Adapting and Testing a Novel Method of Engagement in Research: Centering Autistic Perspectives in Behavioral Intervention Discussions
试验速览
- 阶段
- 不适用
- 状态
- 尚未招募
- 入组人数
- 200
- 试验地点
- 2
- 主要终点
- Brief Engagement Poll
研究概览
简要总结
The Centering Autistic Perspectives for Behavioral Interventions Discussions (CAPBID) PCORI Science of Engagement Award will examine different community engagement approaches for bringing together autistic people, Applied Behavioral Analysis (ABA) providers, and other members of the autism community to advance a shared equitable dialogue around research priorities for ABA-related research. One of these approaches will be based on existing transformative and restorative justice methods and frameworks. This project also utilizes a community-driven participatory research approach that will center autistic leadership in all aspects of the project.
The investigators hope that this research will pave the way for creating spaces where autistic people are heard in their experiences and can collaborate effectively with open-minded ABA providers about how to advance the next generation of care and research in the field. More broadly, the investigators aim to create engagement approaches that may be used to have conversations around critical and difficult issues faced by the autistic and autism communities, as well as other marginalized communities.
详细描述
Ensuring systematically marginalized populations have access to clinical care that is accessible and meaningful is a vital public health issue. However, many such communities have concerns about available supports and/or lack trust in researchers that study them, precluding advancement of the very comparative clinical effectiveness research (CER) that could address these needs. It is presently unknown what engagement approaches are best suited to bring patients and other stakeholders together to develop shared CER priorities. While frameworks exist for such engagement, no rigorous, comparative research on consequent methods yet exists.
An urgent instance of this gap is the relationship between the autistic community and Applied Behavior Analysis (ABA)-based intervention, which is both viewed as uniformly beneficial by practitioners and enshrined in law by policymakers yet is increasingly denounced and viewed as harmful by autistic adults. This yields a growing chasm between the care that is most widely available to this population, and the willingness of autistic people and their families to engage with it - begging the question of what engagement approach can begin to bridge this rift.
One common approach to bringing stakeholders together to advance CER is to engage them in equitable shared decision-making processes. However, some evidence suggests there may be a unique value to centering marginalized perspectives to more effectively promote equity of engagement and prioritization of CER goals acceptable to the full range of stakeholders. Transformative and Restorative Justice practices offer methods for engagement that offer such centering, particularly around circumstances where some have experienced harm. Thus, a comparison of such approaches, applied to the autism and ABA debate, offers a rich opportunity to both address a pressing needed in this specific community, and identify effective methods for CER engagement in marginalized communities more broadly.
Study Aims:
To develop a Transformative and Restorative Engagement Circle (TREC) approach for centering autistic people in ABA-related CER priority setting.
研究设计
- 研究类型
- Interventional
- 分配方式
- Randomized
- 干预模型
- Parallel
- 主要目的
- Basic Science
- 盲法
- Double (Investigator, Outcomes Assessor)
盲法说明
Quantitative data analysts will also be masked.
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •Adults over the age of 18
- •Individuals who have had experience with Applied Behavior Analysis (ABA) at any time in their lives who is:
- •An Autistic individual who experienced Applied Behavior Analysis or
- •A practitioner who currently or previously was involved in the delivery of Applied Behavior Analysis
- •Able to communicate fluently in English
- •Individuals who do not report the endpoint values on the AAPS:
- •ABA should never be used for autistic people
- •ABA is the only evidence-based intervention for autism
排除标准
- •Under the age of 18,
- •Unable to communicate in English
结局指标
主要结局
Brief Engagement Poll
时间窗: Up to one day after the start of the intervention (engagement approach) delivery and up to 24 hours after completion of the intervention (engagement approach) delivery
3-item poll indicating perceived quality ("ability to engage you as a member of our team in the meeting"), value ("Was today's meeting a good use of your time"), and contribution ("To what extent did you contribute to project-related processes") to the process, developed for autistic research partnerships by AASET
ABX Stakeholder Toolkit
时间窗: At baseline, up to one day after the start of the intervention (engagement approach) delivery and up to 24 hours after the completion of the intervention (engagement approach) delivery
Likert-type measure, with items including, "The study values the differences of contributing stakeholders," "I feel the study team has a clear understanding of stakeholders' expertise, strengths, and roles," "study stakeholders engage in open communication and demonstrate a willingness to listen to others," "My fellow stakeholder participants respect what I have to say, even when they do not agree with me." (post-engagement trust) "Participating in these activities has helped me better understand research on \[this topic\]," (sense of agency) "Individuals whose lives are most impacted by \[this topic\] are well represented," "I have decision-making authority and believe I contribute meaningfully to relevant outcomes and objectives for the study," "I feel that I have been compensated appropriately for my time and expertise as a stakeholder," "I have learned a lot from participating in these activities," "I feel I could explain the ABX study to others." (sense of buy-in)
Genetic Alliance Engagement Assessment Tool
时间窗: At baseline, up to one day after the start of the intervention (engagement approach) delivery and up to 24 hours after the completion of the intervention (engagement approach) delivery
Quantitative engagement metrics, including the degree to which "stakeholders report satisfaction in involvement in the research process and feel adequately informed about the project activities and results," and "Stakeholders report that the research is valuable to them and that they have contributed to setting and revising project priorities." as well as self-report items such as "A sense of partnership among team members and investigators has been established," "All team members are given equal opportunity to provide input," "Input from team members is incorporated into the decision-making process," and "There is clear communication about how input from team members is incorporated into decisions."
次要结局
- ABA Willingness Tool(Up to 24 hours after completion of the intervention (engagement approach) delivery, up to 1-week after completion of the intervention, and up to 1-month after completion of the intervention.)
- AAPS(During screening for study enrollment and up to 1 week after completion of the intervention (engagement approach) delivery.)
- AASPIRE CBPR Check In(At baseline, up to one day after the start of the intervention (engagement approach) delivery and up to 24 hours after the completion of the intervention (engagement approach) delivery)
- TREC and SEED Fidelity Tools(Up to 24 hours after each day of intervention (engagement approach)delivery.)
- Qualitative Interviews(Up to three weeks after the completion of the intervention (engagement approach) delivery.)
研究者
Matthew Lerner
Associate Professor
Drexel University