Developing a best practice model for partnership practice between specialist palliative care and intellectual disability services: a mixed methods study

Background: The lack of access to good quality palliative care for people with intellectual disabilities is highlighted in the international literature. In response, more partnership practice in end-of-life care is proposed. 
Aim: This study aimed to develop a best practice model to guide and promote partnership practice between specialist palliative care and intellectual disability services. 
Design: A mixed methods research design involving two phases was used, underpinned by a conceptual model for partnership practice. 
Setting/participants: Phase 1 involved scoping end-of-life care to people with intellectual disability, based on self-completed questionnaires. In all, 47 of 66 (71.2%) services responded. In Phase 2, semi-structured interviews were undertaken with a purposive sample recruited of 30 health and social care professionals working in intellectual disability and palliative care services, who had provided palliative care to someone with intellectual disability. For both phases, data were collected from primary and secondary care in one region of the United Kingdom. 
Results: In Phase 1, examples of good practice were apparent. However, partnership practice was infrequent and unmet educational needs were identified. Four themes emerged from the interviews in Phase 2: challenges and issues in end-of-life care, sharing and learning, supporting and empowering and partnership in practice. 
Conclusion: Joint working and learning between intellectual disability and specialist palliative care were seen as key and fundamental. A framework for partnership practice between both services has been developed which could have international applicability and should be explored with other services in end-of-life care.

The importance of understanding the behavioural phenotypes of genetic syndromes associated with intellectual disability

Behavioural phenotype research is of benefit to a large number of children with genetic syndromes and associated developmental delay. This article presents an overview of this research area and demonstrates how understanding pathways between gene disorders and behaviour can inform our understanding of the difficulties individuals with genetic syndromes and developmental delay experience, including self-injurious behaviour, social exploitation, social anxiety, social skills deficits, sensory differences, temper outbursts and repetitive behaviours. In addition, physical health difficulties and their interaction with behaviour are considered. The article demonstrates the complexity involved in assessing a child with a rare genetic syndrome.

The use of eye-tracking to explore social difficulties in cognitively able students with autism spectrum disorder: A pilot study

Individuals with autism spectrum disorder do not just 'grow out of' their early difficulties in understanding the social world. Even for those who are cognitively able, autism-related difficulties continue into adulthood. Atypicalities attending to and interpreting communicative signals from others can provide barriers to success in education, employment and relationships. In the current study, we use eye-tracking during real social interaction to explore attention to social cues (e.g. face, eyes, mouth) and links to social awareness in a group of cognitively able University students with autism spectrum disorder and typically developing students from the same University. During the interaction, students with autism spectrum disorder showed less eye fixation and more mouth fixation than typically developing students. Importantly, while 63% of typically developing participants reported thinking they were deceived about the true nature of the interaction, only 9% of autism spectrum disorder participants picked up this subtle social signal. We argue that understanding how these social attentional and social awareness difficulties manifest during adulthood is important given the growing number of adults with autism spectrum disorder who are attending higher level education. These adults may be particularly susceptible to drop-out due to demands of coping in situations where social awareness is so important.

School's out forever: Postsecondary educational trajectories of students with autism

Objective:Postsecondary educational attainment is the key for successful transition to adulthood, economic self-sufficiency, and good mental and physical health.Method:Secondary analyses of school leavers’ data were carried out to establish postsecondary educational trajectories of students on the autism spectrum in the United Kingdom.Results:Findings show that students with autism who had attended mainstream secondary schools enter Further Education (post-16 vocational training) and Higher Education (University) institutions at a similar rate to other students to study the full range ofsubjects on offer. However, they are more likely to be younger, study at a lower academic level, and remain living at home.Conclusion:While course completion data were not yet available, attainment data showed that prospects were improving, although more needs to be done to enable these young adults to a achieving their post secondary educational potential.

Applied behaviour analysis: What do teachers of students with autism spectrum disorder know

With rising numbers of school-aged children with autism educated in mainstream classrooms and applied behaviour analysis (ABA) considered the basis of best practice, teachers’ knowledge in this field has become a key concern for inclusion. Self-reported knowledge of ABA of special needs teachers (n=165) was measured and compared to their actual knowledge of ABA demonstrated in accurate responses to a multiple-choice test. Findings reported here show that teachers’ self-perceived knowledge exceeded actual knowledge and that actual knowledge of ABA was not related to training received by government agency. Implications for teacher training are discussed.

