National Healthcare Quality and Disparities Report
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- Access to Care (2)
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AHRQ Research Studies
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Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
Results
1 to 23 of 23 Research Studies DisplayedFrehn JL, Li JN, Liu KR
Implementation of a universal screening and follow-up care system for pediatric developmental and behavioral health in federally qualified health center sites.
This study assessed the results of implementing an intervention to increase screening of developmental delays in children at six federally qualified health center (FQHC) sites in Northern California from April 2014 to April 2017. The goals of the intervention were to increase (a) standardized developmental screening at recommended intervals and (b) follow-up care and support for early intervention services. The aim was to optimize each site's screening processes, supported by an automated electronic tablet-based system. Social workers were hired to conduct follow-up clinical assessments, provide psychosocial education and treatment, provide referrals, provide case management support, and collaborate with service partners. During the last year of the intervention, when tablet-based screening was adopted, the sites screened an estimated 6,550 children ages 0-18 at 23 intervals in three domains (developmental, autism, and psychosocial/behavioral), compared to a baseline where they screened children ages 0-3 at four intervals in one domain. Screening rates increased from 65.3% to 75.5% after automation was extended from the first to the second site and continued its’ increase to 91.8% after automation was expanded to the remaining sites. Ranges for follow-up visits were between 74% and 88%.
AHRQ-funded; HS000046.
Citation: Frehn JL, Li JN, Liu KR .
Implementation of a universal screening and follow-up care system for pediatric developmental and behavioral health in federally qualified health center sites.
Fam Syst Health 2023 Dec; 41(4):454-66. doi: 10.1037/fsh0000803..
Keywords: Children/Adolescents, Disabilities, Screening, Implementation
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
Kenney MK, Chanlongbutra A, Fanflick PL
AHRQ Author: Chanlongbutra A
Systems of care among children and youth with special health care needs with and without adverse childhood events: National Survey of Children's Health 2016-2017.
The purpose of the study was to compare Children and Youth with Special Health Care Needs (CYSHCN) with non-CYSHCN in the likelihood of experiencing Adverse Childhood Events (ACEs), and then document the differences in receiving recommended and needed health care services among CYSHCS with and without ACEs. The researchers studied a sample of 16,304 CYSHCN from the 2016 and 2017 National Survey of Children’s Health (N=71,181). The study found that CYHSCN had a greater likelihood of having each of the measured Adverse Childhood Events, and greater likelihood of experiencing aggregated levels of ACE’s than non-CYSHCN. In addition, an increase in ACEs was related to a decrease in the likelihood of a CYSHCN having a medical home with family-centered and coordinated care. Having one or greater ACEs increased the likelihood of having unmet mental health care needs. The study concluded that the researcher’s findings extend the current understanding of the relationship between CYSHCN and ACEs, and that the need for additional work to establish care systems for this vulnerable population continues.
AHRQ-authored.
Citation: Kenney MK, Chanlongbutra A, Fanflick PL .
Systems of care among children and youth with special health care needs with and without adverse childhood events: National Survey of Children's Health 2016-2017.
Disabil Health J 2022 Apr;15(2):101226. doi: 10.1016/j.dhjo.2021.101226..
Keywords: Children/Adolescents, Disabilities, Healthcare Delivery, Vulnerable Populations
Davidson L, Haynes SC, Favila-Meza A
Parent experience and cost savings associated with a novel tele-physiatry program for children living in rural and underserved communities.
This study investigated patient and therapist experience and cost savings from the payer perspective associated with a novel tele-physiatry program for children living in rural and underserved communities. Study setting was four school-based clinics in Northern California with a total of 268 encounters (124 telemedicine and 144 in-person). Parent and therapists reported no difference in experience and perceived quality of care between telemedicine and in-person encounters. For parents whose children received a telemedicine encounter, 54.8% reported no preference for their child’s subsequent encounter, 28.8% preferred a physiatrist telemedicine visit, and 12 preferred a physiatrist in-person visit. There was also an average cost savings of $100 per clinic owing to physician milage for in-person visits.
AHRQ-funded; HS025714.
Citation: Davidson L, Haynes SC, Favila-Meza A .
Parent experience and cost savings associated with a novel tele-physiatry program for children living in rural and underserved communities.
Arch Phys Med Rehabil 2022 Jan;103(1):8-13. doi: 10.1016/j.apmr.2021.07.807..
Keywords: Children/Adolescents, Telehealth, Health Information Technology (HIT), Healthcare Costs, Rural Health, Vulnerable Populations, Disabilities, Rural/Inner-City Residents
Lindly O, Eaves MC, Xu Y
Therapy use for U.S. school-aged children with developmental disabilities: state variation and determinants.
