (86,79%), had incomplete or complete high school (67.93%), 62.26% were still studying and 64.15% had some professional activity. Most individuals (73.58%) referred sports practice and only one individual stated to have no religion and no leisure activities. Nearly all interviewees (98.11%) initiated the treatment at HRAC/USP before the age of 12 months, were submitted to 10 surgeries in the average, and 79.25% were hospitalized five times or more. Games and group dynamics were the activities most remembered by 69.81% and 49.06% of interviewees, and also the most outstanding for 22.64% and 20.75%. Concerning the friendship, the interviewees in general considered as excellent or good: familiar (69.81%, 18.87%); with school mates (61.76%, 29.41%) and with professors (44.12%, 44.12%). Those who worked also considered the friendship excellent or good: with work colleagues (52.94%, 41.18%) and with bosses (44.12%, 47.06%). They also rated as excellent or good: the friendship with colleagues and acquaintances (56.60%, 35.85%), professional life (41.18%, 50.00%), social life (45.28%, 43.40%), friendships with the opposite gender (45.28%, 35.85%) and finally the rehabilitation stage (71.70%, 24.53%). Most interviewees (94.33%) considered that the activities contributed to their lives, 60.38% for personal growth and 32.08% for interpersonal relationships. According to the responses, the contributions occurred mainly in the social scope (66.04%), aiding the coping of prejudice, enhancing the self-image and self-esteem. Conclusion: The results evidenced that expression and recreational activities developed during hospitalizations at HRAC/USP contributed to the lives of interviewees, favoring their personal growth and interpersonal relationships.

Objetivos: Investigar o percentual de pessoas com fissura labiopalatina inseridas ou não no mercado de trabalho e identificar as dificuldades vivenciadas nesse processo. Método: Estudo descritivo em 519 indivíduos com idade entre 18 e 35 anos com fissura de lábio e/ou palato, das diferentes regiões do Brasil, em tratamento no Hospital de Reabilitação de Anomalias Craniofaciais da Universidade de São Paulo (HRAC/USP). O método baseou-se em abordagem quanti-qualitativa, utilizando como instrumento para a coleta de dados um formulário de entrevista com 30 questões divididas em domínios. O cálculo formal da amostra foi feito a partir de um universo de 9.109 indivíduos que se enquadravam nos critérios definidos para o presente trabalho, com uma margem de erro global de 4,2% e nível de confiança de 95%, chegando-se a uma amostra de 514 indivíduos a serem analisados que, ao final da pesquisa, totalizou 519 participantes. Os domínios levantados foram: perfil sócio-demográfico; situação profissional atual; experiências profissionais anteriores; conhecimento e acesso de direitos; dificuldades e facilidades para inserção social e mercado de trabalho. Resultados: Dados quantitativos aferidos a partir das respostas colhidas em cada um dos domínios do formulário de entrevista mostraram que um percentual significativo de indivíduos estudados não está sendo contemplado com a reserva de cotas no mercado de trabalho (89,4%) e nunca foi anteriormente (98,0%); tem o ensino médio completo (51,3%); pertence à classe social baixa superior (65,3%); não tem conhecimento e acesso às leis que beneficiam as pessoas com deficiência (56,1%); não usufrui de qualquer um destes benefícios legais (86,5%), nem usufruiu (90,8%); sente necessidade da aplicação das leis que assegurem a inserção no mercado de trabalho (67,4%); sentiu ou ainda sente constrangimento ou vergonha por apresentar fissura labiopalatina (87,3%) na escola (51,6%), em relação à fala e estética (49,8%) e pelo motivo de zombaria (65,5%). Ao final de cada entrevista, todos os participantes manifestaram-se favoráveis à aplicação das leis de reserva de cotas no mercado de trabalho destinadas às pessoas com deficiência, especialmente aos indivíduos com fissura labiopalatina, devido às dificuldades vivenciadas, especialmente ligadas às dificuldades de fala e aparência facial, que levam a discriminações e preconceitos. Conclusão: Com base nos achados do presente estudo conclui-se que indivíduos com fissura labiopalatina não estão sendo devidamente contemplados com a reserva de cotas no mercado de trabalho destinado às pessoas com deficiência, uma vez que dos 223 indivíduos que relataram trabalhar no mercado formal, apenas 37 conseguiram pelo sistema de cotas. Ficou também evidenciado que o HRAC/USP tem contribuído para ingresso no mercado de trabalho destes indivíduos, por meio de ações que visam conscientizar os setores públicos e privados de que a fissura labiopalatina também é uma deficiência, assim como as demais categorias que são contempladas pelas Leis nº 8.112/90 e nº 8.213/91. / Objective: To investigate the percentage of people with cleft lip and palate inserted or not in the job market and identify the difficulties experienced in this process. Methods: Descriptive study of 519 subjects aged 18 to 35 years with cleft lip and/or palate, from different regions of Brazil and treated at the Hospital for Rehabilitation of Craniofacial Anomalies, University of São Paulo (HRAC/USP). The method comprised quantitative and qualitative approach, with data collection by an interview with 30 questions divided in different domains. Formal calculation of the sample was obtained from a universe of 9,109 individuals who met the inclusion criteria of this study, considering an overall error margin of 4.2% and a confidence level of 95%, which led to a total of 514 subjects, finally adding up to 519 individuals at study completion. The following domains were surveyed: sociodemographic profile; current professional situation; previous professional experiences; knowledge and access to rights; difficulties and facilities for inclusion in society and the job market. Results: Quantitative data based on the responses to each domain of the interview revealed that a significant percentage of individuals with cleft lip and palate is not (89.4%) and has never been (98.0%) included in quotas reserved for people with special needs. Most have completed high school (51.3%), belong to upper low socioeconomic level (65.3%), have no knowledge on and access to laws that benefit people with disabilities (56.1%), do not make use (86.5%) or made use (90.8%) of these legal benefits, and feel the need of enforcement of the law that foresees the reservation of job quotas for persons with disabilities (67.4%). Most felt or still feel embarrassment or shame for the cleft lip and palate (87.3%) in school (51.6%), in relation to speech and esthetics (49.8%) and suffer bullying (65.5%). At the end of each interview, all individuals were favorable to the application of law that reserve quotas for people with special needs also for people with cleft lip and palate, due to the difficulties experienced in their lives, especially related to speech and facial appearance, which lead to discrimination and prejudice. Conclusion: Based on the present findings, it was concluded that individuals with cleft lip and palate are not being included in the reservation of job quotas for people with disabilities, because among 223 individuals with formal jobs only 37 had access through the quota system. It was also demonstrated that HRAC/USP has contributed to the job market entry of these individuals, by actions that aim to educate the public and private sectors that cleft lip and palate is also a disability, as well as the other categories that are covered by Laws n. 8112/90 and n. 8213/91.