Keberhasilan Pemulihan dalam Komuniti dan faktor berkaitan dengannya dalam kalangan kanak-kanak kurang upaya di Pantai Timur Semenanjung Malaysia (Outcome of Community-based Rehabilitation and its Associated Factors among Children with Disability in East Coast of Peninsular Malaysia) / Jurnal Sains Kesihatan Malaysia

@#Children with disability require comprehensive and continuous rehabilitation. Community-based rehabilitation (CBR) was developed to fulfil this need and has benefited children of various ages both in the rural and urban societies. In Malaysia, the government largely fund rehabilitation of children at the CBR centers. However, to date research data on the outcome of CBR on children with disability in the country is scarce. This study was intended to determine the outcome of CBR and its associated factors among children with disability. Outcome of rehabilitation was determined with regard to changes in activity of daily living ability with the use of the Barthel Index at 6 months post-CBR. Analysed factors were age, baseline score of the Barthel Index, frequency of attendance in therapy sessions and number of therapy received. Data was analysed using paired t test, Wilcoxon signed ranks test and Spearman correlation test. A total of 220 children with disability aged 4 to 18 years and 220 caretakers from 29 selected CBR centres in Pahang, Terengganu and Kelantan participated in this study. The results showed a small increase in the Barthel Index score of the children, with mean change ± SD equals 0.90 ± 4.54 (p=0.003) following rehabilitation. Attendance to therapy sessions was low, with <50% attended three quarter or more sessions of the total sessions offered. No analysed factors were found to be associated with the change in the Barthel Index (p>0.05). As a conclusion, the outcome gained through CBR is too small for the duration of rehabilitation implemented. The delivery of CBR program need to be reviewed and enhanced to improve its effectiveness on children with disability.

Acesso à fisioterapia de crianças e adolescentes com deficiência física em instituições públicas / Physiotherapy access for children and adolescents with physical disabilities in public institutions

Resumo Este estudo objetiva identificar os fatores que dificultam o acesso de crianças e adolescentes com deficiência física ao tratamento fisioterapêutico, em estabelecimentos credenciados ao Sistema Único de Saúde em Curitiba, Paraná, Brasil. Trata-se de um estudo transversal que entrevistou gestores, fisioterapeutas, pais e/ou responsáveis por crianças com deficiência física. A percepção de dificuldades de cada um dos grupos de entrevistados foi comparada por meio de estatísticas descritivas, considerando as dimensões: disponibilidade, poder de pagamento, informação e aceitabilidade. Considerando a dimensão disponibilidade, identificaram-se como dificuldades: distância entre o estabelecimento e a residência dos usuários, pouca oferta de serviços e fila de espera. Em relação ao poder de pagamento, observou-se a falta de recursos financeiros entre os pais. Nas dimensões informação e aceitabilidade, a falta de informação acerca do diagnóstico e a negação foram referidas pelos participantes. Conclui-se que o serviço de fisioterapia não tem sido garantido em tempo favorável ao desenvolvimento motor das crianças, de modo que se faz necessário rever a organização e distribuição dos serviços, bem como são essenciais políticas efetivas que garantam a sua utilização.

Abstract This study aims to identify the factors that hinder physically disabled children and adolescent's access to physiotherapy in establishments accredited by the Unified Health System in Curitiba, Paraná, Brazil. This is a cross-sectional study that interviewed managers, physiotherapists, parents or guardians of children with physical disabilities. The perception of difficulties of each interviewed group was compared through descriptive statistics, considering the following realms: availability, purchasing power, information and acceptability. Considering the realm of availability, we identified the following hindrances: distance between the physiotherapy location and user's residence, inadequate supply of services and waiting list. Regarding the purchasing power, we observed the lack of financial resources among parents. Regarding information and acceptability, the lack of information about diagnosis and denial were reported by participants. We can conclude that the physiotherapy service has not been timely assured to children's motor development, so it is necessary to review the organization and distribution of services, and effective policies are required to ensure their use.

Oral Health Knowledge, Attitude and Practice of the Caregiver at the Special Needs Boarding School in Kuantan, Pahang

@#Introduction: Caregivers and parents are important to the healthy development of children. Therefore, this study was undertaken to assess the knowledge, attitude and oral health practice among caregivers of children with disabilities. Method: A cross-sectional study was conducted among caregivers in three special boarding schools in Kuantan, Pahang, who cared for 7 to 17 years old disabled children using self-administered questionnaires. Kruskal-Wallis and Chi-square test were used to analyse the data. Results: Most caregivers were female (73.2%). The overall mean knowledge score was 87.75%. All of caregivers have agreed that sugary or sticky food and drinks can cause caries and toothbrushing for children is important for oral health. All of the caregivers possess secondary educational level where 75% of the caregivers with tertiary educational level assist the children while brushing teeth. However, 71.9% of caregivers with tertiary educational level and 45% of caregivers with secondary educational level had shown poor oral health practice since they were frequently giving sweet food to the children. Surprisingly, most of the caregivers with secondary educational level (95.2%) and caregivers with tertiary educational level (85%) thought children with disabilities can brush their teeth independently. Conclusion: Despite having adequate oral health knowledge among the caregivers in the special needs boarding schools, their attitude and oral health practice however were not up to the necessary standards. The implementation of oral health promotion related programmes in the special needs boarding schools must be taken into consideration in order to tackle the oral health problems of children with disabilities.