This study’s objective was to determine geographic variability and determinants of therapy use among school-aged U.S. children with development disabilities (DD). The authors aimed to (1) determine if therapy use varies significantly by state and (2) examine associations of health determinants with therapy use among U.S. school-aged children with DD. They conducted a secondary analysis of 2016 and 2017 National Survey of Children's Health data, with the sample including 9984 children with DD ages 6-17 years old. They found that overall, 34.6% of children used therapy services, with therapy use varying significantly across states. There were higher adjusted odds of therapy access associated with younger age, public insurance, functional limitations, individualized education program, frustration accessing services, and care coordination need. There were higher estimated annual Medicaid Home and Community-Based Service waiver costs associated with lower adjusted odds of therapy use in states with those waivers.
AHRQ-funded; HS000063.
Citation: Lindly O, Eaves MC, Xu Y .
Therapy use for U.S. school-aged children with developmental disabilities: state variation and determinants.
Disabil Health J 2022 Jan; 15(1):101198. doi: 10.1016/j.dhjo.2021.101198..
Keywords: Children/Adolescents, Disabilities
Lindly OJ, Martin AJ, Lally K
A profile of care coordination, missed school days, and unmet needs among Oregon children with special health care needs with behavioral and mental health conditions.
In order to inform Oregon's Title V needs assessment activities, researchers sought to characterize the state's subpopulation of children with special health care needs (CSHCN) with behavioral and mental health conditions (B/MHC) and to determine associations of care coordination with missed school days and unmet needs for this subpopulation. They found that among Oregon CSHCN with B/MHC, 48.9% missed 4 or more school days, 25% had one or more unmet health services need, and 14.8% had one or more unmet family support services need. They concluded that their approach to identify Oregon CSHCN with B/MHC may be adopted by other states endeavoring to improve health for this vulnerable subpopulation.
AHRQ-funded; HS000063.
Citation: Lindly OJ, Martin AJ, Lally K .
A profile of care coordination, missed school days, and unmet needs among Oregon children with special health care needs with behavioral and mental health conditions.
Community Ment Health J 2020 Nov;56(8):1571-80. doi: 10.1007/s10597-020-00609-4..
Keywords: Children/Adolescents, Disabilities, Behavioral Health, Care Coordination, Healthcare Delivery
Lindly O, Crossman M, Eaves M
Health literacy and health outcomes among children with developmental disabilities: a systematic review.
This systematic literature review focused on the impact of health literacy on health outcomes of children with developmental disabilities (DDs). A review of the literature of most of the major scientific databases was conducted. Out of 2,768 unique records identified, 53 full text articles were reviewed and four articles were included. The associations of family health literacy with health outcomes among children with DDs were mixed. Future research was recommended.
AHRQ-funded; HS000063.
Citation: Lindly O, Crossman M, Eaves M .
Health literacy and health outcomes among children with developmental disabilities: a systematic review.
Am J Intellect Dev Disabil 2020 Sep 1;125(5):389-407. doi: 10.1352/1944-7558-125.5.389..
Keywords: Children/Adolescents, Health Literacy, Disabilities, Evidence-Based Practice, Patient-Centered Outcomes Research, Outcomes
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.
AHRQ-funded; HS023007.
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
Chien AT, Toomey SL, Kuo DZ
Care quality and spending among commercially insured children with disabilities.
Researchers examined the prevalence of children with disabilities (CWD) within a commercially insured population and compared outpatient care quality and annual health plan spending levels for CWD relative to children with complex medical conditions without disabilities; children with chronic conditions that are not complex; and children without disabling, complex, or chronic conditions. The cross-sectional study comprised over 1M person-years of Blue Cross Blue Shield Massachusetts data for beneficiaries aged from 1 to 19 years. The researchers found that CWD were prevalent in the commercially insured population, with these children experiencing suboptimal levels of care which were comparable to non-CWD groups. They concluded that improving the care value for CWD involves a deeper understanding of what higher spending delivers and additional aspects of care quality.
AHRQ-funded; HS025299.
Citation: Chien AT, Toomey SL, Kuo DZ .
Care quality and spending among commercially insured children with disabilities.
Acad Pediatr 2019 Apr;19(3):291-99. doi: 10.1016/j.acap.2018.06.004..
Keywords: Quality of Care, Children/Adolescents, Disabilities, Healthcare Costs, Health Insurance
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.
AHRQ-funded; HS000063.
