Co-designing with adolescents with autism spectrum disorder: a participatory action research approach

Randy Zhu investigated how adolescents with autism spectrum disorder (ASD) can participate as co-designers in an extended iterative software design process. He found that participants expect to make design decisions for applications built for them and parents, community group and fellow participants play a pivotal role in supporting a longitudinal ASD co-design study

DEECD Early Childhood Intervention Reform Project

This literature review was commissioned by the Office for Children and Early Childhood Development, Department of Education and Early Childhood Development (DEECD), as part of its Early Childhood Intervention Services (ECIS) Reform Project (Stage 2): Developing Options and Next Steps. This Project aims to significantly enhance the efficiency, effectiveness and sustainability of Victoria’s ECIS system and improve outcomes for children with a disability or developmental delay and their families. Early childhood intervention services (ECIS) support children with a disability or developmental delay from birth to school entry and their families. ECIS provides special education, therapy, counselling, service planning and coordination, assistance and support to access services such as kindergarten and child care. The services funded through DEECD are provided by government Specialist Children\u27s Services teams and non-government Early Childhood Intervention agencies. In addition to the services provided by ECIS teams and agencies, the state and federal governments fund a range of complementary programs to support young children with developmental disabilities and their families. These include initiatives to support families (My Time parent groups, Family Support Packages), services to support inclusion (Preschool Field Officers, Inclusion Support Facilitators), and funding to support particular disability groups (Helping Children with Autism packages). These additional services and supports, together with the ECIS teams and agencies, make up the totality of early childhood intervention provision for young children with disabilities. The focus of the literature review is research on contemporary Australian and international evidence-based service delivery models for children with a disability, developmental delay or additional needs aged 0-8 years

Guidelines for Conducting Research Studies with the Autism Community

There has been growing awareness of the concern expressed by autism communities that the majority of research conducted reflects neither the priorities of autistic people and their families or their needs. Further, many autistic people report that they feel unable to influence research and desire greater involvement in the research process. The aim of our current work is to provide practical guidelines for researchers to consider when conducting autism research in order to increase involvement, collaboration and trust between researchers and the autism community. These guidelines are based on the output of focus groups and interview discussions with 22 autistic adults and 8 parents of autistic children, conducted during a series of workshops carried out as collaboration between the research network, Autism@Manchester and Salfordautism, an autism support group led and run by autistic professionals. The guidelines are organised into four sections: (1) Pre-study considerations (2) Recruitment of Participants (3) Study visit Considerations (4) Post-study Considerations. These sections are structured to reflect the research pathway and allow researchers to understand more easily how to incorporate the recommendations into their research. The recommendations promote effective communication and equal partnerships between the autism and research communities so that the needs of participants pre-, during and post- research are taken into account and that they are supported to become involved in research at the level they choose. It is hoped that by implementing transparent and participatory approaches to their work, researchers might be able to reduce some of the dissatisfaction that the autistic community feel towards research and lead to higher standards in autism research

Community-Based Participatory Research: Lessons Learned from the Centers for Children’s Environmental Health and Disease Prevention Research

Over the past several decades there has been growing evidence of the increase in incidence rates, morbidity, and mortality for a number of health problems experienced by children. The causation and aggravation of these problems are complex and multifactorial. The burden of these health problems and environmental exposures is borne disproportionately by children from low-income communities and communities of color. Researchers and funding institutions have called for increased attention to the complex issues that affect the health of children living in marginalized communities—and communities more broadly—and have suggested greater community involvement in processes that shape research and intervention approaches, for example, through community-based participatory research (CBPR) partnerships among academic, health services, public health, and community-based organizations. Centers for Children’s Environmental Health and Disease Prevention Research (Children’s Centers) funded by the National Institute of Environmental Health Sciences and U.S. Environmental Protection Agency were required to include a CBPR project. The purpose of this article is to provide a definition and set of CBPR principles, to describe the rationale for and major benefits of using this approach, to draw on the experiences of six of the Children’s Centers in using CBPR, and to provide lessons learned and recommendations for how to successfully establish and maintain CBPR partnerships aimed at enhancing our understanding and addressing the multiple determinants of children’s health

Developing and Evaluating Complex Interventions: Enhancing the Role of Qualitative Research

The use of qualitative research methods alongside randomized controlled trials of health-care interventions have the potential to contribute to the development and evaluation of both complex and other health interventions. Qualitative evaluations of interventions are rarely reported but can provide insight into the intervention process, and the feasibility and acceptability of the intervention, to improve and adapt interventions

The Interpretive Approach as a Means of Understanding the Misunderstood

People’s experiences of health and illness are important areas of health research and practice. The interpretive process, and more significantly the biographical approach (Denzin, 1989), is an approach in which there is a focus on personal epiphanies which shape and reflect the stories people tell of their experiences. Dolby-Stahl (1985) contends stories of personal experience sit within the genre of folklore and that the reading of such stories must take into account the social, cultural, and historical contexts which influence and give meaning to experience

Action on Autism Research in Scotland. Final Report

An advanced international multidisciplinary, multi-agency research seminar series held between November 2013 and November 2014

From ivory tower to inclusion: Stakeholders’ experiences of community engagement in Australian autism research

Autistic people, and other community stakeholders, are gaining increasing recognition as valuable contributors to autism research, resulting in a growing corpus of participatory autism research. Yet, we know little about the ways in which stakeholders practice and experience community engagement in autism research. In this study, we interviewed 20 stakeholders (academics, autistic people, family members/careers, research students, and service providers) regarding their experiences of community engagement in Australian autism research. Through reflexive thematic analysis of interview data, we generated four themes. First, our participants perceived academia as an “ivory tower,” disconnected from community members’ lives and priorities. Second, our participants identified that different stakeholders tended to hold different roles within their research projects: academics typically retained power and control, while community members’ roles tended toward tokenism. Third, our participants spoke of the need to “bridge the gap” between academia and the community, highlighting communication, accessibility, and planning as key to conducting effective participatory research. Lastly, participants emphasized the changing nature of autism research, describing participatory research as “the way of the future.” Our findings reflect both the progress achieved to date, and the challenges that lie ahead, as the field advances toward genuine co-production of autism research

Surveying Persons with Disabilities: A Source Guide (Version 1)

As a collaborator with the Cornell Rehabilitation Research and Training Center on Disability Demographics and Statistics, Mathematica Policy Research, Inc. has been working on a project that identifies the strengths and limitations in existing disability data collection in both content and data collection methodology. The intended outcomes of this project include expanding and synthesizing knowledge of best practices and the extent existing data use those practices, informing the development of data enhancement options, and contributing to a more informed use of existing data. In an effort to provide the public with an up-to-date and easily accessible source of research on the methodological issues associated with surveying persons with disabilities, MPR has prepared a Source Guide of material related to this topic. The Source Guide contains 150 abstracts, summaries, and references, followed by a Subject Index, which cross references the sources from the Reference List under various subjects. The Source Guide is viewed as a “living document,” and will be periodically updated