Derechos de los pacientes con enfermedades que se asocien con discapacidad: marco legal actual / Rights of persons with conditions associated with disability: current legal framework

Este estudio de revisión tiene como objetivo promover la diseminación de la legislación vigente en nuestro país que protege los derechos de los pacientes con enfermedades que pueden producir discapacidad. Se analizan los artículos de las leyes que resguardan los derechos de estas familias para que sean más accesibles a los profesionales de la salud que las asisten. Argentina posee una amplia legislación dedicada a protegerlos, pero no es claramente reconocida por el ciudadano en general. La propuesta es difundir esta información en el ambiente médico para que los profesionales de la salud puedan ayudar al paciente a reconocer sus derechos a través del empoderamiento.

The objective of this review study is to promote the dissemination of the legislation in force in Argentina for the protection of the rights of persons with conditions that might cause disability. Articles of bills and laws that protect the rights of these families are reviewed, so that health care providers assisting them have better access to them. Argentina has a wide range of laws and regulations dedicated to protecting them, but they are generally not clearly recognized by citizens. The aim is to disseminate this information in the medical setting so that health care providers can help patients recognize their rights through empowerment.

Discussing of Mental Rehabilitation of Children with Disability under ICF Theory and Practice / 中国康复理论与实践

@#Objective To discuss the mental rehabilitation of disabled children under International Classification of Functioning, Disabil-ity and Health (ICF). Methods The target, the organization of work team, environment support and the core problems of disabled children's mental rehabilitation were discussed based on the concept of ICF. Results The goal of mental rehabilitation was to recover the mental func-tion of disabled children. The multidisciplinary team should include medicine, psychology, education, social work and so on. Supportive en-vironments such as professional workers, families, communities, partner and barrier-free environment were the effective means of disabled children's mental rehabilitation. Respect and equality were the precondition of disabled children's mental rehabilitation, and positive atten-tion should be the working attitude. Conclusion ICF-CY can provide a new perspective and framework for the mental rehabilitation of dis-abled children.

Status and Unmet Needs of Family Rehabilitation for Children with Disabilities / 中国康复理论与实践

@#Objective To investigate the current status of family rehabilitation for children with disability and the unmet needs of habilitation/rehabilitation for their parents. Methods Family Rehabilitation Needs Survey Questionnaire was used to investigate 186 families of the children with disability from 5 rehabilitation institutions in 4 provinces. Results Most families accepted family rehabilitation, including family support, developed rehabilitation scheme, telephone counseling, real-time guidance and appointment for family rehabilitation. Most families would spent 1-2 hours a day for the family rehabilitation, and prefer the rehabilitation of gross motion. However, the rehabilitation agencies played less importance on supports of family rehabilitation. Conclusion The family rehabilitation supports needs to be improved in specification of rehabilitation process, developing rehabilitation scheme and quality control.

Status and Unmet Needs of Family Rehabilitation for Children with Disabilities / 中国康复理论与实践

Objective To investigate the current status of family rehabilitation for children with disability and the unmet needs of habili-tation/rehabilitation for their parents. Methods Family Rehabilitation Needs Survey Questionnaire was used to investigate 186 families of the children with disability from 5 rehabilitation institutions in 4 provinces. Results Most families accepted family rehabilitation, including family support, developed rehabilitation scheme, telephone counseling, real-time guidance and appointment for family rehabilitation. Most families would spent 1-2 hours a day for the family rehabilitation, and prefer the rehabilitation of gross motion. However, the rehabilitation agencies played less importance on supports of family rehabilitation. Conclusion The family rehabilitation supports needs to be improved in specification of rehabilitation process, developing rehabilitation scheme and quality control.