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 and Ethnic Minorities
Perez Jolles M, Thomas KC
Disparities in self-reported access to patient-centered medical home care for children with special health care needs.
The purpose of this study was to examine variation in caregiver service experience concordant with care in patient-centered medical home (PCMH) over time and by the characteristics of separate groups of children with special health care needs (CSHCNs). Researchers used 2003-2012 Medical Expenditures Panel Survey data for CSHCNs for cross-sectional pooled data analysis. Their conclusions suggest that disparities remain among high-need CSHCNs. Future research that focuses on a better understanding of how clinical settings tailor this care model, particularly to provide increased access and patient-centered care, is recommended.
AHRQ-funded; HS000032.
Citation: Perez Jolles M, Thomas KC .
Disparities in self-reported access to patient-centered medical home care for children with special health care needs.
Med Care 2018 Oct;56(10):840-46. doi: 10.1097/mlr.0000000000000978..
Keywords: Access to Care, Children/Adolescents, Disabilities, Disparities, Medical Expenditure Panel Survey (MEPS), Patient-Centered Healthcare, Vulnerable Populations
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.
AHRQ-funded; HS000032.
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 and 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.
AHRQ-funded; HS000063.
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
Lindly OJ, Thorburn S, Heisler K
Parents' use of complementary health approaches for young children with autism spectrum disorder.
Researchers conducted a study to better understand factors influencing parents' decision to use complementary health approaches (CHA) for children with autism spectrum disorder (ASD). CHA use was negatively associated with older child age and positively associated with parents' belief ASD has major consequences and medication use. Nine themes help explain these results.
AHRQ-funded; HS000063.
Citation: Lindly OJ, Thorburn S, Heisler K .
Parents' use of complementary health approaches for young children with autism spectrum disorder.
J Autism Dev Disord 2018 May;48(5):1803-18. doi: 10.1007/s10803-017-3432-6.
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Keywords: Autism, Children/Adolescents, Complementary and Alternative Medicine, Decision Making, 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
Lindly O, Thorburn S, Zuckerman K
Use and nondisclosure of complementary health approaches among US children with developmental disabilities.
The researchers aimed to profile the use and nondisclosure of complementary health approaches (CHAs) among US children with developmental disabilities (DDs). They found that nearly one-quarter (23 percent) of US children with DDs used CHAs. Among those with a personal health provider, 42 percent of parents did not disclose some or all CHAs used to the child's provider.
AHRQ-funded; HS000063.
Citation: Lindly O, Thorburn S, Zuckerman K .
Use and nondisclosure of complementary health approaches among US children with developmental disabilities.
J Dev Behav Pediatr 2018 Apr;39(3):217-27. doi: 10.1097/dbp.0000000000000536.
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Keywords: Children/Adolescents, Complementary and Alternative Medicine, Decision Making, Disabilities
Lewis AH, Chugh A, Sobotka SA
Behavioral outbursts in a child with a deletion syndrome, generalized epilepsy, global developmental delay, and failure to thrive.
This paper presents the case of a 7-year-old girl with 20q13.33 deletion and a history of generalized convulsive epilepsy who presented to the Developmental and Behavioral Pediatrics Clinic due to concerns about her behavioral outbursts in the context of overall delayed development.
AHRQ-funded; HS023007.
Citation: Lewis AH, Chugh A, Sobotka SA .
Behavioral outbursts in a child with a deletion syndrome, generalized epilepsy, global developmental delay, and failure to thrive.
Pediatr Ann 2018 Mar;47(3):e130-e34. doi: 10.3928/19382359-20180223-01..
Keywords: Case Study, Children/Adolescents, Disabilities, Genetics, Neurological Disorders
Magnusson DM, Minkovitz CS, Kuhlthau KA
AHRQ Author: Mistry KB
Beliefs regarding development and early intervention among low-income African American and Hispanic mothers.
This study sought to understand the role of health beliefs in shaping maternal decisions regarding help-seeking for children with developmental delay (DD) and explore differences between African American and Hispanic mothers. Five major themes emerged describing the role of maternal health beliefs in shaping key stages of the help-seeking pathway for children with DD. Differences between African American and Hispanic mothers are also described.
AHRQ-authored.
Citation: Magnusson DM, Minkovitz CS, Kuhlthau KA .
Beliefs regarding development and early intervention among low-income African American and Hispanic mothers.
Pediatrics 2017 Nov;140(5):pii: e20172059. doi: 10.1542/peds.2017-2059.
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Keywords: Children/Adolescents, Decision Making, Disabilities, Low-Income, Racial and Ethnic Minorities
Ing C, Wall MM, DiMaggio CJ
Latent class analysis of neurodevelopmental deficit after exposure to anesthesia in early childhood.