Supporting the Supporter: Social Support, Stress, and Well-being among Caregivers of Children with Severe Disabilities

Thesis (Ph.D.)--University of Washington, 2014

Avaliação e promoção da leitura na formação de adultos com incapacidade intelectual

A promoção de competências de leitura é um tema central, tanto na educação regular, como na educação especial em crianças em idade pré-escolar e escolar. Todavia, as competências de leitura de indivíduos adultos com incapacidade intelectual são um domínio muito pouco estudado. São também escassos os estudos direcionados à avaliação dessas competências. Esta investigação propõe uma tradução/ adaptação do APAR (Assessment of Phonological Awareness and Reading), um protocolo de avaliação da consciência fonológica (CF) e da leitura especificamente concebido para a população em estudo. Procura-se também analisar os processos cognitivos envolvidos na leitura nos quais a intervenção produzirá resultados mais significativos e confirmar uma relação positiva entre a avaliação prévia de competências escolares em contexto formativo profissional e o efetivo desenvolvimento de competências de leitura. Foram avaliadas em dois momentos (pré e pós-teste) a CF e competências de leitura de 12 adultos com incapacidade intelectual ligeira, sendo estes sujeitos a um programa de intervenção, visando áreas menos desenvolvidas das suas competências que possibilitassem desempenhos de leitura mais fortes. Ao nível da análise quantitativa, foram comparados os resultados obtidos nos dois momentos de administração. No tratamento estatístico recorreu-se a análises de correlação de Spearman para determinar a presença de indicadores de desempenho ao nível da CF e ao cálculo de coeficientes de correlação de Pearson e Spearman para controlar variáveis externas como idade, sexo e habilitações literárias. Os resultados obtidos revelam desempenhos fracos ao nível da leitura/ compreensão textual e, em particular, da CF em pré-teste e ganhos significativos globais após implementação de uma intervenção baseada em medidas de avaliação prévia de competências de leitura/compreensão e CF

An after-school literacy program : investigating the experiences of students with literacy difficulties, their volunteer tutors, and the tutors' transition into the teaching profession

This research responds to a pervasive call for our educational institutions to provide students with literacy skills, and teachers with the instructional supports necessary to facilitate this skill acquisition. Questions were posed to gain information concerning the efficacy ofteaching literacy strategies to students with learning difficulties, the impact of this training on their volunteer tutors, and the influence of this experience on these tutors' ensuing instructional practice as teacher candidates in a preservice education program. Study #1 compared a nontreatment group of students with literacy difficulties who participated in the program and found that program participants were superior at reading letter patterns and at comprehending the elements of story grammar. Concurrently, the second study explored the experiences of 19 volunteer tutors and uncovered that they acquired instructional skills as they established a knowledge base in teaching reading and writing, and they affirmed personal goals to become future teachers. Study #3 tracked 6 volunteer tutors into their pre-service year and identified their constructions, and beliefs about literacy instruction. These teacher candidates discussed how they had intended to teach reading and writing strategies based on their position that effective teaching ofthese skills in the primary grades is integral to academic success. The teacher candidates emphasized the need to build rapport with students, and the need to exercise flexibility in lesson plan delivery while including activities to meet emotional and developmental requirements of students. The teacher candidates entered their pre-service education with an initial cognition set based on the limited teaching context of tutoring. This foundational ii perception represented their prior knowledge of literacy instruction, a perception that appeared untenable once they were immersed in a regular instructional setting. This disparity provoked some of the teacher candidates to denounce their teacher mentors for not consistently employing literacy strategies and individualized instruction. This critical perspective could have been a demonstration of cognitive dissonance. In the end, when the teacher candidates began to look toward the future and how they would manage the demands of an inclusive classroom, they recognized the differences in the contexts. With an appreciation for the need for balance between prior and present knowledge, the teacher candidates remained committed to implementing their tutoring strategies in future teaching positions. This document highlights the need for teacher candidates with instructional experience prior to teacher education, to engage in cognitive negotiations to assimilate newly acquired pedagogies into existing pedagogies.

