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Objetivo: aplicação do core set resumido genérico da CIFCJ para crianças e jovens de 0 a 18 anos com paralisia cerebral em um grupo de pacientes, através de um instrumento baseado no próprio core set, que operacionalize a coleta de dados funcionais. Métodos: Para algumas categorias, foi possível traçar uma relação entre o que se desejava avaliar e instrumentos escolhidos através de revisão da literatura. Nestes casos, as alternativas de resposta desses instrumentos foram agrupadas de forma que satisfizessem os critérios dos qualificadores da CIFCJ. Nos casos em que isso não fosse possível criou-se uma tabela de correspondência para cada item. Todos os pacientes foram classificados de acordo com o sistema de classificação da função motora grossa (GMFCS). Foram avaliados 33 pacientes dos ambulatórios e do Centro de Reabilitação de neurologia infantil do Hospital das Clínicas de Ribeirão Preto, divididos em 3 grupos, de acordo com sua faixa etária, e desenvolvidas tabelas para descrever os qualificadores de cada componente. Os dados do questionário do core set resumido de 0 a 18 anos da CIFCJ-PC foram inseridos em bancos de dados, digitados em planilha do Excel, e a análise descritiva simples deu-se através do programa estatístico SPSS. Resultados: Para cinco categorias foi possível utilizar escalas sem necessidade de perguntas auxiliares. A avaliação realizada apenas por perguntas objetivas, ocorreu em um item de funções do corpo, em três domínios de atividades e participação, e em todos os oito descritores do componente Fatores ambientais. A idade dos participantes variou entre 4 meses e 18 anos, com maior frequência (33%) de pacientes GMFCS III. A frequência de alguma forma de problema nas funções intelectuais foi de 75%, variando entre 63-81% nos três grupos etários. A Sensação de dor (b280) obteve a menor prevalência de deficiências de algum grau, existindo em maior número no grupo de 0 a 6 anos. Encontramos 91% das crianças e jovens avaliados apresentando limitação em algum grau para deslocar-se por diferentes locais (d460). Os principais facilitadores foram Família imediata (e310) (91%), Produtos e tecnologias para uso pessoal na vida diária (e115) (85%) e Serviços, políticas e sistemas de saúde (e580) (82%). A maior barreira entre os fatores ambientais foram Produtos e tecnologias usados em projeto, arquitetura e construção de edifícios (e150). Conclusão: O core set resumido da CIFCJ para crianças e jovens com paralisia cerebral de 0 a 18 anos permite gerar um perfil funcional dos pacientes com esta condição de saúde e identifica as áreas a serem mais bem trabalhadas para cada indivíduo. Aponta ainda as influências, deficiências e barreiras comuns a maioria desses indivíduos, podendo ajudar a diagnosticar problemas na área de saúde, economia e serviço social. / Objective: To apply the common brief ICF-CY core set for children and youth with cerebral palsy in a group of patients, through instruments based on the core set itself, that operationalize the data collection in functioning. Methods: For some categories, it was possible to correlate the domains and an instrument selected through literature review. In these cases, the response alternatives were grouped to satisfy the criteria of the ICF-CY qualifiers. When this was not possible, we created a correlation for each item. All patients were classified according to GMFCS. Thirty-three patients from the outpatient clinics and the Children\'s Neurology Rehabilitation Center (CER) of the Hospital das Clínicas de Ribeirão Preto (HCRP) were divided into three groups, according to their age group. Tables were developed to describe the qualifiers of each component. Data from the ICF-CY common brief core set for children and youth with CP were entered into databases, typed in an Excel spreadsheet, and the simple descriptive analysis was done through the SPSS statistical program. Results: For five categories, it was possible to use scales without the need for auxiliary questions. The evaluation performed with only objective questions, occurred in an item of the component functions of the body, in three domains of activities and participation, and in all eight descriptors of the Environmental factors component. The participants aged from 4 months to 18 years, with a greater frequency (33%) of GMFCS III patients. The prevalence of some sort of problem in intellectual functions was 75%, varying between 63-81% in the three age groups. Sensation of pain (b280) obtained the lowest prevalence of deficiencies, existing in a greater number in the group of 0 to 6 years. We found 91% of the children and young people evaluated, showing some degree of limitation for Moving around different locations (d460). The main facilitators were Immediate family (e310) (91%), Products and technology for personal use in daily living (e115) (85%) and Health services, systems and policies (e580) (82%). The biggest barrier in environmental factors was Design, construction and building products and technology of buildings for public use (e150). Conclusion: common brief ICF-CY core set for children and youth with cerebral palsy is very useful to generate a functional profile for patients with CP, and to identify the areas to be better worked for each individual. This core set also points out influences, deficiencies and barriers that are common for most of these children, and should help on identifying problems in health, economy and social services.