Although some studies have reported an association between early exposure to anesthesia and surgery and long-term neurodevelopmental deficit, the clinical phenotype of children exposed to anesthesia is still unknown. This study’s results suggest that in evaluating children exposed to surgery and anesthesia at an early age, the phenotype of interest may be children with deficits primarily in language and cognition, and not children with broad neurodevelopmental delay or primarily behavioral deficits.
AHRQ-funded; HS022941.
Citation: Ing C, Wall MM, DiMaggio CJ .
Latent class analysis of neurodevelopmental deficit after exposure to anesthesia in early childhood.
J Neurosurg Anesthesiol 2017 Jul;29(3):264-73. doi: 10.1097/ana.0000000000000303.
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Keywords: Adverse Drug Events (ADE), Children/Adolescents, Disabilities, Medication, Patient Safety
Carmody D, Pastore AN, Landmeier KA
Patients with KCNJ11-related diabetes frequently have neuropsychological impairments compared with sibling controls.
This study compared neurodevelopmental outcomes in patients with KCNJ11 mutations and their sibling controls. It found that patients with KCNJ11-related diabetes without global developmental delay had significant differences compared with sibling controls on a range of assessments including IQ, measures of academic achievement and executive function.
AHRQ-funded; HS023007.
Citation: Carmody D, Pastore AN, Landmeier KA .
Patients with KCNJ11-related diabetes frequently have neuropsychological impairments compared with sibling controls.
Diabet Med 2016 Oct;33(10):1380-6. doi: 10.1111/dme.13159.
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Keywords: Children/Adolescents, Diabetes, Disabilities, Neurological Disorders, Newborns/Infants
Navarra AM, Schlau R, Murray M
Assessing nursing care needs of children with complex medical conditions: The Nursing-Kids Intensity of Care Survey (N-KICS).
The researchers designed and tested the Nursing-Kids Intensity of Care Survey (N-KICS) tool and describe intensity of nursing care for children with complex medical conditions. Their psychometric evaluation confirmed an acceptable standard for reliability and validity and feasibility. Intensity scores were highest for nursing care related to infection control, medication administration, nutrition, diaper changes, hygiene, neurological and respiratory support, and standing program.
AHRQ-funded; HS021470.
Citation: Navarra AM, Schlau R, Murray M .
Assessing nursing care needs of children with complex medical conditions: The Nursing-Kids Intensity of Care Survey (N-KICS).
J Pediatr Nurs 2016 May-Jun;31(3):299-310. doi: 10.1016/j.pedn.2015.11.012.
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Keywords: Children/Adolescents, Chronic Conditions, Disabilities, Long-Term Care, Nursing, Vulnerable Populations
Johnco C, Lewin AB, Salloum A
Adverse prenatal, perinatal and neonatal experiences in children with anxiety disorders.
The authors examined the incidence of adverse prenatal, perinatal, and neonatal experiences among children with anxiety disorders. They found several associations between neonatal complications and subsequent clinical symptomology, including attention deficit hyperactivity disorder and depressive comorbidity, anxiety severity and functional impairment.
AHRQ-funded; HS018665.
Citation: Johnco C, Lewin AB, Salloum A .
Adverse prenatal, perinatal and neonatal experiences in children with anxiety disorders.
Child Psychiatry Hum Dev 2016 Apr;47(2):317-25. doi: 10.1007/s10578-015-0569-4.
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Keywords: Anxiety, Children/Adolescents, Disabilities, Pregnancy
Okumura MJ, Saunders M, Rehm RS
The role of health advocacy in transitions from pediatric to adult care for children with special health care needs: bridging families, provider and community services.
The aim of this study was to develop a theoretical understanding of how family, healthcare providers, and community supports can assist youth and young adults with special healthcare needs (YASHCN) during the transition from pediatric to adult healthcare and services. Transition Advocacy consists of the presence of, or need for, a healthcare advocate who did or can assist the YASHCN with the healthcare transition, particularly to navigate complex health or community services. If advocates were identified, youth were more likely to obtain needed services.
AHRQ-funded; HS017716.
Citation: Okumura MJ, Saunders M, Rehm RS .
The role of health advocacy in transitions from pediatric to adult care for children with special health care needs: bridging families, provider and community services.
J Pediatr Nurs 2015 Sep-Oct;30(5):714-23. doi: 10.1016/j.pedn.2015.05.015.
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Keywords: Children/Adolescents, Community-Based Practice, Disabilities, Health Services Research (HSR), Young Adults