Wrap around analysis of the affordances and constraints for girls with physical disabilities participating in physical activities /

This is a qualitative study exploring the physical activity patterns of a group of women with physical disabilities through their lifespan. In-depth interviews were done with a group of 6 women aged 1 9 to 3 1 . The data were analyzed via content and demographic strategies. Participants in this study reported that their physical activity patterns and their experiences related to their physical activity participation changed over their lives. They were most physically active in their youth (under 14 years of age) and as they reached high school age (over 14 years of age) and to the present time, they have become less physically active. They also reported both affordances and constraints to their physical activity participation through their lifespan. In their youth, they reported affordances such as their parents' assistance, an abundance of available physical activity opportunities, and independent unassisted mobility, as all playing an important factor in their increased youth physical activity. In adulthood, the participants' reported less time, fewer opportunities for physical activity, and reliance on power mobility as significant constraints to their physical activity. The participants reported fewer constraints to being physically active in their youth when compared to adulthood. Their reasons for participation in physical activity changed from fun and socialization in their youth instead of for maintenance of health, weight, and function in adulthood. These affordances, constraints and reasons for physical activity participation were supported in the literature.

School integration and the friendships of youth with developmental disabilities

- The present study was an investigation into the effect ofschool integration on the friendships ofyouth with developmental disabilities and their peers without disabilities. The youths, their parents, and their teachers provided insights into the youths' friendships. A qualitative paradigm was used in this research. The researcher guided the collection and analysis ofthe data with the phenomenologicallifeworld existentials of body, space, time, and human relation (Van Manen, 1990). Individual interviews were conducted with each youth, and group interviews were conducted with each triad (a youth, their parent(s), and their teacher) to discuss the youth's friendships and the supports necessary to facilitate the friendships. Through phenomenological analysis of the data, four thematic statements emerged: friendships are far from perfect, to have a friend you have to be a friend, parents as choreographers offriendship, and teachers as reluctant partners in friendship facilitation. Based on the results ofthis study, it was concluded that the development of friendships between youth with developmental disabilities and their peers without disabilities was happening in integrated school settings. However, it was also evident that the support ofteachers and parents alike were required to facilitate the development and maintenance ofsuch friendships. Recommendations for practice are discussed, including the need for active participation by the youth's parents in the facilitation offriendships, and the use ofa "circle offriends" to facilitate friendship development. Also discussed are the recommendations for further research, including the need for the youth's friends to be interviewed regarding their friendships with the youth with disabilities, and the need for researcher observation ofth~ friendships in action. Further research could also explore the role ofthe mother versus the father in facilitating friendships, and the role of recreation and leisure opportunities in the ,development offriendships.

Experiences and meaning of the aquatic environment for individuals with physical disabilities

This study examines the experiences and meaning of physical activity in the aquatic environment to enhance social, cultural and political understanding of its impact in the lives of individuals with physical disabilities. Interviews, lived experience descriptions and artifacts present an explanation of the felt sense oftheir bodies as they engage in swimming or scuba diving. 11 Combining written, verbal and visual descriptions generated by informants provides a detailed account of the unique qualities of physical activity in the water for those with physical disabilities. Participants' descriptions highlight that context is an important aspect of physical activity among individuals with physical disabilities through discussion of motility and the role of the lived body. Aspects of the aquatic environment create a setting that facilitates forgetfulness of the lived body's presence. Instructors and participants alike will benefit from learning the difference between the object body and the lived body, listening to the body's voice as they participate in physical activity .

Family attitudes toward the deinstitutionalization of individuals with developmental disabilities in Ontario : a quality of life analysis

The deinstitutionalization of individuals with developmental disabilities to community-based residential services is a pervasive international trend. Although controversial, the remaining three institutions in Ontario were closed in March of 2009. Since these closures, there has been limited research on the effects of deinstitutionalization. The following retrospective study evaluated family perceptions of the impact of deinstitutionalization on the quality of life of fifty-five former residents one year post-closure utilizing a survey design and conceptual quality of life framework. The methods used to analyze the survey results included descriptive statistical analyses and thematic analyses. Overall, the results suggest that most family members are satisfied with community placement and supports, and report an improved quality of life for their family member with a developmental disability. These findings were consistent with previously published studies demonstrating the short-term and long-term benefits of community living for most individuals with developmental disabilities and their families.