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Understanding Barriers to Early Intervention Services for Preterm Infants: Lessons From Two States.

ABSTRACT: To explore existing barriers and challenges to Early Intervention (EI) referral, enrollment, and service provision for very low birth weight (VLBW; <1500 g) infants.We conducted 10 focus groups with parents of VLBW children (n = 44) and 32 interviews with key informants from EI (n = 7), neonatal intensive care units (n = 17), and outpatient clinics (n = 8) at 6 sites in 2 states. We used grounded theory to identify themes about gaps in services.Both parents and providers found EI helpful. However, they also identified gaps in the current EI system at the levels of eligibility, referral, family receptivity, and service provision and coordination with medical care. Inadequate funding and variable procedures for evaluation may affect children's eligibility. Referrals can be missed as a result of simple oversight or communication failure among hospitals, EI, and families; referral outcomes often are not formally tracked. Families may not be receptive to services as a result of wariness of home visits, social stressors, denial about potential developmental delays, or lack of understanding of the benefits of EI. Once a child is deemed eligible, services may be delayed or terminated early, and EI providers may have little specialized training. Communication and coordination with the child's medical care team is often limited.Systemic barriers, including funding and staffing issues, state and federal regulations, and communication with families and medical providers, have led to gaps in the EI system. The chronic care model may serve as a framework for integrating community-based interventions like EI with medical care for VLBW children and other vulnerable populations.

SUBMITTER: Little AA

PROVIDER: S-EPMC4862651 | biostudies-literature | 2015 Jul-Aug

REPOSITORIES: biostudies-literature

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Understanding Barriers to Early Intervention Services for Preterm Infants: Lessons From Two States.

Little Alison A AA Kamholz Karen K Corwin Brian K BK Barrero-Castillero Alejandra A Wang C Jason CJ

Academic pediatrics 20150701 4

<h4>Objective</h4>To explore existing barriers and challenges to Early Intervention (EI) referral, enrollment, and service provision for very low birth weight (VLBW; <1500 g) infants.<h4>Methods</h4>We conducted 10 focus groups with parents of VLBW children (n = 44) and 32 interviews with key informants from EI (n = 7), neonatal intensive care units (n = 17), and outpatient clinics (n = 8) at 6 sites in 2 states. We used grounded theory to identify themes about gaps in services.<h4>Results</h4>B ...[more]

PMID: 26142069

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Project description:BackgroundPreterm infants are high risk for delayed neurodevelopment. The main goal is to develop a program of early intervention for very preterm infants that allows families to apply it continuously at home, and quantify the results of early parental stimulation on improvement of cognition and motor skills.MethodsRandomized clinical Trial including inborn preterm infants with gestational age less than 32 weeks or birth weight less than 1500 g at 48 h after birth. Eligible for begin the intervention up to 7 days after birth. Study Protocol approved by the Brazilian national Committee of ethics in Research and by the institutional ethics committee. Intervention group (IG): skin-to skin care by mother (kangaroo care) plus tactile-kinesthetic stimulation by mothers from randomization until hospital discharge when they receive a program of early intervention with 10 parents' orientation and a total of 10 home visits independently of the standard evaluation and care that will be performed. Systematic early intervention program will be according to developmental milestones, anticipating in a month evolutionary step acquisition of motor and / or cognitive expected for corrected age. Active comparator with a Conventional Group (CG): standard care according to the routine care of the NICU and their needs in the follow up program. Neurodevelopment outcome with blinded evaluations in both groups between 12 and 18 months by Bayley Scales of Infant and Toddler Development third edition and Alberta Motor Infant scale will be performed. All evaluations will be conducted in the presence of parents or caregivers in a safe room for the child move around during the evaluation.DiscussionIf we can show that a continuous and global early intervention at home performed by low income families is better than the standard care for very preterm infants, this kind of program may be applied elsewhere in the world. We received grants by Bill and Melinda Gates Foundation, DECIT, Cnpq and Health Ministry. Grand Challenges Brazil: All Children Thriving.Trial registrationThe study was restrospectively registered in ClinicalTrials.gov . in July 15 2016 ( NCT02835612 ).

