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Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
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1 to 3 of 3 Research Studies DisplayedValdez RS, Lyon SE, Wellbeloved-Stone C
Engaging the disability community in informatics research: rationales and practical steps.
There is an opportunity for the informatics community to expand its impact by focusing on the disability community as a health disparity population. Digital health technologies can be enhanced by approaching disability from a more holistic framework, simultaneously accounting for multiple forms of disability and the ways that disability intersects with other forms of identity. The authors offer a set of guidelines for effective engagement and argue that such engagement is critical to creating digital health technologies which more fully meet the needs of all disabled individuals.
AHRQ-funded; HS023849.
Citation: Valdez RS, Lyon SE, Wellbeloved-Stone C .
Engaging the disability community in informatics research: rationales and practical steps.
J Am Med Inform Assoc 2022 Oct 7;29(11):1989-95. doi: 10.1093/jamia/ocac136..
Keywords: Patient and Family Engagement, Disabilities, Health Information Technology (HIT)
Adolphe S, Fernandez-Pastrana I, Scott H
EASE-ing the way for pediatric providers and parents: the Engagement and Access to Special Education (EASE) Clinic.
Primary Care Providers (PCPs) are tasked by the American Academy of Pediatrics to identify children who need special education and ensure that those children receive appropriate related services provided by the Individuals with Disabilities Education Act (IDEA). The IDEA entitles children between the ages of 3 and 21 to free education through individualized education programs (IEPs), and other related supports. The extent of PCP knowledge about the IDEA, special education, and available related support services and how to assess them, is largely unknown. Existing research indicates there is a lack of knowledge, training, and confidence in providers about special education. Boston Medical Center’s (BMC) Engagement and Access to Special Education (EASE) clinic was developed to provide support to the parents and PCPs of children with special education needs. The purpose of this article was to introduce and describe the EASE clinical model as a useful method for PCPs to strengthen their ability to provide appropriate and available comprehensive care to their patients requiring special education. The authors reported that of the 14,000 pediatric patients at the Boston Medical Center, 308 children were referred to the EASE clinic between its inception in 2017 and May 2021. The majority of children were Black non-Hispanic, English-speaking, and male, with an average age of 8.3 at first clinic. During that same time 452 total visits were completed, with a waiting list of less than 90 days. The authors conclude that for primary care practices with patients with special education needs, the BMC EASE clinic can serve as a useful model for improving their ability to provide care.
AHRQ-funded; HS022242.
Citation: Adolphe S, Fernandez-Pastrana I, Scott H .
EASE-ing the way for pediatric providers and parents: the Engagement and Access to Special Education (EASE) Clinic.
Acad Pediatr 2022 May-Jun;24(4):705-07. doi: 10.1016/j.acap.2022.02.011..
Keywords: Children/Adolescents, Caregiving, Patient and Family Engagement, Vulnerable Populations, Disabilities
Crossman MK, Warfield ME, Kotelchuck M
Associations between early intervention home visits, family relationships and competence for mothers of children with developmental disabilities.
The researchers examined the association between intensity of home visits in early intervention (EI), perceived helpfulness of home visits in EI, and positive family relationships as predictors of maternal competence at age 3, as well as moderating effects of predictors, controlling for child characteristics, family demographics, and negative life events. They found that the intensity of home visits was not significantly associated with maternal competence at age 3.
AHRQ-funded; HS000063.
Citation: Crossman MK, Warfield ME, Kotelchuck M .
Associations between early intervention home visits, family relationships and competence for mothers of children with developmental disabilities.
Matern Child Health J 2018 Apr;22(4):599-607. doi: 10.1007/s10995-018-2429-x.
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Keywords: Children/Adolescents, Disabilities, Family Health and History, Patient and Family Engagement