Related Experiment Video
Updated: May 13, 2025
06:16
Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
3.5K
Inequities in Community-Engaged Autism Research: Community Member Perspectives
Summary
Autistic individuals and their communities desire inclusive autism research and participation. Addressing engagement gaps requires shared decision-making and trusted platforms for diverse representation in research.
Area of Science:
- Neuroscience
- Public Health
- Social Sciences
Background:
- Autistic individuals have historically faced exclusion and barriers in research participation.
- Community engagement barriers lead to isolation and distrust among under-engaged autism community members.
- Limited information on research opportunities exacerbates these issues.
Purpose of the Study:
- To identify gaps in community-engaged research (CEnR) within autism research.
- To examine perspectives of autistic adults, caregivers, and service providers on CEnR.
- To gather suggestions for improving autism research priorities and engagement.
Main Methods:
- Qualitative narrative inquiry with 53 autism stakeholders.
- Data collected using a 16-item semi-structured instrument.
- Thematic coding of focus group (n=6) and individual interview (n=47) transcripts.
Main Results:
- Participants noted a lack of diverse representation in autism CEnR and research populations.
- An inclusive approach with shared ownership and a trusted platform is crucial.
- This approach is key to developing effective and inclusive autism research strategies.
Conclusions:
- Autism stakeholders value research inclusivity and are keen to participate.
- Individuals can make their own participation decisions, with or without support.
- Research on adults with autism is vital for addressing complex care access issues.
More Related Videos
08:42A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research
Published on: July 31, 2017
8.2K
08:30Author Spotlight: Exploring Autism Spectrum Disorder Symptoms in Fruit Flies — Genetic Models and Behavioral Tests
Published on: September 6, 2024
1.4K
Related Concept Videos
01:19Autism Spectrum Disorder
38
Autism spectrum disorder (ASD) is a neurodevelopmental condition marked by persistent deficits in social communication and interaction alongside restrictive and repetitive behaviors or interests. ASD is sometimes accompanied by intellectual impairment.
These core symptoms manifest differently among individuals, ranging from mild to severe. The disorder's complexity extends beyond its clinical presentation, encompassing a diverse range of biological, cognitive, and sociocultural influences.
These core symptoms manifest differently among individuals, ranging from mild to severe. The disorder's complexity extends beyond its clinical presentation, encompassing a diverse range of biological, cognitive, and sociocultural influences.
38
01:30Community Based Intervention
23
Community-based interventions in mental health represent a paradigm shift from institution-centered care to treatments embedded within the fabric of local communities. By prioritizing inclusion and leveraging existing societal structures, this approach fosters a supportive environment conducive to addressing mental health challenges while promoting individual dignity and agency.
Foundations of Community Mental Health Programs
Central to the success of community-based interventions is the...
Foundations of Community Mental Health Programs
Central to the success of community-based interventions is the...
23
01:26Modeling in Therapy
33
Modeling, a key technique in therapy, uses observational learning to help clients acquire and practice new skills by watching therapists demonstrate desired behaviors. This approach, rooted in Albert Bandura's concept of vicarious learning, plays a significant role in therapeutic interventions for various psychological conditions, including social anxiety, ADHD, and depression.
Participant Modeling
Participant modeling involves therapists demonstrating calm and effective behaviors in...
Participant Modeling
Participant modeling involves therapists demonstrating calm and effective behaviors in...
33
02:16Surveys
14.7K
Often, psychologists develop surveys as a means of gathering data. Surveys are lists of questions to be answered by research participants, and can be delivered as paper-and-pencil questionnaires, administered electronically, or conducted verbally. Generally, the survey itself can be completed in a short time, and the ease of administering a survey makes it easy to collect data from a large number of people.
14.7K
01:22Bias
3.7K
Bias refers to any tendency that prevents a question from being considered unprejudiced. In research, bias occurs when one outcome or answer is selected or encouraged over others in sampling or testing. Bias can occur during any research phase, including study design, data collection, analysis, and publication.
In statistics, a sampling bias is created when a sample is collected from a population, and some members of the population are not as likely to be chosen as others (remember, each member...
In statistics, a sampling bias is created when a sample is collected from a population, and some members of the population are not as likely to be chosen as others (remember, each member...
3.7K
01:56Ethics in Research
22.8K
Today, scientists agree that good research is ethical in nature and is guided by a basic respect for human dignity and safety. However, this has not always been the case. Modern researchers must demonstrate that the research they perform is ethically sound.
22.8K