Project description:BACKGROUND: Early intervention (EI) services are designed to promote the development of skills and enhance the quality of life of infants and toddlers who have been identified as having a disability or developmental delay, enhance capacity of families to care for their child with special needs, reduce future educational costs, and promote independent living (NECTAC, 2011). EI services are regulated by Part C of the Individuals with Disabilities Education Improvement Act (IDEA); however, personnel shortages, particularly in rural areas, limit access for children who qualify. Telehealth is an emerging delivery model demonstrating potential to deliver EI services effectively and efficiently, thereby improving access and ameliorating the impact of provider shortages in underserved areas. The use of a telehealth delivery model facilitates inter-disciplinary collaboration, coordinated care, and consultation with specialists not available within a local community. METHOD: A survey sent by the National Early Childhood Technical Assistance Center (NECTAC) to IDEA Part C coordinators assessed their utilization of telehealth within states' IDEA Part C programs. Reimbursement for provider type and services and barriers to implement a telehealth service delivery model were identified. RESULTS: Representatives from 26 states and one jurisdiction responded to the NECTAC telehealth survey. Of these, 30% (n=9) indicated that they are either currently using telehealth as an adjunct service delivery model (n=6) or plan to incorporate telehealth within the next 1-2 years (n=3). Identified telehealth providers included developmental specialists, teachers of the Deaf/Hard of Hearing (DHH), speech-language pathologists, occupational therapists, physical therapists, behavior specialists, audiologists, and interpreters. Reimbursement was variable and included use of IDEA Part C funding, Medicaid, and private insurance. Expressed barriers and concerns for the implementation of telehealth as a delivery model within Part C programming included security issues (40%; n=11); privacy issues (44%; n=12); concerns about quality of services delivered via telehealth (40%; n=11); and lack of evidence to support the effectiveness of a telehealth service delivery model within IDEA Part C programming (3%; n=1). Reimbursement policy and billing processes and technology infrastructure were also identified as barriers impacting the implementation of telehealth programming. CONCLUSIONS: Provider shortages impact the quantity and quality of services available for children with disabilities and developmental delay, particularly in rural areas. While many states are incorporating telehealth within their Early Intervention (IDEA Part C) services in order to improve access and overcome personnel shortages, barriers persist. Policy development, education of stakeholders, research, utilization of secure and private delivery platforms, and advocacy may facilitate more widespread adoption of telehealth within IDEA Part C programs across the country.

Project description:BackgroundPrevious studies demonstrated a short-term relationship between infant sleep-wake states and oral feeding performance, with state being an indication of infants' neurobehavioral readiness for feeding. However, the relationship between sleep-wake states and feeding skills has not been evaluated longitudinally during hospitalization.ObjectivesThe purpose of this study was to examine preterm infants' sleep-wake state developmental trajectories and their associations with feeding progression during hospitalization.MethodsThis descriptive and exploratory study was a secondary analysis using data from a longitudinal two-group, randomized controlled trial evaluating the effects of early and late cycled light on health and developmental outcomes among extremely preterm infants who were born ≤28 weeks of gestational age. Sleep-wake states were assessed for two 2-hour interfeeding periods per day (day and night hours), 30 weeks postmenstrual age, and every 3 weeks until discharge. Occurrences of active sleep, quiet sleep, and waking were recorded every 10 seconds. Feeding progression was assessed based on an infant's postmenstrual age at five milestones: first enteral feeding, full enteral feeding, first oral feeding, half oral feeding, and full oral feeding. Trajectory analyses were used to describe developmental changes in sleep-wake states, feeding progression patterns, and associations between feeding progression and sleep-wake trajectories.ResultsActive sleep decreased while waking, and quiet sleep increased during hospitalization. Two distinct feeding groups were identified: typical and delayed feeding progression. In infants with delayed feeding progression, rates of active and quiet sleep development during the day were delayed compared to those with typical feeding progression. We also found that infants with delayed feeding progression were more likely to be awake more often during the night compared to infants with typical feeding progression.DiscussionsFindings suggest that delays in sleep-wake state development may be associated with delays in feeding progression during hospitalization. Infants with delayed feeding skill development may require more environmental protection to further support their sleep development.

Project description:BACKGROUND:There are limited data to inform the choice between early treatment with continuous positive airway pressure (CPAP) and early surfactant treatment as the initial support for extremely-low-birth-weight infants. METHODS:We performed a randomized, multicenter trial, with a 2-by-2 factorial design, involving infants who were born between 24 weeks 0 days and 27 weeks 6 days of gestation. Infants were randomly assigned to intubation and surfactant treatment (within 1 hour after birth) or to CPAP treatment initiated in the delivery room, with subsequent use of a protocol-driven limited ventilation strategy. Infants were also randomly assigned to one of two target ranges of oxygen saturation. The primary outcome was death or bronchopulmonary dysplasia as defined by the requirement for supplemental oxygen at 36 weeks (with an attempt at withdrawal of supplemental oxygen in neonates who were receiving less than 30% oxygen). RESULTS:A total of 1316 infants were enrolled in the study. The rates of the primary outcome did not differ significantly between the CPAP group and the surfactant group (47.8% and 51.0%, respectively; relative risk with CPAP, 0.95; 95% confidence interval [CI], 0.85 to 1.05) after adjustment for gestational age, center, and familial clustering. The results were similar when bronchopulmonary dysplasia was defined according to the need for any supplemental oxygen at 36 weeks (rates of primary outcome, 48.7% and 54.1%, respectively; relative risk with CPAP, 0.91; 95% CI, 0.83 to 1.01). Infants who received CPAP treatment, as compared with infants who received surfactant treatment, less frequently required intubation or postnatal corticosteroids for bronchopulmonary dysplasia (P<0.001), required fewer days of mechanical ventilation (P=0.03), and were more likely to be alive and free from the need for mechanical ventilation by day 7 (P=0.01). The rates of other adverse neonatal outcomes did not differ significantly between the two groups. CONCLUSIONS:The results of this study support consideration of CPAP as an alternative to intubation and surfactant in preterm infants. (ClinicalTrials.gov number, NCT00233324.)

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Understanding Barriers to Early Intervention Services for Preterm Infants: Lessons From Two States.

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Understanding Barriers to Early Intervention Services for Preterm Infants: Lessons From Two States.

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