Dev Med Child Neurol
August 2024
Aim: To examine the Modified Checklist for Autism in Toddlers, Revised, with Follow-Up (M-CHAT-R/F), with follow-up screening and diagnostic outcomes for children born preterm. A secondary aim was to examine diagnostic evaluation attendance after screening to inform clinical practice.
Method: Using a cross-sectional design, 9725 toddlers (4951 males; 4774 females) whose gestational age was reported were screened at 15-month, 18-month, or 24-month well-child visits; screen-positive children were invited for an autism evaluation.
Objective: Children and youth with special health care needs (CYSHCN) require additional considerations for staying safe in emergencies. Our team of clinicians and preparedness professionals developed and tested a virtual home preparedness intervention (VHPI) in families with CYSHCN receiving care in a statewide medical home network.
Methods: The VHPI comprised 1) a pre/post interview covering fire safety, emergency evacuation, sheltering in place, and informing emergency responders of the child/youth's care needs; 2) a resource packet containing emergency planning templates and information on local supports; and 3) individualized referrals coordinated through the medical home/community partners.
With advances in medical care, more youth with intellectual and/or developmental disabilities (IDD) are transitioning into adulthood. Patient- and family-centered, integrated care is warranted around this time of transition. Support teams (including the youth, caregivers, teachers, and pediatricians) should engage in transition planning, ideally starting between 12 and 14 years of age, to identify and develop resources to support the maturing youth's capacity for independent decision-making.
View Article and Find Full Text PDFIn 2020, midway through the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity project, the coronavirus disease 2019 pandemic erupted and caused significant disruptions for the 10 participating state teams, the project leadership, and collaborative partner organizations. Clinics shut down for in-person care, a scramble ensued to quickly leverage telehealth to fill the gap, and the trauma caused by anxiety, isolation, and exhaustion affected the health and wellbeing of children, families, and clinicians alike. We conducted a series of key informant interviews and surveys, alongside other process measures, to learn from state teams what it was like "on the ground" to try to continue improving care delivery, child quality of life, and family wellbeing under such upheaval.
View Article and Find Full Text PDFChildren and youth with special healthcare needs (CYSHCN) are at disproportionate risk of harm from widespread disasters and from life-safety emergencies. These risks may be mitigated by providing preparedness training and support to family caregivers. We conducted a scoping review to identify and map the scholarly literature on home-focused preparedness of families with CYSHCN.
View Article and Find Full Text PDFBackground And Objectives: Children and youth with special health care needs (CYSHCN) commonly experience mental health concerns, but conditions are often not identified or treated within primary care. Mental health care is often not a primary focus of pediatric primary care, but the medical home model has potential to address these concerns more adequately. The purpose of this study is to examine the relationship between the medical home and use of mental health services in CYSHCN.
View Article and Find Full Text PDFObjectives: Postdischarge phone calls can identify discharge errors and gather information following hospital-to-home transitions. This study used the multisite Project IMPACT (Improving Pediatric Patient Centered Care Transitions) dataset to identify factors associated with postdischarge phone call attempt and connectivity.
Methods: This study included 0- to 18-year-old patients discharged from 4 sites between January 2014 and December 2017.
Children and youth with special healthcare needs are at risk for severe consequences during infectious disease emergencies. Messages for parents and caregivers from trusted sources, via preferred channels, that contain the information they need, may improve health outcomes for this population. In this mixed methods study, we conducted a survey (N = 297) and 80 semistructured interviews, with 70 caregivers of children and youth and 10 young adults with special healthcare needs, between April 2018 and June 2019 in Pennsylvania.
View Article and Find Full Text PDFIntroduction: In light of persistent health inequities, this commentary describes the critical role of maternal and child health (MCH) graduate training in schools and programs of public health (SPPH) and illustrates linkages between key components of MCH pedagogy and practice to 2021 CEPH competencies.
Methods: In 2018, a small working group of faculty from the HRSA/MCHB-funded Centers of Excellence (COEs) was convened to define the unique contributions of MCH to SPPH and to develop a framework using an iterative and consensus-driven process. The working group met 5 times and feedback was integrated from the broader faculty across the 13 COEs.
Caregiving encompasses the nurturing, tasks, resources, and services that meet the day-to-day needs of children and youth with special health care needs (CYSHCN) at home. Many gaps exist in the strategies currently offered by the health care system to meet the caregiving needs of CYSHCN. The work of family caregivers of CYSHCN is known to be extensive, but it is so poorly understood that it has been described as "invisible".
View Article and Find Full Text PDFBackground: Implementation facilitation is an effective strategy to support the implementation of evidence-based practices (EBPs), but our understanding of multilevel strategies and the mechanisms of change within the "black box" of implementation facilitation is limited. This implementation trial seeks to disentangle and evaluate the effects of facilitation strategies that separately target the care team and leadership levels on implementation of a collaborative care model in pediatric primary care. Strategies targeting the provider care team (TEAM) should engage team-level mechanisms, and strategies targeting leaders (LEAD) should engage organizational mechanisms.
View Article and Find Full Text PDFMaternal and child health (MCH), as a core sub-field of public health, continues to be an essential area in which additional workforce development and investment are needed. Recent public health workforce assessments in the United States reveal there will be a significant number of vacancies in MCH public health positions in the near future, creating the need for a well-trained and skilled public health MCH workforce. In order to address this potential critical workforce gap, the U.
