Search results for ‘Subject term:"learning disabilities"’ Sort:
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Developing an approach to involving children with autistic spectrum disorders in a social care research project
- Authors:
- BERESFORD Bryony, et al
- Journal article citation:
- British Journal of Learning Disabilities, 32(4), December 2004, pp.180-185.
- Publisher:
- Wiley
A project researching user views on the outcomes of social care and support services for disabled children and their families presented new challenges to a research team. While they had experience of working with other groups of disabled children, this project was the first in which they sought to work directly with children with autistic spectrum disorders. Reports the process by which the research design and methods used were developed and tailored to the needs and abilities of these children. The key lesson learnt was the value of crossing disciplines, research areas and professional boundaries when trying to identify ways of working with a 'hard to reach' group.
Engaging young people with Autism Spectrum Disorder in research interviews
- Authors:
- HARRINGTON Caitlin, et al
- Journal article citation:
- British Journal of Learning Disabilities, 42(2), 2014, pp.153-161.
- Publisher:
- Wiley
This study draws on the first author's doctoral research on the mainstream schooling experiences of young people with autism spectrum disorder (ASD) and their parents in Queensland, Australia. The aims are to share some of the practical strategies that were adapted and developed to engage the young people in the research and to critically reflect on what this means for future inclusive methodological approaches in this area. The key message is that diagnostic-related assumptions about impairments can lead researchers to develop strategies which exclude or restrict rather than maximise participation of disabled people in research. To enable young people with ASD to provide rich and meaningful insights researchers need to acknowledge and plan creatively and flexibly for the interactive dynamic that is unique to each individual as well as for needs which might be shared. (Publisher abstract)
Parents' perspectives on participation of young children with attention deficit hyperactivity disorder, developmental coordination disorder, and/ or autism spectrum disorder: a systematic scoping review
- Authors:
- COUSSENS Marieke, et al
- Journal article citation:
- Child: Care, Health and Development, 46(2), 2020, pp.232-243.
- Publisher:
- Wiley
Background: During the early years of a child's life, participation is essential for learning and development. Children with disabilities are at risk for decreased participation. The interplay between environment and participation is identified as one of the most important factors influencing successful participation. The objective of this scoping review was to synthesize peer‐reviewed literature about barriers and facilitators of participation according to the perspective of parents of children younger than 6 years with Attention Deficit Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), and/ or Developmental Coordination Disorder (DCD). Methods: The scoping review followed Arksey and O'Malley's framework. Relevant studies were identified by a comprehensive search of scientific databases (PubMed and Web of Science). Studies describing perspectives of parents regarding their child's participation, written in English, and published between 2001 and September 2017 were included. Results: A total of 854 articles were retrieved, with 13 meeting the criteria. Elements contributing to perceived barriers and facilitators were identified and organized according to the International Classification of Functioning, Child–Youth framework. Concepts contained in these studies were linked to “activities and participation” (general tasks and demands, such as bedtime and dinner routines, and social, civic life, such as play and leisure). Environment‐focused factors identified were situated on “support and relationships, ” “attitudes, ” and “services, systems, and policies.” Conclusion: The review revealed guidelines focusing on family‐centred care, communication with, and providing information to parents with young children with developmental disabilities (ADHD, DCD, and/ or ASD). (Edited publisher abstract)
Mental capacity to consent to research? Experiences of consenting adults with intellectual disabilities and/or autism to research
- Authors:
- HAMILTON Jahanese, et al
- Journal article citation:
- British Journal of Learning Disabilities, 45(4), 2017, pp.230-237.
- Publisher:
- Wiley
Accessible Summary: The NHS Constitution states that all patients should have opportunity to take part in approved research. This study asked clinical researchers how they include people with intellectual disabilities and/or autism in research. Many barriers were identified that relate to making mental capacity judgements. Many researchers agreed new resources that support consent and capacity judgements for research would be helpful and gave some ideas about what could help. Background: Adults with intellectual disabilities and/or autism are often excluded from participating in health and healthcare research. Understanding study information, which is an important aspect of demonstrating capacity to give informed consent, can be a particular challenge. This study surveyed clinical researchers to discover: (i) their experiences of assessing mental capacity for research; (ii) what methods they used to facilitate the inclusion of adults with intellectual disabilities and/or autism; and (iii) their views about a proposal to develop new resources to facilitate mental capacity judgements with adults with intellectual disabilities and/or autism for informed consent for research. Methods: Clinical researchers in North East England who conduct research with NHS patients with intellectual disabilities and/or autism were invited to participate in a 22-item self-completed semi-structured questionnaire survey, either online or on paper. Results: Twenty-one clinicians completed the survey (response rate 30.4%). Participants reported on 18 research studies which included people with intellectual disabilities and/or autism. In many studies people who lacked capacity to give informed consent were excluded, and often shortcuts were taken in judging capacity. Limited adaptations to support capacity were used. Respondents welcomed the proposal of developing assistive resources that could support capacity judgements and informed consent to research. Conclusions: To improve access to research for people with intellectual disabilities and/or autism, researchers need robust methods to facilitate informed consent and mental capacity judgements. Future research should determine which assistive resources show potential to support informed consent and capacity decisions, and whether such resources could improve inclusion in research. (Edited publisher abstract)
Developing support and services for children and young people with a learning disability, autism or both
- Author:
- NHS ENGLAND
- Publisher:
- NHS England
- Publication year:
- 2017
- Pagination:
- 37
- Place of publication:
- London
The document provides guidance for Transforming Care Partnerships and their local partners in Clinical Commissioning Groups and Local Authorities in commissioning support and services for children and young people with learning disability, autism or both who display behaviour that challenges. It supplements Building the Right Support and the National Service Model, to ensure that plans are inclusive of children and young people. It is structured around nine core principles that describe what good services and support look like for children and young people. These include having a meaningful everyday life; person-centred and coordinated care and support; support for family and care staff to help the child or young person live in the community; choice about where to live; and access to specialist health and social care in the community. Each section lists relevant legislation and guidance. Appendices provide information on what works when working in partnership with families and describes how services should change as a result of the service transformation. (Edited publisher abstract)
Care, Education and Treatment Reviews for children and young people: code and toolkit. A guide for commissioners, panel members and people who provide support
- Author:
- NHS ENGLAND
- Publisher:
- NHS England
- Publication year:
- 2017
- Pagination:
- 59
- Place of publication:
- Leeds
This Code and Toolkit provides framework to ensure that Care, Education and Treatment Reviews (CETRs) for children and young people who either have been, or may be about to be admitted to a specialist mental health or learning disability hospital are delivered to a consistently high standard across England. It also provides commissioners with tools to help them carry out CETRs. It outlines the main principles for delivering CETRs, which include the principles of human rights, child -centeredness and co-production; the standards for each principle; and the criteria used to evaluate the standards in practice. It also outlines the roles of CETR experts by experience and clinical experts; provides a checklist for commissioners and providers to use; and a set of hospital discharge steps and standards to help commissioners navigate through the discharge process. (Edited publisher abstract)