Inclusão de crianças com deficiência na escola regular numa região do município de São Paulo: conhecendo estratégias e ações / Inclusion of children with disabilities in regular schools in an area of São Paulo: understanding strategies and actions

A inclusão de alunos com necessidades educacionais especiais no ensino regular depende da preparação da comunidade escolar para promover a participação de todos os alunos. Foi objetivo deste estudo conhecer, do ponto de vista do professor do ensino fundamental da rede pública municipal, as estratégias pedagógicas que utilizavam para a inclusão de crianças com deficiência na classe comum. Para isso foram realizadas entrevistas semiestruturadas individuais e, posteriormente, grupais com 11 professores de cinco escolas, um representante do Centro de Formação e Acompanhamento à Inclusão e um coordenador pedagógico. As entrevistas foram gravadas e transcritas. Após diversas leituras foi possível identificar como temáticas principais: sentidos e imaginários do professor sobre a deficiência, formação do professor para efetivação do processo de inclusão, bem como a utilização de estratégias pedagógicas diferenciadas e formação de rede de apoio na escola. Os entrevistados utilizavam estratégias gerais como aula expositiva, debates, e específicas como: avaliação dos alunos, adaptação do material, atividades em duplas, parceria com o professor da sala de apoio e acompanhamento à inclusão. Parte dos entrevistados trouxe uma visão com relação aos alunos com deficiência permeada de possibilidades, acreditando no potencial de aprendizagem dos mesmos, enquanto para outros, o discurso centrou-se, sobretudo, na impossibilidade da aprendizagem. Os docentes identificaram a necessidade de apoio institucional para seu trabalho, incluindo possibilidades de formação a partir das demandas cotidianas. Responder às necessidades levantadas é parte dos desafios para implementar a Educação Inclusiva na perspectiva da Educação para Todos, para a efetivação dos direitos de crianças com necessidades educacionais especiais.

Including students with special needs in regular education requires preparation by the school community in order to promotes participation of all students. The purpose of this study is to understand from the point of view of primary and secondary municipal public school teachers, the pedagogical strategies these teachers used to include children with special needs in regular classes. This required conducting semi-structured individual interviews and later semi-structured group interviews with 11 teachers of 5 schools, 1 representative of the Centro de Formação e Acompanhamento à Inclusão (Inclusion Training and Monitoring Center) and 1 Learning and Teaching Coordinator. The interviews were recorded and transcribed and after several readings it was possible to identify the key topics: the perceptions and mental images of the teacher on disability, the training of the teacher to promote actual inclusion, as well as the use of dedicated teaching strategies and the formation of a support network at school. The participants used general strategies such as lectures and debates, and specific strategies such as student assessments, adaptation of teaching materials, activities in pairs, and joint work with the assistant teacher and inclusion monitor. Part of the participants shared a positive idea about the special needs students, demonstrating they believed these students had potential for learning. The discourse of the other participants showed that they did not believe in these potentialities. The teachers identified the need for institutional support for their work, such as on-going teacher training based on daily demands. Part of the challenge of implementing an Inclusive Education program integrated to the Educação para Todos (Education for All) idea requires us to face demands such as these in order to effectively enforce the rights of children with special learning needs.

Família de crianças com deficiência e profissionais: componentes da parceria colaborativa na escola / Family of children with disabilities and professionals: components of the collaborative partnership in school

O presente estudo tem como objetivo identificar e descrever os comportamentos dos profissionais da escola e dos familiares de crianças com deficiência que, na perspectiva dos dois lados, são propiciadores e mantenedores de uma parceria colaborativa efetiva e bem sucedida. O estudo foi conduzido com quatro grupos focais, compostos por familiares (FAM1 e FAM2) e por profissionais (PROF1 e PROF2). Foram conduzidas duas etapas de coleta de dados. Na Etapa 1, as reuniões tiveram por objetivo identificar os componentes da parceria colaborativa. Na Etapa 2, cada um dos grupos focais foi confrontado com os dados obtidos na primeira etapa, sendo que familiares foram confrontados com os dados dos profissionais e vice-versa. Por meio da análise qualitativa dos dados obtidos, foram identificadas e descritas as categorias levantadas pelos participantes referentes aos comportamentos que devem ser emitidos. O estudo apontou que, entre as categorias levantadas, são observadas características essenciais do processo colaborativo, tais como respeito mútuo, comunicação, confiança, participação, amabilidade, sinceridade, seriedade e imparcialidade. Espera-se que o levantamento e a descrição das categorias possam nortear os profissionais da escola e familiares de crianças com deficiência na busca do estabelecimento de uma parceria colaborativa efetiva e de sucesso.

This present study aims to identify and describe the behavior of professionals that work in the school and the family of children with disabilities that promote and maintain an effective and successful collaborative partnership, as viewed from both sides. The study was carried out with four focal groups, composed by families (FAM1 and FAM2) and professionals (PROF1 and PROF2). Two phases of data collection were conducted. In Phase 1 the meetings aimed to identify the components of collaborative partnerships. In Phase 2 each of the focal groups was confronted with data obtained during the first phase, i.e. the parents were presented with the data given by the professionals and vice versa. By qualitative analyses of the obtained data, the categories elicited by the participants related to the behaviors that should be emitted were identified and described. The study pointed out that among the elicited categories, essential characteristics of the collaborative process can be observed, such as mutual respect, communication, trust, participation, amicability, sincerity and impartiality. It is expected that the survey and description of the categories will guide professionals and family members of disabled children in search of successful and effective collaborative partnership.