RESUMO
Diagnostic genetic testing and non-invasive prenatal testing (NIPT) for conditions associated with disability are becoming increasingly available to consumers. This genetic information can be used in the disability setting to inform factors such as prognosis, management, and reproductive decision-making. Genetic counselors (GCs) play an important role in the provision of genetic testing and NIPT, and their attitudes toward disability can influence how genetic information is communicated and shape patients' responses. This study aimed to evaluate and describe Australasian GCs' experience with and attitudes toward disabilities to identify potential biases and training needs. A cross-sectional survey was distributed to 400 GCs registered with the Human Genetics Society of Australasia. Of the 106 respondents (participation rate: 26%), a significantly greater proportion were more comfortable interacting with individuals with physical disability as compared to intellectual disability (p < 0.001). GCs with personal experiences with disabilities reported significantly greater comfort interacting with people with intellectual disability than those without experience (p = 0.012). Qualitative analysis revealed discomfort was less reflective of bias than inexperience and apprehension about communicating disrespectfully. GCs believed people with disabilities experience discrimination and that having a disability could make a person stronger, wiser, and more motivated. Most GCs viewed prenatal testing for disabilities positively as it allowed for decisions regarding continuing the pregnancy and/or provided opportunity to prepare. Challenges identified for prenatal counseling included negative societal attitudes and the low visibility of disability. GCs felt that 'personal beliefs' was the primary factor influencing the decision to terminate a pregnancy affected by disability. These findings highlight important education and training needs for GCs to improve preparedness and comfort when communicating with people with a disability.
RESUMO
COVID-19 has very publicly had profound impacts on the health system of every country in the world. Over 4.5 million people have lost their lives. School closures worldwide where up to 1.6 billion of the world's children have been out of school, are also prominent in world news. Behind these public impacts are the families. In this paper, we focus on the experiences of families with people with intellectual and developmental disabilities (IDD) through analysis of two data sets: the emerging research literature and contributions from our author team who have lived experience of intellectual and developmental disability in the context of COVID-19. From these two data sets, we discern five themes of the impact of the pandemic: on health, on education, on services and supports, on families and finally on relationships beyond the family. We conclude with lessons from those living with intellectual and developmental disabilities, the carers and the individuals themselves to draw implications for supporting families in the context of disability during future pandemics.
RESUMO
OBJECTIVES: To date, there has been little qualitative research exploring how students interpret visual sensory input in the classroom. Research has found that seeking student voice has the capacity to act as a change agent for Educational Quality of Life (EQOL), in several aspects of educational decision-making. In light of this knowledge, this study endeavored to fill this gap in the educational research literature. In this research, we take a qualitative, deductive approach to exploring students' interpretations of 'visual clutter' in the classroom, to seek to improve EQOL. METHODS: Through Arts-informed methodology, this study sought students' interpretations of 'visual clutter' in the classroom. The study was conducted in three stages using photo elicitation, draw and talk, and semi-structured interviews. RESULTS: In seeking three students' voices regarding their personal interpretations of 'visual clutter' in classrooms, light was shed on four themes: color palette, feature congestion, affordances, and spatial size, which were each shown to elicit negative emotional responses from the students. We analyzed the drawings of one child in depth as an exemplar for the qualitative methodology used. CONCLUSION: Student voice is central to educational quality of life. In seeking student voice, students are given the opportunity to convey the scope of their adaptive responses to incoming visual input, thus providing personal context to support measures. In doing so, student voice is given meaning in another facet of educational decision-making. This can include implications for classroom design.
RESUMO
Aunque se conocen muchas de las consecuencias del síndrome de Down sobre el crecimiento y el desarrollo, queda mucho aún por comprender sus implicaciones sobre la enseñanza y el aprendizaje. El artículo ofrece las líneas principales de nuestros actuales conocimientos en que se basa la enseñanza de estos alumnos: las principales características, la problemática de la inclusión educativa, la importancia de disponer de elementos válidos para evaluar los progresos, la práctica educativa basada en hechos y evidencias, la importancia de conocer el perfil educativo, y las expectativas que se ofrecen para el futuro de la enseñanza y el aprendizaje
Although a great deal is known about the effects of Down síndrome on grouth and development, there is much left to understand about the implications for teaching and learning. The article brings current knowledge of relevance to those professionals involved in teaching: the main characteristics of learner with Down síndrome, inclusive practices, valid assesments to evaluate progress, the cognitive profile, the importance of evidence-based practice,and the expectations for future teaching and learning