It is widely acknowledged that a team approach is preferred practice and contributes to optimizing the surgical, dental, speech and psychosocial outcomes for individuals with cleft lip and palate (CLP).Young adulthood often marks the transition from child-centered interdisciplinary care to adult-centered care. There is a paucity in literature relating to the transition of care for young adults with CLP. The purpose of this survey research is therefore to explore the CLP team practices regarding young adults with CLP. An exploratory, descriptive design with quantitative analysis was used to explore what services are provided by CLP teams to young adults with CLP. An exploratory design was deemed appropriate due tolimited research available on the provision of team services for young adults with CLP. An online survey was used as the method of data collection to determine the number of teams providing services to this population, the types of services provided, and the perceived needs of young adults receiving CLP team services. 71 participants of (18.4%) responded to the survey. The low response rate is typical of survey research, despite three invitations to participate. However, the topic elicited global responses, from North America, South America, Europe, Asia and Australia, which is indicative of the importance of transition of care for young adults with CLP. 46 Participants responded to the question regarding their perceived needs of young adults with CLP. It appears that the characteristics of young adults with CLP (i.e., appearance, self-acceptance, social attitudes, social experiences, employment, starting a family, hearing and speech) are perceived to occur universally and that concerns about appearance is most frequent, followed by speech were important needs recognized by the teams. 56% of teams that responded to that they discharge young adults between 18-22 years, which confirms the expected results. However, an unexpected finding is that 37% of team’s complete treatment or never discharge patients. 35.5% of the respondents described the services provided, which existed of plastic and reconstructive surgery (98%), oral and maxilla facial surgery (86%), orthodontics (90%) and speech therapy (78%) with 50% indicating that they also provided other services. This confirms the perceptions of the needs of young adults with CLP since the high frequency of surgery and orthodontics address the concerns regarding appearance and speech therapy addresses the frequently perceived concern regarding speech. Continued team care is crucial for young adults with CLP to address their adult needs and improve their QoL.The results from this survey research will increase awareness of the importance of the transition from child to adult team care. Recommendations for further research will be discussed.

There has been a growing awareness of human rights, specifically children rights, over the past 20 years. Children with intellectual disabilities are often described as a vulnerable group, with limited opportunities to fully participate in society and act as meaningful contributors. Primary caregivers are responsible to act in their child’s best interest and hence their perception of children’s rights is important. The role that they play in their child with disabilities’ life and how they promote their child’s rights, can never be ignored. The main aim of this study was to describe the extent to which Afrikaans-speaking primary caregivers perceive that the basic needs of their children between 8;0 and 14;11 (years;months) with intellectual disabilities are being met, in an attempt to describe their rights as set out by the United Nations Convention on the Rights of the Child (UNCRC). The UNCRC is a widely accepted body of which South Africa is a signatory. Forty-nine participants who met the selection criteria were asked to complete a questionnaire, consisting of biographical information, the Ten Questions Questionnaire (TQQ), and questions related to needs and rights of children with disabilities as set out by the UNCRC. Participants were mostly older, married mothers who had only a Grade 10 or lower qualification. Either themselves or their spouses were in full-time employment, and they were part of the low to middle socio-economic group. Results revealed that the majority of primary caregivers believed that their children with intellectual disabilities understood them when they told their children to do something and could speak and say recognizable words, whilst less than half of the primary caregivers reported that their children’s speech was different from normal. More than half of the primary caregivers indicated that their children learn to do things in the same way as typically developing peers. With regard to different assistive devices, the majority of primary caregivers felt that their children’s needs were met in respect to different assistive devices. This study revealed that primary caregivers most frequently mentioned intangible rights such as self-esteem rights (which included attitudes, acceptance, respect and equality. The study contributed to an improved understanding of Afrikaans-speaking primary caregivers’ perception of their children with intellectual disabilities’ needs as a starting point for claiming their human rights. / Dissertation (MA)--University of Pretoria, 2012. / Centre for Augmentative and Alternative Communication (CAAC) / unrestricted

