Background: Children with special health care needs (CSHCN) have worse health outcomes and satisfaction compared with children with typical needs. Although individual characteristics influence satisfaction and family-centered care, additional effects of health insurance and state child health policies are unknown.
Objectives: To determine if satisfaction and family-centered care varied among CSHCN, after adjusting for individual characteristics, according to insurance type and state child health policies.
Methods: We performed descriptive and multivariate analyses by using demographic, insurance, and satisfaction data from the 2006 National Survey of Children With Special Health Care Needs (N = 40723). Additional state data included Medicaid and State Children's Health Insurance Program (SCHIP) characteristics and the supply of pediatricians. We supplemented the national findings with survey data from Florida's SCHIP comprehensive care program (CMS-Duval ["Ped-I-Care"]) for CSHCN (N = 300).
Results: Nationally, 59.8% of parents were satisfied with their child's health services, and two thirds (65.7%) received family-centered care. Adjusting for individual predictors, those uninsured and those with public insurance were less satisfied (odds ratios [ORs]: 0.45 and 0.83, respectively) and received less family-centered care (ORs: 0.43 and 0.80, respectively) than privately insured children. Of note, satisfaction increased with state Medicaid spending. Survey data from Ped-I-Care yielded significantly higher satisfaction (91.7%) compared with national levels of satisfaction in the SCHIP (54.2%) and similar rates of family-centered care (65.6%). These results suggest that satisfaction is based more on experiences with health systems, whereas family-centered care reflects more on provider encounters.
Conclusions: Insurance type affects both satisfaction and family-centered care for CSHCN, and certain state-level health care characteristics affect satisfaction. Future studies should focus on interventions in the health care system to improve satisfaction and patient encounters for family-centered care.
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http://dx.doi.org/10.1542/peds.2009-1255N | DOI Listing |
Res Involv Engagem
January 2025
Department of Public Health, Faculty of Health, Aarhus University, Aarhus, Denmark.
Background: Involving parents in decisions about the care of their infant is common practice in most neonatal intensive care units. However, involvement is less common in neonatal research and a gap appears to exist in understanding the process of patient and public involvement. The aim of this study was to explore parents and researchers' experiences of patient and public involvement in a neonatal research project.
View Article and Find Full Text PDFIssues Ment Health Nurs
January 2025
School of Nursing, University of Nevada, Las Vegas, Nevada, USA.
Infant neonatal intensive care unit (NICU) hospitalization increases maternal risk for post-traumatic stress disorder (PTSD) symptoms, which may negatively impact mother-child attachment and infant growth and development. Prior studies have documented positive associations between unmet parenting expectations and adverse maternal psychological outcomes, including post-NICU discharge. However, no studies have yet explored how unmet parenting expectations may be associated with maternal NICU-related PTSD symptoms.
View Article and Find Full Text PDFPhys Occup Ther Pediatr
January 2025
Graduate Program in Rehabilitation Sciences, School of Physical Education, Physical Therapy and Occupational Therapy, Universidade Federal de Minas Gerais, Minas Gerais, Brazil.
Aims: To evaluate attendance rates, daily therapy engagement, parents' perceptions regarding feasibility, acceptability, family-centeredness, and individualized outcomes of a collaborative telehealth-based physical therapy intervention for children with disabilities.
Method: Mixed-method design involving 15 families and 17 children with disabilities (range age 4-90 months). Parents recorded time spent on home activities.
J Autism Dev Disord
January 2025
Department of Public Health Sciences, Clemson University, Clemson, SC, USA.
Youth with autism spectrum disorder (ASD) are at nearly twice the risk of experiencing obesity, compared to youth without ASD. Wellness Education to Create Healthy habits and Actions to Thrive (WE CHAT) is a novel chatbot that engages participants to enhance primary care delivery and associated care coordination services through mobile health (mHealth) technology focused on social determinants of health (SDOH) and social-emotional health. This study examines multiple perspectives regarding the development and implementation of innovative mHealth technology among youth with ASD.
View Article and Find Full Text PDFJ Pediatr Nurs
January 2025
Dalhousie University, Department of Critical Care, Halifax, Nova Scotia, Canada. Electronic address:
Objective: To better understand critically ill children's lived experiences with family presence in the pediatric intensive care unit (PICU).
Study Design: This qualitative, interpretive phenomenological study is grounded in a Childhood Ethics ontology. We recruited children (aged 6-17 years) admitted to one of four participating Canadian PICUs between November 2021-July 2022 using maximum variation sampling.
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