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Research Studies is a monthly compilation of research articles funded by AHRQ or authored by AHRQ researchers and recently published in journals or newsletters.
Results1 to 7 of 7 Research Studies Displayed
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.
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
Sobotka SA, Lynch E, Quinn MT
Unmet respite needs of children with medical technology dependence.
Children with medical technology dependency (MTD) require a medical device to compensate for a vital body function and substantial nursing care. As such, they require constant high-level supervision. Respite care provides caregivers with a temporary break, and is associated with reduced stress; however, there are often barriers. The study utilizes mixed methodology with the National Survey of Children with Special Health Care Needs (NS-CSHCN) and semistructured interviews with state-wide care coordinators to understand the gap for respite care services.
Citation: Sobotka SA, Lynch E, Quinn MT . Unmet respite needs of children with medical technology dependence. Clin Pediatr 2019 Oct;58(11-12):1175-86. doi: 10.1177/0009922819870251..
Keywords: Children/Adolescents, Medical Devices, Disabilities, Caregiving, Home Healthcare, Care Coordination
Burgdorf J, Mulcahy J, Amjad H
Family caregiver factors associated with emergency department utilization among community-living older adults with disabilities.
This study examined characteristics of family caregivers of older community-living adults with disabilities that use emergency departments (EDs). They found in their sample of 2521 community-living older adults that have visited the ED one or more times within 12 months of their interview that the primary caregivers provided greater than 40 hours of care per week, helped with health care tasks, or experienced physical strain.
Citation: Burgdorf J, Mulcahy J, Amjad H . Family caregiver factors associated with emergency department utilization among community-living older adults with disabilities. J Prim Care Community Health 2019 Jan-Dec;10:2150132719875636. doi: 10.1177/2150132719875636..
Keywords: Elderly, Emergency Department, Disabilities, Healthcare Utilization, Caregiving
Zuckerman KE, Chavez AE, Regalado Murillo C
Disparities in familiarity with developmental disabilities among low-income parents.
Parent knowledge about developmental disabilities (DDs) may facilitate access to DD care; however, parents may vary in their knowledge and familiarity with common DDs. The objective of this study was to assess racial/ethnic and language differences in low-income families' familiarity, knowledge, and personal experience with DDs. The investigators concluded that low-income Latino-LEP and other race parents have less familiarity or personal experience with DDs and are less aware of early signs of DDs compared to low-income white parents.
Citation: Zuckerman KE, Chavez AE, Regalado Murillo C . Disparities in familiarity with developmental disabilities among low-income parents. Acad Pediatr 2018 Nov - Dec;18(8):944-51. doi: 10.1016/j.acap.2018.06.011..
Keywords: Disabilities, Children/Adolescents, Caregiving, Health Literacy, Low-Income, Vulnerable Populations, Racial / Ethnic Minorities
Jolles MP, Lee PJ, Javier JR
Shared decision-making and parental experiences with health services to meet their child's special health care needs: racial and ethnic disparities.
This study investigated the relationship between shared decision-making (SDM) and parents’ frustrations in getting health needs met for their special needs child. Secondary analysis was done on data from the 2009-2010 National Survey of Children with Special Health Care Needs. More Whites than Blacks engaged in SDM, and when Blacks did engage they had a higher odds of negative experiences than Whites. Researchers weren’t sure what the cause was of that, but speculated it was due to increased awareness of service challenges.
Citation: Jolles MP, Lee PJ, Javier JR . Shared decision-making and parental experiences with health services to meet their child's special health care needs: racial and ethnic disparities. Patient Educ Couns 2018 Oct;101(10):1753-60. doi: 10.1016/j.pec.2018.05.022..
Keywords: Access to Care, Caregiving, Children/Adolescents, Decision Making, Disabilities, Disparities, Racial / Ethnic Minorities
Crossman MK, Parish SL, Hauser-Cram P
The influence of early intervention, informal support and the family environment on trajectories of competence for fathers raising children with developmental disabilities.
The aims of this study are: (1) To determine the trajectory of parental competence for fathers of children with developmental disabilities from age 3 to age 15; (2) Controlling for child and family characteristics, determine the main effects of the family environment, informal support, and early intervention (EI) services on paternal competence when their child with a developmental disability was age 3; and (3) To determine whether there were lasting effects of the family environment, informal support, and the EI service system on differences in paternal competence over time.
Citation: Crossman MK, Parish SL, Hauser-Cram P . The influence of early intervention, informal support and the family environment on trajectories of competence for fathers raising children with developmental disabilities. Res Dev Disabil 2018 Oct;81:122-33. doi: 10.1016/j.ridd.2018.04.025..
Keywords: Caregiving, Children/Adolescents, Disabilities, Family Health and History
Coyle CE, Putman M, Kramer J
The role of aging and disability resource centers in serving adults aging with intellectual disabilities and their families: findings from seven states.
The purpose of this project was to assess the activities of aging and disability resource centers (ADRCs) as they seek to serve older adults with intellectual disabilities and their family caregivers. Results of this qualitative analysis indicate that ADRCs are not focusing explicitly on adults aging with intellectual and developmental disabilities and their family caregivers.
Citation: Coyle CE, Putman M, Kramer J . The role of aging and disability resource centers in serving adults aging with intellectual disabilities and their families: findings from seven states. J Aging Soc Policy 2016;28(1):1-14. doi: 10.1080/08959420.2015.1096142.
Keywords: Caregiving, Disabilities, Elderly, Long-Term Care