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The purpose of this project is to determine inclusion of the ICF-CY in CLP training curricula for SLPs. Survey research was conducted with course instructors across the nation. Results describe the application of the ICF-CY in CLP courses at the graduate level. Recommendations for including the ICF-CY framework are made.

The purpose of this project is to describe a proposed model for the assessment of children with cleft palate within the framework of the ICF-CY (WHO, 2007). Suggestions for clinical application and cleft palate curricula are made, and future research needs are identified.

The purpose of this presentation is to describe the application of The International Classification of Functioning, Disability and Health-Children and Youth Version (ICF-CY) (WHO, 2007) as a framework for international collaboration with the aim of translating an outcomes measure and to field test the clinical applicability and cultural validity thereof.

The purpose of this project is to determine inclusion of the ICF-CY in Cleft Lip and Palate (CLP) training curricula for Speech-Language Pathologists (SLPs). Survey research was conducted with CLP course instructors across the nation. Results describe the application of the ICF-CY in CLP courses at the graduate level. Recommendations for including the ICF-CY framework are made. Cleft Lip and Palate, one of the most prevalent birth defects in the US, affects 7,090 infants per year with an incidence of approximately 1 in 600 births (Center for Disease Control, 2006). SLPs require skills and competencies in assessing and treating CLP, however the academic and clinical preparation of SLPs regarding CLP remains a topic of concern. Training issues in CLP have been researched since the 1960’s (Vallino et al., 2008). Sharp and O’Gara (2014) suggested discussing training programs regarding the core learning outcomes for entry-level preparation in resonance disorders. The International Classification of Functioning, Disability, and Health for Children and Youth (ICF-CY) (WHO, 2007) provides an important, holistic framework for children with CLP. The ICF-CY’s interrelated components emphasize the factors influencing the activities and participation of children with CLP. Despite research recommending incorporation of the ICF-CY into SLP training curricula, the inclusion of the ICF-CY in CLP courses has not been explored to date as far as could be determined. The current study aimed to survey CLP graduate course instructors to describe the content of curricula and to determine the extent to which the ICF-CY is being included and applied in teaching assessment and intervention of CLP. A 35-item questionnaire was constructed to obtain information regarding academic and clinical training in the area of CLP in US graduate programs. Survey questions targeted demographic information regarding the program, course, and instructor. Survey questions also examined the inclusion of the ICF-CY framework into course content regarding assessment and intervention. The survey was administered via an online academic survey tool. The survey was distributed to the department chairs of ASHA accredited SLP graduate programs to be completed by training programs’ faculty who teach the CLP (or related) course. 61 fully completed surveys were eligible 2016 Appalachian Student Research Forum Page 101 for analysis. An item-by-item analysis was performed to describe survey results. Results showed only 23% of respondents reported teaching a course exclusively related to CLP, which confirms concerns related to Vallino et al. (2008) and other researchers. The ICF-CY does not yet appear to be fully integrated into CLP coursework and in response to the question posed by the researchers, does not appear to be alive and well in US CLP curricula. A case is made for the ICF-CY framework to be incorporated into CLP curricula to provide future SLPs a holistic perspective of children with CLP and to extend their thinking about the impact of speech impairment associated with CLP. Including the ICF-CY framework in training will facilitate collaborative inter-professional care of children with CLP. Finally, the inclusion of the ICF components and their interaction into ASHA’s most recent draft of the Scope of Practice in SpeechLanguage Pathology emphasizes the necessity of ICF inclusion in course curriculum to support provision of high-quality services.