Engaging Adults with Intellectual and Developmental Disabilities as "Citizen Scientists" to Transform Health Care Accessibility.

IF 1.9 3区医学 Q2 EDUCATION, SPECIAL

Intellectual and Developmental Disabilities Pub Date : 2026-01-01 Epub Date: 2026-07-24 DOI:10.1080/19349491.2026.2682771

Megan Cvitanovic, Alex Vera Szawranskyj, Zakaria N Doueiri, Justin Steinberg, Amanda Young, Sue Digre, Colleen Vega, Kim Hing, Bradley Margetts, Timothy Seay-Morrison, Sarah Taylor, Lauren Clarke, Lisa G Rosas, Abby C King, Holly K Tabor

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Abstract

Adults with intellectual and developmental disabilities (AIDD) experience persistent barriers to accessing and participating in health care yet are rarely engaged as partners in efforts to improve accessibility. This study used the evidence-based Our Voice (OV) citizen science approach to engage AIDD in identifying barriers and facilitators to primary care access and generating actionable solutions. Twelve participants (six AIDD and six adults without IDD) documented accessibility conditions across three medical clinics using photographs and narratives. Analysis of 170 photographs and 154 narratives identified five themes: (1) sensory considerations, (2) informational materials, (3) signage and wayfinding, (4) accommodations, and (5) physical accessibility. Findings demonstrate the feasibility of engaging AIDD in structured, clinic-based accessibility assessment and suggest a participatory framework that may inform research and quality improvement initiatives aimed at promoting disability-inclusive health care.

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让有智力和发育障碍的成年人成为“公民科学家”，改变卫生保健的可及性。

患有智力和发育障碍的成年人在获得和参与卫生保健方面一直面临障碍，但很少作为合作伙伴参与改善可及性的努力。本研究采用基于证据的“我们的声音”（OV）公民科学方法，让艾滋病患者参与识别初级保健获取的障碍和促进因素，并制定可行的解决方案。12名参与者（6名艾滋病患者和6名无缺碘症的成年人）使用照片和叙述记录了三个医疗诊所的无障碍条件。对170张照片和154篇叙述的分析确定了五个主题：(1)感官考虑，(2)信息材料，(3)标志和寻路，(4)住宿，(5)物理可达性。研究结果表明，将艾滋病纳入结构化的、基于诊所的无障碍评估是可行的，并建议建立一个参与性框架，为旨在促进包容残疾人的医疗保健的研究和质量改进举措提供信息。

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来源期刊

Intellectual and Developmental Disabilities Multiple-

CiteScore

2.60

自引率

11.10%

发文量

期刊介绍： Intellectual and Developmental Disabilities is dedicated to meeting the information needs of those who seek effective ways to help people with mental retardation. The journal reports new teaching approaches, program developments, administrative tools, program evaluation, service utilization studies, community surveys, public policy issues, training and case studies, and current research in mental retardation. Intellectual and Developmental Disabilities is a peer-reviewed journal whose consulting editors represent a broad spectrum of settings: universities, research centers, public and private residential care facilities, and specialized community service agencies.