View Article and Find Full Text PDFPurpose: The objective of this study was to describe the knowledge, attitudes, and practices related to caring for youth with SB within a statewide pediatric primary care medical home network.
Methods: Health care professionals who were members of the Pennsylvania Medical Home Program (PAMHP) statewide network were surveyed on sociological demographics, confidence in and knowledge of topics that impact the spina bifida (SB) population, education on SB, designating responsibility of care, tasks completed in the office, and transition from pediatric to adult care from October 2016 through November 2016.
Results: Among 67 respondents, 78%believed counseling families/caregivers about the impact of SB on everyday life was a shared responsibility between primary care physicians (PCP) and SB clinics.
Curr Opin Pediatr
December 2021
Purpose Of Review: Metabolic bone disease of prematurity, commonly referred to as osteopenia of prematurity, remains prevalent in the neonatal intensive care unit (NICU) despite recent medical advances. It is estimated that up to 60% of extreme low birth weight and 20% of very low-birth-weight infants have metabolic bone disease of prematurity. Often silent, it typically presents with poor growth, increased ventilator dependency and fractures.
View Article and Find Full Text PDFMatern Child Health J
December 2021
Objectives: The caregiving experiences and unique health needs of male caregivers of children and youth with special health care needs (CYSHCN) are not well described. This study seeks to understand potential unmet health needs and attitudes toward supportive resources from the perspective of a sample of male caregivers of CYSHCN.
Methods: This mixed-methods study recruited a convenience sample of 30 men with CYSHCN who receive care for a chronic medical condition from primary care medical homes in Pennsylvania.
Objective: To evaluate family-reported caregiver experiences and health care utilization of patients enrolled in the Pennsylvania Medical Home Program (PA-MHP) statewide practice network and compare results to PA-MHP practices' Medical Home Index (MHI) scores. We hypothesized families enrolled in higher-scoring patient-and-family-centered medical homes (PCMH) on completed MHIs would report decreased caregiver burden and improved health care utilization.
Methods: We analyzed surveys completed by families receiving care coordination services in PA-MHP's network and each practice's mean MHI score.
Objectives: A medical home is a model of patient-centered, comprehensive care recommended by the American Academy of Pediatrics for all children. The aims of this study were (1) to determine if the presence of a medical home is associated with improved health service outcomes of children with autism, and (2) to determine if the presence of a medical home is associated with improved key functional outcomes in children with autism.
Methods: This study used data from the 2016-2017 National Survey of Children's Health.
Purpose Of Review: Postpartum depression (PPD) negatively impacts caregivers, infants, siblings, and entire families. Mothers with infants admitted to the neonatal intensive care unit (NICU) face additional risk for PPD, coupled with risk factors extending beyond a NICU admision. The novelty of this review is the focus on maternal PPD for mothers with infants admitted to the NICU.
View Article and Find Full Text PDFPurpose Of Review: The purpose of this review is to describe the role, responsibilities, hiring, training, and retention of community health workers (CHWs) on clinical care teams in the United States.
Recent Findings: CHWs are unique members of clinical care teams because of their ability to foster a deep trust and understanding with patients by sharing similar life experiences, participating in home visits, and providing constant support and advocacy. By partnering with CHWs, other clinical care members also gain a better understanding of their patients allowing them to deliver more culturally competent, patient/family-centered care.
This study sought to understand caregiver needs of children with tracheostomies (CWT) living at home and inform development of standardized tracheostomy simulation training curricula. Long-term goals are decreasing hospital readmissions following tracheostomy placement and improving family experiences while implementing a medical home model. We recruited caregivers of CWT and conducted semistructured interviews, subsequently recorded, transcribed, and analyzed for emerging themes using NVivo.
View Article and Find Full Text PDFCare coordination (CC) facilitates access to resources/services for children/youth with special health care needs (CYSHCN). We conducted a cross-sectional analysis of the 2009-2010 National Survey of CSHCN to examine socioeconomic factors related to report of receiving adequate CC services for CYSHCN. Descriptive statistics were used to describe sociodemographic characteristics of respondents and examine socioeconomic factors.
View Article and Find Full Text PDFBackground: People with SMI have often been excluded in advocacy efforts focused on physical health, health care and health and social policy.
Objective: Following a Photovoice project focused on barriers to healthy eating and physical activity in urban neighbourhoods, participant-researchers were invited to present their insights in community advocacy settings. The purpose of this study was to explore the feasibility and participant-researchers' experience of these community advocacy activities.
U.S.-born citizens are victims of human trafficking typically exploited through sex trafficking.
View Article and Find Full Text PDFBackground: People with mental illness in the United States are almost twice as likely to be obese compared with those without a mental illness. Lifestyle factors, such as poor dietary choices and physical inactivity, are often cited as causes of obesity in this population, which limits the response to the obesity epidemic primarily to behavioral change interventions. In response, this project is grounded in a human rights framework to assure that the people most affected by the problem are included in understanding and addressing the problem.
View Article and Find Full Text PDFObjective: Typical primary care practices are often not equipped to meet the medical, developmental or social needs of infants discharged from a neonatal intensive care unit (NICU). These needs are exacerbated for infants and caregivers residing in poverty. This article discusses a multidisciplinary, family-centered medical home designed to address the needs of this special population.
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